The Helen: The Journal of Human Exceptionality - December 2022

ISSUE NO. 7 DECEMBER 2022

WHY IS

Disability

Competency Important?

S l ee

Series

p Why

Do We

SLEEP?

Impact of

Dobbs Decision

on Prenatal Disability

EDUCATION & SUPPORT

Guns, Valproic Acid, and H.Pylori

Just a Tuesday!

ENDORSED BY

helenjournal.org • HELEN | 1

Founding Sponsors Comprehensive and collaborative support for the disability community demands partnerships, coalitions and alliances.

The Founding Sponsors of HELEN: The Journal of Human Exceptionality are making it possible to provide valuable information to healthcare professionals, those living with disabilities, their families, and caregivers.

Steve Perlman, DDS, MScD, DHL (Hon.) For information about becoming a Founding Sponsor of HELEN, please contact Vanessa Ira at vira@helenjournal.org.

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Contents 22

Why is Disability Competency Important?

By Barrie Cohen

To be disability competent, it starts by practices knowing what disability competence means, has actively made adjustments, and can show the improvements.

18

Why Do We Sleep?

By Beth Maslow MD, MS and Althea A. Shelton, MD, MPH

A discussion delving into the functions of sleep and why we need it.

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Contents Volume 1, Issue 7

26

36 COLUMNS 8 Nothing is Written

38 Perspectives

Lessons from the Vision of Mr. Magoo

Fast Forward: Helping Make Health Care More Accessible to Those with I/DD

By Rick Rader, MD, FAAIDD, FAADM

By Zachary Taylor, OMSII

10 Happenings

News From Around the Community

14 First Class

FEATURES 26 Impact of the Dobbs Decision on

Let’s Talk About Communication

Prenatal Disability Education and Support

By Samantha DiSalvo

By Stephanie Meredith

16 Behavior: Gateway to Inclusion Guns, Valproic Acid and H.Pylori.

Just a Tuesday!

By Ley Linder, MA, M.Ed, BCBA

30 AADMD

Comparing Conditions of People with Disabilities in Three Large Countries and The U.S.

By H. Barry Waldman, DDS, MPH, PhD Rick Rader, MD, FAAIDD, FAADM Steven P. Perlman, DDS, MScD, DHL (Hon) Allen Wong, DDS, EdD, DABSCD

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34 All in the Family

By Sherry Burchard

36 People with Paralysis Navigate a Room Via a Mind-Controlled Wheelchair

By Carissa Wong

ON THE COVER: Amir and His Mom. Photo by Rick Guidotti - positiveexposure.org

Helen: The Journal of Human Exceptionality is where people with disabilities, families, clinicians, and caregivers intersect for inclusive health.

Editor in Chief Rick Rader, MD, FAAIDD, FAADM Senior Managing Editor Vanessa B. Ira Senior Editor, Steve Perlman, DDS, MScD, Special Projects DHL (Hon)

34

Publisher Allen Wong, DDS, EdD, DABSCD Art Director Alyse Knudsen

CONNECT WITH US!

HelenJournal.org @HelenJournal_

American Academy of Developmental Medicine & Dentistry 3 Forester Avenue, #22 Warwick, NY 10990 All rights reserved. Copyright © 2022 American Academy of Developmental Medicine & Dentistry

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Helen: The Journal of Human Exceptionality neither endorses nor guarantees any of the products or services mentioned in the publication. We strongly recommend that readers thoroughly investigate the companies and products or services being considered for purchase, and, where appropriate, we encourage them to consult a physician or other credentialed health professional before use and purchase.

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Editorial Advisory Board HELEN’s Editorial Advisory Board is collaboration of distinguished health care professionals, advocates, policy makers, and educators. Each member brings knowledge, a unique perspective and valuable input to HELEN.

Marc Bernard Ackerman, DMD, MBA, FACD Director of Orthodontics, Boston Children’s Hospital; Adjunct Assistant Professor, University of Pennsylvania School of Dental Medicine, PA Jean F. Campbell Principal, JF Campbell Consultants; Founding Board Member, Professional Patient Advocates in Life Sciences (PPALS) Roberta Carlin, MA, MS, JD Executive Director, American Association on Health and Disability, Rockville, MD Renee Dease Specialist & Coordinator, Healthy Athletes Health Programs at Special Olympics International Steven M. Eidelman H. Rodney Sharp Professor of Human Services Policy & Leadership; Faculty Director, The National Leadership Consortium on Developmental Disabilities, University of Delaware David Ervin, BSc, MA, FAAIDD Chief Executive Officer, MAKOM, Rockville, MD David Fray, DDS, MBA Professor, Department of General Practice and Dental Public Health, University of Texas School of Dentistry, Houston, TX Rick Guidotti Founder and Director of Positive Exposure, New York, NY Matthew Holder, MD, MBA, FAADM CEO, Kramer Davis Health; Co-founder, AADMD; Co-founder, ABDM; Co-founder, Lee Specialty Clinic

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Emily Johnson, MD Medical Director, Developmental Disabilities Health Center, Peak Vista Community Health Centers, Colorado Springs, CO Seth Keller, MD Neurologist, Co-president, National Task Group on Intellectual Disabilities and Dementia Practices Gary Liguori, PhD, FACSM Dean, College of Health Sciences, URI Academic Health Collaborative, Kingston, RI Joseph M. Macbeth President/Chief Executive Officer, National Alliance for Direct Support Professionals, Inc. Susan L. Parish, PhD, MSW Dean and Professor, College of Health Professions, Virginia Commonwealth University, Richmond, VA Hoangmai H. Pham, MD, MPH President and CEO, Institute for Exceptional Care Hon. Neil Romano Former Assistant Secretary, United States, Department of Labor, Office of Disability Employment Policy, Chairman Emeritus, National Council on Disability, President, TRG-16 Vincent Siasoco, MD, MBA Assistant Professor, Albert Einstein College of Medicine; Director of Primary Care, Rose F. Kennedy CERC, Montefiore; Med Director, ADAPT Community Network, New York, N.Y. JoAnn Simons, MSW

Chief Executive Officer, The Northeast Arc, Danvers, MA Michael Ashley Stein, JD, PhD Co-founder & Executive Director, Harvard Law School Project on Disability, Cambridge, MA Justin Steinberg Special Olympics Northern California Athlete Member, AADMD Board of Directors Stephen B. Sulkes, MD Pediatrician, University of Rochester Medical Center, Rochester, NY Carl Tyler, MD Gerontologist, Research Director, Lakewood Family Health Center, Cleveland Clinic, OH Barbie Vartanian Parent Advocate; Director, Oral Health Advocacy & Policy Initiatives NYU Executive Committee, Project Accessible Oral Health H. Barry Waldman, DDS State University of New York Distinguished Teaching Professor, School of Dental Medicine, Stony Brook University, NY Dina Zuckerberg Director of Family Programs, MyFace, New York, NY

Collaborative Organization Mission Statements Helen: The Journal of Exceptionality is proud to be endorsed by the nation’s leading organizations that advocate for people with Intellectual and Developmental Disabilities (IDD).

