Health Progress - July-August, 2019

JOURNAL OF THE CATHOLIC HEALTH ASSOCIATION OF THE UNITED STATES

HEALTH PROGRESS JULY – AUGUST 2019

Young People

at Risk

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WE HOLD A TREASURE

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s I finish my time as CHA’s president and now 54 years in health care, in positions ranging from nurse aide, staff nurse, nursing supervisor, vice president for nursing, hospital president, board chair and CHA president and chief executive officer, I am more convinced than ever that we in Catholic health care hold a treasure.

Over the centuries, we have been the visible sign of God’s love for the sick, for welcoming new life to our world and for accompanying the dying in their journey back to God. Our ministry gives credibility to the church’s claim to be following her Lord’s admonition to care for the sick and vulnerable.

SR. CAROL Over those same centuries, KEEHAN, DC there have been vast changes in our clinical care and delivery systems. What has not changed is why we do what we do.

We have defied conventional wisdom in age after age. At our best, we have sought out the sickest, most challenging and most vulnerable in every community. We have formed tens of thousands of health care workers from the most highly skilled professionals to the essential rank and file staff. We have formed them not only in the skills needed to do their jobs, but in an understanding and appreciation of the dignity of those they serve and the greatness of their calling.

In every age, there have been the naysayers, those who say the glory days are behind us, today’s environment makes us obsolete. Pope Francis has an incredible response to this: “The memory of this long history of service to the sick is cause for rejoicing on the part of the Christian community, and especially those presently engaged in this ministry. Yet we must look to the past above all to let it enrich us. We should learn the lesson it teaches us about the self-sacrificing generosity of many founders of institutes in the service of the infirmed, the creativity, prompted by charity, of many initiatives undertaken over the centuries, and the commitment to scientific research as a means of offering innovative and reliable treatments to the sick. This legacy of the past helps us to build a better future, for example, by shielding Catholic hospitals from a business mentality that is seeking worldwide to turn health care into a profit-making enterprise which ends up discarding the poor.” (Pope Francis, Message for World Day of the Sick, 2018) Our challenge today is whether we are so convinced of the treasure we hold and its importance

that we believe with Pope Francis that “this legacy of the past helps us to build a better future.”

Health care is very difficult today, but it has always been difficult. We have some eternal issues and some unique issues to deal with. At times it can seem overwhelming.

We also have some eternal opportunities and unique opportunities. We are part of a historic transformation, moving the church’s health ministry from a centuries’ old structure embedded in single religious communities to structures built by combining those ministries and entrusting the responsibility for them to lay people who have been prepared and welcome the opportunity to live their baptismal calling more fully. We also recognize that we are doing it at a time of significant turmoil in the health care industry.

It is imperative that we appreciate the splendor of what is happening every day in our facilities if we are going to be energized and creative enough to take Catholic health care to the next milestone. Only knowing how much authentic Catholic health ministry means to so many today in our facilities gives our minds and hearts that essential insight.

The late Cardinal Joseph Bernardin wrote as he was dying of pancreatic cancer a beautiful pastoral letter on health care. He was not only being treated in a Catholic facility but was talking with so many others being treated there as well. He talked about what a grace that was. He also raised concern about how in today’s world we could lose our way. After affirming what a treasure our ministry is, he said “it would be a tragedy if we did not have the courage to move beyond the past and have the creativity to address the future.”

I know and believe in the people of Catholic health care. We can take our critical ministry to new heights. We also can help change the current perception of our church in the face of the abuse crisis and advance the quality and availability of health care for millions. What greater opportunity could God possibly have given us?

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100th ANNIVERSARY

YOUNG PEOPLE AT RISK

64 CHA’S COMMUNITY BENEFIT EVOLUTION REAPS HEALTH CARE RESULTS JULIE TROCCHIO, BSN, MS

DEPARTMENTS 2 EDITOR’S NOTE MARY ANN STEINER 69 MISSION AND LEADERSHIP Drawing on God’s Love to Minister at the Margins BRIAN SMITH, MS, MA, MDiv 71 ETHICS What Would Martha Do? Three Exemplars of Virtue in John’s Gospel NATHANIEL BLANTON HIBNER, PhD 73 HEALTH EQUITY Reducing Disparities in Eldercare KATHY CURRAN, JD 76 COMMUNITY BENEFIT Social Determinants of Health: Moving Beyond the Buzzwords HOWARD GLECKMAN

Illustrations by Napal Naps 4 WHAT’S NEXT WHEN ‘JUST SAY NO’ DOESN’T WORK Fred Rottnek, MD, MAHCM 10 LIMBO REALLY EXISTS: UNDOCUMENTED YOUTH AT RISK Mark Kuczewski, PhD; Johana Mejias-Beck, MD; Amy Blair, MD and Matthew Fitz, MD

78 THINKING GLOBALLY A Conversation with Catholic Relief Services: Working with At-Risk Youth in the Caribbean and Latin America BRUCE COMPTON

16 ASYLUM SEEKERS FIND SAFE HAVEN John Morrissey 21 POPE FRANCIS — FINDING GOD IN DAILY LIFE

22 CARING FOR THE MEDICALLY COMPLEX CHILD Robert A. Bergamini, MD

81 EXECUTIVE SUMMARIES 84 PRAYER SERVICE

28 HOME VISITS SET STAGE FOR HEALTH Allen Sánchez, STB, MA 34 AID GROUPS SEEK TO REDUCE ORPHANAGES, EXPAND FAMILY-BASED CARE GLOBALLY Shannon Senefeld, PhD, Philip Goldman and Anne Smith

Jim West/Alamy Stock Photo

38 CHRISTUS MOVES BEYOND HOSPITAL WALLS TO TACKLE ASTHMA Sue Johnson, RN 41 RESPONDING TO TRANSGENDER YOUTH WITH DIGNITY AND RESPECT Erin Archer Kelser, RN 48 PROTECTING YOUNG PEOPLE FROM HUMAN TRAFFICKING Sr. Rosemary Donley, SC, PhD, APRN, FAAN and Carmen Kiraly, PhD, APRN 56 IMPROVING THE RESPONSE FOR YOUNG PEOPLE WITH PSYCHOSIS Jessica M. Pollard, PhD

IN YOUR NEXT ISSUE

62 REFLECTION: ANXIETY — THE HIDDEN DISEASE Steve Tappe, MTS and Laura Tappe

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HOUSING AND TRANSPORTATION

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EDITOR’S NOTE

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wo paintings hang on either side of the sanctuary of my parish church. The one on the left is a beautiful Madonna and Child. The rich, dark palette would set the scene for a predictably serene Virgin and infant were it not for the toddler squirming to get off his mother’s lap and out of her arms. Her face is lovely, but there is a trace of the consternation parents feel when the beloved child dispenses with comfort and security for action and adventure.

The painting on the right is a vivid rendering of Abraham ready to sacrifice his son Isaac on Mount Moriah. It’s the moment before divine intervention, so Abraham’s determined face and muscular body are poised to carry out God’s unfathomable MARY ANN command. Isaac’s expression is STEINER frozen at what he has just figured out, his body limp with terror.

As a mother and grandmother, I’ve sat hours in that church’s hard wood pews, wondering about the extremes of those two pictures. The child who can’t get away fast enough to check out what’s on the other side of the room or the other side of the world. Will they come back wiser or wounded, will they come back at all? Or the child in mortal danger from the one person they never expected to harm them, much less be the agent of execution.

What resides in the chasm between the risky behaviors young people confront each day and the individuals who intend them harm? There is chronic disease aggravated by poor housing or compromised climate, addiction and mental illness, trafficking for sex work or forced labor, the perils of abuse for migrant children and unaccompanied minors, health care that can’t heal itself, much less the children who don’t have access to the services they truly need and deserve. Suffer the little children, indeed.

Young People at Risk is the special topic for this issue of Health Progress. Our subjects include very young children who suffer from multiple medical conditions or poor prognoses due to poor or negative social determinants of health, as well as youth transitioning to adulthood when vulnerabilities to mental illness, substance use disorders, gender dysphoria and social pressures are heightened and especially dangerous. The magazine also points to promising advances in prevention, early diagnosis and new models of care for young people with chronic and behavioral health conditions. We are very grateful to each of the

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authors who took on these challenging subjects.

Thanks especially to Fred Rottnek, MD; he wrote a provocative article on the possibilities of harm reduction in an opioid crisis and served as guest co-editor for the entire magazine.

To continue the celebration of Health Progress’ 100th anniversary year, we asked Julie Trocchio, CHA’s senior director of community benefit, to tell the story of how tremendous support of and opposition to the tax-exempt status of nonprofit health care organizations led to the development of community benefit standards for hospitals and health systems. Trocchio’s article, which begins on page 64, details important moments in the development of community benefit and highlights seminal issues of Health Progress that helped clarify and promote the important work being done.

Your magazine opens with a farewell message from Sr. Carol Keehan, DC, whose tenure as the Catholic Health Association’s president and chief executive officer ends June 30. Those are not happy words for me to write or you to read. And I was even less happy when I realized that Sr. Carol’s beautiful letter was landing in one of the toughest issues of Health Progress we’ve put out in a while.

But no one knows the tough subjects of childhood or realistic hopes for families more than Sr. Carol.

She started her health care career as a maternal and child health nurse and continues to work for children and families here and in Bethlehem and Rome. Her leadership in protecting the Children’s Health Insurance Program (CHIP) and Medicaid to provide health coverage for more children has been long-standing and vigorous. No one speaks truth to the falsifiers and compromisers or brings solutions to complex circumstances for children and their families better than she. That means her letter is, of course, right where it belongs.

Thanks and Godspeed, Sr. Carol. You always are right where you belong.

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VICE PRESIDENT, COMMUNICATIONS AND MARKETING BRIAN P. REARDON EDITOR MARY ANN STEINER masteiner@chausa.org MANAGING EDITOR BETSY TAYLOR btaylor@chausa.org GRAPHIC DESIGNER LES STOCK

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ARTICLES AND BACK ISSUES Health Progress articles are available in their entirety in PDF format on the internet at www.chausa.org. Health Progress also is available on microfilm through NA Publishing, Inc. (napubco.com). Photocopies may be ordered through Copyright Clearance Center, Inc., 222 Rosewood Dr., Danvers, MA 01923. For back issues of the magazine, please contact the CHA Service Center at servicecenter@chausa.org or 800-230-7823.

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OPINIONS expressed by authors published in Health Progress do not necessarily reflect those of CHA. CHA assumes no responsibility for opinions or statements expressed by contributors to Health Progress.

2017 AWARDS American Society of Healthcare Publication Editors: Gold for Best Single Issue; Gold for Best Commentary; Silver for Best Human Interest Story; Silver for Best Cover Illustration.

Catholic Press Association: First, Second, Third & Honorable Mention for Best Feature Article; Second Place for Best Regular Column; Third Place for Best Coverage of Immigration; Third Place for Best Article Layout.

EXCEL (Association Media & Publishing): Silver for Best Feature Article.

Produced in USA. Health Progress ISSN 0882-1577. July – August 2019 (Vol. 100, No. 4).

Copyright © by The Catholic Health Association of the United States. Published bimonthly by The Catholic Health Association of the United States, 4455 Woodson Road, St. Louis, MO 63134-3797. Periodicals postage paid at St. Louis, MO, and additional mailing offices. Subscription prices per year: CHA members, $55; nonmembers, $75; foreign and Canada, $75; single copies, $10.

POSTMASTER: Send address changes to Health Progress, The Catholic Health Association of the United States, 4455 Woodson Road, St. Louis, MO 63134-3797.

EDITORIAL ADVISORY COMMITTEE Coletta C. Barrett, RN, FACHE, vice president, mission, Our Lady of the Lake Regional Medical Center, Baton Rouge, La. Kathleen Benton, DrPH, president and CEO, Hospice Savannah, Inc., Savannah, Ga. Sr. Rosemary Donley, SC, PhD, professor of nursing, Duquesne University, Pittsburgh.

Camille Grippon, MA, system director, global ministries, Bon Secours Mercy Health, Marriottsville, Md. Marian Jennings, MBA, president, M. Jennings Consulting, Inc., Malvern, Pa. Tracy Neary, regional vice president, mission integration, St. Vincent Healthcare, Billings, Mont.

Donald Obermann, director of finance, Ascension, St. Louis.

Sr. Kathleen M. Popko, SP, PhD, president, Sisters of Providence, Holyoke, Mass.

Laura Richter, MDiv, system senior director, mission integration, SSM Health, St. Louis.

Gabriela Robles, MAHCM, MBA, vice president, Community Partnerships, Providence St. Joseph Health, Irvine, Calif.

Michael Romano, national director, media relations, Catholic Health Initiatives, Englewood, Colo.

Fred Rottnek, MD, MAHCM, director of community medicine, Saint Louis University School of Medicine, St. Louis.

Becky Urbanski, EdD, senior vice president, mission integration and marketing, Benedictine Health System, Duluth, Minn.

Brian Yanofchick, MA, MBA, senior vice president, sponsorship, Bon Secours Mercy Health System, Marriottsville, Md.

CHA EDITORIAL CONTRIBUTORS ADVOCACY AND PUBLIC POLICY: Lisa Smith, MPA COMMUNITY BENEFIT: Julie Trocchio, BSN, MS CONTINUUM OF CARE AND AGING SERVICES: Julie Trocchio, BSN, MS ETHICS: Nathaniel Blanton Hibner, PhD FINANCE: Rhonda Mueller, CPA INTERNATIONAL OUTREACH: Bruce Compton LEADERSHIP AND MINISTRY DEVELOPMENT: Sr. Mary Haddad, RSM, MSW, MBA LEGAL: Catherine A. Hurley, JD MINISTRY FORMATION: Diarmuid Rooney, MSPsych, MTS, DSocAdmin MISSION INTEGRATION: Brian P. Smith, MS, MA, MDiv THEOLOGY AND SPONSORSHIP: Fr. Charles Bouchard, OP, STD

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YO U N G P E O P L E AT R I S K

What’s Next When ‘Just Say No’ Doesn’t Work?

The Importance of Harm Reduction in Preventing and Treating Addictions

FRED ROTTNEK, MD, MAHCM

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t’s difficult raising young people during an epidemic. Today we are experiencing an epidemic of opioid poisonings and opioid-related deaths. Nothing is normal in an epidemic.

And raising young people in the midst of an epidemic — especially one that is intertwined with behavioral health, trauma and the actions associated with risky and youthful audacious behaviors — is not only baffling, it is deeply frightening.

We are very familiar with abstinence-only approaches to risky behaviors. And while these approaches remain popular in policies and educational programs, most of us engaged in health care and health research have seen that they tend to be spectacular failures, particularly among our most vulnerable populations. In the 1980s, First Lady Nancy Reagan’s Just Say No to Drugs campaign, together with mandatory minimums for drug offenses and three-strikes-and-you’re-out felony policies, ushered in almost 40 years of hyperincarceration—devastating individuals, families and communities throughout the urban core of our nation. But it didn’t stop or even decrease substance use disorders, often referred to as SUDs.1 We have known for decades that people are not on a level playing field when it comes to biological and environmental vulnerabilities and protective factors when it comes to substance use disorders. We know that trauma—particularly repetitive and cumulative trauma—affects the brain’s hardwiring.2 The result is a nervous system more susceptible to dependence. We have the science, but we must socialize the science, and we must be vigilant in the face of leaders who want to

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return to a “simpler” and more punitive just-sayno approach to substance use disorders. Just Say No didn’t work in the ’80s, and it won’t work now.

Sitting at the other end of the spectrum is the universal legalization and decriminalization approach to drug use coupled with the expanded treatment of substance use disorders. A few western European countries, such as Portugal and Switzerland, have famously embraced these policies.3 While there have been many positive outcomes of these policies, there is really no reproducibility for the U.S. Those countries have much broader safety nets for their citizens and social determinants, universal access and capacity for health care, and a far different approach to criminal justice and criminal diversion programs.

They also do not have direct-to-patient medication marketing campaigns, 80% of the world’s opioids,4 and a 1,900-mile border with Mexico.

Our society is mobilizing itself toward expanding treatment, intercepting shipments, and researching new protective and treatment options against substance use disorders. At the same time, however, youth do not stop pushing boundaries, and their elders don’t stop wonder-

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ing about options for educating, protecting and rescuing young people from life-threatening substances. What do we know that works in prevention and treatment?

PREVENTION STRATEGIES FOR YOUTH

Three types of preventive interventions have data that support efficacy: social resistance skills training, normative education and competence enhancement skills training. Social resistance skills teach youth how to recognize situations, including media messaging, in which they are likely to be confronted with peer pressure to use.

They are taught not only to recognize, but how to avoid and/or respond to these situations with specific refusal messages and behaviors. Youth learn to express what values and activities are important to them; for example, “I don’t want to take something that changes how I think.” “Smoking is not something that I want—my health is important to me and smoking isn’t healthy.”5 Normative education, or denormalization, is a technique that focuses on high-risk youth, for example, children of parents who have substance use disorders. For these youth, SUDs—and the behaviors associated with them—are the norm.

Successful interventions include education about real use rates among peers and similar populations and the consequences of risky use of substances.

Competence enhancement skills training has been used in other settings in which young people may have poor social skills around high-risk behaviors, such as early onset of sexual activity. This training works to enhance life skills and build on assets that young people already possess.

Combined with coping and resistance-training, this kind of training increases the independence and autonomy of youth.

But prevention messages are not always effec-

Opiates are natural products derived from an opium poppy. Examples include codeine, morphine and opium.

Opioids are at least part synthetic/man-made.

Semisynthetic opioids are similar in structure to opiates, such as hydrocodone, oxycodone, oxymorphone and hydromorphone.

Synthetic opioids have structures different from opiates and include methadone, tramadol, fentanyl and carfentanil.

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tive, even among the most resourced youth in the most stable of environments. When use commences, and the young person progresses down the path of occasional use to regular use and to dependence, what are our options to help?

WHAT’S NEXT WHEN ABSTINENCE-ONLY EDUCATION FAILS?

Some of the most touching educational messages regarding opioids I have experienced are those from parents who have lost a child to an overdose.

From short videos, such as the ARCHway Institute’s “I Wish I Knew” series,6 to longer documentaries, like the #HopeDealer movement’s “Not My Child: Helping families understand substance use disorders and recovery,”7 parents’ messages are surprisingly similar.

I wish I had known the warning signs.

I wish I could have put two and two together.

I wish I had known the drug had hijacked my child.

I wish I had known that I needed to take care of myself and my other family members.

I wish I had known about Narcan.

Narcan (the brand name of naloxone) is the medication that can reverse an opioid overdose.

It is a key tool in harm reduction. Because if we know nothing else for sure in the opioid epidemic, it’s that dead people don’t recover.

HARM REDUCTION: PUTTING THE PERSON AT THE CENTER OF RECOVERY

Harm reduction is a strategy that mitigates unintended negative consequences of potentially risky behavior. The term tends to be linked to large public health efforts like syringe access programs to decrease the spread of infectious diseases associated with shared syringe use in IV drug practices, or use of condoms to decrease the spread of HIV and other sexually-transmitted diseases during unprotected sex.8 But we have been using versions of these techniques for as long we’ve been raising the next generation: don’t drink and drive; if you’re going out in this weather, at least wear a coat; if you’re going to play contact sports, wear padding and a helmet; and, no matter what happens, know that you can always talk to me.

Harm reduction focuses on the individual who is engaging in the risky behavior and our opportunities to provide support where the person is right here and right now. The primary goal is to help the person stay alive until he or she can clearly choose a path out of risk into thriving. Our role is

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to open or protect lines of communication, avoid messaging stigma and other negative messages about weakness and failure, and provide options to minimize risks associated with risky behaviors.

Harm reduction can be unsettling, because, when we use this approach, we’re acknowledging the primacy of someone else’s timeline over our own.

Successful harm reduction techniques during an opioid epidemic include: Recognizing the signs of someone experiencing an opioid overdose9 Distributing Narcan (naloxone) to every individual who uses opioids and every household with an opioid supply. Everyone in the household should know how to recognize an overdose and how to administer Narcan Expanding syringe access programs, where community health workers and other professionals can assess a client’s interest in seeking treat-

ment as they swap out used syringes for new syringes.

Understanding and educating others of situations when overdose is most common—after a break in using, when combining drugs, when using drugs from an unfamiliar source, and when people are alone, tired, sick or dehydrated.

Harm reduction is a difficult topic for adults working with youth. We want to keep our youth safe by any means possible. But we also know we can easily alienate trusting relationships if we lie and exaggerate. Moreover, one of the unintended consequences of an abstinence-only education is broken lines of communication; if young people feel they have disappointed their elders when they participate in risky behaviors, fears of retribution and loss of esteem can shut down further communication.

Critics of harm reduction use the E-word —

WAS JESUS A HARM-REDUCTIONIST?

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esus was no buzzkill. The gospels lead us to believe that Jesus was invited to some of the liveliest dinner parties in Israel. He welcomed the companionship of tax collectors, prostitutes, Romans and other sinners— people who were marginalized in his community.

Jesus accepted people as they were. “As they were” was scandalous to the Pharisees. Jesus upset the social order in accepting people who displayed unacceptable behavior.

Common sense informs us that Jesus was a popular dinner guest, likely because he was either a great conversationalist, or because he demonstrated genuine interest in his host and other guests, or both. Certainly he wasn’t popular because he harangued his guests about their immorality and immediate need for behavioral change or harped about their character defects.

Was Jesus a harm-reductionist? He supported people at the margins of society. He engaged with people whose behaviors posed risks to themselves. His only agenda was promoting the well-being of individuals and communities. He healed people who others perceived as untouchable or tainted—whether the malady be leprosy, irregular bleeding or demonic possession. People didn’t have to adhere to certain standards of

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behavior or be apostle-approved to gain access to him or receive the services he had to offer whether it be conversation, education or healing.

His approach to building relationships and building community were unconventional and available to anyone who sought him out. He allowed children to run to him, an “unclean” woman to touch him, and a paralyzed man to enter a home he was visiting through some creative rooftop deconstruction.

Jesus told story after story of leaving security and routine in order to find the lost individual.

I read the tale of the prodigal son with fresh eyes now that I have focused my practice in addiction medicine. The voice of the father is the voice of every parent whose child has found recovery — usually after years of struggling to keep the child alive, often at the expense of personal and family health. “‘Son, you are always with me, and all that is mine is yours. But we had to celebrate and rejoice, because this brother of yours was dead and has come to life; he was lost and has been found.’” (Luke 15:31-32, NRSVCE) Jesus met people where they were, conveyed care and interest in individuals as individuals, and started conversations focused on their priorities — those are the first steps of harm reduction.

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enabling. Despite lack of evidence, critics will perpetuate the urban myth of Narcan parties— where young people get together to use dangerous doses of opioids just to bring each other back from the brink with a Narcan injection. Anyone who has witnessed such a Narcan reversal knows how uncomfortable a Narcan rescue is—and realizes how only pathological cravings, not just adolescent impulsivity, can drive a person to repeatedly take such risks. We have lived through similar messages untethered by facts, such as availability of condoms drives youth to sex, and availability of clean syringes drives youth to IV drug use.

There is no evidence that availability of condoms or syringes promotes initiation of sexual activity or drug use; however, there are bodies of literature that the availability of condoms and syringes for those already engaged in sexual activity or IV drug use produces positive outcome. Both interventions greatly reduce the transmission of HIV and other sexually-transmitted and injectiontransmitted illnesses if used appropriately and consistently.

Harm reduction requires us to surrender false notions of control. In situations with opioids, we must remember that it’s impossible to control a condition that hijacks the brain of a person, rewires communication pathways, and elevates cravings as the driver of every situation. Harm reduction acknowledges that everyone is not on the same timetable to recovery. But it can also help someone stay alive until a person is ready to engage in healing.

COUNSELING YOUTH DURING THE OPIOID EPIDEMIC

While we can’t guarantee the safety of the young people in our lives, we should honestly add more tools to our toolbelts.

Educate yourself and others about harm reduction. Harm reduction approaches can range from very specific to very audacious. Explore resources that offer approaches that may challenge your notions of health and the messages you were taught as a child. The Harm Reduction Coalition10 was established in 1993 and holds the only national harm reduction conference in the U.S. It works to promote sound public health policy for those who use drugs, and decrease stigma and marginalization of those who use. Students for Sensible Drug Policy, 11 founded in 1998, is an international organization that wants to end the “War on Drugs” and promote safer and more sensible approaches to drug policies—particularly

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policies impacting youth.

Normalize the topics of behavioral health, toxic stress and resilience, and promote communication with difficult topics. Think of the parents who are teaching us what they wish they had known: if we don’t communicate, we won’t know.

Stop demonizing and disparaging those in your life who struggle with substance use disorders. Our language remains with our youth. If they initiate substance use, our words can become barriers to conversation and accessing care.

Strive to maintain communication, even when the young person you remember seems hidden in disorder and chaos.

Harm reduction is the beginning, not the end. Harm reduction is necessary, but it is not sufficient.

We must be realistic and vocal when it comes to prevention and treatment. We have an almost limitless supply of opioids in our communities.

While we are reducing the number of medical prescriptions of opioids, we have unprecedented amounts of opioids coming into the country by land, sea and air. And the high to exceedingly high potency of synthetic and semisynthetic drugs allows shipping and mailing of these products in almost undetectable amounts. Known street drugs, such as heroin, are up to five times more potent than they were in the 1950s, and, in most regions of the U.S., supplies of heroin are purposely contaminated and potentiated by synthetic opioids such as fentanyl and carfentanil. When one use of a street drug can result in death, the days of “normal youthful experimentation” and boundary-pushing are over.

And there is no end in sight for the personal safety and public threats of substance use disorders. In addition to opioids, we’re grappling with high-potency cannabis, overprescription of benzodiazepines (such as Xanax, Ativan and Librium), and the resurgence of methamphetamines.12 So, is this, as many fear, the new normal?

If it is, we need to adjust our educational messages and our own role modeling.

Harm reduction is a good first step. And for many youth, harm reduction is necessary before treatment. Because treatment will only work when it happens on the young person’s timetable, not on ours. Only with a frank, open and informed discussion of a substance use disorder can someone move from harm reduction to treatment to recovery to thriving. In order for our young peo-

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ple to have the kind of life we dream of for them, they need to stay alive. In the meantime, we have an obligation to educate ourselves and those we love about the science of addiction and risky drug use.

After all, we are living in an epidemic.

FRED ROTTNEK is professor and director of community medicine, and the program director of the new addiction medicine fellowship, Department of Family and Community Medicine, Saint Louis University School of Medicine, and medical director of the physician assistant program in the university’s Doisy College of Health Sciences, St. Louis.

NOTES 1. “Just Say No,” Editors–History Channel.com, May 31, 2017, https://www.history.com/topics/1980s/ just-say-no.

2. Alive and Well Communities, https://www. awcommunities.org/.

3. Drake Baer, “5 Countries Experimenting with Liberal Drug Laws,” Business Insider, March 30, 2016, https://www.businessinsider.com/ countries-experimenting-with-liberal-drug-laws-2016-3.

4. Dina Gusovsky, “Americans Still Lead the World in Something: Use of Highly Addictive Opioids,” CNBC, April 27, 2016, https://www.cnbc.com/2016/04/27/ americans-consume-almost-all-of-the-global-opioidsupply.html.

5. Abigail J. Herron and Timothy Koehler Brennan, The ASAM Essentials of Addiction Medicine, second edition (Philadelphia: Wolters Kluwer, 2015), 575-78.

6. I Wish I Knew Video Series: https://thearchway institute.org/i-wish-i-knew-video-series/.

7. Not My Child: https://www.notmychildfilm. com/?fbclid=IwAR0wc6VE3MvXQuPw_hhHaIvg8j9GYI7Hkg_kqaT4K106nMmdd8BG4PNcpewas.

8. Centers for Disease Control and Prevention, Syringe Services Programs: https://www.cdc.gov/hiv/risk/ssps. html.

9. Harm Reduction Coalition, Opioid Overdose Basics: https://harmreduction.org/issues/overdose-prevention/ overview/overdose-basics/.

10. Harm Reduction Coalition: https://harmreduction. org/.

11. Students for Sensible Drug Policy: https://ssdp.org/.

12. National Institute on Drug Abuse, Overdose Death Rates, Jan. 29, 2019: https://www.drugabuse.gov/ related-topics/trends-statistics/overdose-death-rates.

QUESTIONS FOR DISCUSSION Fred Rottnek, MD, is convinced that the opioid epidemic won’t be solved by simple admonitions to “just say no” or responses of “three strikes and you’re out” when teens do use. He advocates an approach known as “harm reduction,” which acknowledges that risky behavior is already underway, and supports the young person through the state of danger until better choices can be made.