The AADMD is resolved: To assist in reforming the current system of healthcare so that no person with IDD is left without access to quality health services.

To prepare clinicians to face the unique challenges in caring for people with IDD. To provide curriculum to newly established IDD training programs in professional schools across the nation.

To increase the body and quality of patient-centered research regarding those with IDD and to involve parents and caregivers in this process.

It is the purpose of the American Academy of Developmental Dentistry (AADD) to establish postdoctoral curriculum standards for training dental clinicians in the care of patients with IDD, to establish clinical and didactic training materials and programs to promulgate these standards, and through its certifying entity – the American Board of Developmental Dentistry – to grant board-certification to those dentists who have successfully completed these training programs.

To create a forum in which healthcare professionals, families and caregivers may exchange experiences and ideas with regard to caring for patients with IDD. To disseminate specialized information to families in language that is easy to understand.

To establish alliances between visionary advocacy and healthcare organizations for the primary purpose of achieving better healthcare.

The American Academy of Developmental Medicine (AADM) is a medical society dedicated to addressing the complex medical needs of individuals with intellectual and developmental disabilities across the lifespan.

It incorporates clinician training and awareness, teaching, advocacy, research, board certification, health equity, interdisciplinary collaboration, inclusive care delivery models and shared decision making.

AAHD is dedicated to ensuring health equity for children and adults with disabilities through policy, research, education and dissemination at the federal, state and community level.

AAHD strives to advance health promotion and wellness initiatives for people with disabilities.

AAHD’s goal are to reduce health disparities between people with disabilities and the general population, and to support full community inclusion and accessibility. helenjournal.org • HELEN | 7

NOTHING IS WRITTEN - EDITOR’S DESK Rick Rader, MD, FAAIDD, FAADM - Editor in Chief

Lessons from the Vision of Mr. Mag

W

ithout apologies I confess I grew up reading comic books and watching cartoons. Our favorite childhood cartoon characters didn’t just entertain us on Saturday mornings, they taught us valuable life lessons.

Kristen Sollee in Bustle points out “Ten Life Lessons We’ve Learned From Cartoons”: Conflict is A Given. Cartoon Clothes Aren’t Like Real World Clothes. Your Work Attitude Matters. Successful Relationships Aren’t Easy. Rejection And Failure Are a Part of Life. Caring For Nature Is Important. Our Reality Isn’t Cartoon Reality. Villains Aren’t Always Who You Think. Success Requires Work and Pizza Rules.

While I think she nailed it, I would add another lesson to the list. Not All 8 | HELEN • helenjournal.org

Disabilities Are Disabling.

Short Film three times and received This vital lesson was demonthe award twice. TV Guide ranked Mr. strated and evidenced by Mr. Magoo number 29 on its “50 Greatest Magoo.

Cartoon Characters of All time” list.

The Wikipedia reference to Following his escapades which Mr. Magoo sets the stage for the often brought him close to disaster, his lesson. Mr. Magoo (known by ending catchphrase was “Oh Magoo, his full name, J. Quincy Magoo) you’ve done it again.” is a fictional cartoon character The tribulations of Mr. Magoo created at the UPA animation remind me of the immortal words of studio in 1949. Voiced by Jim famed baseball player Satchel Paige.

Backus, Mr. Magoo is an elderly, Satchel played in both Negro Basewealthy, short-statured retiree who ball and Major League Baseball. He gets into a series of comical situaclaimed they were never able to locate tions as a result his birth of his extreme certificate nearsightedness, and was uncompounded sure of his “If you didn’t think you birthday. ‘’I by his stubborn refusal to admit had a disability, could don’t know the problem. how old I you be considered However, am because through uncanny a goat ate being disabled?” streaks of luck, the Bible the situation althat had my ways seems to work itself out for him, birth certificate in it. leaving him no worse than before.

The goat lived to be twenty-seven.”

Bystanders consequently tend to think This situation prompted him to ponder that he is a lunatic, rather than just the significance of age. “How old being nearsighted. would you be if you didn’t know how Mr. Magoo was no slouch. Mr. Maold you are?” goo episodes were nominated for the And it’s a point well taken.

Academy Award for Best Animated It reflects back to Mr. Magoo and

“

begs the question, “If you didn’t think you had a disability, could you be considered being disabled?” And that is exactly where we find Mr. Magoo and how he endeared himself to others. Of course, he was confused, frustrated, and distanced himself from others as well.

Without him knowing it, Mr. Magoo has had a life changing impact on one of our country’s most respected disability advocates. Catherine J. Kudlick is a Professor of History and director of the Paul. K. Longmore

Institute on Disability at San Francisco State University. The disability field has been shaped by her essay “Disability History: Why We Need Another ‘Other’” Kudlick has also published personal thought-pieces “Black Bike, White Cane: Timely Confessions of a Special Self.”

Being a child with a disability (vision impairment) proved to be challenging for Kudlick. She described growing up with cartoons, such as Mr. Magoo. “Many know Mr. Magoo to be about an elderly man, who had nearsightedness. This cartoon mocks the disability of visual impairment when Mr. Magoo would walk off cliffs and portray him as a person who could not care for himself. In regards, to this story, I knew I didn’t want to be that person, just no way.” It’s evident that she did not become a Ms. Magoo.

In 1997, the Disney corporation considered reviving Mr. Magoo as a live action movie. Disney did not understand the power of the disability community. According to Jeff Jacoby

writing in the Boston Globe, “The National Federal of the Blind adopted a resolution slamming Magoo as offensive to the visually impaired. The Federation’s chairman berated Disney for thinking “it’s funny to watch an ill-tempered and incompetent blind man stumble into things and misunderstand his surroundings.”

Disney fought back and moved forward with the film. As a concession, they added a message to the end of the film. “The preceding film is not intended as an accurate portray of blindness or poor eyesight. Blindness or poor eyesight does not imply an impairment of one’s ability to be employed in a wide range of jobs, raise a family, perform important civic duties, or engage in a well-rounded life. All people with disabilities deserve a fair chance to live and work without impeded by prejudice.”

Bryant Gumbel, a news announcer at the time remarked, “These days, no matter what the joke may be, it is harder and harder to make it to the punch line without offending someone. All of which has left us wondering about how thick skinned the society would become.”

Wonder if Gumbel suffered from lichenification and hyperkeratosis if he would watch cartoons ridiculing thickskinned people.

At that time, the newsletter of the Colorado Parents of Blind Children published an editorial that was in my opinion a clear vision. “By far one of the most painful tasks of a parent of a blind child is that of trying to help the child cope with others – especially other children’s – attitudes about their blindness. There isn’t a blind child – including and sometimes especially those with partial vision – who hasn’t experienced some level of teasing about their eyes and vision. Sometimes it is relatively mild, arising out of ignorance and thoughtlessness. But it can too often turn into painfully cruel teasing and taunting. But whether thoughtless, or deliberately cruel, the

potential for damage to a child’s developing self-esteem is very real, and it’s a rare parent indeed who doesn’t agonize with and for the child when – not if, but when – such incidents occur.”