1. What do you think of the concept of harm reduction? How is it different from more traditional approaches to substance use disorders? When you think of young people brought to your emergency departments for opioid overdoses or alcohol poisoning, are they getting the treatment that could most help them? Are you aware of any harm reduction programs or support groups in your community?

2. Rottnek notes that the protocols for dealing with substance use disorders in parts of Western Europe are less punitive and more focused on broader safety nets for their citizens, prioritizing social determinants of health and universal access. How do you think growing awareness of the social determinants affects our understanding of causes of diseases and the care of people who have them? Give some examples and envision some possibilities.

3. Rottnek’s sidebar asks, “Was Jesus a Harm-Reductionist?’ It points out that the Jesus known through the Gospels lived in the thick of risky events and questionable people of his society — prostitutes, tax collectors, lepers and riffraff. What does that mean in terms of the care your hospital or health system offers? Think specifically of language, staffing, whole person care, pastoral care and respect for family members. How do you prepare coworkers to manage their unconscious biases when caring for people who are poor and vulnerable?

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Limbo Really Exists: Undocumented Youth at Risk MARK KUCZEWSKI, PhD, JOHANA MEJIAS-BECK, MD, AMY BLAIR, MD, and MATTHEW FITZ, MD

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any Catholics grew up hearing the medieval theological lore about limbo, a place where unbaptized babies go to spend eternity. Because the babies lacked initiation into the Christian community, they were denied the fullness of salvation including a spot in heaven. While we often think of limbo as nothingness and neutral, it is also sometimes theologically postulated as the outer ring of hell. After all, we are created for union with God and others.

Imagining the souls of babies and children existing in isolation and going uncomforted is heartbreaking. Moreover, our sense of justice is offended by the seeming unfairness of this sentence. As they lived their brief lives as children, they cannot be responsible for their unbaptized state. They made no choices that have caused this situation. Yet, they suffer the consequences.

Undocumented youth live in limbo in the United States. Harvard sociologist Roberto Gonzales first articulated this reality in his book, Lives in Limbo.1 Gonzales dubbed being an undocumented immigrant a “master status” because it affects virtually everything one does. There is no life apart from that status. Being undocumented determines a person’s prospects for employment, a driver’s license, health insurance, a higher education degree, and many other opportunities often taken for granted. Depending on a number of factors, most or all of these things may be virtually impossible. As a result, many undocumented youth spend years just getting by while remaining hopeful that our government will reward their contributions to our economy and society with legislation that will create a pathway to citizen-

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ship. They behave as if they are implicitly “earning citizenship.”2 Unfortunately, while such legislation that would create a pathway to citizenship has come close to passage on several occasions since 1986, none has become law.

We will outline the challenges undocumented young people face and their unique vulnerabilities. In particular, we will make a case that they are denied opportunities to fulfill their potential as members of the community and relegated to daily uncertainty. We will suggest ways that health care professionals and institutions, in general, and those in Catholic health care in particular, can advocate for them.

STRESS, UNCERTAINTY AND TRUNCATED OPPORTUNITIES

It has always seemed especially unfair that undocumented youth cannot fully participate in our community. Sometimes called “Dreamers,” after the never-passed legislation known as the DREAM Act, they were brought to the U.S. as minors. Thus, they have not committed any crime in entering unlawfully or by overstaying a visa. Segregated from equal opportunity, undocu-

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mented youths live in a new “Jim Crow” landscape that resembles African-Americans’ struggle prior to the civil rights movement.3 President Barack Obama instituted the Deferred Action for Childhood Arrivals Program, often called DACA, in an effort to mitigate the biases and unequal environment. DACA provides a two-year, renewable stay of action on their immigration status and provides an Employment Authorization Document or EAD, colloquially known as a “work permit.” Those who received DACA are able to work lawfully which, unsurprisingly, greatly increased the range of employment opportunities and their wages. All states grant driver’s licenses to DACA recipients and educational achievement has significantly increased with DACA recipients entering colleges at a rate close to their citizen peers.4 Nevertheless, members of this population have significant barriers to full participation in their communities, including ineligibility for federal “benefits” such as student loans, provisions of the Affordable Care Act and Social Security benefits.

Thus, they remain at risk for diminished quality of life.

DACA has provided more stability than these young people had previously and opened more educational and work opportunities. DACA excluded significant numbers of young persons, however, as some were “too old” as they had to be under the age of 31 at the time of implementation in 2012. As an example, journalist Jose Antonio Vargas who was 31 years old in 2012 did not qualify despite having lived in the United States since the age of 12. Similarly, the earliest one could apply for DACA was at age 16. Thus, some young persons could only “age into” DACA eligibility over time. However, under the terms of President Obama’s executive memorandum, no young person who arrived in the U.S. after June 15, 2007, is eligible for DACA. As a result, there are now many young adults or people approaching adulthood in the United States who will never reap the benefits of DACA. Absent a legislative intervention, they will always remain fully undocumented with all the associated problems, including the risk of being detained and deported.

Furthermore, the undeniable context of the lives of undocumented youth is uncertainty.

Although undocumented youth in general and DACA recipients in particular are sometimes characterized as the rock stars of the immigration reform movement, because they are often

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described in terms of their achievements and do not carry the stigma of having violated immigration laws by their actions, they have never had the comfort of well-founded expectations regarding their future. On a number of occasions over the last 15 years, they have watched the DREAM Act and comprehensive immigration reform gather

The undeniable context of the lives of undocumented youth is uncertainty. momentum only to fall short of passage.5 The creation of DACA enabled more than 700,000 undocumented youth to gain a degree of predictability regarding their situation for a period of time.

Unfortunately, even this small concession to normalcy has been undermined.

On September 5, 2017, President Donald Trump rescinded DACA. As DACA was created by a presidential memorandum, the chief executive of the United States may choose to do away with it as well. Several district and circuit courts have held that the Trump administration did not meet certain process and rationale requirements for rescinding the program. These federal judges have ordered that the program remain open for current DACA recipients to renew their work permits while the cases make their way through the judicial system. Unfortunately, the DACA program was closed to new applications, thereby preventing anyone from aging into the program.

So, most undocumented youth do not have the protections and opportunities afforded through DACA. And those who do, live with the uncertainty about whether DACA will be ended with a court decision in the foreseeable future.

SANCTUARY DOCTORING

The overwhelming uncertainty and denial of opportunity are extremely stress-producing for undocumented immigrants and place young people at particular risk. For this reason, the American Academy of Pediatrics has created an extensive online toolkit for physicians treating this population.6 As an additional resource, the authors of this article previously created the Sanctuary Doctoring website7 to provide an easy-to-use and systematic approach for health care providers.8 Because of the unique needs of undocumented youth, we

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Photo by Robert Johnson

devoted a significant portion of the materials to addressing their needs.

In general, the Sanctuary Doctoring approach has four aims: to open a dialogue; to provide reassurance; to provide resources; and to begin to develop an emergency plan. In general, this approach empowers undocumented patients to raise the issue of stresses and problems arising from their immigration status. Modeled on other public health campaigns such as domestic violence awareness, the Sanctuary Doctoring approach normalizes such concerns. Physicians and other health-care professionals can wear buttons that encourage patients to talk to them about immigration-related concerns; the Sanctuary Doctoring flier tells patients that they can open such a discussion simply by handing the flier to their doctor.

This approach is meant to avoid frightening patients who might misinterpret being asked about their immigration status. However, physicians who have a rapport with their young patients or their parents may consider opening a dialogue more directly when there are signs or symptoms of social stress. For example, physicians may say that they have information that can be very helpful to young people who have difficulties related to immigration status and ask if they would like these materials for themselves or their friends and family.

Reassuring the patient takes two forms. First, physicians should reassure patients that their immigration status will not be written in their medical record. This is especially important

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for patients who do not have the protections of DACA.9 Second, physicians should reassure patients that many young people are currently facing these issues and injustices. While some undocumented youth are very well-networked, many may be isolated and wrestling with their struggle in isolation. This increases anxiety.

As a result, we have created a Sanctuary Doctoring template flier that can be customized by adding regional resources to help these patients.

The template provides links to national legal resources and encourages clinicians to add local resources, such as immigrant advocacy groups that offer assistance with DACA renewals or can refer them to reputable attorneys who may provide services on a sliding scale or pro bono basis, if necessary. The links to Dreamer advocacy organizations can help patients stay informed on the latest developments related to DACA and proposed legislation. With this information, Dreamers may be able to plan their renewals and maximize the amount of time they are protected by DACA should the U.S. Supreme Court take up any of the district or circuit court decisions and strike down the program. The flier also refers them to several organizations that highlight scholarships for which undocumented students are eligible.

We encourage local clinics to research educational resources in their area and add them to the template. The information helps undocumented youth to build networks and support their development in spite of their systemic separation from opportunity.

Finally, the Sanctuary Doctoring materials encourage patients and families to develop an emergency plan for a worst case scenario, such as the detention and/or deportation of one or more family members. It is beyond the scope of a clinician to make a full emergency plan with the patient and their family. However, there are some practical recommendations physicians can make. First, the physician or other health care professional should suggest that parents update the emergency contacts form at their child’s school.

It is important that the child will be picked up by the family member or person of choice should the parent be detained. Similarly, the child should be advised to memorize at least two phone numbers — their parent’s and one other trusted adult who will assist if the family is detained as a unit. It is important that young people be able to reach out for help in the event that they are separated from their electronically recorded contacts.

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THE COMMUNION OF SAINTS

undocumented students at local colleges and uniWhat should Catholic health care do for immi- versities. Furthermore, employing DACA recipigrants in political limbo, and why should it be ents further embeds these young people within done? It is unjust to penalize young people who the fabric of the community. And, health care syshave broken no law, and, in addition to that, Cath- tems may be able to create short-term internship olic social teaching contributes to our under- opportunities with local colleges and universities standing of the situation and makes action by that are available even to youths who lack a work Catholic institutions imperative. The U.S. Confer- permit. ence of Catholic Bishops has been a leading voice Third, Catholic health care must take on a for compassionate immigration reform for two greater public role in advocating for these atdecades.10 Catholic social teaching sees undocu- risk youth. Catholic colleges and universities mented migrants as reluctant migrants who typi- have been constant and eloquent advocates for cally leave their homes owing to unacceptable the equitable treatment of undocumented youth social and economic conditions. 11 As a result, because as students, they are constituents. Cathothere is a natural right to migrate or at least a pre- lic health care institutions have sometimes advosupposition in favor of welcoming the stranger. As cated on behalf of these populations. However, human beings also contribute to creation through their labor, Lack of a permanent and lawful work has inherent dignity. It is immigration status impacts health and by nature unjust for a community to share in the benefits of causes our health system to function the labor of others and to deny those laborers participation in less efficiently for all. its fruits.12 The imperative to advocate for justice for immigrants is made all the advocacy for undocumented populations has stronger through the current vilification of immi- often been a relatively low priority because of the grants in the political discourse. The message of need to focus on other health policy concerns such the Gospel is very straightforward. Christians as preserving the Affordable Care Act. The equistand with those who are marginalized and out- table treatment of undocumented immigrants cast.13 In such a climate, the agenda for Catholic can seem to be less clearly a health care issue. health care should contain several elements.

Furthermore, Catholic health systems located in Catholic health systems can make an effort to states that are more electorally conservative may support these young people, whether as patients, fear alienating their elected representatives and students or employees. As we’ve said, health other members of the community. It is important care professionals can use the materials from the that Catholic health systems use their influence to Sanctuary Doctoring site or similar materials in help recast the narrative in these locales. Lack of a a structured way with patients to be enormously permanent and lawful immigration status impacts helpful to this at-risk population. The needs of health and causes our health system to function these patients are immediate. less efficiently for all.15 Second, Catholic health care institutions can Catholic health care systems can advocate for partner with local educational institutions to fos- their employees who are DACA recipients and ter educational and employment opportunities undocumented youth who are their patients. This for undocumented youth. A notable example of is even more important in states in which the this is Trinity Health’s investment in student loans political climate is less hospitable. Catholic health for medical students who are DACA recipients at care institutions can work with their representathe Loyola University Chicago Stritch School of tives to come to share a mutual understanding Medicine.14 Such an investment creates opportu- that undocumented youth in their communities nity and empowers these young people, providing need their representation to further enable their them with an education and the chance to become contributions to those communities. stronger advocates for themselves and others as A moral imperative for Catholic health care is members of the medical profession. Catholic to end the chasm that separates us from the limbo health care institutions can echo this approach in which these youth live. Catholic health care by creating or donating to scholarship funds for must proclaim prophetically that these young

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people are us, and we are them. We must be in communion with them in the fullest sense — their struggles must become our struggles. We can no longer think of “them” as an “issue” that is related but marginal to the mission of Catholic health care. In recognizing their long-standing plight, we are called to accompany them as neighbor, as brother and as sister. To end the social and political limbo undocumented youth are in, we must proclaim the Kingdom of God and live it together.

MARK G. KUCZEWSKI, PhD, is the Fr. Michael I. English, SJ, professor of medical ethics and the director of the Neiswanger Institute for Bioethics at the Loyola University Chicago Stritch School of Medicine.

JOHANA MEJIAS-BECK, MD, is a resident (post graduate – year one) in the internal medicine and pediatrics (Med-Peds) program at the University of Missouri–Kansas City, Truman Medical Center.

A former DACA recipient, she plans to dedicate her career to underserved patients, especially immigrant populations.

AMY BLAIR, MD, is an associate professor of family medicine at the Loyola University Chicago Stritch School of Medicine, and director of the Center for Community and Global Health.

MATTHEW FITZ, MD, is a professor of internal medicine and pediatrics at the Loyola University Chicago Stritch School of Medicine where he directs the Internal Medicine clerkship. He also directs the Loyola Access to Care Clinic, a primary care safety net clinic in Maywood, Ill.

NOTES 1. Roberto G. Gonzales, Lives in Limbo: Undocumented and Coming of Age in America (Oakland, CA: University of California Press, 2016).

2. Jose Antonio Vargas, Dear America: Notes of An Undocumented Citizen (New York: Harper Collins, 2018), 71.

3. Mark Kuczewski, “The Really New Jim Crow: Why Bioethicists Must Ally with Undocumented Immigrants,” American Journal of Bioethics 16, no. 4 (2016): 21-23.

4. Randy Capps, Michael Fix, Jie Zong, “The Education and Work Profiles of the DACA Population,” Issue Brief, Migration Policy Institute, August 2017, http://www.migrationpolicy.org/research/ education-and-work-profiles-daca-population.

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5. Michael Bowman, “Comprehensive US Immigration Reform Remains Elusive After Years of Failed Plans,” Voice of America, April 4, 2018. https://www.voanews. com/a/comprehensive-us-immigration-reform-elusive/ 4332393.html.

6. American Academy of Pediatrics, Immigrant Child Health Toolkit, https://www.aap.org/en-us/advocacyand-policy/aap-health-initiatives/Immigrant-ChildHealth-Toolkit/Pages/Immigrant-Child-Health-Toolkit. aspx.

7. Resources on Treating Fear: Sanctuary Doctoring at https://LUC.edu/sanctuarydoctor.

8. Mark G. Kuczewski, Johana Mejias-Beck, Amy Blair, “Good Sanctuary Doctoring for Undocumented Patients,” AMA Journal of Ethics 21, no. 1 (2019): E78-85. https://journalofethics.ama-assn.org/article/goodsanctuary-doctoring-undocumented-patients/2019-01.

9. Grace Kim, Uriel Sanchez Molina and Altaf Saadi.

“Should Immigration Status Information Be Included in a Patient’s Health Record?,” AMA Journal of Ethics 21, no. 1 (2019):8-16.

10. National Conference of Catholic Bishops/United States Catholic Conference, “Welcoming the Stranger Among Us: Unity in Diversity,” 2000, http://www.usccb. org/issues-and-action/cultural-diversity/pastoral-careof-migrants-refugees-and-travelers/resources/ welcoming-the-stranger-among-us-unity-in-diversity. cfm.

11. United States Conference of Catholic Bishops, Justice for Immigrants, “Root Causes of Migration,” 2017. https://justiceforimmigrants.org/what-weare-working-on/immigration/root-causes-of-migration.

12. Mark Kuczewski, “Here’s What We Are Supposed to Believe About Immigration as Catholics,” America, September 29, 2017, https://www.americamagazine. org/politics-society/2017/09/29/heres-what-we-aresupposed-believe-about-immigration-catholics.

13. Mark G. Kuczewski, “DACA and Institutional Solidarity,” in M. Therese Lysaught and Michael McCarthy (eds.), Catholic Bioethics & Social Justice, (Collegeville, MN: Liturgical Press Academic, 2018).

14. Betsy Taylor, “Trinity Health Funds Medical School Loans for Undocumented Immigrants,” Catholic Health World, October 1, 2015, https://www.chausa.org/ publications/catholic-health-world/archives/issues/ october-1-2015-chw/trinity-health-funds-student-loansfor-undocumented-immigrants-medical-students.

15. Mark G. Kuczewski, “How Medicine May Save the Life of US Immigration Policy: From Clinical and Educational Encounters to Ethical Public Policy,” AMA Journal of Ethics 19, no. 3 (2017):221-233, http://journalofethics. ama-assn.org/2017/03/peer1-1703.html.

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Asylum Seekers Find Safe Haven JOHN MORRISSEY

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esperate children trudge on a lonely quest for U.S. asylum after fleeing abuse or threats on their life. Limited and dwindling cash buys passage by plane, boat, truck and on foot through as many as 10 countries, where they risk drowning, dense jungle and further abuse to get to the American border. If they can credibly explain the threats that made them run, they are placed in juvenile facilities while their cases play out — until they turn 18.

That’s when, in one day’s time, their lives turn upside down yet again.

If they have no family, friend or foster care to sponsor them, shortly after midnight on their 18th birthday “an officer will come to the youth center and take the child in handcuffs — that’s their procedure — and then they transfer them to one of the adult detention facilities” for immigrants seeking asylum, said Br. Michael Gosch, a Chi-

If they have no family, friend or foster care to sponsor them, shortly after midnight on their 18th birthday “an officer will come to the youth center and take the child in handcuffs … and then they transfer them to one of the adult detention facilities” for immigrants seeking asylum.

— BR. MICHAEL GOSCH

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cago-area brother with the Clerics of St. Viator.

There they wait, usually in a county jail, their asylum efforts constrained by the lessened ability to reach legal help, phone home and gather evidence of the events that forced them to flee.

“It’s very regimented,” said Br. Gosch, co-director of a program to provide a caring and supportive alternative to this norm. “It’s a strict routine.

They’re in [jail] jump suits. When they are transferred for [asylum] hearings into Chicago, they’re cuffed and they ride in these vans. So they’re pretty much treated as if they are criminals.”

Br. Gosch was actively involved in Chicagoarea shelters organized to house and help adults seeking asylum but with nowhere to go, when he became aware of a subset — teenagers who legally become adults, but remain children in many respects, and needed a different, more extensive range of support. As teenagers under age 18, they had been in the custody of the U.S. Office of Refugee Resettlement, which exists for children only, and is required to transfer custody to Immigration and Customs Enforcement at the legal adult age.

Confinement could range from several months to much longer, especially if the immigrant loses the first hearing and then appeals, said Melanie Schikore, executive director of the Chicago-based Interfaith Community for Detained Immigrants,

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which provides pastoral care and advocacy for tives to detention” are an option, she added, citing asylum seekers. the ICE operations manual Performance-based Moved by the incarceration of children aging National Detention Standards. The decision is up out of youth facilities, Br. Gosch teamed up with a to ICE on whom to divert to those alternatives, fellow Viatorian, Fr. Corey Brost, to launch a home such as community-based parole-like programs, for young men in January 2017. Viator House of if available.

Hospitality, which can board and benefit up to 25 Transfers to adult detention contrast with the residents, is a government-approved alternative to group home setting where asylum seekers lived detention and has built a reputation for meeting as children, Schikore related: “They are wearing the social, cultural, educational and basics-of-liv- their own clothes, they have a cafeteria, they have ing needs of more than 50 asylum seekers to date. teachers and they’re playing with [other] chilIt’s a start, but with Viator House filled to dren.” Next thing they know, they are incarcercapacity, Br. Gosch is struck by the wider reality that “there is this tremendous need Many of them don’t understand because of the number of unaccompanied immigrant children coming across the borwhy this is happening, why they der, and there aren’t places available to welare sharing space with accused come these kids once they turn 18.” In the past five years, 260,000 lone minors entered lawbreakers in some instances, the country, according to U.S. Customs and Border Protection. and why they have lost any For youths in adult detention centers, control over their lives. the risks to physical, mental and emotional health suddenly multiply, according to activists familiar with the typical environment. ated. “It’s an affront to who they are, and why they Many of them don’t understand why this is hap- came, and the traumas that they’ve been through, pening, why they are sharing space with accused to further traumatize them in this manner.” lawbreakers in some instances, and why they have The primary focus of correctional officers is lost any control over their lives. The jail garb, the safety and security, not warmth and hospitality, feeling of being held for some unnamed wrong- Schikore noted. “We frequently have people tell doing, and extreme limits on walking around or us that we’re the only people who come into the going outside can make for scary times. jail and are happy to see them, see their humanSome new detainees will spend the first day ity, and treat them as human beings, and ask them crying, said Schikore. Age 18 can feel like an arbi- things like, ‘How are you feeling today?’” trary milestone for adulthood, especially for The setups of the four main detention centers youth who have never been on their own and are ringing the Chicago area vary; some have cells, navigating a completely new country’s official others use more of a dormitory arrangement. Few systems without family to lean on, she said. “The have sufficient window light and outdoor room, age issue means that anything that is not already Schikore contends. The ICE standards manual great for other adults is amplified for young peo- expects facilities to provide indoor and outdoor ple because they have less life experience and recreation, and if it doesn’t have an outdoor area, they’re less equipped to handle anything that’s “a large recreation room with exercise equipment happening to them.” and access to sunlight shall be provided.”

A spokeswoman for ICE said in a statement Kankakee County Sheriff Mike Downey said that at the time the transfer from a juvenile facil- transparent skylights are “in every housing unit” ity takes place, “a new custody determination is of the county’s jail, referring to its open dormitomade by ICE, taking into account the totality of ries plus cells for more dangerous, uncooperative the individual’s circumstance, to include flight detainees. There is no outdoor area, which “is not risk, threat to the public and threat to them- required by county jail standards, but it is obviselves.” Those determinations are made case by ously required by ICE standards. So we are actually case “while adhering to current agency priorities, working with a couple of construction companies guidelines and legal mandates.” Certain “alterna- now, to put something outside for the detainees.”

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Overall, though, “When we built the jail, we built a secure facility,” Downey pointed out. “They don’t have the ability to come out of unlocked doors, come and go as they please. They are in a confined area” that is “big enough, open enough.”

Each center has a different way of grouping detainees by gender, reason for detention, age or other variables, and young asylum seekers may be housed with older adults, including people accused of felonies. Schikore said, “We do hear from people who are sharing space with someone who has committed some horrible, violent crime, and they’re afraid of who they are with.”

ISOLATED AND AFRAID

Communicating with the outside world, whether pursuing their asylum or reaching family members, is severely curtailed in this environment. A legal advocacy organization in Chicago called the National Immigrant Justice Center has under-18 clients that it represents as part of an initiative called the Immigrant Children’s Protection Project. Any child who turns 18 will continue to be represented in adult detention. But if a young person doesn’t have a source of legal aid by then, it’s difficult to get counsel.

As non-citizens, no lawyer is provided by the courts, and many go without representation even though history demonstrates how essential it is.

“Statistically, we know that the chances of a successful case are so much greater just by the fact of having a lawyer, because it’s a bureaucratic system,” Schikore explained. “It’s a legal system that’s difficult to navigate, and not having a guide to do that is challenging.” Research from the nonprofit Kids in Need of Defense finds that 7 in 10 who arrive as children win if they have lawyers; 9 in 10 without such representation lose. But only 14 percent of detained immigrants have a lawyer, compared with 2 out of every 3 who are not detained, according to the American Immigration Council.

Even with National Immigrant Justice Center representation, someone in detention has a hard time getting access to a lawyer who typically is at least 90 minutes away from any of the detention centers. That’s how long it takes lawyers to get from Chicago to the centers in Kankakee and McHenry counties in Illinois, or Kenosha and Dodge counties in Wisconsin. Making or taking phone calls can be a problem, whether it’s to contact a lawyer or reach home to ask for necessary documents to help attorneys press the case, said Br. Gosch. At Viator House, they are given cell

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phones and calling cards to reach the home country, “but in a county jail and detention centers, they don’t have that ability to stay in close contact with family members.”

The ICE manual lays out directives on access to phones, requires free calls to legal representatives and prohibits arbitrary limits on the length of such calls. On other types of calls, any international or other charges are the responsibility of the caller. Practically speaking, access can be limited by the availability of phones — the manual recommends an “optimum” ratio of one per 10 detainees but allows for a minimum of one for every 25.

CHOICES NO ONE SHOULD FACE

The United States is where things were going to be different. Back home, traumas resulting from political unrest, ever-present gang presence, or just being in the tribe out of power made daily life constantly dangerous.

In Central America, youths often are forced to join gangs, or else. They either participate unwillingly in the torment of others as part of the gang, or resist at their peril. One resident of Viator House faced an unthinkable choice. “He and his friend didn’t join the gang, and the friend was killed.

And so he felt he needed to join the gang, so he said he’d join,” Br. Gosch recalled. “The gang said, ‘Okay, fine — you have to prove your allegiance: Choose one of your parents to kill. You have to kill one of your parents. Then you’ve shown us your loyalty.’ So instead of killing a parent, he took off.”

In other countries, terrorist, criminal or military groups threaten anyone showing opposition. One asylum seeker staying at Viator House described how he had been laid up in his home country for months after trying to defend his mother from attack because his parents were politically active. He then departed on a sixmonth saga across three continents to the U.S. once he had healed enough to travel. Other teenagers are forced to join the government military — which in dictatorships enforce very harsh rules on the country’s people — or be thrown in jail, Br. Gosch said.

“You have a person who has high levels of trauma because of [home country] issues, who then has additional trauma because migration is traumatic,” Schikore explained. They see people die on a journey of strangers traveling together, whether the boat in front of them capsizes and all aboard drown, or others get sick or dehydrated

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and can’t continue. Some are attacked and robbed, because it’s well known that they have money on them to finance the moves from one country to another.

“You leave whatever trauma at home that forces you out, then you experience all of this,” Br. Gosch said.

In one stretch, through the Darien Gap jungle between Colombia and Panama, youths witnessed lethal missteps including one man who slipped and fell off a mountainside, and another who was swept away by swift current when crossing a river, Br. Gosch related. One slightly built teen survived the river fording with the help of two large companions who positioned themselves on each side of him to blunt the force of the current. He made it to the U.S. border, and eventually to Viator House.

A PLACE OF RESPITE

A fortunate consequence of intercepting minors on their 18th birthday instead of having ICE move them to a detention center is that “the kids we get directly from the children’s centers are completely naïve about what they have escaped because of our intervention — and we like it like that,” said Schikore. “It’s a gift. They have no idea what would have happened had we not been able to offer them a space instead of them going to jail. And that’s okay with us. Thank God they don’t even know.”

WELCOMING NEW MEMORIES

Aftershocks don’t come out immediately, said Fr. Brost, but over time he sees things like stress headaches, sleeplessness and nightmares. “We see guys that, as a result of a word or a phrase, or a touch, have an intense emotional reaction.

Or maybe a call from home might trigger a withdrawal to his bedroom, or tears or anxiety.”

There are flashes of anger about the asylum process or about the wait for cases to be fully prepared and called for a hearing. Fr. Brost points out that the residents are fortunate to have lawyers working on their behalf but frequently the assigned attorneys are the only conduit to the legal process and get blamed for a lack of progress.

New arrivals have a big adjustment to make because they can actually let down their guard. In addition to gratitude and relief, one thing that stands out is that they can live in a room under their personal control, said Fr. Brost, co-director of the facility.

“For the first time in many months or years, they can take a concrete action to protect themselves.

One of the most important things we learned when we opened Viator House was to give them locks and keys for their doors.”