If Magoo served and strived to educate people about the need to respect, understand and support people with visual impairment, or any other disability, I would certainly consider him worthy to become a member of the HELEN Advisory Board. But until we see that in revised and future episodes, we will continue to say, “Oh Magoo, you’ve done it again.”

Why Alone we can do so little; together we can do so much.

HELEN: The Journal of Human Exceptionality pays tribute to Helen Keller. Ms. Keller is perhaps the most iconic disability rights advocate and an example of how an individual with complex disabilities found and used her stamina, perseverance, resilience and determination to accomplish great things.

Helen personifies the spirit, mission and vision of The Journal of Human Exceptionality. Her remarkable life is a reflection of her determination; she inspired us with her words, “What I’m looking for is not out there, it is in me.”

“Nothing is written.”

This quote from T.E. Lawrence implies that nothing is inevitable, life consists of choices, and how the individual can make an impact on his/her destiny. The disability community continues to reinforce and remind me of this; hence the name for my monthly musings.

- Dr. Rick Rader helenjournal.org • HELEN | 9

HAPPENINGS

AUTISTIC SELF ADVOCACY NETWORK

Mourning the Loss of

Lois Curtis

L

ois Curtis was one of two people who sued for their rights in an important disability rights case called Olmstead v. L.C. She recently died at age 55.

As a child, Lois Curtis was put in an instituPhoto courtesy of Robin Rayne/ZUMA tion. Later in her life, she remembered that she used to pray at night to get out of the institution.

Lois answered: “I hope they live long lives and have their own place.

As a young adult, Lois started calling an orgaI hope they make money. I hope they learn every day. I hope they nization called Atlanta Legal Aid. She asked meet new people, celebrate their birthdays, write letters, clean up, go Atlanta Legal Aid to help her get out of the insti- to friends’ houses and drink coffee. I hope they have a good breakfast tution and move into the community. Atlanta Le- every day, call people on the phone, feel safe.” gal Aid decided to work with Lois. They helped Because of Lois, people with disabilities have the right to receive her and another woman, Elaine Wilson, sue for services in the community. The Olmstead decision has led the govtheir rights. The case went all the way to the ernment to make more opportunities for people with disabilities to Supreme Court. In 1999, the get services outside of instiSupreme Court decided that tutions. Advocates and the the Americans with Disabiligovernment use the Olmstead ties Act gave disabled people decision to fight for disabled Because of Lois, people the right to receive services in students’ rights to learn in the the community, not just in an same classroom as non-diswith disabilities have the institution. abled students. Advocates and right to receive services in the government use Olmstead After getting out of the institution, Lois eventually moved to fight for disabled workers’ the community. to her own home in Atlanta. rights to work in the same Her community loved her, and workplace as non-disabled she made beautiful art. Lois used a kind of supworkers, and earn a competitive wage. ported decision-making called a “microboard.”

Autistic Self Advocacy Network (ASAN) remembers Lois Curtis’ This was a small group of people who had amazing life, and honors her in their work by: regular meetings to talk about Lois’ life. They • Working to make sure that everyone has the rights that the Olmhelped make sure she had what she needed and stead decision promises them. achieved her goals. Lois’ microboard helped her • Making sure that more people can use supported decision-making get a self-directed services waiver from Medicand alternatives to guardianship. aid. They also helped her show her artwork in • Following the leadership of Black disabled advocates and advogalleries. In 2011, Lois visited the White House cates with intellectual disabilities. for a celebration of the anniversary of Olmstead.

Lois Curtis was given no option but to live in an institution, but In 2015, a friend asked Lois, “What do you she refused to accept that and created a different path to follow - for wish for all the people you’ve helped move out herself and for many other people with disabilities. of the institution to live in their communities?”

Rest in Power, Lois Curtis.

“

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Advancing Medicaid Policy

Ensuring Oral Health Equity, Access & Inclusion Supporting Helen’s Mission to improve the well-being of People with Intellectual & Developmental Disabilities 12 | HELEN • helenjournal.org

HAPPENINGS

Family-to-Family

HEALTH INFORMATION CENTERS (From Military OneSource) Family-to-Family Health Information Centers are nonprofit organizations familiar with the issues facing families with special needs. In addition to the services for military families that are available here at Military OneSource or at your local family support center, Family-to-Family Health Information Centers can connect you to resources that can provide and finance health care for your children, help locate assistance, and explain legislation. Each center has staff — many are parents of children with special needs — who understand available services and programs.

Find answers through Family-to-Family Health Information Centers Your local Family-to-Family center can help you find answers to a variety of health care issues. Along with other services, center staff can help you: • Learn eligibility requirements for Medicaid • Find answers to questions about Social Security and Supplemental Security Income • Write a health care plan for teachers and therapists • Locate resources to pay for medications • Find support groups • Understand Title V and other programs that can help your family member

• Transition between insurance plans Tap into useful resources Get the help you need from your Family-to-Family center through: • Support and referrals by telephone, email or in-person contact • Training workshops • Helpful websites • Newsletters and other publications • Guidance on health programs and policy • Evaluation and outcome assessments Family-to-Family Health Information Centers can help you navigate the waters of health care and find the personalized tools you need for your family. Learn more about Family-to-Family Information Centers and find a link to locate the one in your state at familyvoices.org.

For more information on resources for finding access to medical services for families with special needs, read the Exceptional Family Member Program fact sheet on Medicaid and Medicare (https://www.militaryonesource.mil/ products/public-benefits-resources-medicaid-and-medicare-fact-sheet-962/).

www.medicaiddental.org

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FIRST CLASS

Talk About Communication

Let’s

By Samantha DiSalvo

“You won’t learn much.”

“It’ll be a difficult patient.”

“There’s not much for you to do or see.”

T

hese were all said to me throughout my clinical rotations when I asked to follow different patients who had an intellectual and/or developmental disability (I/DD). These statements sound harsh when written alone, but I do not believe that these words were ill intentioned. Rather, I believe the problem lies in the system. The system in which medical schools are not required to teach future physicians how best to care for individuals with disabilities; and this often leaves health care professionals hesitant when providing care. In my eyes, these patients were the perfect learning opportunity and yet, I was being discouraged from it. Why was that their gut reaction?

In medical school, we have specific courses dedicated to learning how to communicate with our patients. We learn the right questions to ask to obtain a thorough history. We learn that if a patient has pain, you should go through the “OPQRST” questions to further evaluate it. When was the Onset? What Provokes or Palliates it? What is the Quality of the pain? And so on. But what do we do when our patients do not communicate directly with words? You cannot bring in a translator to help you in these situations.

Rather, the physicians themselves must know that there is more to communication than just speaking words. There are communication boards or devices, facial expressions, gestures, and so much more to help you obtain a thorough history. This is not covered in my medical school curriculum, nor most other medical schools around the country. It is this lack of education, lack of knowledge, and ultimately, 14 | HELEN • helenjournal.org

the lack of comfort that leads to those statements you read at the beginning of this article.