In opportunities to go to school, Guided by two case managers, to work and to give back by residents undergo a schedule of doctor, dentist and counseling visits, and volunteering to help people in need, they work with a facility supervisor to learn house chores, make their own Viator House aims to build a culture meals in two large kitchens, and start that supports healing. an educational regimen that includes high school and English classes tailored for immigrants. More than 70 volunteers Because of the past and ongoing trauma, Viator from the area help tutor residents, act as mentors, House maintains the anonymity of its residents work in the house and drive residents to and from and usually declines to make individuals available the wide range of activities off site. to retell their stories. Fr. Brost said the retelling The environment is the happy medium especially to a general public is uncomfortable if between strict routines of juvenile or adult deten- not emotionally taxing. Another wrinkle: Infortion and the anarchy of the journey. “They have mation published even under an alias could be come from total chaos — of the jungle, of trav- identifiable to people, including back home, who eling, of not trusting anybody — so now they at are very familiar with the asylum seeker. least have some kind of structure,” said MariIn opportunities to go to school, to work and to anne Dilsner, one of the case managers at Viator give back by volunteering to help people in need, House. But it’s nothing like detainment. “I explain Viator House aims to build a culture that supports to them, ‘You are free here. Free to go out and healing. One of the goals, said Fr. Brost, is to “build ride a bicycle. Free to take a walk. Free to take a new memories” to displace the traumatic ones, by shower if you want.’ Those things are so different planning field trips and parties, celebrating birthfrom detention.” days, “laughing together and enjoying life.” Each

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resident gets a photo album and pictures capturing these moments, something to go back and relive.

The progress is slow but promising. For instance, Fr. Brost remembers one resident of Viator House passing him and, seeing Fr. Brost’s concerned expression, the teen asked the priest if he was OK. This teen had spent most of his life being passed from one relative to another, no one caring about him. “The ability to show empathy I think is a sign of some healing—the freedom to care for someone else because you feel safe enough that you don’t always have to be on the lookout for protecting yourself.”

SETBACKS AND STEPS FORWARD

The healing culture can only do so much, because the past can intrude at any time. “These guys are still so closely tied to family and friends that the news from home really can trigger or set back someone,” Fr. Brost said. New trauma can bring back old trauma. One young man found out that his father was taken by the military of his country and relapsed from stability into intense suffering.

Another youth agonized over the poor health of his mother, who suffered from serious illness but could not afford the medication she needed.

In this instance, Viator House helped by raising money to relieve his mother’s physical suffering and his own emotional trauma, but often nothing can be done to help.

Grueling encounters with lawyers and others that involve retelling their stories can bring back ordeals, Fr. Brost said. “I have driven many miles with guys sitting silently in the car after having to relive their trauma during a meeting with a lawyer or psychologist. My heart goes out to them because I know they’re hurting inside.”

“If they’ve left violent situations where there is lots of political unrest, they always worry about the safety of their family members,” said Br. Gosch. They also worry about younger siblings getting swept up in gangs. The worry can turn into guilt: “Some might feel that, ‘I got out, but they didn’t get out.’”

In addition to the concern about home, the uncertainty of their future in this country is common. A third of current residents are in what their lawyers describe as “a black hole” in terms of immigration status. Normally getting a case called quickly is a good thing, but if it is called before the documents and testimony to present the case can be assembled, it has to be rescheduled. That could

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take months or years in a Justice Department that as of late 2018 had just 395 immigration judges, and a case backlog of 760,000 at the time, according to the department’s Executive Office for Immigration Review.

Technicalities involved in delaying the asylum hearing prohibit getting a job, and getting money home. “Without being able to officially work, our guys suffer a great deal,” Fr. Brost explained. “One, because of the inherent dignity of work and how that builds character and helps people recover.

And two, the suffering their families often face at home because of the debts they’ve incurred to get the kids to safety, or because of poverty.”

But the lingering trauma even in the safety of Viator House—as well as in a Chicago-area facility for women, Bethany House—pales in comparison to the alternative of detention, said Schikore.

“Everyone leaves Bethany House, Viator House, better than when they got there. No one leaves detention better than when they got there.”

“I just wish there were more Viator Houses and Bethany Houses,” said Fr. Brost. “I see the pain these guys have been through, and I see the difference this environment makes. . . . I pray that there are more people inspired to replicate this model.”

Br. Gosch, who already had know-how and contacts in immigration work, began to plan the model and set up the program in early fall of 2016 and launched it in January 2017. He was able to obtain initial funding in the form of a three-year grant from the Clerics of St. Viator order, and various fundraising events and pleas for contributions in the surrounding suburbs have supplemented that startup grant. Viator House is transitioning into a 501(c)(3) nonprofit organization in 2019, which positions it to apply for other grants.

Br. Gosch said the program has attracted some feelers, from a Catholic entity in Louisiana and a lay group in Pittsburgh, for example, seeking to open something similar. The volume of need calls for a response to match, he asserted. Other religious groups could start by setting up and using an available building to divert children aging out.

“Because otherwise how is an 18-year-old from a foreign country without any resources, without any support system, going to make it?”

JOHN MORRISSEY is a freelance writer specializing in health care delivery, policy and performance measurement. A volunteer at Viator House, he lives in Mount Prospect, Ill.

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Realy Easy Star/Alamy Live News

Finding God in Daily Life A young person stands on two feet as adults do, but unlike the adults whose feet are parallel, he always has one foot forward, ready to set out, to spring ahead. Always racing onward. To talk about young people is to talk about promise and to talk about joy.

Pope Francis, God Is Young, p. 4

Caring for the Medically Complex Child ROBERT A. BERGAMINI, MD

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pproximately 3 million children in the United States are medically complex. The current health care system often fails to provide optimal care for these children just as it fails to provide appropriate support to their families. These are children who have multiple medical problems. They require specialized care from multiple providers. Many times, they and their families also need mental health services. The social needs for the children as well as their families mirror the complexity of the underlying medical issues.

Most of these children are covered by Med- safely use a standard, commercial car seat. Cusicaid because they were born into poverty or tom car seats can be made – typically at a cost of because their families have been impoverished about $1500. Most Medicaid programs reimburse by overwhelming medical costs. Medicaid and the Children’s Health InsurApproximately 3 million children ance Program cover 48% of children with special health care needs. Annual in the United States are medically spending is seven times higher for chilcomplex. The current health care dren who qualify for Medicaid through a disability pathway — nearly $18,000 system often fails to provide optimal annually compared to about $2,500 for a child who qualifies due to low family care for these children just as it fails income.1 The current health care systo provide appropriate support to tem primarily offers fragmented care.

The burden of coordinating that care their families. falls to the families and/or caregivers, which causes increased hospitalizations, frequent visits to the emergency depart- only $500 for a custom car seat, so financially ment and preventable readmissions. Equally strapped families must pick up another cost. Prosimportant, uncoordinated care disrupts the lives theses are replaced on a schedule that is based on of parents, siblings and other caregivers, resulting adult data, which ignores the fact that children, in lost days from work, lost wages and missed days even children with handicaps and complex medifrom school. cal problems, grow and need to move into larger The complexity of the medical needs and the sizes before they are eligible for another one. At inadequacies of the current system affect the lives best, a poorly fitting prosthesis is uncomfortable. of children and their families daily and in ways At worst, it will cause additional complications, most of us would never imagine. Many of these such as skin breakdown. children have scoliosis, which means they cannot The total number of children with complex

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medical conditions is small, so their data are not considered in health system purchasing contracts. There are many examples of how this adds extra burdens to the complicated lives and limited resources of the children’s families. A simple change in the supplier of gastrostomy-jejunostomy tubes easily cascades into a major problem.

(Such tubes are used for feeding, hydration and medication administration.) The devices can fail suddenly and require emergent replacement. If a different brand is installed, different connector tubing will be required. Medicaid limits the supply of connecting tubing sets, and the sets are not interchangeable between brands. That means if a month’s supply has already been issued, the family must pay for the new ones out of pocket.

Certain medications administered via gastrostomy tube degrade the balloon that secures the tube in place. Medicaid and insurance companies limit replacement to one every three months. If a tube fails early, the family’s only option is to visit the emergency department and have the tube replaced there.

A trip via ambulance to an emergency department can result in an admission, simply because the ambulance will not transport the child back home. It is also a problem that Medicaid-provided transport services demand a 72-hour set-up time.

Children who are medically complex require constant care. Medicaid may cover private duty nursing, but many commercial insurance contracts specifically exclude this service. Families are left to provide care on their own and must make do with intermittent nursing visits. As children grow, safe transfer from a bed to a wheelchair becomes more difficult. Without sufficient help and support, this poses greater risk of injury to the caregiver and to the child. Caregiver fatigue is real and poses a health and safety risk for the entire family.

The physical needs of these children are many.

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Homes must be modified to accommodate medical equipment and supplies. Hospital beds, standers, specialized wheelchairs, shower seats, ventilators and other associated equipment can necessitate major modifications to the home. Sometimes electrical service needs to be upgraded. Municipalities can require a zoning variance for a family to operate an emergency generator during a power outage, even if that generator is running life support equipment. Small generator units are difficult to maintain, and families may be unaware of the safety issues associated with their use, such as carbon monoxide fumes, fire hazards during refueling and more. Since the units are relatively portable, they can easily be stolen during power outages.

Families covered by Medicaid must learn to understand charitable assistance, accept it carefully and remain within the rules prescribed by their state. Financial support to modify a vehicle for safely transporting their child or the donation of a van with special modifications may render a family ineligible for food stamps for six months.

In the same vein, home improvements can be considered gifts of substantial value and affect Medicaid eligibility and disability benefits.

Medicaid will provide transportation to medical appointments, but it will not allow a parent to bring other children along with them. Many families cannot absorb the cost of child care that would be needed for the other children to be cared for at home. A trip via ambulance to an emergency department can result in an admission, simply because the ambulance will not transport the child back home. It is also a problem that Medicaid-provided transport services demand a 72-hour set-up time.

Coordinating provider appointments is a substantial challenge to parents and other caretakers.

Because surgeons have days dedicated to procedures in the operating room and other days dedicated to office hours, a child that needs services from multiple surgical specialists has to return on multiple different days based on the providers’ availability. When providers are associated with different health systems, data is not readily shared and not all specialists get the relevant information they need. Duplicate tests are ordered, and children are subjected to duplicate X-rays. This not only increases costs, but it also needlessly exposes children to more radiation.

There is an inherent bias that children with medically complex conditions face. One mother

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shared the following story: her daughter had several chronic medical issues, including significant developmental delay and was ill with gastroenteritis. On a good day, the child was a difficult IV start. Now, in the emergency department, dehydrated, it took 14 attempts to establish an IV. A nurse turned to the mother and said, “Don’t worry – your child is retarded so she won’t remember any of this.” Unfortunately, it is a common bias, and it ignores the basic rights of the child. It gives no credence to the unique communication that often exists between parents and their child with special needs. What a medical provider interprets as a meaningless sound can, to a parent’s ear, reflect pain, happiness, fright, laughter or sadness.

Some people think that aggressive care of these children is futile; others go so far as to say it is inappropriate.

Catholic health systems are blessed to have health care-certified chaplains in many locations. Families that do not have access to properly trained chaplains can be left in a spiritual no man’s land. Advice that comes from people who are ignorant of basic medical needs and conditions or unschooled in spiritual or psychological support is not helpful and, in some instances, can be harmful to the child and family. Worse, there are still those who believe that the child’s medical conditions are punishment for the sins of the parents. Spiritually, families are devastated by such judgments and thus denied the healing that spiritual nurturing can bring.

Treatment of medically complex children usually involves many medications. Some of these medications are controlled substances. Families that struggle financially, as most of these children’s families do, often live in areas considered a “pharmaceutical desert,” which makes access to the medications that their children need far from easy. They have to use scarce resources to get the medications, and they are potential targets for theft and violence because the street value of many of the controlled substances is very high.

Children with complex medical conditions are living longer – many now surviving to adulthood.

Transitioning from the role of parent to adult guardianship can be expensive, frustrating and time consuming. While applying for guardianship, families must simultaneously requalify their child for Medicaid. A review of the documentation requirements from four states reveals that the average medical interrogatory is 9.3 pages. The documentation provided to the court for guard-

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ianship is generally not accepted for Medicaid, so separate documentation must be completed.

Costs vary from state to state, but $2500 is a typical minimum.

As children with complex medical conditions age, transitioning care to “adult” providers can be problematic. Pediatric facilities have age limits.

Most adult providers have received little training in the problems faced by these young people.

The transition itself is emotionally fraught for the young person as well as for their families — they have to leave behind the providers that many have known and trusted for two decades. The lack of willing providers for adult care at this level compounds the difficulty and increases the fragmentation of care.

Improving care for these children and their families is not impossible. It relies much more on excellent coordination and communication than it does costly equipment and complex management programs. The eight domains of care outlined by the National Consensus Project for Quality Palliative Care serve as a guide for developing a system to meet the needs of these children. The eight domains are: 1. Structure and processes of care 2. Physical aspects of care 3. P sychological and psychiatric aspects of care 4. Social aspects of care 5. S piritual, religious and existential aspects of care 6. Cultural aspects of care 7. Care of the patient at the end of life 8. Ethical and legal aspects of care.

Achieving these goals need not be cost prohibitive. A 2016 study utilized a model that included comprehensive care coordination, expressive therapies (for example, art, music therapy), family education, respite care in and out of the home, family and bereavement counseling, pain and symptom management, and 24/7 on-call nursing support (through hospice and home health agencies).2 Patients selected were those deemed likely to require at least 30 hospital days annually.

This care model resulted in savings of $3,331 per child per month. It did not require deployment of expensive monitoring equipment. Instead, case management was handled telephonically, but robust individualized case management was key to the success of the program. In addition to the cost savings, provision of care in the home setting

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improved family satisfaction and patient comfort.

The care of medically complex children requires an individualized, family centered approach. There must be comprehensive care management provided by a registered nurse and/ or a master’s level social worker. There must be a clear plan of action for the situations most likely to occur with each particular child. Most important, there must be prompt access to medical personnel. If a parent calls because the pulse oximeter is reading 80, that parent isn’t going to leave a message on voicemail but will take the child to the emergency department. If the parent can quickly contact trained medical personnel, appropriate interventions can be initiated, and the ED visit avoided. There is a clear benefit to the child.

The benefit extends to the family, whose already complicated life is not further disrupted. It will be a challenge for the contracting arm of health systems to negotiate shared savings contracts that will cover the true costs of care provided.

The care of a medically complex child can consume 25%, or more, of a family’s disposable income for medically related, unreimbursed expenses. This deepens the poverty of poor

families and forces other families into poverty.

Focus on the poor and vulnerable is a hallmark of Catholic health care. The investment of time and resources in careful coordination of the care of medically complex children represents excellent stewardship that protect the dignity of the child, supports the family and enhances the quality of life of that child and family. This is a win for the child and family, the health system (with a good contract) and for Medicaid. It should be the standard of care for all of these children.

ROBERT BERGAMINI is a pediatric hematologist oncologist and the medical director of the Mercy Kids Complex Care Team in the St. Louis area.

NOTE 1. MaryBeth Musumeci and Julia Foutz, “Medicaid’s Role for Children with Special Health Care Needs: A Look at Eligibility, Services, and Spending,” Henry J. Kaiser Family Foundation website, Feb. 22, 2018.

2. Daphna Gans et al., “Cost Analysis and Policy Implications of a Pediatric Palliative Care Program,” Journal of Pain and Symptom Management, 52, no. 3 (September 2016): 329-35.

QUESTIONS FOR DISCUSSION Robert A. Bergamini, MD, is a pediatric hematologist oncologist who cares for medically complex children. Their care is not only medically complex, but the complexity is multiplied by complications of insurance, Medicaid restrictions, poor coordination and communication among multiple providers, and family systems operating under enormous financial stress and personal fatigue.

1. Bergamini says that because the number of children with medically complex conditions is small, their data aren’t considered in large purchasing contracts or Medicaid maximum payments. What does this mean for hospitals trying to support those families, hold down costs and provide high-quality care?

Does your hospital have a department or designated staff person who advocates for this small, but very vulnerable population? Do you have ideas how coordinated care, pastoral care or family advocates could help?

2. There’s a higher incidence of children with medically complex conditions among people who live in poverty or with other adverse social determinants of health. Talk about how caring for these children relates to the charity care your health system is able to allocate. Do you think that the children hardest hit with medical conditions in our communities warrant consideration in the development of community benefit programs or resources? Discuss practical and ethical considerations.

3. In the article’s last two paragraphs, Bergamini highlights Catholic health care’s focus on people who are poor and vulnerable. In the cases of medically complex children — who often live where hospitals are not — what is your health system doing? Do you have suggestions for supporting the coordination, transportation or support of families?

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Framework for Ministry Formation

“Were not our hearts burning within us while he was talking to us on the road….?”

LUKE 24:32

In recognition of the growing importance of formation at all levels of Catholic health organizations, CHA is creating the Framework for Ministry Formation initiative to strengthen the Catholic identity of organizations in carrying out the healing mission of the Catholic Church in the world today.

Developed in collaboration with CHA members, the initiative will expand formation opportunities for persons at all levels of the organization, creating experiences that invite those who serve in Catholic health care to discover connections between personal meaning and organizational purpose. These connections will help the ministry flourish now and into the future.

“The Road to Emmaus” artwork by Mike Torevell is used with permission.

TO LEARN MORE, CONTACT Diarmuid Rooney, M.S.Psych., M.T.S., D.Soc.Admin.

CHA Senior Director, Ministry Formation DROONEY@CHAUSA.ORG

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Home Visits Set Stage for Health ALLEN SÁNCHEZ, STB, MA

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hen Maria Medina moved to Albuquerque, N.M., two years ago to get away from an unsafe domestic environment, she was able to briefly stay with a cousin, but she had no home, no transportation and limited options for food. She was 13 weeks pregnant. She felt afraid and hopeless. Through a collaboration with the Women, Infants, and Children (WIC) program, Maria was referred to CHI St. Joseph’s Children’s Home Visiting Program. The program’s staff visits families, encouraging prenatal care and providing education and resources for parents and babies.

Medina’s son, Miguel, initially needed a feeding tube as a medical intervention. The home visiting program linked her to Medicaid, to a government rental assistance program and to food benefits. Her home visitor says she has become a fierce advocate for herself and her son. Miguel, now off his feeding tube, is an energetic toddler.

Medina meets with her home visitor and they discuss child development, strategies for finances, her priorities and the scheduling of health care and other appointments. Mother and son are learning to live healthy lives.

New Mexico’s population is plagued by chronic illnesses such as obesity, hypertension, diabetes and congestive heart failure. When CHI St. Joseph’s Children strategized how to improve outcomes, our research took us back to the cradle.

It seemed that every health challenge we encountered had its roots and solutions in early childhood. Although it has areas of wealth and prosperity, New Mexico also suffers from extreme poverty that has jeopardized the long-term health outcomes of many of its people. In 2018, the U.S.

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Census ranked the state as having the highest rate of children living in poverty, and today it tops the list for children living with hunger and food insecurity. The Annie E. Casey Foundation Kids Count Report ranked New Mexico 50th in children’s well-being. According to Child Trends, the state also was categorized as having the highest rate of people who have experienced adverse childhood experiences (ACEs), or abuse, neglect and other potentially traumatic experiences under the age of 18.

The CHI St. Joseph’s Children ministry is supported by an endowment that was created when Catholic Health Initiatives (of which the Sisters of Charity of Cincinnati are a founding member) sold the former St. Joseph Healthcare System in 2002. Our Board reflected on both CHI’s mission and the healing work of the Sisters of Charity who arrived in New Mexico in 1865. The Board was challenged by two questions: How do we create the most systemic change to build healthy communities? Through what services could our investment have the greatest return?

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The answer was clear: to focus on early child- support for parents, program representatives link hood development and support for families and families to the resources they need. Adult partictheir children. CHI St. Joseph’s Children employs ipants are supported in making healthy choices early childhood educators, known as “home visi- and in managing their health in partnership with tors,” to meet with first-time parents as they care a medical home. Home visits happen during the for their children. The educators help parents time when the greatest potential for changing understand and recognize developmental mile- outcomes exists, as demonstrated by the research stones, offer ways to interact and play with infants of James Heckman, PhD, a University of Chicago and toddlers to promote connection and learning, professor, a Nobel Memorial Prize winner in ecoand answer questions related to raising a physi- nomics and an expert in the economics of human cally, mentally and emotionally healthy child. development. These skills and partnerships can Whenever possible, home visiting begins during empower the family for the rest of their lives. the prenatal stage, teaching parents about infant and toddler health, well-being and school readi- BUILDING TRUST ness. These visits continue once a week for three CHI St. Joseph’s Children’s home visitors are years. trained to share evidence-based curriculum with We all know young parents need support for families; of equal importance, they learn how to the health of their children and for their own well- approach each family with values of reverence, being. Changes in our society can make this chal- integrity, compassion and excellence. They build lenging. New parents often live far away from rel- trust, which is the key component to gaining the atives who could provide a family network while family’s commitment to the program. This can the new family is figuring out how to care for an lead to behavioral changes for the betterment of infant. In a dual-income economy, many house- their lives. holds have to rely on both parents working outWe once had a field representative from a nonside the home to bring in two salaries. profit funder visit our office, and four families in To illustrate the importance of early interven- our home visiting program joined us for lunch. We tion with children and their families, we can use were gathered around a large table, and a cheerful the analogy of comparing a child’s developing little 2-1/2 year-old girl was wandering around the brain to a New Mexico potter making beautiful room while people enjoyed their conversation. clay vessels. She takes the clay in her hands and The toddler bumped her head against a too-clean forms a pot, much like building the rapidly devel- window and ran into the arms of her home visitor, oping brain’s architecture. But poverty and the conditions often linked to it At a time when health care — like hunger, lack of shelter and lack of health coverage – can poke holes providers wrestle with the in that wet clay before it has a chance challenges of managing the health to dry. Later on, when society makes investments in kindergarten through of their communities, home visiting 12th grade education, and tries to pour those investments into the leaking pot, has proven to be a valuable society wonders why the children can’t approach. take advantage of those investments.

We know if a child arrives at school already behind the standard expectations for demonstrating the deep level of trust children and that age, she usually stays behind. We know that families have in their home visitor. At that point, if we’re to improve health outcomes, graduation the funder leaned over to me and said, “You’re rates and avoidance of later-life chronic diseases, going to get money!” we must pay attention to those first three years In a world where our families are challenged to of life. find quality time to raise their children, the home At a time when health care providers wrestle visitor becomes an anchor for them, a cornerwith the challenges of managing the health of stone for commitment to the responsibility given their communities, home visiting has proven to be to a family with the birth of their child. Home a valuable approach. In addition to education and visitors prepare weekly, individual lesson plans

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appropriate to the child’s age. In delivering these, the home visitor knocks on many doors: strong doors, differently painted doors, secure doors, even tattered cardboard doors. Once, while I was shadowing a home visitor, she and I approached a modest home in an immigrant neighborhood, whose residents call it a colonia. Because of the poverty in which this family lived, their door was a small wooden frame with stapled and duct-taped cardboard; yet behind the door was a family filled with joy and a smiling toddler eager to see her home visitor.

Home visiting is where we connect the dots, where a healthy beginning leads to a long-term healthy life. Recently, a young first-time mother shared with a home visitor how grateful she was that, because of her weekly home visits, she was able to “know her baby.” The home visitor, in fact, sometimes functions as a baby whisperer.

This is a simple acknowledgement, something we take for granted, something we believe is happening every day between parents and their children. And yet, like all of us, they are humbled by the arrival of this new little person and initially question their ability to care for their new child.

REFERRALS TO MEET NEEDS

A significant part of the CHI St. Joseph’s Children Home Visiting Program is its Enhanced Referrals.

The average family comes to us with five referral needs that include medical coverage, food insecurity and lack of housing. A referral specialist accompanies the home visitor to the home and connects families to needed resources, such as the Supplemental Nutrition Assistance Program (SNAP) and Medicaid. The parent is taught how to advocate for their child, to embrace the fact that they are the primary caregivers and educators of the child. These referral specialists, trained by CHI St. Joseph’s Children, meet the needs of the families and create the calm environment so necessary to absorb the curriculum that is delivered.

A recent example of this was when a referral specialist was called to attend a home visit to address the family’s food insecurity. The parents of a newborn child were living in an apartment that did not have a functioning refrigerator, which was essential for storing the mother’s breast milk for her baby. The referral specialist wrangled with the landlord of the apartment complex and did not leave until a functioning refrigerator was wheeled in.

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IMPORTANCE OF CULTURAL COMPETENCY

Our goal is that children reach kindergarten with the health and family capacity necessary to support learning. That goal has drawn us into collaboration with many organizations. Our ministry employees are educated to be culturally sensitive, respectful and effective in providing service for New Mexico’s diverse communities. Services are provided throughout seven counties that include Native American pueblos and immigrant colonias. Our home visitors meet with the Native American Pueblo of Acoma, including its village

TEACHING OTHERS ABOUT HOME VISITOR PROGRAMS

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HI St. Joseph’s Children offers two ways to assist others who may want to replicate our Home Visiting Program. The first is a semi-annual four-day International Study Tour covering every detail of operating a home visiting program. The second is a published manual with step-by-step instructions, related to everything from hiring to training and evaluation. (Please use the weblink below for contact information to request permissions to use the manual.)

The Study Tour introduces participants to the social determinants of health and our nation’s epidemic of adverse childhood experiences. Participants include newcomers to home visiting and those looking to achieve higher quality in existing programs. Participants are treated to presentations by scientific experts, researchers, home visitors, and families who are in the program as well as those who have graduated. The University of New Mexico delivers updates of the ongoing 22-year longitudinal study of our program during each Study Tour.

Interactive field trips help participants understand, rather than judge, families. One field trip takes participants to the ancient Pueblo of Acoma, with its famous Sky City. The second field trip takes participants to Santa Fe, the oldest capital in the United States, where they visit world class museums such as the Georgia O’Keeffe Museum and the Museum of International Folk Art. In the third field trip, participants shadow a home visitor as they visit a family expecting their first child or a family raising an infant or toddler.

The next Study Tour is scheduled for Sept. 15-19, 2019. Space is still available, and scholarships are offered. Registration information can be found at www.stjosephnm.org.

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of Acoma Sky City, the oldest inhabited pueblo/ village in the United States. Our staff has learned that cultural competence begins with listening, engaging with the community to understand its needs and its values, and how to apply those values in an appropriately delivered curriculum. The importance of cultural competence has led us to hire local staff who have mastered the language of their community. We provide home visiting services in nine languages through the linguistic expertise of the home visitor or by developing a relationship with a translator who attends each weekly home visit.

We sit on the border with Mexico. We find that our challenges go beyond the threat of a border wall, to walls that have been built in people’s minds and have limited society’s welcome to immigrants and refugees. Our home visitors attend an annual advocacy event at the state capital in Santa Fe called The 1000 Kids March, which we sponsor.

I remind our staff, as well as the throngs of families who attend, that our state seal has two eagles, not one: the American Eagle with its wings spread out and the eagle of the Mexican national flag; the American Eagle extends its reach to embrace the

We sit on the border with Mexico. We find that our challenges go beyond the threat of a border wall, to walls that have been built in people’s minds and have limited society’s welcome to immigrants and refugees.

Mexican Eagle. In this same way, our home visiting ministry spreads its wing and takes under it the care of the marginalized, the discriminated against and the poor. Living our Catholic Health Initiatives mission of fidelity to the Gospel urges us to emphasize human dignity, with a priority for the poor.

Over time, we’ve also developed additions to our curriculum, one being our Green Curriculum, which helps young families make changes for sustainable living. As Pope Francis’ encyclical letter Laudato Sí has called us to a new reality of embracing mother earth, the mothers and fathers

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of the young children participating in the home visiting program begin to absorb values of reverence for creation.

CARE FOR STAFF

Our home visitors encounter wonderful opportunities by sharing in the growth of a family and child. But sometimes, there are stressful situations that can cause burnout. CHI St. Joseph’s Children’s model is proactive in preventing burnout by supporting its staff through reflective supervision, a collaborative reflection between the home visitor and her supervisor that builds on the home visitor’s use of her thoughts, feelings and values. Additionally, staff members participate in “sub-communities” that give employees a time to reflect on organizational core values, thereby creating a community rather than a workforce. This care for the staff is vitally important, and we do not experience the very high turnover rate sometimes seen in social services.

REACHING GOALS

Our program offers universal access to our free services and is targeted to those communities with the greatest needs. The work of our home visitors and referral specialists has produced great results with program participants routinely reporting that: Women receive regular prenatal care Newborns have a healthy birth rate Mothers breastfeed for a minimum of one year Children have regular developmental assessments Children have current immunizations Children have decreased need for emergency room visits Children receive skills that promote school readiness Parents complete high school Families are integrated into the community Families are free from domestic violence Families are free from child neglect, physical, psychological or sexual abuse Parents are free from encounters with the judicial system.

OUTSIDE ASSESSMENT

CHI St. Joseph’s Children has grown to the be the largest home visiting program in New Mexico, providing 650-700 home visits per week. In order to confirm that our program is effective and

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benefiting the families we serve, we developed a collaborative Longitudinal Study with the University of New Mexico, following 400 families for 22 years.

The university conducted an implementation review. In this review researchers shadowed our home visitors and conducted surveys of our staff and facilitated focus groups. They concluded that the program follows the requirements and adheres to the model guidelines of the curricula of the First Born Program and Partners for a Healthy Baby. They interviewed our staff and administration; they shadowed our home visitors on their home visits; they studied our electronic files. All of this confirmed that the curricula were being faithfully followed. Further, they determined that the staff and administration understood the curricula and that the home visitors consistently covered topics in a manner appropriate to the particular situation of each family. The results of this review can be found at: http://isr.unm.edu/reports/2015/

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catholic-health-initiatives-st.-josephs-childrenhome-visiting-program-implementation-review.

We are now in the third year of the University of New Mexico’s Longitudinal Study, and we can confirm the positive outcomes. The university gathered over 29,000 data entries of reported health care visits in the state’s medical data bank.

For example, in the first year of life children in our program have a 14% greater motor function compared to children who are not in the program and less than a 1% need for visits to the emergency room.

Building on the health care tradition of what was St. Joseph’s Hospital in Albuquerque, CHI St. Joseph’s Children is approaching a decade of fulfilling its mission for community wellness through its home visiting program. Babies do come with instructions.

ALLEN SÁNCHEZ has served as president of CHI St. Joseph’s Children in New Mexico for 11 years.

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Aid Groups Seek to Reduce Orphanages, Expand Family-Based Care Globally SHANNON SENEFELD, PhD, PHILIP GOLDMAN and ANNE SMITH

“The family is the first essential cell of human society.” — Pope John XXIII

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oard any flight to Uganda this summer and you will find a plane full of enthusiastic, well-meaning tourists eager to volunteer at one of the many “orphanages” scattered throughout the country. They are eager to help a nation full of orphans who have nowhere else to go. Or so they believe.

The truth is, Uganda has few true orphans.

The AIDS crisis in Uganda never produced the “orphan crisis” the media reported, and even those children who lost both parents to the disease were raised mostly by extended family.

Today we know more than 80% of children growing up in so-called “orphanages” around the world have at least one living parent, including in Uganda.1 And like most parents, they want to bring their child home where they can love and protect them, if they can get the support they need.

It is estimated there are between 600-800 orphanages in Uganda alone, and most of them are foreign owned. But it is likely there are many more since less than half of them are legally registered. This is an increase from 1999, when there were only 39 orphanages. We know this rapid rise in orphanages is not in response to a need, but rather part of a burgeoning industry that sees profit over care for children.2 Not all orphanage owners are unscrupulous, but most are able to raise money and attract volunteers by posting images of the children on the internet. They also form partnerships with par-

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ishes and other well-meaning groups throughout the United States that donate money, publicity and other kinds of support, including volunteer trips and missions.3 A steady stream of wellmeaning volunteers who “pay to play” are funding these orphanages and unwittingly supporting the terrible harm that institutions inflict on these children, despite their best intentions.4

Even the best orphanages with the most caring staff cannot replace the love and care of a family. Children need families.

Volunteers usually stay for short visits. They show affection and then return home, which disrupts the attachment process and leaves children with many problems in their emotional and psychological development.5 The resulting desperation for affection and love leaves them much more vulnerable to others who seek to exploit and abuse them.6 Even the best orphanages with the

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most caring staff cannot replace the love and care and coordination of child protection and social welfare systems. It strengthens community and of a family. Children need families.

“Children form friendships so easily and they national systems for preventing harm to children get attached to people so easily, especially if and to support children at risk.

The MacArthur Foundation’s competition you’ve been separated from your real family, so it is very easy to get attached to someone. So, after offered a single $100 million grant to solve one of a short period of time these people would leave. the world’s most critical social problems. CRS, We would cry, I remember; these are lost dreams, shattered dreams, because when Orphanages are not cost effective. they came in they were a sign of hope, but Studies show that money spent on now they’ve left,” says Ruth Wacuka, who spent part of her childhood in a Kenyan orphanages can support six to 10 orphanage, and is now an advocate with the Kenya Society of Careleavers and a times as many children living in public speaker on the harms of orphanfamilies, with better results. age care.7 Children are placed in orphanages primarily because of poverty and a lack of basic Lumos, and Maestral leveraged the opportunity to services, such as education or specialized care create an initiative that would mobilize other likefor children with disabilities. More than 80 years minded organizations, raise awareness, promote of research shows that children living in orphan- new policies and encourage well-meaning donors ages are at greater risk of impaired development to shift their support away from orphanages and in their cognitive, physical, emotional, social and toward families. From among the 1,904 proposals life skills. Studies illustrate that children who submitted, the MacArthur Foundation endorsed remain in orphanage care have cognitive develop- the solution by naming it one of four finalists for ment that is lower when compared to those placed the grant.

Although the proposal, called Changing the in foster care, and significantly lower than those that were never in an orphanage. Long-term con- Way We Care, was not selected as the winner of sequences include significantly higher rates of the competition, the MacArthur Foundation comunemployment, drug abuse, sexual exploitation mitted $15 million to the program over five years.

Additional resources from the U.S. Agency for and suicide.8 In addition, orphanages are not cost effective. International Development, known as USAID, Studies show that money spent on orphanages and the GHR Foundation, a private design-build can support six to 10 times as many children living philanthropy, allowed the project to launch last in families, with better results.9 For donors, this fall with a total budget of $24 million.

With this critical funding commitment, teams means every dollar they donate can ultimately support six to 10 more kids if it is spent on ser- began catalyzing and building on existing momenvices that support families instead of orphanages. tum to form a more cohesive global movement Despite this evidence, orphanages continue to that will work with others globally to prevent chilexist, and in some parts of the world the phenom- dren from entering institutions, while working to reintegrate them into safe, nurturing families. The enon is growing.

To respond to this problem, three organiza- ultimate goal is a safe and loving family for every tions — Catholic Relief Services (CRS), Lumos, child.

In October 2018, Changing the Way We Care and Maestral International — joined forces for the MacArthur Foundation’s 100&Change competi- launched in three countries: Guatemala, Kenya tion in 2017. Catholic Relief Services carries out and Moldova. Working hand in hand with chilthe commitment of the U.S. bishops to assist the dren, families, communities and governments, poor and vulnerable overseas. Lumos, founded by the initiative is building upon the expertise of the author J.K. Rowling and named for a light-giving three organizations and the body of evidence and spell from the Harry Potter books, seeks to end best practices built thus far, using programmatic the institutionalization of children. Minneapo- successes and evidence collected to influence lis-based Maestral International includes global political bodies, funders and other countries.

Through this work, Changing the Way We Care experts in its work to support the development

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is building foundations and models for how to transition from orphanages to family care for children, as well as broader care reform to systems at national government levels that need to accompany these processes. As additional resources become available, more demonstration countries will be added to show solutions across diverse settings. Changing the Way We Care also will work with Catholic and other faith-based partners in the United States to shift the way the faith community supports vulnerable children abroad.

Part of the work includes educating anyone who hopes to volunteer in an orphanage and asking volunteers to keep in mind that most developed countries did away with orphanages decades ago because of the harm caused to children. We must remember our own history. There are far better ways to help the world’s most vulnerable families and ensure that children in Uganda, Haiti, Guatemala and many other countries across the globe have the love and nurturing that only a family can provide.

“Number one, volunteering is a good thing, but there is a better way to do it,” said Wacuka, who suggests the use of more people trained in ways to strengthen families. “If you want to go to an orphanage, how about you engage in an activity that is less [in contact] with the children … Number two, so many people who come to volunteer are not qualified, they have less skills, they do not know how to handle vulnerable children. Remember, these are very vulnerable children.”

More information about Changing the Way We Care is at https://www.changingthewaywe care.org/ SHANNON SENEFELD, senior vice president for overseas operations at Catholic Relief Services, and PHILIP GOLDMAN, founder and chief executive of Maestral International, are Governing Board members for Changing the Way We Care.

ANNE SMITH is the global director of Changing the Way We Care.

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NOTES 1. John Williamson and Aaron Greenberg, “Families, Not Orphanages” (working paper series), Better Care Network, Aug. 31, 2010, https://bettercarenetwork. org/library/particular-threats-to-childrens-care-andprotection/effects-of-institutional-care/families-notorphanages; See also Changing the Way We Care website, https://www.changingthewaywe care.org/.

2. BBC Radio–File on 4 documentary, “The Orphanage Business,” 2019, https://www.bbc.co.uk/programmes/ m00020z7.

3. BBC Radio, “The Orphanage Business.”

4. Mark Riley, “Volunteers Are Fueling the Growth of Orphanages in Uganda,” The Guardian May 16, 2016, https://www.theguardian.com/global-developmentprofessionals-network/2016/may/16/volunteers-stopvisiting-orphanages-start-preserving-families.

5. Next Generation Nepal, “The Paradox of Orphanage Volunteering,” 2014, https://nextgenerationnepal.org/ wp-content/uploads/2017/08/The-Paradox-of-Orphanage-Volunteering.pdf.

6. Kristen E. Cheney, Karen Smith Rotabi, “Addicted to Orphans: How the Global Orphan Industrial Complex Jeopardizes Local Child Protection Systems,” Better Care Network, 2016, https://bettercarenetwork.org/library/ the-continuum-of-care/residential-care/addicted-toorphans-how-the-global-orphan-industrial-complexjeopardizes-local-child-protection.

7. Kenya Society of Careleavers: www.kesca.org.

8. Charles A. Nelson et al., “Cognitive Recovery in Socially Deprived Young Children: The Bucharest Early Intervention Project,” Science 318, no. 5858 (Dec. 21, 2007): 1937-40.

9. Lumos UK, “Funding Haitian Orphanages at the Cost of Children’s Rights,” https://www.wearelumos.org/ resourcesfunding-haitian-orphanages-cost-childrensrights/.

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CHRISTUS Moves Beyond Hospital Walls To Tackle Asthma SUE JOHNSON, RN

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he burden of asthma is explained this way: “It is like breathing through a squished straw.”

“It feels like someone is hugging me and squeezing the air out of my body.”

“My lungs feel tight but also ready to burst.”

Those descriptions are all from school-aged children and shed light on the reality of life living with asthma. Childhood asthma has developed into a major public health concern. Among children ages 5 to 14, the disease prevalence increased 74% between 1980 and 1994, according to the Centers for Disease Control and Prevention. Asthma affected 26 million Americans and nearly 340 million people worldwide in 2016, according to the Global Burden of Disease study. Asthma can profoundly affect quality of life. And as we have learned at CHRISTUS St. Michael Health System in Texarkana, asthma is not just a health issue for children — it can also take a toll on education.

Respiratory issues are among the leading causes of absenteeism among students in this part of the country and others. As its name might suggest, Texarkana is located on the border between Texas and Arkansas, and is just a few hours east of Dallas, where communities also share our challenges associated with pediatric asthma.

In San Antonio, you will find the same sorts of challenges at the only freestanding children’s hospital in the Alamo City, The Children’s Hospital of San Antonio. It is here that CHRISTUS Health operates an asthma and allergies program to help children and their families take control of

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their breathing, helping thousands of children in a city known for its environmental triggers for people with asthma. San Antonio averages nearly 30 days of ozone action days a year, according to the Alamo Area Council of Governments. Local TV weather forecasters regularly highlight air quality alert days on their morning shows, letting commuters and the community know when to expect poor air quality.

There is currently much public policy debate regarding air quality and disagreement from some state lawmakers on a recent decision by the U.S. Environmental Protection Agency to deem Bexar County, in which San Antonio is located, as non-compliant with federal ozone standards.

Although we know of no local data that connects the air quality with the daily exacerbations of asthma among schoolchildren, it is certainly a contributing factor. In asthma, something — air pollution, allergens, exercise, stress, certain chemicals — causes the airways of the lungs to narrow or become blocked, making it hard to breathe. No matter the day, however, there is plenty of pollen in South Texas where “Cedar Fever” is a known chronic ailment among allergy and asthmatic sufferers.

Steamy afternoons in the summer and moun-

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tain cedar in the winter offer little to no relief to hospital, further education is offered — includasthma sufferers. In addition, home environments ing a tangible asthma action plan that families include plenty of irritants from dust mites, ciga- can carry with them when they leave. The plan is rette smoke, pet dander and mold. Kelley Smith, geared toward patients and their caregivers, and MD, a pediatric pulmonologist at The Children’s covers ways to manage life with the illness, what Hospital of San Antonio, recalls one case in which to do every day as you live with asthma, when to mold was to blame for a young child’s severe call for help and when to come to the emergency asthma attacks. A mother and her three children, room. The goal is to get everyone who is involved including her middle son with asthma, lived in with the child’s care on the same page. an apartment. That apartment recently had been However, truly working toward a solution damaged by water, leading to a mold-infested meant going outside our emergency departments environment. The landlord was unwilling to let and hospital walls and out into the communities the family out of its lease. The mold was exacerbat- we serve. For the last several years, a Delivery Sysing asthma problems for the middle son, such as tem Reform Incentive Payment (DSRIP) funded severe shortness of breath, coughing and wheez- program through a Medicaid waiver has enabled ing, leading to some hospitalizations for the child. us to operate a CHRISTUS St. Michael Mobile It required some work, but Smith and his staff pushed the issue to If asthma is not managed correctly, it get the child into a safer environcan become a struggle to breathe and ment. Case management and a comprehensive team of caregivers sends many parents and their children jumped into action. Caseworkers communicated closely with the to the emergency room. landlord, advising the landlord of the possible liability of renting an apartment with Pediatric Asthma Program in Texarkana. (In 2011, mold to such a sick child. The result: the family Texas received federal approval for a waiver allowwas released from the lease without penalty and ing the Centers for Medicare & Medicaid Services the family was able to move. and states more flexibility in designing programs Smith still sees the child occasionally and to ensure delivery of Medicaid services.) reports their work didn’t just open up a child’s airways, but opened up a way to a healthier home GIVING KIDS AIR TO SOAR environment for the family and a chance for a In the fighting spirit of St. Michael the Archanyoung boy to play soccer and live life more fully. gel, the Spirit of St. Michael fights asthma today Smith spends a great deal of time helping families in Texarkana. The Spirit of St. Michael is what we and children understand what an asthma diag- call our mobile asthma program that has helped nosis entails. Asthma, he explains, is more com- more than 3,000 children since it began in 2014. plicated to manage than other afflictions — you The program includes a mobile outreach vehicle, have to use the right inhalers at the right time with equipped with intake and treatment stations and the right technique. In addition, asthma involves a private examination area. strategies of prevention. He explains to families Young people like 11-year-old Abbey Fricks that you do not brush your teeth only when you were among the first we helped. Abbey’s mother get a toothache. It requires daily attentiveness. If noticed her child’s irregular breathing after being asthma is not managed correctly, it can become a active for just a short period. Although Abbey struggle to breathe and sends many parents and often seemed to have issues with her sinuses and their children to the emergency room. allergies, her mom shared that Abbey’s breathAs a health care leader in the ministries we ing just did not sound like it should. About the serve, CHRISTUS Health does not let the burden time the family’s concerns started to mount, of asthma fall on a family or an individual alone. young Abbey brought a flyer home from school At The Children’s Hospital of San Antonio, asso- regarding the Spirit of St Michael’s CHRISTUS ciates have put together a team approach to take St. Michael Mobile Pediatric Asthma Program. care of patients suffering from asthma. From the The Spirit of St. Michael mobile unit was going to emergency department to various units within the be at her school, and the screening was free. Her

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parents agreed it would be a good opportunity to have her screened.

In fact, it proved to be a life changer. Abbey and her parents worked closely with the nurses on board the unit. They performed a number of screenings. At a follow-up appointment, a nurse practitioner informed the family Abbey did indeed have asthma. The nurse practitioner then provided the family with education and answered their questions. Mom and dad report that Abbey now manages her asthma very well. She knows what triggers her attacks and knows when she needs treatments.

The Spirit of St. Michael is an important service that removes barriers for children and their families who may be unable to travel or pay for preventive asthma care. From demonstrating how an inhaler can help a child breathe easier to talking about how to minimize asthma triggers such as dust, tobacco smoke and other common substances at home, the team on board takes preventative and diagnostic care to a school’s doorsteps.

THE PARTNERSHIP AND THE RESPONSE

Together, CHRISTUS St. Michael Health System and the University of Texas Health Northeast in Tyler, Texas, launched our Mobile Pediatric Asthma Program in 2014. It helps a truly underserved pediatric population in 12 Texas counties with a goal of implementing a collaborative program of chronic disease management for children who have serious respiratory problems to improve access to care and potentially prevent hospitalizations. Program participants who do not have a primary care provider are referred.

This is a vital need; CHRISTUS St. Michael Health System’s current community needs assessment shows access to care as one of our top 12 priorities. When access to care is limited, people may forgo routine preventive care or diagnostic services commonly provided by a primary care physician. Among the people we serve, nearly one in five (19%) self-reported not having a consistent source of primary care, or someone they consider their personal doctor.

The Mobile Pediatric Asthma Program has been very beneficial to students who were unaware they had asthma by screening them and directing them to appropriate caregivers as well as appropriate medications. Genesis PrimeCare, a federally qualified health center in the area, has been there as a helpful follow-up for those young Medicaid patients needing primary care and

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pediatric asthma care. Asthma can be very hard on families living in poverty or without health insurance, and proper asthma management may be difficult when you are worried about paying for other crucial things like food or housing. Not only that, but a lack of transportation can also influence effective asthma management. That is why it is an opportunity to address pediatric health concerns like asthma at a child’s school.

The National Asthma Control Program, launched by the Centers for Disease Control and Prevention in 1999, suggests children who receive asthma-management training and evaluation have fewer hospitalizations and fewer days when their symptoms were so severe that they had to cut back on activities than those who do not.1 However, there is much more work to be done.

For children who cannot easily access health care providers, schools can be a particularly effective route for evaluation and education, as can the internet and social media.

Smith is encouraged by outreach efforts like the ones in Texarkana and has also made himself available online. He has put together an important education video to help mom, dad, or anyone else who cares for a young asthmatic because getting an asthma diagnosis means you have to learn some new lingo.2 Passing on those new phrases and education accurately can be challenging, and a 20-minute visit in a doctor’s office might not be enough.

It’s just one more way that we have to meet our patients where they are, in new ways and when possible on their turf. No one should be kept in the dark about asthma, and most certainly not left on the sidelines or sitting out on life. At CHRISTUS, we believe children with asthma deserve to live their best lives without worries about trips to the emergency room, and we hope these replicable interventions help them do just that.

SUE JOHNSON is director of advocacy and community planning for CHRISTUS St. Michael Health System in Texarkana, Texas.

NOTES 1. Centers for Disease Control and Prevention’s National Asthma Control Program: https://www.cdc.gov/asthma/ nacp-20-years.htm.

2. Asthma education video: https://www.christushealth. org/santa-rosa/childrens-hospital-of-san-antonio/ services-treatments/allergy-asthma-and-immunology/ asthma-education.

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Responding to Transgender Youth with Dignity and Respect We in Catholic health care are committed to providing high quality and respectful care to all patients who come to us, including those who are experiencing gender dysphoria. There is a great deal we do not know about the transgender reality: few long-term studies exist, and neither the origins of transgenderism nor the outcomes of various treatment options are fully understood.

The Catholic Church is carefully and conscientiously considering the clinical, biological and psychological information now available.

We have included the topic of transgender youth in this edition of Health Progress devoted to Young People at Risk, because of the unique risks and vulnerabilities that they experience. We believe this is important because our tradition values the real experience of these individuals, and good medical practice calls us to understand and care for our patients as fully as possible. Author Erin Kelser’s discussion and recommendations reflect her clinical and journalistic expertise in an area that merits much more study. The Catholic Health Association of the United States does not, however, represent or endorse a particular ethical position about transgenderism.

ERIN ARCHER KELSER, RN

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ost of us think of our sex (our designation as biologically male or female at birth) and our gender (our concept of ourselves as masculine or feminine) to be the same.

The great majority of us identify our biological sex with our gender. Scientifically, this is known as being “cisgender.”

When a person’s sense of their own gender is incongruous with that person’s sex assigned at birth, they are referred to as “transgender.” Data from the Centers for Disease Control and Prevention indicate that 0.6% of U.S. adults identify as transgender. That translates into roughly 1.4 million U.S. adults, double the estimate from 10 years ago. Prevalence varies by geography, but is consistently found to be rising among young adults.1 By definition, transgender people are not people who have both male and female biological traits (previously called “hermaphrodites,”

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now called “intersex”) or people who like to dress as the other gender (known as “transvestites” or “cross-dressers.”) By definition, transgender people have a deep-seated “gender identity” that is incongruent with their assigned biological/natal sex.2 Many transgender people identify as the opposite gender from that assigned at birth: “trans women” were born male, and “trans men” were born female. Others align themselves with both genders or neither gender. All of these people fall under the definition of “transgender.”

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This article is intended to be a brief introduction to the current information available about transgender (often referred to as “trans”) people in the United States, a discussion of why trans people, and trans youth particularly, constitute a group at-risk, and the current medical and psychological recommendations for their care.

TRANSGENDER YOUTH = YOUTH AT RISK

bian, Gay, Bisexual, Transgender, and Queer or Questioning), a number disproportionate to the estimated 5% LGBTQ percentage in the general population. Among homeless LGBTQ youth, the single greatest reason contributing to their homelessness was being forced out of their home or running away, specifically due to their families’ rejections of their sexual orientation or gender identity/expression.4 Many transgender people report violence and the everyday fear of violence. According to The Report of the 2015 U.S. Transgender Survey, or

Large studies have repeatedly shown that transgender people are at disproportionately high risk for family and social rejection, discrimination, violence, poor health outcomes, homelessness and povData showed that trans people face much erty, drug and alcohol abuse higher rates of discrimination, assault, and suicide.

In 2019, the CDC presented joblessness and homelessness than the the results of a study in which almost 132,000 U.S. students in general population. Many trans people the 9th-12th grades were suralso lack access to health care. veyed regarding sex, gender, violence and risk behaviors.

Almost 2% of the sample identified as transgender, USTS, over 1/3 of trans people limit what they eat which surprised the researchers. The research- or drink in public, simply to avoid using public ers were particularly alarmed to find that, within restrooms.5 the group who identified as transgender, 35% had In April 2019, the American Medical Associaattempted suicide in the last 12 months. These tion filed a legal brief with the 9th Circuit Court trans youth also were shown to be more likely to of Appeals regarding an Oregon case, stating experience violence and bullying, substance use that denying trans students bathrooms of their and to engage in sexually risky behaviors.3 affirmed gender, “endangers their health, safety Trans youth are consistently at a higher risk and well-being, leads to negative health outcomes for homelessness. In 2015, the Williams Institute and heightens stigma and discrimination.” The at the University of California, Los Angeles, found Oregon Medical Association, as well as a dozen that 40% of homeless teens were LGBTQ (Les- other mental health and health care organizations, agreed, saying that denial of proper bathroom facilities leads to urinary tract infections and risk of chronic kidney disease, constipation, TRANSGENDER CARE GUIDELINES harassment and assault of trans students.6 The WPATH Standards of Care: The World Professional The 28,000 respondents to the U.S. TransgenAssociation for Transgender Health (WPATH) has been der Survey indicated that many issues related to advocating for trans people and establishing guidelines rejection and alienation can persist into adultsince 1979. A link to version 7 of the WPATH standards is hood. Data showed that trans people face much on its website: www.wpath.org. higher rates of discrimination, assault, joblessness and homelessness than the general populaThe UCSF (University of California, San Francisco) tion. Many trans people also lack access to health Center of Excellence for Transgender Health has care. For those who have been rejected by their numerous guidelines: http://transhealth.ucsf.edu. families, the rates of negative outcomes are much The Endocrine Society’s Guidelines for treating gender higher. Over 50% of respondents had attempted incongruent/gender dysphoric persons: https://www. suicide in the course of their lifetimes, a rate endocrine.org/guidelines-and-clinical-practice/clinicalapproximately 9 times higher than the general practice-guidelines/gender-dysphoria-gender-inconpopulation.7 gruence.

Repeatedly, the most protective factor against these risks has been found to be affirmation and

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respect for their gender identity by the trans person’s peers and family of origin. Family support has not been shown to be a determinant for whether or not someone is transgender, but it has been shown to be a determinant for improved mental health outcomes.8 Studies that had age and gender-matched control groups found that trans youth affirmed in their identities had rates of depression no different from their peers,9 presumably translating into lower risk for suicide.

GENDER AFFIRMATION

Many people assume that trans people are trying

to “choose” their gender, but transgender people almost always assert that they did not choose this path for themselves, would not have chosen willingly to be transgender. Most trans people report trying to repress their gender identity until it became a psychological and medical emergency.

For this reason, “chosen gender” and “chosen pronouns” are not used in this article. In the current medical language of the day, “affirmed gender” will be used instead.

Most major medical societies, including the American Academy of Pediatrics, the American Medical Association, the American Academy of

HOW CAREGIVERS CAN SUPPORT TRANS YOUTH AND THEIR FAMILIES Realize, first and foremost, that transgender and gender-diverse people are human beings worthy of respect, quality care and compassion.

Offer your help and support, realizing that the youth and/or their family have probably been struggling with these issues for quite a while, and they may be having a difficult time. Realize that they are not doing this to be “rebellious” and are probably just trying to preserve the life and happiness of the trans person.

Reserve judgment and listen, just as you would with any other youth or parent who is struggling with a health issue.

Realize that both cisgender and transgender people can present in a broad range across the gender spectrum. It’s best not to assume anyone’s gender identity based on how “masculine” or “feminine” they seem to you. Use cues like a person’s first name to assess gender. Chances are that someone named Tiffany or Elizabeth uses female pronouns, for example. If you are unsure, it is okay to ask.

Realize that many trans people have not yet changed their identity on all of their legal documents and insurance cards. Call them by their chosen name and feature it prominently in the chart. Calling a trans person by a birth name they no longer use (a.k.a. “dead-naming”) or by pronouns with which they no longer identify (a.k.a. “misgendering”) can “out” them to others and alienate a trans person, sometimes permanently.

Realize that transgender people are in danger of being harassed, assaulted and constantly

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“outed” when made to use bathrooms that correspond with their birth sex. Making trans youth go to the nurse’s office or to a bathroom that doesn’t correspond to their gender identity is deeply stigmatizing and undermines affirmative care. Research shows that trans people are the ones at risk in public bathrooms, not other people. Having at least one all-gender bathroom in schools and public facilities is a good way around this issue.

Realize that not all trans people desire medical interventions, like hormones or surgery. Each transgender person’s path is individual, and it may be an ongoing and continuously evolving process.

It is not okay to ask trans people if they’ve had “the surgery.” People (or their parents) often find it rude and creepy if a stranger asks them about their genitals (or their child’s).

Realize that transgender people do not think of themselves as “choosing” this path. Rather, many trans people actively tried to repress their gender identity for prolonged periods of time, often until they felt they could no longer do so.

For most trans people, affirming their gender identity became a medical and psychological emergency.

Don’t be afraid to ask questions, but also don’t expect trans people to educate you. To better understand trans people or the struggles of their families, try to find information that trans people helped to create.

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Child and Adolescent Psychiatry, the American all of the specialties are not available at the same Academy for Family Physicians, the American location, care can be carried out at different locaPsychiatric Association, the American Psycho- tions, using excellent communication and collablogical Association and the Endocrine Society oration between them.12 have spoken out recommending affirmation of a trans person’s gender identity and access to gen- WHAT CAUSES A PERSON TO BE TRANSGENDER? der-affirmative (also known as transgender or Gender diverse behaviors are common in young “cross-gender”) care. They say that affirmation children, but it appears that only a minority of treatment is medically necessary, relatively safe gender diverse children will continue to identify and leads to vastly better outcomes for transgen- as transgender and gender diverse (TGD) after der people. puberty. When TGD people do not persist in a Although these large medical societies rec- transgender identity, it is referred to as “desisommend that providers advocate for their trans tance.” Current research indicates that gender patients, studies have shown that transgender dysphoria in prepubertal children persists into people sometimes experience maltreatment by adolescence/adulthood in a minority of cases, but medical providers, including harassment and vio- is most likely with children who have been consislence. Trans people who are denied care show an tent, persistent and insistent in their transgender increased risk of suicide and self-harm.10 identity. In contrast to prepubertal TGD youth, Some previous approaches, like trying to gender dysphoria that intensifies with the onset “wait-and-see” if gender identity changes, trying of puberty rarely subsides.13 to “redirect” a youth to their natal gender or closer Being gender diverse and being transgender to neutral, or trying to “cure” a transgender per- are not considered to be psychological disorders. son with “reparative” (a.k.a. “conversion”) ther- In 2013, when the American Psychiatric Associaapy are not currently recommended, due to the tion released the fifth edition of the “Diagnostic fact that these approaches have not been found and Statistical Manual of Mental Disorders,” or to be helpful and may be deeply harmful. None the DSM-5, they removed the diagnosis of “gender of these approaches follow the child’s lead about identity disorder” and replaced it with the diagtheir gender identity, and the current medical and nosis of “gender dysphoria.” Key to the diagnosis psychological establishments believe that these approaches induce shame, Being gender diverse and being alienation and stigma in trans youth.11 For some trans people, affirmation transgender are not considered to may involve medical intervention (horbe psychological disorders. mones or surgery), but not for all. Social transitioning is when a trans person begins to present as their affirmed gender. Some is the gender incongruence between the person’s transgender people, especially children, seek to experienced gender and the gender assigned to “socially transition” temporarily while explor- them by others, lasting greater than six months. ing their feelings and options. Others socially For children, the desire to be of the other gender transition first before pursuing further medical must be “present and verbalized.” treatment.