And it is those same phrases that were the motivation behind one of our recent Einstein American Academy of Developmental Medicine and Dentistry (AADMD) Student Chapter webinars where we focused on improving communication skills amongst future physicians and individuals with I/DD. This was a very special event for me because I was able to bring in two experts on the topic who also happen to be family—my brother Anthony, who has cerebral palsy, and my mom, who is his primary caregiver and retired physical education teacher for children with disabilities.

A New Kind of Family Project My brother and I have worked on countless projects together, from the annual Christmas raffle to selling Superbowl boxes, but this past September we added this new project, creating a presentation to teach my fellow medical students. In preparation for this event, we met with Dr. Seth Keller, a board-certified neurologist with years of experience caring for and advocating alongside individuals with I/DD, to help bring this presentation to fruition.

Together we brainstormed the main objectives of our presentation, using Anthony’s perspective as a patient, my

mother’s perspective as a caregiver, Dr. Keller’s perspective as a physician, and mine as a medical student currently in training. Ultimately, our goal of the presentation was to: 1. Identify the different modes of communication used by individuals with I/DD 2.Discuss diagnostic overshadowing and other bias’ individuals with I/DD often face in the healthcare setting 3.Show ways of implementing the communication strategies discussed in the presentation within the clinical setting From the very first planning meeting we had, my brother was filled with excitement and extremely motivated to share his story with my classmates.

He Facetimed me almost every night to discuss details of the presentation and finalize the major points that he wanted to get across. Anthony, being the computer-wiz that he is, worked to create PowerPoint slides to introduce himself at the beginning of the presentation, recording his programmed screen-reader to read each of the slides out loud. This would not only allow Anthony to introduce himself to the group, but would also highlight the use of communication devices as a form of communication for some individuals.

My mom, my brother, and I continued to meet to discuss the details, and with each meeting, we were able to uncover more and more physician encounters that really highlighted the importance of communication, both the good and the bad. We sifted through countless physician encounters they have had through the years and identified which ones they liked more and then took it a step further to question why those encounters were more positive for Anthony and my mom.

Ultimately, it came down to communication. Physicians who spoke directly to Anthony and did not assume that he does not understand were often ones that provided better care in their eyes. Physicians who asked Anthony

about his life outside of the chief complaint that brought him to the doctor formed a stronger physician-patient relationship with Anthony. Physicians who explained why they were ordering a certain test or what a certain result meant gave Anthony more control and knowledge in his healthcare.

Ultimately, with the help of Dr. Keller, we were able to create a presentation that highlighted all of Anthony and my mom’s experiences within the health care system, with a focus on what future physicians can do better.

We incorporated a case presentation and mock interview between Anthony and Dr. Keller to demonstrate key communication strategies in real-time and really allow Anthony to share his perspective of navigating the health care system as an adult with cerebral palsy and intellectual disability.

The statements that I heard on my clinical rotations are unacceptable and there needs to be a change. At Albert Einstein College of Medicine, we are working to change this. Our school is fortunate enough to be members of the Rose F. Kennedy University Centers for Excellence in Developmental Disabilities (UCEDD) which has allowed passionate faculty, such as Dr. Vincent Siasoco and Joanne Siegel, to instill educational lectures and panel presentations into the required medical school curriculum. But there is still more that needs to be done.

During the past two years, the formation of the Einstein student chapter of the AADMD has allowed us to provide extracurricular opportunities for medical students to learn more about treating this underserved population as well as participate in volunteer events to get to know these patients outside of the clinic setting. But there is still more that needs to be done. I hope that this lecture made a small change in how some of my classmates

treat individuals with disabilities, but one lecture is not enough. There needs to be a system-wide change, allowing all physicians-in-training access to the education necessary to provide quality care for patients with I/DD. Sam DiSalvo is an M.D. Candidate, Class of 2023, Albert Einstein College of Medicine. She is a member of Einstein’s American Academy of Developmental Medicine and Dentistry (AADMD) Student Chapter.

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BEHAVIOR: GATEWAY TO INCLUSION

GUNS, VALPROIC ACID AND H.PYLORI.

Just a Tuesday!

By Ley Linder, MA, M.Ed, BCBA

I

f I had to be a “traditional” behavior analyst (BA), I would be a terrible one. The repetitive nature of discrete trial training would have me reading the Geneva Conventions and conferring with geopolitical legal experts on the lunch break of my first day of employment.

I’m not here to say my colleagues who live in the world of tacts and mands, in addition to possessing a fluency in all the types of differential reinforcement, are somehow better (or worse) BAs. To me, they are most impressive and admirable, given the totality and complete command of the science of behavior analysis they possess. However, this is not my experience as a behavior analyst and, to be honest, I have never conducted one minute of discrete trial training. My experience? Here are a few examples from a Tuesday morning in September.

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“Ley, do you need to write in behavior programs that the residents can’t carry guns?” After several seconds of audibly laughing and then returning to reviewing a behavior graph, I noticed an awkward silence. This was a question awaiting a response.

“We need to remember the psychiatrist will treat the person, not the level” was my response to an astute direct support professional (DSP) who was inquiring about blood work for a person taking valproic acid who was “tearing the joint down.” This gem of information came from sitting in countless interdisciplinary team meetings led by psychiatrists.

“I told the doctor what you said and tried to show him what you wrote.

They said they don’t believe any of that, didn’t order anything, and said it is behavioral. We spent 45 minutes

in the waiting room and 2 minutes in the back.” The only thing missing from this nursing report was mention of the exasperated tone and dismissive eye roll from the doctor. You know the one! What I had prepared was a half-page psychobehavioral summary, along with behavioral data, to illustrate a possible correlation between unintentional weight loss, decrease in appetite, periodic abdominal selfabuse and H-pylori. The information and data were textbook – if one existed about the behavioral presentations of undiagnosed medical conditions in people with ID/RD. This was diagnostic overshadowing and, these days, is an intoxicating fight always worth having.

You may be thinking, “this guy cherry-picked three anecdotes from the last six months to illustrate his

point and grab my attention. Also, For example, if Jane has a history why is he telling me this?” Regarding of urinary tract infections (UTI), a BA the former, you are not wrong, but can identify and incorporate into the these three issues arose in a 90-minute behavior program her individualized period during a routine site visit in UTI symptoms. Through this, the BA September 2022. To answer the latter, can then educate staff/caregivers of because the most common question I what Jane’s UTI symptoms are likely hear is, “You say you’re a behavior an- to be and, if observed, could advise to alyst, but what do you actually do?!” consult a medical professional, present What we are trained to do and what the symptoms (which are likely acute we “produce” are behavior assessonset behaviors!) in the context of ments and behavior programs, tabulate her medical history, and perhaps a and analyze data, write progress notes, urinalysis is completed to rule out a and ensure fidelity of plan implemenUTI. A non-invasive, relatively quick tation. Peel back a layer and you will diagnostic procedure can resolve an find we are educators, as we train staff acute, treatable medical condition, and caregivers on the “how and why” of behavioral presentations, which is done within the I hear, “You say you’re a framework of the evidenced-based behavior analyst, but what do field of applied you actually do?!” What if I said behavior analysis.