Specific to the diagnosis, the condition of genParticularly for adolescents and adults, a mul- der dysphoria causes “clinically significant distidisciplinary team experienced with transgender tress or impairment in social, occupational, or issues should be utilized, but this is not always other important areas of functioning.” Although available. Ideally for adolescents, the multidisci- the “gender dysphoria” diagnosis helps with plinary team should consist of behavioral health access to affirmative care, the American Psychiatprofessionals (for example, child and adolescent ric Association has made clear that they left “genpsychiatrists, therapists), pediatric specialists der dysphoria” in the DSM-5 primarily to preserve (such as endocrinologists or pediatric medical transgender people’s access to care, not because gender specialists), and other medical/surgical they consider it to be a mental illness. Because of specialists (such as gynecologists and urologists). the way our medical and insurance systems are Other specialties sometimes can include pelvic currently designed, diagnostic codes are needed floor physical therapists and speech therapists. If to render care and to bill for it. The “gender dys-

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An increasing body of research indicates that some of the brain structures and hormones of trans people resemble those of their affirmed gender, providing possible biological explanations for transgender identities. phoria” diagnosis allows for a range of ongoing physical and behavioral health care, even after transitioning.14 An increasing body of research indicates that some of the brain structures and hormones of trans people resemble those of their affirmed gender, providing possible biological explanations for transgender identities. In utero exposure to cross-sex hormones may also play a role, but these mechanisms are not yet completely understood.15

THE RANGE OF GENDER-AFFIRMATIVE CARE (“TRANSITIONING”)

Gender-affirmative treatment approaches range from fully reversible to fully irreversible. Gender affirming surgeries are not offered to people under the age of 18, and pubertal suppression or cross-sex hormone therapy is not offered to adolescents unless they have entered puberty and other psychological, medical or social problems have been addressed.16 (The discussion below is merely a brief overview. Guidelines for diagnostic criteria, dosages of puberty blockers and cross-sex hormones, ongoing lab tests needed and psychosocial interventions are discussed in the links to Transgender Care Guidelines on Page 46.)

Social transitioning (Fully reversible)

Social transitioning is when a trans person begins to present as their affirmed gender. Social transitioning is the first step for many transgender people, and the only gender-affirmative treatment for prepubertal children. Social transitioning generally involves changes of clothing, hair and other gender signifiers. Additionally, the person may change their name and their gender pro-

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nouns. For many trans youth who are “consistent, insistent and persistent” in their identity, it can be very freeing to finally feel like they are living as themselves.

Although social transitioning is fully reversible physiologically, a cross-gender social transition is often recommended only for transgender youth who are “consistent, insistent and persistent” in their transgender identity. Behavioral health resources should be utilized by the youth and the whole family, in order to explore feelings around the gender transition, to cope with stigma and to develop a logistical and safety plan for the transition. Parents and other family members also should have access to counseling to explore any fears, resentments or feelings of loss and grief.

Pubertal Suppression (Fully reversible) (Often at age 11/12 to 15/16)

Trans youth most likely to persist as transgender into adulthood can experience profound distress at the onset of puberty. Because secondary sex characteristics can be difficult to hide once they manifest entirely (increased body hair, voice changes and an Adam’s apple in natal boys and breasts in natal girls), pubertal suppression is often recommended (for those for whom it is clinically indicated) at Tanner Stage 2, often determined by the presence of breast buds, testicular/ penile enlargement, or hormone levels above prepubertal levels.17 (The Tanner scale is a measure of physical reproductive development.)

Some providers recommend that the trans youth have some experience with puberty (hence not assessing desire for suppression until Tanner Stage 2), as some youth “persist” with a transgender identity at this time, while others “desist” to the gender of their natal sex. For those who persist in their transgender identity during puberty, pubertal suppression appears to lead to less distress during adolescence and into young adulthood.18 Because pubertal suppression is fully reversible, a gender-diverse youth who decides not to pursue further hormonal treatment can stop treatment and resume the puberty of their natal sex.

Pubertal suppression also makes it more likely that the person will later be able to “pass” in their affirmed gender identity without needing extensive and uncomfortable treatments (for instance, extensive hair removal and voice lessons for trans women, and daily breast-binding or later breast removal for trans men).

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There have been concerns that there may be loss of bone mass due to pubertal suppression, but bone mass accrual appears to resume when cross-sex hormone (CSH) therapy is started.19

Cross-sex hormone therapy (Partially reversible) (Often at age 15/16-18)

Cross-sex hormone therapy strives to simulate hormonal levels in the affirmed gender, appropriate to age. This means that affirmed females might begin to grow breasts and that affirmed males might begin to grow facial hair. Although there have been risks to cardiovascular health during CSH in adults, there is not yet evidence of this occurring in adolescence.

Gender affirmation surgeries (Irreversible) (After age 18+)

Trans health guidelines dictate that a country’s legal age of consent be the absolute minimum age for any gender-affirmation surgeries. Surgeries are only offered to those who have persisted in social transitioning and CSH therapy for an extended period of time. Letters from medical and behavioral health providers are required, and insurance may not cover various surgeries.

Generally, transgender people discuss “top surgery” and “bottom surgery,” as shorthand for surgeries involving chest reconstruction and genital reconstruction. Again, not all trans people will desire hormones or surgeries. Data from the USTS showed only 25% of trans people reported having had any kind of transition-related surgery,

RESOURCES FOR FURTHER READING About Transgender People (from the National Center for Transgender Equality): https://transequality.org/about-transgender 2015 National Transgender Survey: http://www.ustranssurvey.org Stories about being transgender: https://www.nytimes.com/interactive/2015/opinion/ transgender-today/stories About being transgender and Catholic: https://www.nytimes.com/interactive/2015/opinion/ transgender-today/stories/nick-stevens The National Catholic Reporter trans stories: https://www.ncronline.org/social-tags/transgender

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Behavioral health resources should be utilized by the youth and the whole family, in order to explore feelings around the gender transition, to cope with stigma and to develop a logistical and safety plan for the transition. but approximately half of the respondents desired one or more surgeries. Seventy-eight percent of respondents desired hormone therapy, but only 49% had received it.20 Each individual’s path is different, depending upon their gender identity, their degree of dysphoria, their medical co-morbidities and their access to care and payment resources.

There is much that we still don’t understand about gender-diverse experiences and transgender care. Recent years have given way to increased research, visibility and access to care for transgender people. The medical and psychological communities are in agreement that being transgender is not a disorder and should not be stigmatized. In order to help transgender people to survive and thrive, we may need to learn from their experiences and to reassess what constitutes quality health care that respects their innate human dignity.

ERIN ARCHER KELSER is a nurse and freelance writer in Tucson, Ariz.

NOTES 1. Andrew Flores et al., “How Many Adults Identify as Transgender in the United States?,” The Williams Institute, UCLA School of Law (June 2016).

2. Jason Rafferty, “American Academy of Pediatrics Policy Statement: Ensuring Comprehensive Care and Support for Transgender and Gender-Diverse Children and Adolescents,” Pediatrics 142, no. 4 (2018): e20182162.

3. Michelle Johns et al., “Transgender Identity and Experiences of Violence Victimization, Substance Use, Suicide Risk, and Sexual Risk Behaviors Among High School Students — 19 States and Large Urban School Districts, 2017,” Morbidity and Mortality Weekly Report 68, no. 3 (2019): 67–71.

4. Soon Kyu Choi et al., “Serving Our Youth 2015: The

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Needs and Experiences of Lesbian, Gay, Bisexual, Transgender, and Questioning Youth Experiencing Homelessness,” UCLA’s Williams Institute with True Colors Fund (2015).

5. Sandy James et al., “The Report of the 2015 U.S. Transgender Survey,” (2016) Washington: National Center for Transgender Equality http://www.ustranssurvey.org/ reports#USTS 6. Tanya Henry, “Exclusionary Bathroom Policies Harm Transgender Students,” American Medical Association website, April 17, 2019.

7. James et al., “Report 2015 Transgender Survey.”

8. Rafferty, “American Academy of Pediatrics Policy Statement.”

9. Kristina Olson et al., “Mental Health of Transgender Children Who Are Supported in Their Identities,” Pediatrics 137, no. 3 (2016): e20153223.

10. Endocrine Society, “Position Statement: Transgender Health,” September 2017.

11. Johanna Olson-Kennedy and Michelle Forcier, “Management of Transgender and Gender-Diverse Children and Adolescents,” UpToDate (2019). https://www.uptodate.com/contents/management-of-transgender-andgender-diverse-children-and-adolescents.

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12. Annelou de Vries, Daniel Klink and Peggy CohenKettenis, “What the Primary Care Pediatrician Needs to Know About Gender Incongruence and Gender Dysphoria in Children and Adolescents,” Pediatric Clinics of North America 63, no. 6 (2016): 1121-35.

13. Michelle Forcier and Johanna Olson-Kennedy, “Gender Development and Clinical Presentation of Gender Diversity in Children and Adolescents,” UpToDate (2019). https://www.uptodate.com/contents/gender-development-and-clinical-presentationof-gender-diversity-in-children-and-adolescents.

14. American Psychiatric Association, “Gender Dysphoria,” a news release discussing the 2013 update to the DSM-5, (2013).

15. Endocrine Society, “Position Statement.”

16. de Vries, Klink and Cohen-Kettenis, “Primary Care and Gender Incongruence.”

17. Olson-Kennedy and Forcier, “Management of Transgender and Gender-Diverse Children.”

18. de Vries, Klink and Cohen-Kettenis, “Primary Care and Gender Incongruence.”

19. de Vries, Klink and Cohen-Kettenis, “Primary Care and Gender Incongruence.”

20. James et al., “Report 2015 Transgender Survey.”

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Protecting Young People From Human Trafficking SR. ROSEMARY DONLEY, SC, PhD, APRN, FAAN and CARMEN KIRALY, PhD, APRN

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uman trafficking is not a 21st-century phenomenon. For centuries, people of every nation have exploited others to show dominance or gain profit. Youth, including those who are poor or from abusive or neglectful homes, are among the most vulnerable.

Human trafficking is the recruitment, transportation, transfer, harboring or receipt of persons by threat or use of force or other forms of coercion, such as abduction, fraud, deception and payments/benefits to family members or guardians who exploit vulnerable persons under their care. Exploitation includes prostitution or other forms of sexual exploitation, forced labor or services, slavery or practices similar to slavery, servitude or the removal and sale of organs.1 People entrapped by trafficking may be des- stations, and on high school and college camperate, naive, impoverished citizens of develop- puses. Others meet traffickers on social media, ing or developed countries, lured into an under- dating sites or the dark web. 6 Recruiters use ground $150-billion-dollar economy to work in the sex, agriculture or Although it is difficult to get an exact fishing industries, domestic or nanny count on human trafficking, it’s services, or forced to work off a debt, known as debt bondage.2 People also estimated there are 21 million victims are trafficked to harvest their organs, to serve in their countries’ armies, worldwide. Of those trafficked including child soldiers, or to enter globally, 49% are women, 23% are into early marriages.3 Although it is difficult to get an exact count on girls, 21% are men and 7% are boys. human trafficking, it’s estimated there 4 are 21 million victims worldwide. Of those trafficked globally, 49% are women, 23% are different strategies: gifts, access to drugs and alcogirls, 21% are men and 7% are boys.5 hol, romance or coercion. They offer friendship, admiration and the promise of more exciting lives.

SEX TRAFFICKING OF WOMEN AND GIRLS Preying on loneliness, online traffickers, usually Human trafficking often exists in plain sight, but older men or women, learn about the lives and it can be so hard to see. Traffickers do not respect aspirations of young people. After gaining their age, gender, race or country of origin. Contrary trust, they arrange meetings and lure them into to popular belief, human trafficking happens in sex work.7 every country, including in the United States, in Young women brought to the United States our communities. Young American women are for sex work often come from Asia. They recruited into the sex trade in malls, bus and train can be deceived with promises of jobs, good

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salaries and career pathways. Poor families may sell their daughters to traffickers. Unfortunately, what happens when these young women arrive in the United States is far from what they or their families expected.8 Young Asian women may not speak English or be familiar with America’s culture or norms. When their traffickers take their identifying papers, they are trapped.

Victims of trafficking suffer physical and psychological abuse. Many victims of trafficking were abused before they got “in the life.” The homes that young people have escaped from may be worse than their present situations. They lack trust. Some victims fear their traffickers and will not speak in their presence. Others who are trafficked are sure that they are with someone who will protect them and give them love and support.

RESOURCES FOR IDENTIFYING AND RESPONDING TO TRAFFICKING IN A HEALTH CARE SETTING American Hospital Association – Identifying and Assisting Victims of Human Trafficking: www.aha. org/identifying-and-assisting-victims-human- trafficking

Annals of Emergency Medicine — Human Trafficking article: www.annemergmed.com/article/S01960644(16)30359-6/fulltext

National Human Trafficking Resource Center — Recognizing and Responding to Human Trafficking in a Health Care Context: https://humantrafficking hotline.org/sites/default/files/Recognizing%20 and%20Responding%20to%20Human%20 Trafficking%20in%20a%20Healthcare%20Context_ pdf.pdf

ACEP Now — How to Spot and Help Human Trafficking Victims in the Emergency Department: https:// www.acepnow.com/article/how-to-spot-and-helphuman-trafficking-victims-in-the-emergency-department/

The Joint Commission — Identifying Human Trafficking Victims: https://www.jointcommission.org/ issues/article.aspx?Article=Dtpt66QSsiI%2FHRkIecK TZPAbn6jexdUPHflBjJ%2FD8Qc%3D

Patient Safety and Quality Healthcare — Identifying Human Trafficking Victims: https://www.psqh. com/news/joint-commission-issues-guidance-onidentifying-human-trafficking-victims/

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Beatings give victims of trafficking reasons to fear serious harm to themselves or their families.

Sex workers are threatened if they do not follow their traffickers’ orders. If victims lack proper documentation, they are warned that they will be reported to the Immigration and Customs Enforcement Agency, or ICE.9 Persons in the sex trade suffer from sexual infections and other injuries. Because genital infections negatively affect “business,” girls or women with sexually transmitted diseases are taken to emergency departments or walkin clinics. The history and information given to the health team are inaccurate and follow-up appointments usually are not kept. It is easy not to recognize victims of trafficking during brief encounters.

Sex trafficking diminishes personal as well as public health. While risks to traffickers are few, the costs to persons who are trafficked are complex and persist after the trafficking has ended.10 (See sidebar for links to information about trafficking awareness and interventions in health care settings.)

Some working to end trafficking believe that the only way to stop human sexual trafficking is to control demand by fining and arresting men who pay for sex, closing motels, hotels and massage parlors with a pattern of prostitution on site, and fining owners.11 Other remedies include the monitoring and blocking of online dating sites and websites like Backpage.com where men arrange for sex.12 (Backpage.com was seized by federal agencies in 2018 as part of an enforcement action.)

TRAFFICKED DOMESTIC WORKERS

Although the majority of trafficked women find themselves immersed in sex work, women also are trafficked for domestic work or care of children. Trafficked domestics and nannies work long hours in homes around the world for low wages.

Recruited internationally, they may be college students seeking summer work in the United States or poor women from developing countries looking for work. When they sign up with staffing agencies, their terms of employment are not clearly stated. Because they live with families, they are hidden from public view; the trafficking of domestic workers is largely invisible. Trafficked domestic workers work more hours than the standard work week and receive less than the minimum wage.13 While not all domestic workers and nannies suffer from low salaries, crowded

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living conditions and long working hours, many trafficked domestic workers and nannies are abused.14, 15

EXPLOITATIVE NURSING CONTRACTS

the alliance reported that 69% of nurses who had completed visa screens prior to entering the United States reported positive experiences, while 14% of the sample reported negative experiences. Foreign-born nurses found it difficult to live in communities without people from their countries of origin. Others were overwhelmed by professional expectations and the culture of American health care. When foreign-born nurses failed to fulfill their contracts, they were required to assume the debt for the cost of their coming to the United States.18

Those working in health care should be aware that some workers from foreign lands, notably nurses in hospitals and long-term care facilities, are lured into working in the United States through unfair labor practices. Working in the United States is appealing to foreign-born nurses who are seeking higher salaries and better professional opportunities. For example, nurses from India and the Philippines often are approached by staffing agencies FORCED LABOR IN AGRICULTURE, FISHING, because they have been educated in English. The THE MILITARY Philippines, especially, has a surplus of nurses Forced labor occurs when persons work because because nursing schools there train more nurses of coercion or intimidation. Victims of trafficking than are needed in their country. in the agriculture industry come from America’s Some staffing agencies require that nurses sign guest worker, migrant and seasonal worker comcomplex legal contracts as a condition of migra- munities: men, women, families and children, tion. Some foreign-born nurses overlook the fine some as young as 5 years of age. It is estimated print in the contract. The contract describes how that such farm workers number about 2 million staffing agencies will assist nurses in navigating to 3 million people. They experience wage theft, work visas, travel arrangements, living accom- dangerous working conditions and exposure to modations near their worksite and other services. pesticides.19 The foreign-born nurse agrees to a salary that is less than newly Forced labor occurs when persons hired registered nurses with similar experience. The hospital pays work because of coercion or the staffing agencies’ recruitment intimidation. Victims of trafficking in and placement costs. In signing the contract, which usually covthe agriculture industry come from ers three years, nurses agree to its terms.

America’s guest worker, migrant and Economic abuse of foreignseasonal worker communities: men, born nurses who enter the United States on work visas is a concern women, families and children. of governments, nursing associations and interest groups working to prevent and combat human trafficking. WorkIn its 2018 Trafficking in Persons Report, the ing at the policy level, the CGFNS, also known as U.S. State Department highlighted countries the Commission on Graduates of Foreign Nursing where human trafficking is evident in the fishing Schools, and its Alliance for Ethical Recruiting industry.20 There are reports of young children have developed a Code for Ethical International forced to work on fishing boats. In one example, Recruiting. The alliance certifies staffing agen- a mother from Ghana, no longer able to feed her cies that have policies and practices that meet the children, sold her two young sons to a fisherman. code’s standards. Its staff offers education about The children were rescued when inspectors visethical recruitment practices to international ited the ship. nursing associations, schools of nursing and forEach year, the State Department publishes a list eign-born nurses. Consultation and pre-depar- on its website that includes countries divided into ture orientations for nurses also are provided.16, 17 tiers; Tier Three countries are those that are not Not all staffing agencies take advantage of meeting minimum standards to prevent human foreign-born nurses. Based on survey findings, trafficking.21 The International Labor Organiza-

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tion and Walk Free reported that 152 million children, between 5-17 years of age, were laborers in 2017.22 Forced work is dangerous, exposing workers to injury, harmful materials and toxic wastes as well as physical and verbal abuse.

Another form of trafficking is the recruitment of children to serve in their country’s army.

The U.S.’ Child Soldiers Prevention Act of 2008 defines a child soldier as any person under 18 years of age who is compelled to serve in his or her country’s armed forces; is recruited to serve in another country’s army, or is a child under 15 who is voluntarily recruited into the government’s armed forces.23 Children are increasingly being recruited as fighters, domestic workers, sex slaves, spies and messengers in conflicted areas of the Middle East and Africa, with numbers more than doubling from 2012 to 2017.24

TRAFFICKING TO HARVEST ORGANS

Organ transplantation is an amazing medical procedure that has extended the lives of many. However, organs are scarce resources. Trafficking persons for organ donation is called illegal organ trade, transplant tourism or organ purchase. The story is simple. The rich seek out the poor and pay them for their organs. People with money can buy organs from poor individuals anywhere in the world. Organ trafficking is a hidden, underground and underreported activity. It provides another example of how poverty forces people to sell their bodies or parts of their bodies in order to live.

Organ trafficking makes up a miniscule percentage of trafficking; however, there’s been little to indicate there are aggressive efforts to combat it.

WHAT DRIVES HUMAN TRAFFICKING?

What causes individuals, corporations and countries to engage in or ignore human trafficking?

Poverty within countries and among families, personal and corporate greed, and the desire to participate in the supply chain and compete on price in the world’s markets are what drive the use of forced labor, including the labor of children. The Bureau of International Labor Affairs maintains a list of products believed to be produced by children and the countries where these child workers are exploited. The most recent list, published by the Department of Labor in March, reveals that 35 products were made with the forced labor of children in 25 countries.25 These data call attention to companies that use forced labor to bring their products to market around the world. The range

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of products varies widely from sugarcane to coffee, garments to gold, and much more. 26

ENDING TRAFFICKING

Within the last decade, efforts to end human trafficking within the United States have progressed from a social movement to improved federal prosecution and policies to fight the crime. Verbal accounts of trafficking from survivors helped garner the interest of government officials,27 and

Victims of trafficking are not found in back alleys; they are present in health care settings, in neighborhoods and in schools. approaching human trafficking as a moral crusade made its horrors real.

Clinicians, health care providers, public health workers and educators acknowledge that more education is needed to identify persons who are being trafficked for sex work as well as those at risk of being trafficked. Victims of trafficking are not found in back alleys; they are present in health care settings, in neighborhoods and in schools.

Even in those settings, victims are elusive and have reasons not to trust people and agencies that could help them. Providing emotional and legal support to human trafficking victims is imperative and part of the solution in eradicating trafficking.

Recently, there has been a change in focus from prosecuting the victims of human trafficking to prosecuting others, for example, those who recruit and profit from the victims of trafficking. There is increased awareness that the internet enables human trafficking. Recent literature reflects interest in decreasing the demand for paid and exploitative sex. This lens causes professionals and ordinary citizens to report men who pay for sex. Others want massage parlors, hotels and motels that indirectly profit from the trafficking industry to be raided, and their owners to be publicly embarrassed and fined.

Public and professional awareness about the scope of human trafficking and its impact on local and global communities needs to be strengthened. Human trafficking demands the attention of the public and private sectors,28 and its victims deserve our compassion and proactive support.

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Children and young teens are especially vulnerable to trafficking in its many forms. Trafficked young people are vulnerable to injuries, HIV and other sexually transmitted diseases, overdoses of drugs or alcohol, and suicide. Prevention of trafficking saves young lives.

SR. ROSEMARY DONLEY, SC, is a professor of nursing and holds the Jacques Laval Chair for Justice for Vulnerable Populations in the School of Nursing at Duquesne University in Pittsburgh.

CARMEN KIRALY is a professor in the School of Nursing at Suffolk County Community College in Brentwood, NY.

NOTES 1. United Nations Office of Drugs and Crimes, Global Report on Trafficking (United Nations publication, No. E.19.IV.2), www.unodc.org/documents/data-andanalysis/glotip/2018/GLOTiP_2018_BOOK_web_ small.pdf.

2. United Nations Office of Drugs and Crimes, Global Report on Trafficking.

3. Child Soldiers International, Annual Report 2016-2017, https://www.child-soldiers.org/news/annual-report2016-17.

4. World’s Children, 21 Million People Worldwide are Victims of Human Trafficking, www.worldschildren.org/ trafficking-guide?gclid=EAIaIQobChMIhYaCq-u24Q VgoWzCh1PEQRREAAYASAAEgI-kPD_BwE. 5. United Nations Office of Drugs and Crimes, Global Report on Trafficking.

6. U.S. Department of Homeland Security, What Does Human Trafficking Look Like?, www.dhs.gov/ blue-campaign/what-does-ht-look-like.

7. Matthew Johnson and Meredith Dank, The Hustle: Economics of the Underground Commercial Sex Industry, Urban Institute (2014), http://apps.urban.org/ features/theHustle/index.html.

8. Eleanor Goldberg, “Super Bowl Is Single Largest Human Trafficking Incident in U.S.: Attorney General,” Huffington Post, Feb. 3, 2013, https://www.huffpost. com/entry/super-bowl-sex-trafficking_n_2607871.

9. U.S. Immigration and Customs Enforcement, “Human Trafficking and Smuggling,” (2013, revised 2017), www. ice.gov/es/factsheets/human-trafficking.

10. Marcelo Suarez-Orozco, Carola Suarez-Orozco and Winmar Way, “The Empire of Suffering: Tracking of Children in the Global Millennium,” Paper from Workshop 2-3, Pontifical Academies of Sciences, Pontifical Academies of Social Sciences and World Federation of the

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Catholic Medical Associations (Nov. 2013), http://www. endslavery.va/content/endslavery/en/publications/ scripta_varia_122/suarez_orozco.html.

11. Sarah Godoy, “We Cannot End Sex Trafficking without Addressing Demand,” Forbes, Jan. 11, 2018, https:// www.forbes.com/sites/rebeccasadwick/2018/01/11/ human-trafficking-demand/#22be60d84b7c; Kevin Malone, “Sex Trafficking Is a Pandemic in the U.S., and It’s Time to End Demand,” The Daily Signal, Dec. 4, 2018, https://www.dailysignal.com/2018/12/04/ sex-trafficking-is-a-pandemic-in-the-us-and-its-timeto-end-demand/. Charlotte Alter and Diane Tsai (video), “Catching Johns: Inside the National Push to Arrest Men Who Buy Sex,” Time, Special Report 2015, http://time. com/sex-buyers-why-cops-across-the-u-s-target-menwho-buy-prostitutes/.

12. “Human Trafficking and the Dark Web,” Medium, Feb. 6, 2017, medium.com/homeland-security/ human-trafficking-and-the-dark-web-bfb9bbae62dc.

13. John Cavanaugh and Ai-jen Poo, “Human Trafficking of Domestic Workers in the United States,” Findings from the Beyond Survival Campaign–National Domestic Workers Alliance and Institute for Policy Studies (2017) 1-42, https://ips-dc.org/wp-content/uploads/2017/03/ Beyond-Survival-2017-Report_FINAL_PROOF-1-1.pdf.

14. Suzanne H. Jackson, “Marriages of Convenience: International Marriage Brokers, ‘Mail-Order Brides,’ and Domestic Servitude,” University of Toledo Law Review 38, no. 895, 2006-2007, heinonline. org/HOL/LandingPage?handle=hein.journals/ utol38&div=61&id=&page=.

15. Kimberly A. Chang, Julian McAllister Groves, “Neither ‘Saints’ nor ‘Prostitutes’: Sexual Discourse in the Filipina Domestic Worker Community in Hong Kong,” Women’s Studies International Forum 23, Issue 1, (Jan.-Feb. 2000), 73-87.

16. Franklin A. Shaffer et al., “Code for Ethical International Recruitment Practices: The CGFNS Alliance Case Study,” Human Resources for Health 14, (Suppl 1), 31.

17. See the website of the Alliance for Ethical International Recruitment Practices, www.cgfnsalliance.org/.

18. Ron Hurtibise, “Sunrise Firm Settles Suit with Nurse Who Claimed She Was Threatened with Immigration Fraud Charges,” South Florida Sun-Sentinel, Aug. 10, 2018, https://www.sun-sentinel.com/business/ fl-bz-medpro-recruitment-firm-agrees-to-modify- policies-20180809-story.html.

19. Monica Ramirez, “Human Trafficking in the Agricultural Industry: Prevalence and Risk Factors,” slide presentation, www.google.com/url?sa=t&rct=j&q =&esrc=s&source=web&cd=1&ved=2ahUKEwiN ntjTm9LhAhVNqlkKHXkoA-cQFjAAegQIBhAC&url =https%3A%2F%2Fwww.nationallatinonetwork.

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org%2Fimages%2FHuman_Trafficking_in_the_ Agricultural_Industry_Monica_Ramirez.pdf&usg= AOvVaw03sHlk60uSJ8TSpe5TubMQ. 20. U.S. State Department,”Trafficking in Persons Report 2018,” https://www.state.gov/j/tip/rls/tiprpt/2018/.