Also, we write – a a BA examines a lot. For a profesperson’s behavior with the sion fundamentally rooted in interact- notion “everything is possible”? ing with people, I spend a shocking amount of time while avoiding consult with a psychiaalone, in front of a computer, typing. trist because the (possible) behavioral Admittedly, this is not a particularly characteristics of the untreated UTI enchanting and engaging description were cognitive changes and increased of a behavior analyst. Perhaps the problem behaviors. Additionally, and question is not “what does a behavior perhaps most importantly, the BA analyst do?”, but rather “what makes could help Jane recognize her UTI a behavior analyst?” This question symptoms and teach her to commuwould best be answered by discussing nicate she is experiencing discomfort the approach of a BA. What if I said a and needs assistance. This is what BA examines a person’s behavior with makes a behavior analyst. the notion “everything is possible”?

Are we medical doctors? Most of Thus, eliminating the constructs of us, no. Are we nurses? SLPs, OTs, the setting event-antecedent-behavPTs, pharmacists? Probably not. The ior-consequence model that inherently majority of us are simply behavior limits the scope and reach of effective analysts. What makes us BAs, beyond behavior analysis. Sure, most any BA credentials, is our willingness to be can tell you a medical condition is a inclusive of all disciplines by recogsetting event (and/or antecedent) and nizing their necessity in helping us say, “make sure you always think med- be more robust and complete analysts ical first!” However, what “makes us” of behavior. In the aforementioned is what lies beyond the identification example, it is not enough for BAs to of the components of behavior. identify the setting event and pass the

“

medical issue off to a nurse or primary care physician. It is critical for BAs to have a working knowledge of how the treatment strategies and approaches to care of other disciplines impact the lives of the people we serve. Additionally, by incorporating the strategies and expertise of other disciplines into our assessments, programs, and own approach to care, we can increase the desired and positive outcomes of the people we serve. This is what makes a behavior analyst.

I have pondered what being a behavior analyst means to a DSP, other professional disciplines, or to persons who do not work in the ID/RD human services field. The answer, I have come to realize, differs dramatically depending on why a person may have an interaction with a BA. My belief, as a BA, is we have a responsibility to not tell people what we do, but to explain what makes us behavior analysts. For me, this means telling people that a behavior analyst has the ability to examine all behavior (not just maladaptive or aberrant) by incorporating the totality of a person, in an inclusive, interdisciplinary fashion focusing on the individual needs of the person, which is what makes a behavior analyst.

Ley Linder, MA, M.Ed, BCBA is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC.

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I

>>WHY DO WE SLEEP?

By Beth Malow, MD, MS and Althea A. Shelton, MD, MPH

n this article, we will delve into the possible functions of sleep, and why we sleep. Along the way, we will bring in the history of sleep, including Shakespeare, Proverbs, and Philosophers. We will focus, not only on what clinical sleep experts consider to be sleep’s functions, but humanists as well. Why we sleep remains a mystery, although there are myriad benefits of sleep on our health and well-being.

Let’s start with why we sleep. The short answer – we don’t know! There have been several theories put forth, however.

The first is the Inactivity Theory: animals that can stay still and quiet are less apt to be targets for predators. So, we have evolved to be still at night and quiet. Although one would think being awake, still, and quiet would be better when dealing with tigers and other predators.

In fact, some animals sleep with one half of their brain at a time, such as dolphins, so they can still be awake to ward off predators. So, the Inactivity Theory has fallen out of favor.

The second theory to consider for why we sleep is the Energy Theory. In a setting where food is limited and 18 | HELEN • helenjournal.org

needs to be searched for, sleep allows us to reduce our demand for energy, especially when it is harder to search for food, such as at night. However, as any of us who have gotten the munchies at 2 am know, this theory may not relate to modern times.

However, since antiquity, sleep has captivated the imaginations of ancient healers, scribes, poets, philosophers and scientists, as evidenced by mythologies, books, plays and art.1 The ancient Egyptians, as far back as 4000 B.C., used sleep as therapy, and had treatment for sleep disorders, such as insomnia. The medicine of ancient Egypt is one of the oldest documented scientific disciplines. The Egyptians were the first to mention the use of opium for the treatment of insomnia. Egyptian medical writings stated that thyme was beneficial in reducing snoring. They also investigated the nature of sleep and dreaming and interpreted dreams using “dream books.” 2

The Ancient Greeks and Romans furthered dream interpretation but in addition, their philosophers and physicians stepped away from the mystical and began to postulate on how sleep and the human body functioned together. The Greco-Roman time period is where you first find documentation of accounts of sleep and dreaming based on reason, rather than mystical knowledge.3 Circa 450 BC, Alcmaeon provided the first reason-based theory of sleep. He believed that lack of circulation (blood carrying veins) to the brain caused sleep, a spell of unconsciousness. Following him, there were multiple other philosophers with non-mystical theories of the process of sleep. However, Aristotle is the first of the Greek philosophers to provide the most comprehensive, written, reason-based account of sleep and dreaming. He wrote three full essays on the subject.4 Aristotle believed the process of sleep commenced with the consumption of food which thickened and

>>

Shakespeare writes, “Sleep that knits up the ravell’d sleave of care, The death of each day’s life, sore labour’s bath, Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast.” He is exhorting the restorative nature of sleep.

Which leads us to discuss our favorite theory of “why we sleep,” the Restorative Theory: Sleep “restores” and repairs what is lost in the body when we are awake. Think of sleep as a reset button, similar to restarting our computers so they work better. This “It is a common experience that a restoration can for both problem difficult at night is resolved occur physical and in the morning after the committee mental conditions. For of sleep has worked on it.” example, one theory of how - John Steinbeck sleep prevents Alzheimer’s disease stems from sleep getting rid of disturbance was something to take waste products that accumulate in our note of and use in the diagnosis and brains overnight, as described below. prognosis of disease. In Regimen in We also feel less stressed and more Acute Diseases, he offers advice for rejuvenated – ready to take on the day insomnia, “if sleep should not come, a slow prolonged stroll, with no stops, – once we have slept.

To summarize, while WHY we should be taken.” Throughout his multiple texts he discussed the importance sleep is still a mystery, the importance of sleep has become clear. In future of sleep and even prescribed sleep as a treatment for a variety of conditions, articles, we will dive more into how sleep is affected by genes and other along with diet and exercise.6 In our ever-divided world, we agree factors, and what you can do to make sure you get your best night’s sleep. on a few things, but most people would agree that sleep is important.

This article is included in the upcomOver one-third of adults in the Uniting monograph “Sleep and Sleep ed States report insufficient sleep.

However, often, sleep is the first thing Disorders in People with Disabilities” published by HELEN: The Journal of that gets sacrificed in order to accomHuman Exceptionality. plish all our obligations. In Macbeth, heated the blood. The food, which he termed “solid matter” would then rise to the head where it was cooled by the brain, and the subsequent reverse flow back downward caused a “seizure” in the heart which caused sleep. Wakefulness occurred when digestion was completed with a separation between the “solid matter” and more pure blood. He also rightly believed that sleep kept living beings alive.5 Hippocrates, the most famous physician in Western civilization, wrote that sleep

Dr. Althea Shelton’s research and clinical practice is focused on sleep disorders in children and adolescents with neurodevelopmental disorders.

Dr. Beth Malow’s research and clinical practice is focused on sleep in autism across the lifespan, including treatments with behavioral approaches and medications. helenjournal.org • HELEN | 19

Perchance to Dream: The Impact of a Good Night’s Sleep on Health and Daytime Functioning We cannot overstate the importance of sleep. Getting enough sleep makes it easier to prevent and manage disease. Too little sleep and poor sleep quality have been associated with severe health outcomes. So, let us briefly delve into some of these health outcomes. In future articles, we will discuss these more in depth.

>>

>>

Cardiovascular Disease

Poor sleep, and chronic sleep loss, have been linked to heart disease13 and high blood pressure.6 Not sleeping enough hours increased a person’s chances of high blood pressure by 20%.14

Type 2 Diabetes

Type 2 diabetes has become an increasingly common chronic condition in the United States.

Not getting enough sleep results in a 33% incrveased risk of developing diabetes.14 When people sleep too few hours, they are more likely to eat unhealthy foods.6

>> Seizures Seizures are common in some intellectual and developmental disabilities (IDD), such as autism spectrum disorder and Down syndrome, and are more common in those with more severe forms of IDD.11 Seizures have a reciprocal relationship with sleep, with disrupted sleep making seizures more likely. In turn, seizures can disrupt sleep. Treating sleep problems can improve seizure control.12

>> Attention & Memory

As sleep neurologists, problems with memory and focusing are something that we often see, and we work with psychologists to help diagnose these problems.

Paying attention is one of the most studied problems.7 The fewer hours that we sleep, the more lapses in attention we have. In addition, research shows that short sleep duration causes problems with our memory, decision making, and processing speed.8 Poor sleep is linked to the buildup in the brain of a chemical called beta amyloid, which results in Alzheimer’s disease.9 Beta-amyloid buildup also occurs in Down syndrome, and has been connected with Alzheimer’s disease symptoms as individuals with Down syndrome age.10

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>> Mood Sleep and mood have a reciprocal relationship. Mood disorders, such as anxiety, can often make sleep worse, but chronic sleep loss can also worsen mood.

Shortened sleep can make depression less likely.16 In children with developmental disabilities, like autism spectrum disorder, sleeping less can go along with depression and obsessive-compulsive disorder.17 The promising news is that it’s possible that depression symptoms may improve with sleeping more.18

>> Weight Gain

Weight gain, including obesity, often results when people are not getting enough sleep, especially young adults.15 With chronic sleep loss, there are changes in leptin and ghrelin which are two hormones that regulate how hungry or satisfied we feel after we have eaten. On the bright side, getting more sleep can help with weight loss.6

>>

Getting enough sleep makes it easier to prevent and manage disease.

REFERENCES 1. Borbely A. (1984). Secrets of sleep. New York: Basic Books.

2. Asaad T. (2015) Sleep in Ancient Egypt. In: Chokroverty S., Billiard M. (eds.) Sleep Medicine. Springer, New York, NY. 3. Barbera J. (2008). Sleep and dreaming in Greek and Roman philosophy. Sleep Med.;9(8):906–10.

4. Gallop D. (1996) Aristotle on sleep and dreams. Warminster: Aris and Phillips.

5. Barbera J. (2015) The Greco-Roman Period. In: Chokroverty S., Billiard M. (eds.) Sleep Medicine. Springer, New York, NY. 6. Grandner MA. (2017) Sleep, Health, and Society. Sleep Med Clin.; 12(1):1-22.

7. Goel N, Rao H, Durmer JS, et al. (2009) Neurocognitive consequences of sleep deprivation. Semin Neurol ;29(4):320–39.

8. Winer JR, Mander BA, Kumar S, Reed M, Baker SL, Jagust WJ, Walker MP. (2020). Sleep Disturbance Forecasts β-Amyloid Accumulation across Subsequent Years. Curr Biol. 2;30(21):4291-4298.

9. Carmona-Iragui M, Videla L, Lleó A, Fortea J. (2019). Down syndrome, Alzheimer disease, and cerebral amyloid angiopathy: The complex triangle of brain amyloidosis. Dev Neurobiol. 79(7):716-737.

10. Devinsky, O., Asato, M., Camfield, P., Geller, E., Kanner, A. M., Keller, S., Kerr, M., Kossoff, E. H., Lau, H., Kothare, S., Singh, B. K., & Wirrell, E. (2015). Delivery of epilepsy care to adults with intellectual and developmental disabilities. Neurology, 85(17), 1512–1521.

11. Malow BA. Sleep, epilepsy, and autism. (2004). Mental Retardation and Developmental Disabilities Research Reviews 10: 122–125.

12. Amagai Y, Ishikawa S, Gotoh T, et al. (2010). Sleep duration and incidence of cardiovascular events in a Japanese population: the Jichi Medical School cohort study. J Epidemiol.;20(2):106-10.

13. Meng L, Zheng Y, Hui R. (2013) The relationship of sleep duration and insomnia to risk of hypertension incidence: a meta-analysis of prospective cohort studies. Hypertens Res. 36(11):985-95.

14. Shan Z, Ma H, Xie M, et al. (2015) Sleep duration and risk of type 2 diabetes: a meta-analysis of prospective studies. Diabetes Care 38(3):529–37.

15. Grandner MA, Chakravorty S, Perlis ML, et al. (2014). Habitual sleep duration associated with self-reported and objectively determined cardiometabolic risk factors. Sleep Med 15(1):42–50.

16. Liu X (2004). Sleep and adolescent suicidal behavior. Sleep.

27(7:1351–135.

17. Veatch et al. (2017). Shorter sleep duration is associated with social impairment and comorbidities in ASD. Autism Research. 10(7):12211238.

18. Dewald-Kaufmann et al. (2014). The effects of sleep extension and sleep hygiene advice on sleep and depressive symptoms in adolescents: a randomized controlled trial. J Child Psychol Psychiatry. 55(3):273– 283.

helenjournal.org • HELEN | 21

Why is Disability Competency Important?

SYSTEMIC CHANGE IS REQUIRED!

By Barrie Cohen & Chandra Hinton

T

he Chanda Center for Health has been a staple in the Denver community for the last 17 years. The Center provides integrative therapies and other complementary services to improve health outcomes and reduce health care costs for people with long-term physical disabilities, such as spinal cord injuries, brain injuries, cerebral palsy, multiple sclerosis, and spina bifida.