21. U.S. State Department, “Tier Placements and Regional Maps,” https://www.state.gov/j/tip/rls/ tiprpt/2018/282584.htm.

22. Beate Andress, International Labour Organization, “Forced Labour–Why Definitions Matter,” Feb. 3, 2014, https://www.ilo.org/global/about-the-ilo/newsroom/ news/WCMS_234854/lang—en/index.htm.

23. U.S. State Department, “Trafficking in Persons Report 2018.”

24. Child Soldiers International, Annual Report 20162017. Radhika Coomaraswamy, “Girls in War: Sex Slave, Mother, Domestic Aide, Combatant,” U.N. Chronicle XLVI, no. 1-2 (Jan. 2009), unchronicle.un.org/article/ girls-war-sex-slave-mother-domestic-aide-combatant.

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25. U.S. Department of Labor, Bureau of International Labor Affairs, “Child Labor, Forced Labor and Human Trafficking,” 2018, www.dol.gov/agencies/ilab/ our-work/child-forced-labor-trafficking.

26. U.S. Department of Labor, Bureau of International labor Affairs, List of Goods Produced by Child Labor or Forced Labor, www.dol.gov/agencies/ilab/reports/ child-labor/list-of-goods.

27. Ronald Weitzer, “The Social Construction of Sex Trafficking: Ideology and Institutionalization of a Moral Crusade,” Politics & Society 35, no. 3 (Sept. 1, 2007): 447-75, https://journals.sagepub.com/doi/ abs/10.1177/0032329207304319.

28. David Barney, “Trafficking Technology: A Look at Different Approaches to Ending Technology-Facilitated Human Trafficking,” Pepperdine Law Review 45, no. 4 (2018), 747-84, https://digitalcommons.pepperdine. edu/plr/vol45/iss4/3/.

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NEW END-OF-LIFE RESOURCE FROM CHA BY PROMINENT THEOLOGIAN THOMAS F. O’MEARA, OP

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“This book is a roadmap for our journey toward God.” PETER C. PHAN,

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This new publication from CHA by prominent theologian Thomas F. O’Meara, OP, explores the Catholic Church’s tradition of God’s promise of eternal life. In addition to drawing on Scripture and the writings St. Augustine, St. Thomas Aquinas, and renowned contemporary thinkers, the book incorporates examples from art, literature and music to illustrate how the Catholic imagination has interpreted and visualized our doctrinal tradition on our journey to the next life.

The new publication is part of CHA’s popular collection of end-of-life guides to help patients, families, physicians, clinicians, pastoral care providers, ethicists and care givers who deal with decisions about serious illness or death. It is also an ideal reference for professors and graduate students in theology and bioethics.

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Improving the Response for Young People with Psychosis JESSICA M. POLLARD, PhD

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t first, Brandon* agreed to meet with an outreach worker to talk about outpatient treatment just because he wanted to get out of the psychiatric hospital. The 20-year-old had gone through a frightening ordeal being picked up by the police and brought to the emergency department. He couldn’t recall a lot of what had happened, but he remembered believing people were out to get him and hearing voices warning him about strangers on the street.

A STEP outreach worker told Brandon about of a police car or ambulance. Typically, there are how the team at Specialized Treatment Early in numerous opportunities when young people and Psychosis would support him in getting a job, their families can ask for help before that point, returning to school, feeling less paranoid, and but few are familiar with the early warning signs how they would work with him and his family to of psychosis and other mental illnesses. Psychosis better understand what was going on and how to is a brain-based and environmentally influenced manage it. Brandon was encouraged by this conversation and agreed to give the Unfortunately, many transitional program a try; later that day, a therapist age youth — those in the phase from STEP came by to introduce herself, set up his first appointment and from older adolescence through talk about what some of his goals for young adulthood — enter treatment treatment might be. Brandon learned that he’d be working with a multidiscifor serious mental illness the way plinary team to develop an individual, recovery-oriented plan. Based on his Brandon did: in the back of a police needs, it could involve employment car or ambulance. and school support, education for him and his family on psychosis and how to manage it, skill building, medication prescribed condition that can occur in the context of many at minimum effective dosing, and lots of support mental disorders (for example, schizophrenia, — a model known in the United States as Coordi- major depression, bipolar disorder) and physical nated Specialty Care. health disorders (including temporal lobe epiUnfortunately, many transitional age youth — lepsy, HIV, Parkinson disease). For a diagnosis of a those in the phase from older adolescence through psychotic disorder, one or more “positive” sympyoung adulthood — enter treatment for serious toms or the adding on of experiences that weren’t mental illness the way Brandon did: in the back present prior to onset must be present. Positive symptoms include hallucinations (having false *Identifying details have been changed to protect perceptions; seeing, hearing, smelling, tasting or confidentiality. feeling things that aren’t there), delusions (false

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beliefs outside of the person’s culture that they warning signs, or they may provide false assurcontinue to hold onto even when there is evidence ances and further delay appropriate treatment. to the contrary, often bizarre, paranoid, somatic In our work at STEP, we have seen that there or grandiose), and disorganization (jumbled up or are numerous help-seeking events along the way confused thinking and speech). Primary psychotic before transitional age youth actually receive the disorders (for example, schizophrenia) often also medications and specialty care they need. This is include negative symptoms or the taking away frustrating not only for patients and their famiof things that the lies, but it can have person had prior to an enormous negaEARLY WARNING SIGNS OF PSYCHOSIS onset, and cognitive tive consequence symptoms or thinkon the prognosis.

Change in sleep pattern Decreased concentration ing d iff i c u l t i e s.

Extensive research Appetite disruption Decreased energy Negative symptoms has demonstrated Mild perceptual abnormalities include decreased that the Duration of Overly abstract or rigid thinking emotional expresUntreated Psycho Increased preoccupation sion, social intersis, or DUP — the Increased focus on unusual beliefs a c t i o n , m o t iva time it takes from Abrupt mood swings or diminished affect tion, energy and onset of symptoms Decline in hygiene Increased irritability initiation. Cognito an appropriate Digressive, tangential speech Social withdrawal tive symptoms can connection to treatlook very similar to ment — is one of the Loosening of associations attention deficit/ strongest predichyperactivity distors of short- and order and include difficulty with attention, orga- long-term outcomes; the longer this duration, nization, planning, procedural and verbal learn- the worse the symptoms and functioning of the ing, memory and abstract ability. A great screen- individual. What is particularly tragic about these ing question to elicit information about potential poor outcomes is that many people — such as warning signs that a transition age youth might school personnel, friends and family, clergy, youth not bring up out of embarrassment is “Do you ever organization staff, law enforcement and health feel like your mind is playing tricks on you?” Early care providers — had contact with the young perwarning signs represent changes for the transi- son and either failed to recognize warning signs tion age youth and vary by individual but there or didn’t know what actions to take if they did see are a lot of common signs to look for. (See box for them. Lack of knowledge about early signs of seriearly warning signs of psychosis.) ous mental illness, even among medical profesEven when there is recognition that something sionals, is a huge detriment to young people at is wrong, patients and families face a fragmented risk, most of whom will have seen a primary care health care system and experience real uncer- provider or pediatrician at some point during the tainty about where to turn for appropriate treat- unfolding of illness. ment. Young people with onset of mental illness There are many potential reasons for these lost may be misdiagnosed, may have to wait weeks or opportunities. Stigma continues to be a pervasive months for an appointment while they are expe- problem: we don’t often talk about mental illness riencing terrifying symptoms and functional and, when we do, it’s usually in negative and stedecline, or may hear discouraging messages that reotyped or outdated ways. Historically, we have they are doomed to a life in and out of hospitals not done well at treating serious mental illnesses or institutions or that they’ll be permanently dis- such as schizophrenia; disability was common, abled. Conversely, early on, when the transition and many in psychiatry used circular reasoning age youth is experiencing milder symptoms and when someone with a psychotic disorder did function has not yet been tremendously impaired, recover or do well, concluding they must have health care providers may not catch important been misdiagnosed and not actually had psycho-

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sis. Health care providers in general continue to get little to no education regarding serious mental illnesses, the warning signs and the importance of early intervention in these mental illnesses.

What we see of disorders like schizophrenia in popular culture is sensationalized and perpetuates stereotypes of mentally ill individuals as violent, homeless, poorly functioning or disabled. In reality, people with psychotic disorders are much more likely to be victims of violence than perpetrators of it. They account for a very small percentage of violent crime, and many live and work successfully in the community. Stigma and lack of knowledge make it less likely that the families and friends around people with early warning signs of mental illness will facilitate access to care. These factors also discourage young people from seeking help out of shame and embarrassment, and the realistic concern that they may be treated poorly or discriminated against.

Why is this such an important problem to address? As the former director of the National Institute of Mental Health, Thomas R. Insel, MD,

put it, “Mental disorders are chronic diseases of young people”1 and yet we pay them relatively little attention. While 1 in 5 young people experiences a mental disorder, our public mental health systems are geared toward older adults. Pediatric providers often are not trained in recognizing or treating serious mental illness. Schizophrenia remains the top cause of disability worldwide and an enormous health care cost — $60 billion annually in the U.S.2 People with schizophrenia die much younger, including from preventable causes such as cardiovascular disease, diabetes and cancer.3 Psychotic disorders are much more common than most people realize: 1 to 3 out of every 100 persons will experience psychosis in their lifetime. Each year 100,000 young people in the U.S. will develop psychosis. The early stage of psychotic disorders is the period of highest risk compared to other phases of illness. The numbers are daunting — the mortality rate in the first year after onset of the disease is 24 times higher than peers who don’t have psychosis.4 The time period also represents the greatest risk of violence

STRATEGIES FOR ENGAGING YOUNG PEOPLE WITH PSYCHOSIS INTO CARE Listen first!

Convey optimism.

– Hear them out, use their language.

–V alidate the experience, don’t get focused on the content.

–F or example, “That sounds really frightening.”

–A sk permission before offering your perspective.

Attend to non-verbal cues.

– I f transitional age youth appear uncomfortable, guarded or agitated, back off for a bit.

Switch to a more enjoyable or neutral topic.

–W ork your way back to what you need to ask but switch back as often as necessary.

Be mindful of your own nonverbal cues.

– Try to convey you are comfortable.

–R emain poised in response to bizarre or concerning content.

Normalize the experiences.

–F or example, “It’s really common for young people to struggle with …”

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–C ommunicate that most people get back to their lives with support and treatment.

–E mphasize the importance of early intervention and provide analogies for early intervention with any other health problem.

Never take a “wait and see” approach if you see warning signs! Remember, one of the most effective strategies in improving outcomes is reducing Duration of Untreated Psychosis.

Refer to the nearest Coordinated Specialty Care Program for assessment and treatment.

Check the National Association of State Mental Health Program Directors’ Early Psychosis Resource Center listing of treatment programs to find the nearest Coordinated Specialty Care (CSC) program. If there aren’t any CSC programs nearby, there are many effective strategies that can be applied by any mental health provider willing to learn more.

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toward self and others. Most of the functional STEP ran an early detection campaign over the decline takes place in the first few years of onset, past four years, educating not only mental health and the longer it takes to get proper treatment, professionals on the early warning signs of psythe less chance there is of recovery of functioning. chosis and the importance of early intervention, Despite these dire statistics, there is plenty of but also the general public, schools, colleges, unireason for optimism. Over the past few decades versities, law enforcement, youth organizations, there has been a growing international move- clergy and primary care. Despite the fragmentament, with supporting research, for early inter- tion of the health care system, we were able to sigvention and emphasis on youth mental health. The first studies in Europe and Just as important as recognizing Australia demonstrated that comprehensive early intervention could dra- early warning signs in youth is acting matically improve the course of illness for young people with psychosis rather on them productively. The goal is to than later treatment.5 In Norway, a mul- instill the young person and their tifaceted early detection outreach and education campaign was able to bring family with optimism that this is a Duration of Untreated Psychosis down treatable problem and to impress to a matter of a few weeks, and independent living outcomes for patients upon them that early treatment whose condition was identified and treated early remained significantly works. better than those from the usual detection region over a decade later.6 nificantly reduce Duration of Untreated PsychoIn the U.S., as a partnership between Yale Uni- sis for patients in STEP compared to a control site versity and the Connecticut Department of Men- in Boston. tal Health and Addiction Services, the STEP ProThe takeaway message from the evidence gram opened in 2006 and conducted the first ran- presented is that all of us who come into contact domized clinical trial of early intervention in this with young people in transition from childhood country.7 Using existing frontline staff to ensure to adulthood, whether professionally or personour findings would be easily replicable, we found ally, can play a role in early detection, facilitate that one year after entering treatment over 90% connection to effective care and dramatically of patients in STEP were vocationally engaged, improve trajectories. As we said in our campaign they were significantly less likely to be hospital- “early detection saves minds.” ized and spent fewer nights in the hospital when Just as important as recognizing early warning they were admitted, and experienced greater signs in youth is acting on them productively. The symptom improvement compared to those in goal is to instill the young person and their family usual treatment. The National Institute of Men- with optimism that this is a treatable problem and tal Health then funded a large-scale clinical trial to impress upon them that early treatment works. called RAISE (Recovery After Initial Schizophre- Often people with psychosis lack self-awareness nia Episode)8 comparing specialized early inter- that they have symptoms — this is called anosogvention (also known as Coordinated Specialty nosia — and may believe their experiences are Care) to usual treatment in sites across the coun- real; it’s counterproductive to get into a power try and similarly found better outcomes. Thanks struggle and much more effective to focus on the in part to federal investment, such as block grants, person’s goals as reasons to get treatment or supwe’ve gone from a handful of programs in the port. For example, in STEP we often engage peoearly 2000s over 240 Coordinated Specialty Care ple around work, school or relationship goals, and programs in 2019. We also have demonstrated that we tie treatment to helping with those aspects of early detection is possible in the U.S. where there functioning rather than focusing on symptoms. is not a streamlined single payer system as there (See the sidebar for more guidance on facilitating is in Norway. access to care when you see early warning signs.)

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So, what happened to Brandon? He worked with the multidisciplinary STEP team for a few years; finding the lowest effective dose of medication with his STEP psychiatrist, meeting with the employment specialist to find a job and get support around adjusting to work, getting education about psychosis and developing coping strategies with his therapist, and joining his family for sessions on communication skills and problem solving. Brandon started spending time with friends again and eventually went off to college, connecting with mental health treatment there with the support of the STEP team. Successes like Brandon’s are the norm in programs like STEP and, with the help of the public, and more specifically those who work in health care whether at the provider or system level, they can become the norm for young people across the country in the early stages of serious mental illness.

JESSICA M. POLLARD is a licensed clinical psychologist, clinical director of early psychosis and an assistant professor in the Yale University Department of Psychiatry in New Haven, Conn.

She is the program chair and chair-elect of the mental health section of the American Public Health Association.

NOTES 1. Thomas Insel, blog post, “May 6th: Children’s Mental Health Awareness Day,” April 26, 2010, https://www. nimh.nih.gov/about/directors/thomas-insel/blog/2010/ may-6th-childrens-mental-health-awareness-day.shtml.

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2. Huey Yi Chong et al., “Global Economic Burden of Schizophrenia: A Systematic Review,” Neuropsychiatric Disease and Treatment 12, (2016): 357-73.

3. J.J. McGrath et al., “Schizophrenia: A Concise Overview of Incidence, Prevalence, and Mortality,” Epidemiology Review 30, (2008): 67-76.

4. Michael Schoenbaum et al., “Twelve-Month Health Care Use and Mortality in Commercially Insured Young People with Incident Psychosis in the United States.”

Schizophrenia Bulletin 43, no. 6 (2017): 1262-72.

5. Christoph U. Correll et al., “Comparison of Early Intervention Services vs Treatment as Usual for Early-Phase Psychosis: A Systematic Review, Meta-analysis, and Meta-regression: Effectiveness of Early Intervention Services for Early-Phase Psychosis,” Journal of American Medicine Psychiatry 75, no. 6 (2018): 555-65.

6. Wenche ten Velden Hegelstad et al., “Long-term follow-up of the TIPS early detection in psychosis study: effects on 10-year outcome,” American Journal of Psychiatry 169, no. 4 (2012): 374-80. doi:10.1176/appi. ajp.2011.11030459.

7. Vinod H. Srihari et al., “First-Episode Services for Psychotic Disorders in the U.S. Public Sector: A Pragmatic Randomized Controlled Trial,” Psychiatric Services 66, no. 7 (2015): 705-12.

8. John M. Kane et al., “Comprehensive Versus Usual Community Care for First-Episode Psychosis: 2-Year Outcomes from the NIMH RAISE Early Treatment Program,” American Journal of Psychiatry 173, no. 4, (2016): 36272, doi:10.1176/appi.ajp.2015.15050632.

9. Vinod H. Srihari et al., “Reducing the Duration of Untreated Psychosis and Its Impact in the U.S.: The STEP-ED Study,” BMC Psychiatry 14, (December 2014): 335. doi: 10.1186/s12888-014-0335-3.

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Events from The Catholic Health Association International Outreach Networking Call Aug. 7 | 3:30 p.m. ET

Essentials for Leading Mission in Catholic Health Care

DALLAS / JUNE 9 – 11

Upcoming

THANK YOU

Assembly 2019 was made possible in part by generous support from:

EMERALD FRIEND

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In-Person Meeting: Sept. 9 – 11 Plus Five Online Sessions

Community Benefit 101: The Nuts and Bolts of Planning and Reporting Community Benefit

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Oct. 15 – 16

Deans of Catholic Colleges of Nursing Networking Call Oct. 22 | 3 – 4 p.m. ET

International Outreach Networking Call Nov. 6 | 3:30 p.m. ET

Faith Community Nursing Networking Call Dec. 10 | 3 p.m. ET

SILVER FRIENDS AngioScreen®

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Loyola University Chicago

B.E. Smith

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Reflection

Anxiety

The Hidden Disease STEVE TAPPE, MTS and LAURA TAPPE

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n the surface our family seems pretty typical. My wife and I love each other and our four children. We are stable. We live in a safe community and our kids attend good schools. But between three of our four children, there are six diseases. Our 16-year-old daughter, Laura, has three of those: Crohn’s disease, rheumatoid arthritis and anxiety.

There are obvious populations of children who are vulnerable and at risk. We see them in our communities and recognize them as such. There are others, less obvious, who are also at risk. Laura is one of those. She’s already had an operation to

Anxiety is a terrible disease.

It is also largely a hidden one. It does not disfigure its victims. They don’t have races run in their honor. They don’t ring a bell when they finish treatment. We don’t wear T-shirts to support them. remove a section of her small intestine because of her Crohn’s. The arthritis causes her pain every day. These aren’t the things we worry about with Laura. It’s the anxiety that causes us to lose our breath.

Laura is a beautiful kid. Her smile is like a sunrise. One of my favorite things in life is to see her smile. She has a great sense of humor and is very smart, as kids with anxiety often are. Yet she suffers every day. She has to think hard to remember

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what she calls a “good day.” A day when she felt normal.

Anxiety is a terrible disease. It is also largely a hidden one. It does not disfigure its victims. They don’t have races run in their honor. They don’t ring a bell when they finish treatment. We don’t wear T-shirts to support them. Instead we look the other way. We question their mental toughness. We accuse them of being dramatic and craving attention. And so they suffer alone. There has been little room for joy and anxiety to coexist in Laura.

I asked if she would write this with me, if she wanted the chance to teach people about her disease. She said yes. She wants people to know what this disease is like. What follows are her words: MY BRAIN FEELS like a roller coaster

most days. My mind races through every up and down of a situation. It dodges past logic or evidence and will plummet down toward the bad and scary thoughts. I could be sitting in my bed, the morning of a school day, and tell myself that everything will be OK, that I finished all my homework, and that no one is there to critique me, but I will lie there paralyzed and unable to push the negative thoughts away.

Anxiety can be impossible to notice or understand. There was no way for me

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to show my parents what was wrong, nor could I explain to them the pain I was going through. I thought it was my fault, that I was a burden for missing so much school and never being able to do anything on my own.

It took a long time to understand that the people I surrounded myself with loved me through my hardships and struggles. I am very thankful for my family and friends and the support group I have. Even though they don’t always understand, they never stop trying to make me feel important and loved.

I know they will be there when I need them.

Many kids don’t have such luck, they are pushed to the side or told they are being dramatic. When someone you look up to says your thoughts are wrong or not important, it feels like it’s you that isn’t important.

The smallest chance of a bad thing happening can be the cause of a million crippling thoughts or a terrible panic attack. I know it’s hard to understand why someone can be fixated on a situation that is 99% impossible, even and especially after you have explained why it isn’t valid, but this is what the disease does to you.

Every person who struggles with an anxiety disorder is different and unique; nobody has the same thoughts or fears as the person who might be sitting next to them. I am thankful that I’m allowed to talk about my own experiences and have a

platform to do so. Some days I still struggle to get out of bed, and I still fight with the thoughts in my own brain and lose, but I understand so much more about myself and have learned not to be so angry at myself for the way I think. I recommend you reach out to someone if you have the slightest suspicion they are struggling. They might not even be aware themselves that they don’t have to suffer alone.

She turned 16 in the hospital. We shook our heads at the irony. It wasn’t her Crohn’s disease that brought her there. It wasn’t the arthritis that causes her so much pain. It wasn’t her crippling anxiety. It was a double-whammy virus and infection. She doesn’t catch many breaks.

When she woke up as a new 16-year-old, she was greeted by purple, pink and white streamers and printed-out happy birthday messages. Overnight the nurses did the best they could to make our daughter’s day a shade brighter. They got her a bouquet of flowers and pooled their money to get her a gift card. They recognized her vulnerability and they responded with love. Sometimes all you can do is love. Laura’s hope, my hope, is that you do the same.

STEVE TAPPE is vice president of mission for the Avera Medical Group in Sioux Falls, S.D. He co-wrote this article with his daughter, LAURA TAPPE, who is an aspiring writer.

“I am very thankful for my family and friends and the support group I have. Even though they don’t always understand, they never stop trying to make me feel important and loved.”

— LAURA TAPPE

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HEALTH PROGRESS

CHA’s Community Benefit Evolution Reaps Health Care Results JULIE TROCCHIO, BSN, MS

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t was April 1988, my second week on the job and first board meeting. Policy expert Larry Lewin (may he rest in peace), was leading the Catholic Health Association board through recent attacks on hospital tax-exemption.

A large nonprofit health system in Utah was being asked to pay state taxes for the first time. In Vermont, Burlington Mayor Bernie Sanders sent a local hospital a $2.9 million tax bill. Rep. Pete Stark, chair of the House Ways and Means Subcommittee on Health, was instrumental in taking away federal tax-exemption of nonprofit health plans.

The powerful chair of the House Ways and Means Committee, Dan Rostenkowski (may he also rest in peace), was questioning why nonprofit hospitals were not taxed. Fueling his concerns, a Harvard Business School professor had just published an article claiming that there was little difference in the amount of uncompensated care provided by for-profit and nonprofit hospitals.

What is the difference between for-profit and nonprofit hospitals?

In 1987, Health Progress reported on the testimony of then-CHA board secretary-treasurer Sr. Bernice Coreil, DC, before the House Ways and Means Oversight Committee on the difference between these sectors. Her testimony noted, “The fundamental distinction between the notfor-profit and for-profit healthcare sectors is their essential purpose, their mission ... The purpose of the not-for-profit sector is for healing, for community service, and for medical education and research ...”

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When Lewin talked to the CHA board, he questioned the findings of the Harvard study. Regina Hertzlinger, the researcher, was wrong in many ways, said Lewin. First, uncompensated care was not a proper measure because it combined bad debt and charity care. Bad debt is an expense borne by businesses, but charity care is financial assistance granted to low-income patients unable to pay some or all of their bills. But more importantly, he said, the Harvard study neglected to look at the key differences between the two sectors: their involvement in health professional education and research, how they subsidize needed services and their activities that improve the health of communities.

Lewin had been invited to the CHA board meeting because he and others had just published their views in The New England Journal of Medicine article, “Setting the Record Straight.” A Health Progress story summarized his remarks to CHA’s board. “The threats to tax status are real,” he said. “… In the game of defending tax-exempt status, winning is not enough. The best thing is to avoid having to come on the field in the first place, by taking a proactive stance to avoid attack.”

The board accepted the challenge to be proactive and asked Lewin to help quantify the differences he had outlined in The New England Journal of Medicine article.

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So, in my second week at CHA, I found my more cost-conscious than ever. They asked: Will job description: work with a board committee, this mean community services will be the first to chaired by Sr. Coreil and Lewin’s organization to go? We shouldn’t let this happen.

What if we help hospitals meet needs of the explore what distinguishes Catholic and other not-for-profit health care from the emerging for- poorest in our communities, will it put “bandprofit hospital industry and find a way to docu- aids” on structured problems and let the government the difference. ment shun its responsibility?

We visited hospitals and health systems throughout the country and recorded what they The result of the staff and committee work did to serve their communities, how they did it was the Social Accountability Budget: A Process and how they kept track. We found wonderful and for Planning and Reporting Community Service in creative examples of how Catholic health care a Time of Fiscal Constraint. This document catorganizations were responding to needs in their egorized the community services provided by communities, especially the need of low-income and vulnerable people.

We found wonderful and creative We also found examples of how systems were making these activities examples of how Catholic health care possible: organizations were responding to The Daughters of Charity Health System had an accounting system to needs in their communities, especially document how its organizations were serving people living in poverty. the need of low-income and vulnerable Catholic Healthcare West was people. using strategic planning to plan community services.

Sr. Linda Werthman, RSM, from the Mercy nonprofit hospitals and described a process for System in Farmington Hills, Mich., was using cen- how to plan, track and report these services. Persus and other public data to assess community haps most importantly, the Social Accountability need.

Budget included a financial accounting system that enabled hospitals to both budget and track Sr. Coreil’s committee reviewed our findings expenses. and started to shape CHA’s policy and activities.

As the book went through the CHA review proThey had lively discussions. This is what I re- cess, it was sharpened and designed to be readmember: able. This was important because one reviewer One member said that if his large family gave said, “This is very good but dry, it reads like an IRS only the money to favorite charities that was left manual.” (The second half of this remark would after paying its bills and day-to-day costs, the fam- prove to be forward-looking as the story goes on.) ily would never be able to make contributions. InIn announcing the book in Health Progress, stead, he had to put those modest expenses in the Virginia Pearson and I wrote that its purpose was family budget. That is what our hospitals must do, not just to protect tax status but to help Catholic he said, budget for charity care and other services. health care facilities carry out their tradition of Another member added that hospitals’ bud- serving those most in need, despite increasing figets were perhaps their most significant religious nancial constraints. (Pearson was then directing document, because they revealed value commit- communications for the Sisters of the Sorrowful ments and a practical sense of mission.

Mother (SSM) Ministry Corp. in Wisconsin.) To Committee members were concerned that the amazement of CHA’s publication department, Medicare was changing its reimbursement sys- the Social Accountability Budget became an intem for hospitals, moving from a cost basis to stant success. Orders came in from all over the paying per diagnosis. This would make hospitals country, from Catholic and other nonprofit hospi-

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tals. The Healthcare Association of New York State ordered 400 copies.

Lewin’s team and I hit the road to promote the book to Catholic health systems.

Concepts related to planning and tracking community services were well received.

However, reporting what we in Catholic health care do was less popular. “It does not seem right to brag about what we do for the poor,” we were told repeatedly.

In fact, at one system meeting where we were presenting the framework for reporting community benefit, the program began with a reading from Matthew’s Gospel about not letting the left hand know what the right is doing and hiding your light under a bushel.

Keeping the policy pressures in mind, we needed to explain that reporting community benefit was not bragging, rather it was about being accountable to the government entities that grant tax-exemption, to volunteers, to board members and their communities.

Over the next months and years, the steps in the social accountability process became standard practice in many Catholic and other nonprofit health care organizations. These hospitals developed infrastructures for sustaining their efforts, assessed community health needs, planned to meet those needs, tracked activities and their

“Few issues are more important to the leaders of Catholic healthcare facilities than our tradition of service to our communities.”

— SR. BERNICE COREIL, DC

expense, and reported what they accomplished.

When a sister in Toledo, Ohio, learned the accounting system was not available electronically she asked a local computer company, Lyon Software, to develop a program to track expenses. A few years later, CHA formed a partnership with Lyon Software and VHA, Inc., (now Vizient) to sponsor the software, Community Benefit Inventory for Social Accountability, known as CBISA. CHA also partnered with the American Associa-

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tion of Homes and Services for the Aging (now LeadingAge) to develop a version of the Social Accountability Budget for nonprofit long-term care organizations.

Health Progress continued to follow the issues. The theme of the January/February 1992 issue was, “In the Line of Fire, The Battle over Taxexempt Status Continues.” In that issue, David Seay from the United Hospital Fund of New York put the IRS community benefit standard in a historic context: “U.S. hospitals were exempt from taxation even before the establishment of an income tax or the Internal Revenue Code.

The notion of community benefit — the current legal standard by which federal tax-exemption is accorded to not-for-profit hospitals — is itself quite old. The idea dates back to the early seventeenth century, when laws regulating the charitable use of property were first enacted in England.

Later in 1891, in a restatement of the English law of charity (which has long been recognized as a leading authority in the United States), Lord MacNaghten clearly delineated community benefit as a separate and distinct category of activity that is deemed charitable: ‘Charity in its legal sense comprises four principal divisions: trusts for the relief of poverty; trusts for the advancement of education; trusts for the advancement of religion; and trusts for other purposes beneficial to the community, not falling under any of the proceeding heads’.”

In the same issue, Sr. Coreil, who chaired CHA’s Community Benefit Committee wrote, “Few issues are more important to the leaders of Catholic healthcare facilities than our tradition of service to our communities.” In that same issue, health leader Emily Friedman wrote an essay saying tax-exemption was a metaphor for public trust in hospitals.

The book was periodically revised to keep up

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with public health advances and practices in our hospitals and systems, and in 2008 the revised book was renamed to A Guide for Planning and Reporting Community Benefit to be consistent with the language used in our organizations.

Tax exemption becomes an issue again but CHA makes mission the focus

In November 1992, while the Clinton health reform bill, the Health Security Act, was being debated, a Health Progress policy column explored what tax exemption would mean in a reformed health system. In “A Systematic Method of Accountability,” professors at Saint Louis University and a finance officer at Mercy Health discussed how charity care and the service to low-income people would remain a priority. They said. “… charity care policies can reinforce implementation of the organizational mission, guide the assessment of the community’s needs, and ensure a consistent message of mission effectiveness in reporting to the community.”

While the Health Security Act did not pass, CHA’s attention to providing community benefit and Health Progress’s coverage continued with an emphasis on mission and social justice.

In 2005, the theme of a Health Progress issue was The Theology of Community Benefit. It led with an article by CHA’s then-vice president, mission services, Sr. Patricia Talone, RSM, PhD, who said, “Precisely because of the church’s commitment to the common good, promotion of community benefit (and the tracking of community benefit data) arises within Catholic health care from concern neither for not-for-profit status nor public perception, but rather from a deep and abiding sense of its identity as a healing ministry of the church. Community benefit is a viable expression of the church’s recognition that society as a whole is responsible for allowing each and every member to pursue life’s goods.”

In 2006, the tax-exemption of hospitals again became a policy issue. Sen. Chuck Grassley, chair of the U.S. Senate Finance Committee, began asking the same question Rostenkowski had asked in the 1980s, “Why do not-for-profit hospitals de-

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serve tax-exemption?” He also questioned why hospitals were not asked to account for whether they met the Internal Revenue Services Community Benefit Standard, the basis of federal tax-exemption. (Rev. Rul. 69 -545.) What is community benefit anyway, he added.

CHA knew the answer to his last question.

Since 1969, tax-exempt hospitals have had to meet the IRS “community benefit standard” but that term was not well defined in the revenue ruling.

Our process defined and measured it. While the IRS’ revenue ruling did not specifically define what was meant by community benefit, CHA’s materials itemized and defined categories of community benefit. These included charity care, means-tested program shortfalls (such as Medicaid), community improvement services, health profession education and research, subsidized services, cash and in-kind donations and community-building activities.

Representatives from CHA, led by Sr. Carol Keehan, DC, met with Sen. Grassley and his staff to show them our definitions of community benefit and the accounting system for budgeting and tracking community benefit. In response, Sen. Grassley asked the U.S. Treasury Department and the IRS to look at CHA’s categories and accounting system. The IRS revised its Form 990, the reporting form for all tax-exempt organizations, adding a Schedule H for hospital reporting. The new Schedule H mirrored most of CHA’s original accounting framework.

Five years later, the Senate Finance and House Ways and Means Committee again looked at hospital tax-exemption in the context of health reform. Legislators, again led by Sen. Grassley, said the Affordable Care Act (ACA) should require nonprofit hospitals to demonstrate that they deserve special tax status. CHA joined other hospital organizations in advocating that hospitals should show that they understand their communities’ health needs, work with public health and community members to identify those needs and have plans to make their communities healthier. As passed, the ACA required that tax-exempt hospitals conduct community health needs assessments with public health agencies and their communities and

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develop implementation strategies for addressing needs.

Again, CHA was ready. All of the editions of our community benefit books included guidelines for assessing community health needs and planning to address those needs. CHA expanded these guidelines into a new document, Assessing and Addressing Community Health Needs. This book was used (along with other input) by Treasury Department staff writing the IRS rules to implement the Affordable Care Act. In 2012, Health Progress previewed CHA’s assessment book. The article traced Catholic health care’s community health needs assessment to the sisters who established our ministries. I wrote, “The sisters who founded our ministries came to this new nation looking for what needed to be done to care for the sick, old and orphaned and to help the poor.

With courage and creativity, they assessed the needs of their new communities and acted in response.”

When the final rules were published, they included a requirement on evaluating impact of community benefit activities. CHA updated Assessing and Addressing Community Health Needs and produced a new document, Evaluating Your Community Benefit Impact.

In 2015, Health Progress focused on community partnerships and in 2018 “Taking Our Care Outside the Walls.” This issue included an article

by Dr. Rod Hochman, president of Renton, Wash.based Providence St. Joseph Health and Sr. Donna Markham, OP, president and chief executive officer of Catholic Charities USA, on how Catholic health care and charities agencies can work together to address needs of low-income people.

They said, “For people who are poor and vulnerable, attending to the social determinants of health is foundational to their overall health. There are no better resources to address those social determinants of health than these two faith-driven organizations working in tandem.”

As Health Progress has reported, CHA’s advocacy and resources have paved the way for the high-quality community benefit programs we have today — both within Catholic health care

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and in other nonprofit health care organizations.

How did this happen? It happened because the CHA board was prophetic in identifying a key issue for our ministry and seized the opportunity to advocate for tax-exempt health care and to be a leader in community benefit. Through the years, the board has renewed its commitment to community benefit, even in the absence of congressional and federal activity.

Community benefit is at the heart of our ministry. It carries on the tradition of our founding sisters and other leaders who saw needs in their communities and sacrificed to address those needs. It puts the preferential option for the poor into action, demonstrating respect for the lives of all in our communities, especially our most vulnerable neighbors. It is a concrete expression of our commitment to the common good and our ethic of life.

As I write this, it has been 31 years since that board meeting when I first learned about the importance in distinguishing our hospitals as charitable organizations and the need to tell that story. It has been an honor to staff this work and to help implement the vision of CHA’s executive and board leaders.

Throughout the years, Health Progress (and before that, Hospital Progress) has covered community benefit and tax-exemption issues.

Some editions focused specifically on these issues and others on related topics, such as poverty, immigration, social needs and violence.

In reviewing the history of our journal’s coverage of community benefit and tax exemption, not only has Health Progress presented a historical record of these issues, which indeed it has, but has been a vehicle for thoughtful reflection of what it means to be a community-oriented, mission-driven, nonprofit health care organization. It has tapped legal, tax and public health experts as well as some of the best health care thinkers of the day. It has issued warnings, challenges and congratulations.

Happy Birthday, Health Progress. You have made a remarkable contribution to community benefit.

JULIE TROCCHIO is senior director, community benefit and continuing care, the Catholic Health Association, Washington, D.C.

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MISSION AND LEADERSHIP

DRAWING ON GOD’S LOVE TO MINISTER AT THE MARGINS

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he word “margin” comes from the Latin word margo meaning edge, perimeter, fringe or periphery. It is a word that Pope Francis uses often in his writings and sermons. In Evangelii Gaudium, Pope Francis forcefully states that the church must move from her comfort zone in order to reach all people, especially those in the peripheries in need of the light and the mercy they long for, and where the hearts of those ministering also are converted and transformed.

He writes, “The word of God constantly shows us how God challenges those who believe in him ‘to go forth’. Abraham received the call to set out for a new land (Gen 12:1-3).

Moses heard God’s call: “Go, I send you” (Ex 3:10) and led the people towards the promised BRIAN SMITH land (Ex 3:17). To Jeremiah God says: ‘To all whom I send you, you shall go’ (Jer 1:7). In our day Jesus’ command to ‘go and make disciples’ echoes in the changing scenarios and ever new challenges to the church’s mission of evangelization, and all of us are called to take part in this new missionary ‘going forth’.

Each Christian and every community must discern the path that the Lord points out, but all of us are asked to obey his call to go forth from our own comfort zone in order to reach all the ‘peripheries’ in need of the light of the Gospel.”1 This issue of Health Progress focuses on youth at risk — individuals and groups of individuals that often go unnoticed, which of course makes them some of the very people on the fringe that Pope Francis wants us to go out to encounter.

In my 30-plus years of ministry, I have had the privilege of ministering to many at-risk children, teens and young adults as they try to discover the light and mercy of God in their lives. As a clinical psychologist working in special education, I worked with children and teens who have learning disabilities. Many of them were also dealing with anxiety and depression. As a pastor and counselor, I worked with family dysfunction and

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the physical, psychological and spiritual toll this takes on the children. As a teacher and youth minister, I dealt with the impact and effects of bullying and peer pressure. Sometimes I worked with teens and families experiencing an unplanned pregnancy, rape or sexual abuse.

I have ministered to teens and young adults who are trying to integrate their same sex attraction or gender dysphoria in a healthy, life-giving manner. There also have been young people so deeply at risk that I needed to refer them to others because they were dealing with substance abuse, needed to be medically treated for clinical depression or suicidal ideation. I have been blessed to encounter youth, journey with them and mutually experience God’s grace.

What I have learned from these experiences is that leaving my comfort zone and going to the margins is only difficult if I see myself as different than those who are experiencing some type of pain or alienation. But if I remember that I too have had my moments of darkness and pain, and that it is God’s love and mercy that brings me to a place of healing and grace — then I know that I am entering into the encounter not as one who is better, but as a fellow sojourner desiring to share the Good News I have received.

Early in my pastoral ministry I was counseling a young man who had grown up in a physically and emotionally abusive household. He was medicating his low self-esteem with drugs and alcohol. He had been kicked out of his parents’ house, had a hard time keeping a job and was one step away from being homeless. When I tried to use my clinical psychology and counseling skills to inter-

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vene, he would leave. One day, I shared the story vanity and fear. An encounter that occurred in the of a period in my life when I did not love myself, periphery of society transformed Francis forever, pushed people away and felt as if there was no because at that moment he was able to encounter hope. I went on a retreat and experienced God’s the leper as another human being — his brother. presence and love in a way I had never felt be- This is precisely what Pope Francis means by “… fore. I knew I was loved and accepted by God and the hearts of those ministering are also converted that nothing about me was a mistake. I told him and transformed.”2 it was that experience of coming from darkness Applying this lesson to Catholic health care’s into light that had led me to want to serve God and outreach to youth at the margins suggests we apGod’s people. I wanted others to experience this proach this vulnerable population remembering same gift of God’s love.

In that moment when I stopped We go to the fringes and peripheries being the “expert” and spoke to this young man as someone who humbly acknowledging we do not also knew brokenness, the dynamic hold all the answers and that we changed. A trust began to develop, and our sessions were no longer are also searching for healing and framed as healer speaking to the one needing healing. They became mercy. In this sacred encounter, the moments of grace as we shared our children of God journey together — mutual journey and how to find God, especially during periods of all in need of healing, and all healers. darkness.

There is something within youth that recognizes when people are being genuine that we as individuals and institutions are always and real with them. They also know when adults in need of healing. We do not go to the margins are being fake, insincere and manipulative. They presuming we are the healers with all the ancan relate to others who are vulnerable, willing swers. We go to the fringes and peripheries humto enter into mystery and not supply all the an- bly acknowledging we do not hold all the answers swers. If there is one thing ministering to youth and that we also are searching for healing and has taught me, it is when I share my experience of mercy. In this sacred encounter, the children of God’s grace found through my weakness, they are God journey together — all in need of healing, and willing to open up about their own vulnerability. all healers.

The encounter is then a relationship — people Pope Francis reminds us, “The credibility of mutually learning from one another and celebrat- the Church and the Christian message rests ening the healing grace of God discovered in the tirely on how Christians serve those marginalized process. by society … We will not find the Lord unless we There is a well-known story of the encounter truly accept the marginalized! Truly, the Gospel between Saint Francis of Assisi and a leper that il- of the marginalized is where our credibility is at lustrates this point. The story recounts how Fran- stake, is found and is revealed.”3 cis heard a bell announcing the coming of a leper, and he intuitively turned in the opposite direction BRIAN SMITH, MS, MA, MDiv, is senior director, to get away. Lepers were outcasts, living beyond mission innovation and integration, the Catholic the margins of society, unable to enjoy any benefit Health Association, St. Louis. from the community. However, Francis suddenly stopped and turned around. He approached the NOTES leper, embraced him and kissed him. Saint Francis 1. Francis, Evangelii Gaudium (The Joy of the did not cure the leper, but rather it was the leper Gospel), para. 20. who cured Francis. After this encounter, the leper 2. Francis, Evangelii Gaudium. remained a leper, but Francis was healed of his 3. Francis, Homily to New Cardinals, Feb. 14, 2015.

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ETHICS

WHAT WOULD MARTHA DO? Three Exemplars of Virtue in John’s Gospel

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ow many times have you heard the phrase “what would Jesus do?” In my childhood, the letters WWJD were printed onto T-shirts, made into bracelets, and I had one classmate with it inked onto his very skin. The phrase is an easy way to provide guidance during difficult choices. It reminds us of the virtuous nature of Jesus and asks us to imitate him. Jesus is a teacher and we the pupils. However, Jesus is not the only moral teacher within our Catholic tradition. Exemplars of virtue abound within the stories of the saints and the figures of Scripture. I want to reflect upon three individuals from John’s Gospel: Martha, Mary of Bethany and the man born blind. Like Jesus they provide us models of virtuous behavior.

What would Martha do?

Son. Through hope we can exit the comforts of In the eleventh chapter of the city limits in our lives, to seek out Jesus in the John, Jesus hears about his friend margins. When we find him in our friends, famLazarus falling terribly ill. He ily and neighbors, we know he will stand by us. makes his way to the town only Martha had hope in Jesus; we can have hope in to wait outside the city limits. one another.

After a few days, Lazarus’ sister When death or tragedy enters our lives, we Martha learns that Jesus has ar- ought to seek the comfort of a friend. Martha NATHANIEL rived and goes out to meet him. sought the comfort of her friend Jesus. She knew BLANTON When Martha encounters Jesus, that the friendship would give her hope to conshe says, “Lord, if you had been tinue in the face of such sadness. I gain hope from HIBNER here, my brother would not have those around me. They provide words of comfort died. But I know that even now God will give you and support. We often hear the phrase, “all will be whatever you ask” (John 11:20-22). She reveals to well.” Many times we shrug such sentiment away, Jesus her commitment to his ministry and an awareness of his relationship We can have hope that God will with God. Jesus replies, “Your brother answer the call of his Son. Through will rise again.” To which Martha responds, “I know he will rise again in hope we can exit the comforts of the the resurrection at the last day.”

This conversation between Marcity limits in our lives, to seek out tha and Jesus exemplifies the virtue Jesus in the margins. of hope. Martha comes out to meet Jesus knowing that God will give whatever Jesus asks. She has hope in the power allowing the pain to cause despair in our hearts. of Christ and in his relationship with the Father. Martha shows how hope dispels the despair. It She believes in the eschaton (the final events of brings God and Jesus into our souls, raising up humanity) and the coming Kingdom of God. This our spirits, and urging us to continue in the light hope compelled her to seek out Jesus even beyond of Christ. the city limits.

So, when tragedy strikes, and the future beWe can follow Martha’s example of hope. We comes uncertain, we can ask ourselves, “What can have hope that God will answer the call of his would Martha do?”

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What would Mary of Bethany do? main faithful in face of adversity. He is completely John’s Gospel tells the story of Mary of Betha- vulnerable and alone. His family allows him to be ny, the sister of Lazarus and Martha, washing and questioned by the religious authorities. He never anointing the feet of Jesus before a supper party: once lies, nor tries to save himself. He keeps Jesus “Mary therefore took a pound of expensive oint- at the forefront of his mind and his actions. We ment made from pure nard, and anointed the feet learn that fidelity is a virtue that can bring much of Jesus and wiped his feet with her hair” (John hardship and pain. By keeping our focus on the 12:3). Mary carries out an act of hospitality that good and the right, fidelity guides our actions. It is none of the other disciples had shown. In a very a virtue that requires great strength and courage. intimate way, she welcomes Jesus into the house.

As Christians we must remain faithful to Christ.

Mary’s action highlights a major characteristic Our fidelity to the will of God will bring us into of the virtue of hospitality. Hospitality involves a salvation and the New Kingdom. very intimate act in that it does not mean only to welcome someone into Hospitality involves a very intimate your house; it involves welcoming the act in that it does not mean only to person into your life. By washing Jesus’ feet, Mary creates a physical conwelcome someone into your house; nection. She allows herself to become vulnerable and in doing so reveals to it involves welcoming the person Jesus her inner nature. into your life.

The intimacy is also addressed by Jesus who defends Mary of Bethany, “Leave her alone, so that she may keep it [the perHow can we not feel capable of living virtuous fumed oil] for the day of my burial” (John 12:7). lives when we read about the man born blind? His The correlation between the feet washing and life was one of constant struggle and misery. Yet, the burial ritual only emphasizes the intimacy of he acted faithfully. His example teaches us that we the act. The relationship one must have to wash too can overcome the harshness of the world to the lifeless body of another truly exceeds that of live lives of virtue. When we question our fidelity a mere acquaintance or neighbor. It respects the to the good, let us ask, “what would the man born dignity of the individual. blind do?”

We learn from Mary a similar lesson to what There are countless virtues exhibited everyday we learn from all the virtues in John’s Gospel – to within Catholic health care. Our associates and welcome someone is to welcome Christ. To wel- co-workers exhibit them in every interaction. Yet, come a person is to show them that they are loved we all experience moments when the path is not and have value in our eyes. So when we encounter so clear, or the temptation to take the lesser road strangers in our midst, when the poor and vulner- too great. In these moments we can turn to the able enter our walls, let us ask the question, “what lives of others and let their example be our guide. would Mary of Bethany do?”

“What would Jesus do” is an excellent reminder of What would the man born blind do?

Christian virtues. But let us not forget those other The man born blind demonstrates the virtue exemplars, like Martha, Mary of Bethany and the of fidelity. Here is a man who was abandoned by man born blind. They are fully human like us and everyone, even his family, and yet he trusts in the during times of trial they listened to the calling of power of Jesus. After being healed, he faced inter- hope, hospitality and fidelity. Who is someone in rogation from the leaders of the synagogue. The your life that you consider a model? Who stands priests questioned him repeatedly on his encoun- out as a virtuous person? Are you someone called ter with Jesus and the healing of his sight. They to be an example of virtue for another? did not even believe his story; his parents abandon him once again. Yet, the man remained faith- NATHANIEL BLANTON HIBNER, PhD, is director ful to Jesus and his story (John 9:1-41). of ethics for the Catholic Health Association, The man born blind reveals to us how to re- St. Louis.

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H E A LT H E Q U I T Y

REDUCING DISPARITIES IN ELDERCARE KATHY CURRAN, JD

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ur nation and our health care system are grappling with the issue of health equity.

We have identified factors that contribute to racial and ethnic disparities in health access, quality and outcomes, and are working to address them. Recognizing that unconscious bias can affect the doctor-patient relationship, health systems are providing training to help care providers be more aware of their biases and to develop skills of cultural competence. The social determinants of health are significant factors in health disparities, adding urgency to the need to improve education, dismantle poverty and make sure communities have healthy food options, quality housing and safe neighborhoods. And we slowly are acknowledging the pernicious effect of structural as well as individual racism in our society, particularly in the health of people of color. We have far to go, but we have begun the work.

When it comes to understanding and address- and safety standards, though the gap may be naring health disparities in long-term care and elder- rowing.3 A Minnesota study also found that qualcare, however, we are lagging behind. As the over ity of life scores were lower for residents in nurs65 population increases in the next few decades, ing homes with a higher proportion of minorities.4 much of that increase will be due to the aging of Racial and ethnic minorities are likely to receive racial and ethnic minorities. In 2015, about 22% of lower quality nursing home care because they those over 65 were members of minority groups; tend to live in nursing homes that provide lower by 2050 that will increase to 39%. We also know quality care. that in addition to significant income disparities The facility-based disparities are well docubased on race, there is a greater, and accelerating, mented. Less is known about the existence of gap between the median net worth of African- in-facility disparities — do minority residents American and Latino families and that of white receive the same quality of care as their white families.1 The changing demographics and the ra- co-residents? Some studies have found no racial cial wealth gap mean seniors seeking long-term differences in care within a facility while others care will be more likely to be racial or ethnic mi- have detected disparities. One nationwide study norities and to have fewer resources to pay for found on average small but significant differences their care. Aging minority seniors will have fewer choices about how We know there are racial and ethnic and where to receive the long-term care they need. disparities in the quality of care We know there are racial and ethnursing home residents receive. nic disparities in the quality of care 2 nursing home residents receive.

Nursing home care is highly segregated. Over the across eight quality measures, with wider variapast few decades, the number of minority nurs- tions in some facilities. However, the differences ing home residents has risen while the number of did not all go one way — in some cases white resiwhite residents has fallen. The shift has not been dents were favored, but in other cases minority consistent across facilities, however. Racial and residents were favored. More work needs to be ethnic minorities are more likely to live in facili- done to stratify data by race and ethnicity. In the ties with fewer resources, lower staff nursing ra- meantime, nursing homes could take steps to see tios and lower quality indicators. Nursing homes if there are disparities of care in their facility and with higher percentages of minority residents re- address them. ceive more citations for violation of health care The across-facility disparities raise two ques-

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tions: how can we improve the care delivered in life care and pain management as well. For examnursing homes with more minority residents, and ple, African-Americans in hospice care are more what options do minority elders have when they likely to use the emergency department or to be need some level of assistance with activities of hospitalized. Once again, the question is whether daily living? the cause is variation between facilities or within A high concentration of minority residents cor- facilities. Some research indicates that differrelates both with lower quality of care and greater ences exist between white and black patients in dependence on Medicaid, which under reimburs- the same hospice,6 but more research is needed es for nursing home care. These facilities do not on that issue and to see if there are differences have the resources they need to improve quality. among other minority groups. Furthermore, AfSo one way to address nursing home health dis- rican-Americans are less likely to have advance parities is to improve Medicaid reimbursement. directives or to enroll in hospice, and more likely CHA’s “Medicaid Makes It Possible� campaign is to disenroll if they do.7 raising awareness about the important role MedAfrican-Americans and Hispanics are less icaid plays in providing care to millions of Ameri- likely to be assessed and treated for pain, and cans, including older Americans. Protecting and they find it harder to fill prescriptions for opioids improving the Medicaid program is key to ensur- due to lack of insurance coverage and because ing quality nursing home care. pharmacies in poorer or minority neighborhoods Because many people of color and other mi- are less likely to carry opioids.8 Current efforts to norities have fewer financial resources, they have stem opioid abuse and addiction are warranted, fewer choices when the time comes that they need but they could create an additional obstacle for help on a daily basis. Assisted living, continuing minority patients who need those drugs for pain care retirement communities and private-home relief. health care are expensive and inaccessible to seReligious and cultural differences, mistrust niors with lower incomes and fewer assets. This of doctors and the medical system, poor patientmay be why there are more minority residents in provider communication and unconscious bias nursing homes, both as a percent of the nursing could all contribute to these disparities in endhome population and in relation to overall minor- of-life and palliative care. We do need additional ity population. White elders have more access to alternatives to nursAssisted living, continuing care ing home care than do minority seretirement communities and privateniors, highlighting another disparity in access to care. home health care are expensive and There are initiatives underway to make it possible for states inaccessible to seniors with lower to pay for home- and communityincomes and fewer assets. based services and that could help address the disparities in access.

However, researchers have begun looking at research to understand these differences better, home health care quality, and several studies have but in the meantime health care facilities, hosfound health disparities there as well.5 Minor- pices and palliative care specialists are working ity patients receiving home health care services to increase culturally appropriate education and have been found to have more adverse events, outreach to minority communities about their less functional improvement and worse patient pain management and end-of-life decision-makexperience. African-American and Hispanic pa- ing options. tients receiving home health were found to be This outlines a pretty big agenda for addressmore likely to go to the emergency department ing health disparities in long-term care and elderor be readmitted to the hospital. As with nursing care, but there is one more item to add. The legacy homes, indications are that home health agencies of racism in employment and housing ownership with a high number of African-American clients has contributed to income and wealth disparities, have lower quality of care scores. which in turn limit the long-term care options Racial disparities exist in relation to end-of- of minority elders. Patterns of housing segrega-

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As a Catholic health ministry, committed to honoring the inherent dignity of every individual as a person created in the image of God, we are called to recognize how racism affects health care and to heal the wounds that it has caused. tion contribute to the patient demographics of nursing homes and home health care agencies. A health care provider’s unconscious bias can affect whether a patient’s pain is assessed and treated.

As a Catholic health ministry, committed to honoring the inherent dignity of every individual as a person created in the image of God, we are called to recognize how racism affects health care and to heal the wounds that it has caused.

KATHY CURRAN is senior director of public policy, the Catholic Health Association, Washington, D.C.

NOTES 1. Dedrick Asante-Muhammad et al., “The Road to Zero Wealth: How the Racial Wealth Divide Is Hollowing Out America’s Middle Class,” Institute for Policy Studies and Prosperity Now, September 2017. https://ips-dc. org/wp-content/uploads/2017/09/The-Road-to-ZeroWealth_FINAL.pdf.

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2. See, for example, David Barton Smith et al., “Separate and Unequal: Racial Segregation and Disparities In Quality Across U.S. Nursing Homes,” Health Affairs 26, no. 5 (2007): 1448-58; Mary L. Fennell et al., “Elderly Hispanics More Likely To Reside In Poor-Quality Nursing Homes,” Health Affairs 29, no. 1 (2010):65-73.

3. Fennell et al., “Elderly Hispanics - Nursing Homes;” David C. Grabowski, Thomas G. McGuire, “Black-White Disparities in Care in Nursing Homes,” Atlantic Economic Journal 37, no. 3, (Sept. 1, 2009): 299-314; Yue Li et al., “Deficiencies In Care at Nursing Homes and Racial/ Ethnic Disparities across Homes Fell, 2006–11,” Health Affairs 34, no. 7 (2015): 1139-46.

4. Tetyana Shippee et al., “Racial Disparities in Quality of Life for Nursing Home Residents,” Innovation in Aging 2, Suppl. 1, (2018): 609-610. See also Lauren J. Campbell et al., “Racial/Ethnic Disparities in Nursing Home Quality of Life Deficiencies, 2001 to 2011,” Gerontology and Geriatric Medicine, (June 6, 2016), https://doi. org/10.1177/2333721416653561.

5. Mary Narayan and Katherine Scafide, “Systematic Review of Racial/Ethnic Outcome Disparities in Home Health Care,” Journal of Transcultural Nursing 28, 6 (Nov. 1, 2017): 598-607, https://journals.sagepub.com/ doi/10.1177/1043659617700710; Jo-Ana D. Chase et al, “Relationships Between Race/Ethnicity and Health Care Utilization Among Older Post-Acute Home Health Care Patients,” Journal of Applied Gerontology, (Feb. 19, 2018), https://doi.org/10.1177/0733464818758453.

6. Jessica Rizzuto and Melissa D. Aldridge, “Racial Disparities in Hospice Outcomes: A Race or Hospice-Level Effect?,” Journal of the American Geriatrics Society 66, no. 2 (February 2018): 407-13.

7. Rizzuto and Aldridge, “Racial Disparities in Hospice Outcomes.”

8. Kimberly S. Johnson, “Racial and Ethnic Disparities in Palliative Care,” Journal of Palliative Medicine 16, no. 11, (November 2013): 1329-34.

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COMMUNITY BENEFIT

SOCIAL DETERMINANTS OF HEALTH Moving Beyond the Buzzwords HOWARD GLECKMAN

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he goal of medicine is not just to treat the conditions that doctors diagnose, but to improve the well-being of patients. That has increased focus on social determinants of health, and prompted health systems to change how they care for those they serve.

Many are working to support safe housing or preventing social isolation as well as pursuing advances in clinical medicine. But confronting those challenges isn’t easy for health systems.