In February 2022, the Chanda Center partnered with the Colorado Academy of Family Physicians to develop a new AAFP-accredited online course designed to fill the knowledge gap for health care providers. The course, “Disability-Competence Curriculum for Healthcare Providers,” funded by the Colorado Health Foundation and developed with many stakeholders in 2020, was designed to provide an indepth look at ways individual health

22 | HELEN • helenjournal.org

care professionals, their medical teams, and administrative staff can better serve individuals with disabilities as members within the system of care.

In addition to providing integrative services at The Center, founder Chanda Hinton has been advocating for her community and successfully getting Medicaid to cover acupuncture, massage, and chiropractic care to bring preventative methods for individuals with disabilities to the forefront.

However, the fight is long from over.

Though some positive change has happened to benefit those with physical disabilities, there is still a stigma around equitable health care for this population, and why it’s important.

And that needs to change. Chanda and the Center are actively working to effect change through education, but more importantly on a systematic level to truly make an impact.

What does it mean to be disability competent?

In the world of health care, physicians and support staff are required by law (below) to be disability competent. But many health care providers are unaware of what this means exactly and, more important, why it’s necessary. Individuals with physical disabilities are entitled to independently access health care from the parking lot with designated signage, to accessible entrances, and a receptionist that is educated about a patient’s accommodations. Factors that health care providers are required to offer in order to be considered “disability competent” are proper equipment and training, communication skills, accessibility, and more.

To be disability competent, its starts by practices knowing what disability competence means, has actively made adjustments, and can show the

W improvements, which demonstrates their understanding around the needs of the community. And while the need for equitable health care grows, so does the health disparity of patients with long-term physical disabilities because of the lack of compliance.

Why is disability competency important?

Persons with disabilities are considered a health disparity group, in that they are subject to avoidable inequities in access, and in the quality of, health services. While concerns around transportation, communication, and insurance are contributing factors, the knowledge gap amongst physicians in serving individuals with disabilities is the primary contributor to this inequity. In 2009, a report by the National Council on Disability noted “the absence of professional training on disability competency issues for health practitioners is one of the most significant barriers to preventing people with disabilities from receiving appropriate and effective health care.”

MEET CHANDA

hen you look into the face of Chanda Hinton, you see vitality and radiant health; you see a young woman with passion and determination; you see a person of strength and purpose. If you glance down from her face, you will see her wheelchair, and you realize that the goals of the nonprofit organization she founded 17 years ago.

You will see that her role is rooted in her own personal story.

Chanda is the Executive Director of the Chanda Center for Health and Chanda Plan Foundation (https://chandacenter. org/who-we-are/), which provides access to holistic, collaborative, access and disability competent healthcare programs to individuals with physical disabilities. In 2009, she led the movement to pass Colorado House Bill 1047, which created the Spinal Cord Injury (SCI) Waiver, offering acupuncture, massage, and chiropractic care through Medicaid to evaluate cost-effectiveness and improve quality of life for persons with spinal cord injuries in the Denver metro area. In 2021, she expanded these services legislatively to other diagnosis and to be a statewide benefit.

In addition to her work (passion), Chanda presents extensively to diverse audiences about wellness and disability.

Her previous honors include the 2008 Unsung Hero Award from Mayor Hickenlooper in honor of Denver’s 150th anniversary, 2010 Health & Wellness Award from the Commission for People with Disabilities, 2015 Kathy Vincent award from the Colorado Cross Disability Coalition, 2015 Diversity Award from Mayor Hancock, 2017 Denver Business Journal 2017 40 under 40 honoree, 2019 Linda Andre Lifetime Trailblazer Award from the Colorado Fund for People with Disabilities and 2019 AMTA National Government Relations Activist Award, Colorado Women’s Chamber 2020 Top 25 Powerful Women helenjournal.org • HELEN | 23

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24 | HELEN • helenjournal.org

In 2022, individuals with disabilities are still facing barriers that prevent access to quality and equitable healthcare.

As The Chanda Center for Health set out to share their new curriculum with health care providers, the same dead ends individuals with disabilities advocated for a quarter of a century ago, continue to be dismissed, even now.

Feedback from physicians has varied.

Some express not knowing where or not having access to curriculum, in order to comply. One of the reasons behind the creation of the curriculum. Some have completed dismissed the issue and shared responses such as “why does health care need to adjust for this community,” “I don’t have patients who are disabled,” and “why should I care?” Some health care clinics going as far as turning down free education and possible funding for equipment needed to serve people with disabilities. Based on this feedback, Chanda has shifted her focus to systematic change and addressing the issues that continue to create barriers.

How did we get here?

Disability competency is currently not, nor has been a core curriculum requirement for academia or continued education for practicing health care professionals. Health care professionals are serving the health care needs of humanity every day with little to no understanding of the structural, or cultural needs of persons with disabilities. People with disabilities are humans too, and yes…

• There is the Americans with Disabilities Act (ADA), a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including employment, schools, transportation, and all public and private places that are open to the public.

• There is Section 510 of the Rehabilitation Act, which includes a provision to amend the original Rehabilitation Act to “address access to medical diagnostic equipment, including examination tables and chairs, weight scales, x-ray machines and other radiological equipment, and mammography equipment... The standards are to address independent access

to, and use of, equipment by people exactly what it is. experience in some capacity. That time with disabilities to the maximum ex• Increased enforcement on guidwill come, so advocate for your own tent possible.” ance and penalized when not in comhealth care now. If you are a provider • OSAH has reported that one major pliance. Just like compliance in other that doesn’t want to wait for these source of injury to health care workers areas, when audited, they will know system changes, reach out so that is musculoskeletal disorders (MSDs). exactly what is being evaluated. With we can help you. If you’re a lobbyist In 2017, nursing assistants had the continued failure to comply, there is on the federal level and want to help second-highest number of cases of no record and no penalizations. make this right, please reach out! If MSDs, with an incidence rate more • Increased reimbursement for you’re an employer of any national than five times the average for all inservice to LTSS. In a recent New York advocate organization or government dustries because of proper equipment Times article, physicians expressed entity working on this issue, please not being available to perform health what limited time they have with reach out! care to those with disabilities. patients. And providers in our own Advocates and lawmakers have made Barrie Cohen founddisability competency ed BCPR on three required by law, but principles: creativity, to date, and despite Regardless of our age, color of our customization, and “breaking the law,” After some of the largest skin or sexual orientation, we all will collaboration. years of working for health care delivery experience disability at some level, agencies in Philadelmethods and faciliOwner and CEO ties do not offer true whether it be temporary and severe, phia, Barrie Cohen saw the disability competent it will be something that you person- overwhelming need for care. Although realisa more attentive public tically, who can blame ally experience in some capacity. relations firm dedicatthem? There is no state ed to supporting and or federal body that ofstrengthening a client’s business goals. ficially assesses and enforces them to community shared that the complexity Unlike larger firms, Barrie has the demonstrate their disability competen- and paperwork that accompanies this ability to work one-on-one with clients cy. So, as a health care community, we population is not billable. With the to not only provide unprecedented, will continue to reinforce to our health system set up with these barriers for personalized services but to create care professionals that skirting the law the providers, it only has one place to a comfortable and trusting working is okay because there is no enforcetrickle down… patients with disabilirelationship. ment, which comes at the disparity of ties who need healthcare. those with disabilities.