It requires them to better understand social supports and how to deliver them — or partner with those who do. And they must learn how to pay for services that government and private insurance often don’t compensate.

The payment structure is beginning to change. an occupational or physical therapist and a handyFor example, in 2018, regulatory changes at the man.

Centers for Medicare and Medicaid Services, Published studies found that participants in or CMS, and new federal legislation called the this program had lower levels of disability (reportCHRONIC Care Act allowed Medicare Advan- ing less difficulty with daily activities) and fewer tage plans to offer, for the first time, social supports such as meals, transportation, Medicare Advantage, or Medicare home renovations and adult day services. managed care, currently covers Medicare Advantage, or Medicare managed care, currently covers about oneabout one-third of all Medicare third of all Medicare beneficiaries.

Still, the evidence about specific inbeneficiaries. terventions remains mixed. It appears that housing supports,1 care management and hospitalizations, emergency department visits, improved nutrition can improve health outcomes or skilled nursing facility stays.2 An initial demand reduce costs. Transportation, income sup- onstration of 281 participants in 2012-2015 saved ports and early childhood education may also im- Medicaid more than $20,000 per recipient over prove health outcomes. But it is not clear that they two years, net of costs. It now has been adopted in result in cost savings, in part because they have 22 cities and rural communities in 11 states. been less well studied.

Here are a few examples that do work: Eskanazi Health is a community health center Community Aging in Place — Advancing Better in Indianapolis that has been offering a suite of Living for Elders (CAPABLE) was created by the wrap-around services to its low-income, high-risk Johns Hopkins School of Nursing with the goal patients since 2011. Services include behavioral of improving quality of life for low-income older health, social work, nutrition and medication edadults living at home with functional limitations. ucation, patient navigation, financial counseling It is built on teams that include a registered nurse, and a medical-legal partnership.

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Researchers found a 7% reduction in expected hospitalizations in the year following receipt of a wraparound service and a 5% reduction in the number of emergency department visits.

The program saves between $1.4 million and $2.4 million in hospital costs annually.

The University of Maryland St. Joseph’s Medical Center in Baltimore County is partnering

with Maxim Healthcare Services, a home health agency, to reduce hospital readmissions among high-risk patients. Non-medical community health workers help participants find transportation, housing and even employment.

Thirty-day readmissions for the 1,200 participants in 2017-2018 were less than half that for similar patients who did not participate. Ninety-day readmissions were one-third lower.

Be There San Diego and The United African American Ministerial Action Council partnered

to improve cardiovascular health in southeastern San Diego. Their goal was to use community resources to improve diet, exercise and health screenings. The program served over 2,000 people in more than 20 churches and a mosque. The partnership led to new relationships that continue between health care providers and churches to improve health, according to Be There San Diego’s executive director, Kitty Bailey.

StreetCred was created by two Boston-based

pediatricians to help low-income families claim federal tax benefits such as the earned income tax credit and the child tax credit. Internal Revenue Service-qualified volunteers help parents with tax filing while they are at their children’s medical appointments.

In its first two years, the program helped 1,700 families claim $3.3 million in refundable credits. It now also provides enrollment assistance for programs such as Supplemental Nutrition Assistance Program (SNAP - food stamps) and Head Start, and has expanded to cities in Connecticut, North Carolina and Texas.

Notwithstanding these modest success stories,

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health systems struggle to build programs aimed at improving the social determinants of health. To succeed, they must confront several challenges: Cultural change. They must recognize that improving a patient’s living conditions, access to transportation or diet can enhance quality of life as much as medical treatment, and sometimes more. Prescribing such interventions should become standard medical care.

Finances. Some hospital financial officers treat the return on a program to prevent an admission as less valuable than the return on a new service line. In addition, a hospital that invests in social services may reap only a fraction of the benefit, while payers receive the rest. As a result, many hospitals limit investments in social supports to their community benefit programs rather than building them into their business model. To be truly effective, this care should be included in the operating budgets of hospitals.

Quality measures. To fully integrate social supports into the practice of medicine, we will need to rethink quality. Measuring improvements in someone’s well-being is much harder than counting falls or infections, but it may be as important. And until we get those quality measures right, we will never fully get social determinants into the health care mainstream.

HOWARD GLECKMAN is a senior fellow at the Urban Institute, where he is affiliated with the Tax Policy Center and the Retirement Policy Program.

He writes a column about aging policy for Forbes. com and serves on the boards of Suburban Hospital in Bethesda, Md., and the Jewish Council for the Aging of Greater Washington.

NOTES 1. See for example Lauren Taylor, “Housing and Health: An Overview of the Literature,” Health Affairs Health Policy Brief, June 7, 2018, https://www.healthaffairs.org/ do/10.1377/hpb20180313.396577/full/.

2. Sarah l. Szanton et al, “Home-Based Care Program Reduces Disability and Promotes Aging In Place” Health Affairs 35, no. 9 (September 2016): 1558–63.

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T H I N K I N G G L O B A L LY

A CONVERSATION WITH CATHOLIC RELIEF SERVICES Working with At-Risk Youth in the Caribbean and Latin America

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y career has taken me to countries around the world. Different languages, modes of transportation, building types, smells and sounds. Unfortunately, pretty much wherever I have traveled, I’ve encountered children who are unquestionably vulnerable. Young people hawking water and candy or food in the streets, young children washing windows for a tip — and from what locals have told me, these children often are being “handled” by someone out of sight. It’s overwhelming and disheartening.

Thankfully, we are a part of a global ministry that advocates and acts on behalf of these children on the margins.

Here, I share the experiences and comments of someone who immediately came to mind for this column, Rick Jones, a youth BRUCE and migration advisor in Latin COMPTON America and the Caribbean for Catholic Relief Services (CRS).

Rick has lived and worked in Latin America for over 28 years, working for CRS for the past 20 of those years. Currently based in El Salvador, he has led CRS programs that tackle issues such as poverty, gang violence, migration and internal displacement, as well as designing development alternatives and responding to the region’s biggest emergencies.

What follows is a question and answer session with Rick where I posed some pretty basic questions intended to shed some light on CRS work, but, also, to help those in Catholic health care consider any potential partnership ideas to work toward helping at-risk youth.

Can you please “set the table,” providing a brief global picture of youth at risk in the international sense? What are some statistics and larger issues globally that provide a way for us to start from more of the same place? When we think about at-risk youth is it labor trafficking,

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disease, refugee related, climate change related, other?

There are 1.8 billion young people in the world today — the largest cohort of youth in history.

Many of these young men and women live in SubSaharan Africa, where half of the population is younger than age 25, and the lack of jobs pushes them into the informal sector. Nearly 80 percent of youth in Sub-Saharan Africa work in underpaid jobs in sectors rife with exploitation and dangers like human trafficking.

Having to work for survival and unable to pay school fees, youth often drop out of school early.

This perpetuates a cycle of poverty, especially for young women. Today’s young people also must confront climate change, migration, violent extremism and the digital revolution—all of which disrupt traditional earning opportunities. In a rapidly evolving global economy, where small gaps in education become quickly insurmountable, it is vital that youth are equipped with the skills and knowledge needed to obtain sustainable livelihoods. These young men and women represent a staggering sum of human potential, yet many are trapped in poverty without the chance to study or work.

Tell us about what CRS is doing to assist at-risk youth, and their families, generally, and then specifically in Latin America and the Caribbean.

CRS is implementing holistic training with

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young people ages 16-25 who are unemployed, northern region of Ghana. When asked about her out of school. It provides life skills, vocational program she said, “this is not just about a job … training, entrepreneurship and jobs placement when I came to the program I had nearly given up around the world. The program has four compo- hope on life … now I have a job and more impornents: leadership (taking responsibility for one’s tantly I have hope for a better future.” life, family and community); community service Maria Ramirez is another young woman who (giving your talents to the service of others with- comes to mind. Her mother left her and her sister out expecting anything in return); family (a space with her grandmother when she was just 8 years where participants belong, based on trust, respect old. She dropped out of school and at 16 become and love); and opportunity (for personal and pro- pregnant and was in an abusive relationship. fessional growth).

Before the program, she said she was always deYouth are in the program full-time for six pressed and suffered from anxiety. It was no easy months. At project’s end, they receive assistance in finding a job, starting a A recent survey showed nearly 80% business or returning to school. We have thought about migrating to have worked with more than 9,000 young people in Latin America, and the U.S. and know the risks. When 70% have been placed in a job. These young people are from some of the asked why they didn’t go, they most violent neighborhoods in the overwhelmingly cited the YouthBuild Northern Triangle [Guatemala, Honduras, El Salvador]. A recent survey program as giving them hope and showed nearly 80% have thought about migrating to the U.S. and know an opportunity. the risks. When asked why they didn’t go, they overwhelmingly cited the YouthBuild feat for her to finish the program. She had to find program as giving them hope and an opportunity. daycare for her two girls, pay bus fare and [deal with] her husband, who was against her spendPlease share experiences that immediately ing so much time away from home. “The program came to mind when I asked you about “youth at taught me I am intelligent, and I learned how to risk.” breathe,” she said in retrospect.

When talking about youth at risk, three people immediately come to mind: How is providing aid of this nature in Latin Marvin, from El Salvador (name changed for America and the Caribbean challenging in comprotection) was abandoned by his parents, and at parison to doing the same in the U.S., if at all? age 12 was on the street and forced into a gang. What are the challenges?

By the time he was 18 he decided he wanted out.

One of the biggest challenges is that there are His payment for leaving the gang: a beating so se- more young people seeking jobs than there are vere it nearly killed him. While recovering from jobs available. That is why in addition to placing his wounds, he heard about YouthBuild, the CRS people in jobs, we support them in starting their employment program, and decided to try it. He own businesses or going back to school. We need joined the program, completed the six-month all three options. training in graphic design. He started his own A second challenge is that many businesses business, went back to finish school and then went don’t want to hire young people from poor neighon to college to get a technical degree in graphic borhoods because they are afraid of them. There design. “CRS saved my life and gave me a sense of is a lot of stigma in Central America; many people dignity I never knew,” he said. erroneously believe that young people from poor Elham is a young woman from Ghana. She neighborhoods are involved with gangs. That’s was trained in mobile phone repair and domestic just not true. electrical installation, thereby challenging the staAnother big challenge is getting families to altus quo and breaking gender stereotypes. Elham low young women to participate, and then freeing is now on her way to becoming one of the first them up from their domestic responsibilities so professional mobile phone repairwomen in the that they can participate. Overcoming the gender

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stereotypes—that girls should be home sewing or cooking — is critical and we work hard to help young women engage in career paths they choose.

What are the cultural factors at play in your work in Latin America — what needs to be understood by those doing this work there. Additionally, what are insights for us in the U.S.?

One of the biggest things we do is not to lower our expectations. Despite the fact that many of these youth have had limited opportunities and come from disadvantaged families, we keep our expectations high. They are demanding, but reasonable. I think this is a big shift from a culture that views poor people as incapable or less talented. They have big barriers to overcome and so we must be demanding, to help them succeed. We have found that they respond.

What kind of tangible difference are programs making? Any stories to share?

In Central America, most of the [youth who started jobs due to the program] are still in the job after one year. That is a big lift. We work in a place called Ciudad Quetzal outside Guatemala City, which is considered one of the toughest places in the city. Yet our partner has a job placement rate of 99%. In rural Nicaragua, where there are few formal jobs, over 85% of the youth in the program have started a business that is still going after one year. These are no small accomplishments in places where the majority of youth are unemployed.

What is your youth at risk “elevator speech”?

Investing in these young people is the best

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thing you can do … and I can prove it! We contracted an independent cost benefit study that showed our at-risk youth graduates recover the cost of the program in 24 months, have rising incomes and are less likely to migrate.

Are there ways in which the breadth and strength of the Catholic health ministry – or any systems — can effectively partner with CRS on any of this work?

In the next 10 years, most health issues will be around non-communicable diseases, things like diabetes. There will be a massive need for community health workers and there may be a way to partner with Catholic health networks to use digital platforms to train and certify young people to be health workers around the globe, provide them mentoring and work with health systems to put in place these kinds of programs.

What didn’t we ask? When you think of atrisk youth and CRS, what should we all understand and consider?

Young people who have been child soldiers or involved in gangs need our compassion and support, not condemnation. Giving these young people a second chance has a huge multiplier effect for building peace. These youth from some of the most marginalized communities have the power to change their lives, their families and their communities. We need to unleash that power.

BRUCE COMPTON is senior director, international outreach, the Catholic Health Association, St. Louis.

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EXECUTIVE SUMMARIES What’s Next When ‘Just Say No’ Doesn’t Work?

FRED ROTTNEK — We are experiencing an epidemic of opioid poisonings and opioid-related deaths. Raising young people in the midst of an epidemic — especially one that is intertwined with behavioral health, trauma and the actions associated with risky and youthful audacious behaviors — can be deeply frightening. While abstinence-only approaches remain popular in policies and educational programs, many health care professionals have seen them fail. We have known for decades that people are not on a level playing field when it comes to biological and environmental vulnerabilities or protective factors when it comes to substance use disorders.

Three types of preventive interventions have data that support

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efficacy: social resistance skills training, normative education and competence enhancement skills training.

Harm reduction is a strategy that mitigates unintended negative consequences of potentially risky behavior. Successful harm reduction techniques during an opioid epidemic include recognizing the signs of someone experiencing an opioid overdose; distributing Narcan (naloxone), medication that can reverse an opioid overdose, to every individual who uses opioids and every household with an opioid supply; expanding syringe access programs in which a client’s interest in seeking treatment can be assessed; and understanding when overdose is most likely. Harm reduction is a good first step and, for many youth, it’s a necessary step before treatment.

Limbo Really Exists: Undocumented Youth at Risk MARK KUCZEWSKI, JOHANA MEJIAS-BECK, AMY BLAIR, MATTHEW FITZ — The undocumented youth in the United States live in limbo. Harvard sociologist Roberto Gonzales articulated this reality and called being an undocumented immigrant a “master status” because it affects virtually everything the person does. Sometimes called “Dreamers,” after the never-passed legislation known as the DREAM Act, these young people were brought to the United States as minors. President Barack Obama instituted the Deferred Action for Childhood Arrivals Program, often called DACA, providing a two-year, renewable stay of action on their immigration status and an Employment Authorization Docu-

Asylum Seekers Find Safe Haven

ment. DACA opened educational and work opportunities for these young people.

In 2017, President Donald Trump rescinded DACA. Federal judges have ordered the program to remain open for renewals, while court cases are being heard. But the program is closed to new applicants. The uncertainty and denial of opportunity are stressful for undocumented immigrants. The American Academy of Pediatrics has created an online toolkit for physicians treating this population. The authors of this article created the Sanctuary Doctoring website outlining the aims for health care providers to address the needs of this young population, and they discuss the approach in the article. A moral imperative is for Catholic health care to close the chasm that separates us from the limbo in which these youth live.

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JOHN MORRISSEY — Moved by the incarceration of immigrant children seeking asylum who age out of youth facilities, Viatorians Br. Michael Gosch and Fr. Corey Brost opened Viator House of Hospitality as a Chicago-area residence in 2017. It can board and benefit up to 25 residents at a time. Those who opened Viator House are struck by the much wider need because of the numbers of unaccompanied minors coming across the nation’s southern border. Teenagers under the age of 18 are in the custody of the U.S. Office of Refugee Resettlement, but when unaccompanied youth turn 18, their custody is transferred to Immigration and Customs Enforcement. They are transferred to adult detention settings, which contrast with the group home settings asylum seekers lived in as children.

A legal advocacy organization in Chicago called the National Immigration Justice Center says that if a young person doesn’t

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have a source of legal aid by age 18, it’s difficult to get counsel.

Those who work and volunteer at Viator House say residents have experienced high levels of trauma from issues originating in their home country — many are fleeing violence or groups that threaten those who show opposition. Their journey to the United States is arduous, including disasters during transport, sickness or attack from those who prey on the refugee seekers.

Viator House provides two case managers, visits to doctors and dentists as well as access to counselors and education.

Those who work at the house say they see slow but promising progress in its residents. There is a Chicago-area residence for undocumented female immigrants called Bethany House.

Because of the great need, those who opened Viator House hope that other religious groups around the country will open similar residences.

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Caring for the Medically Complex Child

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ROBERT A. BERGAMINI — Approximately 3 million children in the United States are medically complex, which means they have multiple medical conditions and require specialized care from multiple providers.

The current health care system often fails to provide optimal care for medically complex children nor does it provide appropriate support for their families. Most of these children are covered by Medicaid because they were born into poverty or because their families have been impoverished by overwhelming medical costs.

The current health care system primarily offers fragmented care. The complexity of the medical needs and the inadequacies of the current system affect the lives of children and their families daily in ways most of us would never imagine. Many of the children have scoliosis and need custom car seats, which cost more than what most Medicaid programs reimburse.

Home Visits Set Stage for Health

Prostheses are replaced on a schedule that is based on adult data, so children grow into larger sizes before they are eligible for another one. The total number of children with complex medical conditions is small, so their data are not considered in health system purchasing contracts.

Children who are medically complex require constant care, and many commercial insurance contracts exclude this service.

Their homes must be modified to accommodate equipment and supplies. While Medicaid provides transportation to medical appointments, there are many rules about its use. Coordinating between multiple providers and appointments can be difficult. Medically complex children also face inherent bias.

They and their families may receive spiritual care or advice from people unschooled in the support they need. Families also struggle to meet the costs and complete the time-consuming work of transferring guardianship as well as transitioning to new providers as children age out of pediatric care.

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ALLEN SÁNCHEZ — When CHI St. Joseph’s Children strategized how to improve outcomes, the organization’s research took it back to the cradle. The CHI St. Joseph’s Children ministry, based in Albuquerque, N.M., focuses on early childhood development and support for families and their children. It employs early childhood educators, known as “home visitors” to meet with first-time parents as they care for their children. The educators help parents understand and recognize developmental milestones, and they offer ways to play with infants and toddlers to promote connection and learning.

At a time when health care providers wrestle with the chal-

lenges of managing the health of their communities, home visiting has proven to be a valuable approach. In addition to education and support for families, program representatives link families to the resources they need. CHI St. Joseph’s Children’s home visitors are trained to share evidence-based curriculum with families. Of equal importance, they learn how to approach each family with values of reverence, integrity, compassion and excellence. CHI St. Joseph’s Children has a study tour, where people visit the organization and the region to learn every aspect of operating a home visiting program.

They also have a manual providing step-by-step instructions related to everything from hiring to training to evaluation that they make available to other organizations.

Aid Groups Seek to Reduce Orphanages, Expand Family-Based Care Globally SHANNON SENEFELD, PHILIP GOLDMAN and ANNE SMITH — Today we know that about 80% of children growing up in Uganda’s so-called “orphanages” have at least one living parent. And like most parents, they want to bring their children home where they can love and protect them, if they can get the support they need. Not all orphanage owners are unscrupulous, but almost all of them raise money and attract volunteers by posting images of the children in their facilities on the internet. Volunteers, who visit for short periods of time, show affection and return home, which disrupts the attachment process. It can leave children vulnerable to others who wish to exploit them. In addition, orphanages are not cost effective.

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Three organizations — Catholic Relief Services, Lumos and Maestral International — created a program called Changing the Way We Care. It was a finalist in a MacArthur Foundation competition and, after receiving additional support from other organizations, it launched in 2018 with a $24 million budget.

The initiative began in Guatemala, Kenya and Moldova. Working hand in hand with children, families, communities and governments, the initiative is building upon the expertise of the three organizations as well as the body of evidence and best practices so far. Using programmatic successes, they hope to influence political bodies, funders and other countries. Changing the Way We Care is building models for how to transition from orphanages to family care for children. It is also asking orphanage volunteers to keep in mind that most developed countries did away with orphanages decades ago because of the harm caused to children.

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CHRISTUS Moves Beyond Hospital Walls to Tackle Asthma SUE JOHNSON — CHRISTUS Health does not let the burden of asthma fall on a family or an individual alone. At The Children’s Hospital of San Antonio, associates have put together a team approach to take care of patients suffering from asthma. From the emergency department to various units within the hospital, education is offered to patients and families, including a tangible asthma action plan they can carry with them when they leave. However, truly working toward a solution meant going outside hospital walls and into the community.

CHRISTUS St. Michael Health System and the University of Texas Health Northeast in Tyler, Texas, launched a mobile pe-

diatric asthma program in 2014. The Spirit of St. Michael is the mobile asthma program based in Texarkana, Texas. Its outreach vehicle, equipped with intake and treatment stations and a private examination area, has helped more than 3,000 children since the program began.

The Spirit of St. Michael removes barriers for children and their families who may be unable to travel or pay for preventive asthma care. From demonstrating how an inhaler can help a child breathe easier to educating how to minimize asthma triggers like dust and tobacco smoke, the team assists children and their families at a school’s doorstep.

Responding to Transgender Youth with Dignity and Respect ERIN ARCHER KELSER — When a person’s sense of their own gender doesn’t match that person’s sex assigned at birth, they are referred to as “transgender.” Data from the Centers for Disease Control and Prevention indicate that 0.6% of U.S. adults identify as transgender. Large studies have repeatedly shown that transgender people are at disproportionately high risk for family and social rejection, discrimination, violence, poor health outcomes, homelessness and poverty, drug and alcohol abuse and suicide.

The most protective factor against risks has been found to be affirmation and respect for their gender identity by the trans person’s peers and family of origin. Most major medi-

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the agriculture industry, victims of trafficking who take part in forced labor come from America’s guest worker, migrant and seasonal worker communities. In other countries, trafficking occurs in the military. In a small number of cases, people are trafficked for illegal organ donation.

Efforts to end human trafficking have progressed in the United States from a social movement to improved federal prosecution and policies to fight the crime. Victims of trafficking can be found in health care settings, in neighborhoods and in schools. Education helps people recognize signs that someone may be trafficked. Young people who have been trafficked are vulnerable to physical injuries, including sexually transmitted diseases, drug and alcohol overdoses and suicide.

Prevention of trafficking saves young lives.

Improving the Response for Young People with Psychosis JESSICA M. POLLARD — Psychosis is a brain-based, environmentally influenced condition that can occur in the context of many mental and physical health disorders. For a diagnosis of a psychotic disorder there needs to be one or more “positive” symptoms, or the adding on of experiences that weren’t present prior to onset, including hallucinations, delusions and disorganization. Primary psychotic disorders (for example, schizophrenia) often include negative symptoms like decreased emotional expression, social interaction, motivation, energy and initiation.

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cal societies have spoken out recommending affirmation of a trans person’s gender identity and access to gender affirmative care. Some previous approaches, like trying to “wait and see” if gender identity changes, trying to “redirect” a youth to their natal gender or closer to neutral, or trying to use “reparative” therapy are not currently recommended. Some transgender people, especially children, seek to socially transition temporarily while exploring their feelings and options. Other people socially transition first before pursuing further medical treatment. The medical and psychological communities are in agreement that being transgender is not a disorder and should not be stigmatized.

Protecting Young People from Human Trafficking SR. ROSEMARY DONLEY and CARMEN KIRALY — Youth, including those who are poor or from abusive or neglectful homes, are among the most vulnerable to human trafficking. Human trafficking often exists in plain sight, but it can be so hard to see. Contrary to popular belief, human trafficking happens in every country, including the United States. While the majority of trafficked women find themselves immersed in sex work, women also are trafficked for domestic work or care of children. Those working in health care should be aware that some workers from foreign lands, notably nurses in hospitals and long-term care facilities, are lured into working in the United States through unfair labor practices. In

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The work at Specialized Treatment Early in Psychosis, or STEP, is a program of the Connecticut Department of Mental Health and Addiction Services and Yale University. A multidisciplinary team develops an individual, recovery-oriented plan. It could involve employment and school support, education about psychosis and how to manage it, skill building and medications prescribed at the minimum effective dosing. Each year, 100,000 young people in the U.S. will develop psychosis. Most of the functional decline takes place in the first few years of onset, so proper treatment is key for recovery and functioning.

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P R AY E R

SERVICE

Prayers forYouth in Need of Love and Support KARLA KEPPEL, MA, MA MISSION PROJECT COORDINATOR, THE CATHOLIC HEALTH ASSOCIATION, ST. LOUIS

OPENING PRAYER AND INTRODUCTION Leader: As we center ourselves to begin our prayer, let us listen to the Gospel according to Matthew: “Then children were brought to him that he might lay his hands on them and pray. The disciples rebuked them, but Jesus said, ‘Let the children come to me, and do not prevent them; for the kingdom of heaven belongs to such as these.’

After he placed his hands on them, he went away.”

(Matthew 19:13-15) (Pause)

decisions about the things that occur. I know I haven’t been making the right decisions, but I’d like to do better at that.”

Response: God, ready our hands, our feet, our hearts, that we might be your face of love in action.

Reader 2: “Prayers of Street Kids” “Dear Lord, this is your son. I am writing you today to thank you [for] stopping the pain and helping me get through my ordeal that I’m facing.

Help me get my life right and find a job. Amen I love you.”

Response: God, ready our hands, our feet, our hearts, that we might be your face of love in action.

Let us pray: Loving God, we hear you when you remind us to whom your kingdom belongs. Grant us the strength, humility and vision to serve those young people among us who are most at risk. May your spark of life be preserved in them that they might be protected from the darkness of the world. We ask this in the name of your son, Jesus Christ.

Response: Amen.

The following readings are taken from the prayers of young people in shelters as documented in the column “Prayers of Street Kids.”1 Listen now as we bear in mind how we are called to care for and protect those least among us.

Reader 1: “Prayers of Street Kids” “Dear heavenly Father, please give me the strength to go on through my stay at Covenant House. Give me the wisdom to do what is right and not wrong.

And please give me the strength to make the right 1. Some of these prayers are excerpted from an article by Kevin Ryan, president and chief executive officer of the nonprofit Covenant House. He details some of the written prayers of homeless or trafficked youth who have come to Covenant House for services in “Prayers of Street Kids,” Catholic News Service, April 13, 2011, https://www.catholicnews.com/services/ englishnews/2011/prayers-of-street-kids.cfm.

Reader 3: “Prayers of Street Kids” “Dear God, if you’re there and you care, I just want someone to love me, someone to talk to when I need to talk. Someone to cry on when I need to cry. Most of all someone to love me and walk as far as they wish through my life. Amen.”

Response: God, ready our hands, our feet, our hearts, that we might be your face of love in action.

CLOSING PRAYER Leader: “Whoever humbles himself like this child is the greatest in the kingdom of heaven. And whoever receives one child such as this in my name receives me.” (Matthew 18:4-5) (Pause) Creator of all, as your children it is our best hope to humble ourselves to maintain faith like a child.

Guide us in all that we do, that we may work to receive young people among us in your name.

Grant, we pray, that they may grow, discover, and come to understand how deeply loved they are by you through our work to protect them. Through Christ, our Lord, we pray.

Response: Amen.

“Prayer Service,” a regular department in Health Progress, may be copied without prior permission.

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HEALTH PROGRESS

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IF YOU ’RE NEW TO MISSION — SAVE T HE DAT E!

Essentials for Leading Mission in Catholic Health Care

For New Mission Leaders!

Essentials for Leading Mission in Catholic Health Care is designed specifically for new mission leaders and those considering entering the ministry of mission integration to assist their growth in the competencies necessary to be effective in their roles.

In-Person Meeting SEPTEMBER 9 – 11, 2019

The Chase Park Plaza Royal Sonesta Hotel St. Louis

The 2019 program will be followed by a series of online meetings, approximately every two months starting in November. The topics covered in the online meetings will include international outreach, community benefit, advocacy as well as subject areas the cohort group will determine. We will use the Zoom® video conference meeting platform so participants will be able to see one another and continue to develop their mission leader network.

The program will start at approximately 1 p.m. on Monday, Septmber 9, and conclude by noon on Wednesday, September 11.

Online Zoom® Meetings, 12:30 – 2 p.m. ET NOVEMBER 12, 2019, JANUARY 14, 2020, & MARCH 10, 2020

The registration cost covers both the in-person meeting and all online meetings, with the series concluding in the spring of 2020.

OBJECTIVES After completion of this program, participants will be able to: !

Express trends in mission

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pply the Ethical and Religious A Directives for Catholic Health Care Services

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escribe the mission leader’s D role in spiritual care and workplace spirituality

leader competencies and organizational roles. !

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rticulate a fundamental A theological grounding for the work of mission and framework for the Catholic health ministry xplain Catholic social teaching E relating to health care

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I dentify timely issues, practices and resources in pastoral care and ministry formation

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rticulate the role of the mission A leader in business decisions including strategic planning, budgeting and operations

!

escribe the mission leader’s role D in community benefit

!

S hare the importance of international outreach as part of the organization’s mission

LEARN MORE AT CHAUSA.ORG/EVENTS