The Chanda Center for health will Always keeping the clients’ best be advocating locally with potential interest in mind, Barrie utilizes her How can we make change happen? legislation to make changes in their long-standing media relationships, The creation of the “Disabilibackyard, but of course this issue is innovative marketing strategies, and ty-Competence Curriculum for far more expansive and those inprofessional writing skills to successHealthcare Providers” course is just volved want to ensure that this is fully promote and position clients in a one component aimed at reducing being addressed on the federal level. variety of industries across the counhealth disparities for individuals With conversations with the Office of try—and internationally. Her passion with disabilities. However true Civil Rights Diversity and Inclusion change needs to start with systematic at HRSA, and the U.S. Justice Depart- for positive publicity and storytelling has created countless opportunities for change—to ensure that physicians ment, there is hope for change. her clients. are meeting expectations and, more Let’s stop this from happening, important, patients are receiving the together. After all, there is no one health care they are entitled to, there individual that is immune to disability.

REFERENCES needs to be: Regardless of our age, color of our 1. Gloria L. Krahn, Deborah Klein Walker, and • Improved guidance on what is skin or sexual orientation, we all will Rosaly Correa-De-Araujo, 2015. Persons With Disabilities as an Unrecognized Health Disdetermined as disability competent experience disability at some level, parity Population, American Journal of Public care outside what is currently in law. whether it be temporary and severe, it Health 105, S198_S206.

Health care providers should know will be something that you personally

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Impact of the Dobbs Decision on Prenatal Disability Education and Support

By Stephanie Meredith, MA, Kara Ayers, PhD, Marsha Michie, PhD, Mark W. Leach, JD, MA, and Robert D. Dinerstein, JD

26 | HELEN • helenjournal.org

M

likely to perpetuate stereotypes about any high-profile articles Patient Education: We have known disabilities, ranging between evangeover the past 15 years, for years that many patients say their lizing and catastrophizing disability including Sarah Zhang’s informational and support needs are to score political points.3 - Stephanie recent Atlantic article, not adequately met after receiving Meredith, MA, Director of the Nation“The Last Children of Down Synprenatal screening results suggesting 1 al Center for Prenatal and Postnatal drome” in 2020, have considered the a possible diagnosis. Further, many Resources at the University of Kenethical implications of prenatal testing of these patients experience lasting tucky’s Human Development Institute leading to the potential eradication trauma based on how the information of people with prenatally-diagnosed is presented—particularly when they Disability Studies: The United States conditions. The theory was that if perceive bias against people with of America has a dark past and present the information were presented in a disabilities.2 One concern following biased manner regarding a historically the Dobbs decision is that in states that in oppressing the reproductive rights and freedoms of people with disabilimarginalized population, the outcome limit reproductive rights, lawmakers could lead to de facto eugenics. Some will need to urgently prioritize funding ties. According to a recent report from the National Women’s Law Center, of the more nuanced arguments weav- the provision of support and informa31 states and the District of ing together reproductive Columbia have laws that choice and disability rights allow forced sterilization. asserted the following: Like abortion restrictions, • Patients undergoing prethese laws assume that other natal testing should have people, often parents, guardthe opportunity to make The Dobbs decision weakened reproductive decisions constitutional protections for ians, and government officials, are better equipped to that reflect their own people with disabilities to lead make decisions for disabled values as was guar4 people than the people with anteed under the law self-determined lives. disabilities themselves. The during the era of Roe Dobbs decision weakened v. Wade and Planned constitutional protections Parenthood v. Casey. for people with disabilities to lead • Those decisions should be based tion right away for families who learn self-determined lives.4 The decision on accurate, up-to-date inforof a possible prenatal diagnosis to has resulted in further devaluing of mation about those conditions make sure the baby and family have disabled lives as seen in a Declaration since many preconceptions about optimal health and life outcomes. Imdisability are broadly based on portantly, the need for lifespan support of Emergency by Louisiana Department of Health, which describes stigma and outdated stereotypes. will be even more critical for families infants born with certain disabilities • Medical providers should present who may be in financial or situational as “medically futile.” While medical the information free from bias. distress and who no longer have the futility is considered an absolute, the So, how could this new era under option of terminating the pregnancy. literature includes documented cases the Dobbs v. Jackson Women’s Health Another concern is that clinicians in of survival for most of the conditions Organization decision, with its accom- states that protect reproductive rights listed in the emergency rule.5 The terpanying patchwork of reproductive will over-emphasize the option of mination of pregnancies where a fetus laws across a divided nation, affect termination in an effort to convey the is thought to have these disabilities is these complex ethical arguments and availability of options, but patients not considered an abortion in Louisithe patients who receive the results of have also said that repeated offers ana and its emergency rule is described the prenatal tests? Five experts from of termination traumatize them and as “necessary to prevent imminent different disciplines—legal, bioethconvey bias when they are planning 2 ics, patient education, and disability to continue the pregnancy. Moreover, peril to public health, safety, and welfare.” Parents who learn their child studies—share their thoughts moving in states where the constituency is forward. divided, lawmakers and the media are has or may have one of the diagnoses

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helenjournal.org • HELEN | 27

on Louisiana’s list will face an even more challenging path to receive accurate information or pursue treatment.

Rather than rectifying our history of eugenics, the Dobbs decision and other restrictions on reproductive freedoms only further marginalize people with disabilities and their right to bodily autonomy. - Kara Ayers, PhD, Associate Professor and Associate Director, University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD), Cincinnati Children’s Hospital Medical Center, Division of Developmental and Behavioral Pediatrics Bioethics: One particular challenge of prenatal disability education and support is its short time frame to make major decisions about pregnancy continuation, interventions (as available), and health care.

This time crunch leaves little space for taking in the results of prenatal testing and learning about genetic conditions.

Making informed decisions about health and health care means getting clarity about the facts of the situation and your values about the options, and then reconciling these.6 Many pregnant people know very little about disability, and many health care providers harbor the kinds of implicit bias against disability that are common throughout society.7 This situation makes it crucial to have opportunities for human connection and thoughtful deliberation, such as meeting other families in similar situations and considering what life might be like. But people who feel pushed to make a decision quickly are less likely to have these opportunities.

In addition, no amount of information and resources can support informed choices if pregnancy is not a choice

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at all. Research shows that for people who seek abortion care, being forced to continue the pregnancy results in worse pregnancy and life outcomes for them and their children.8 Finally, one very hopeful development of the past

out of respect for the patient’s autonomy. For a patient to exercise control over her health, testing provides medically relevant information. Leaping from this premise, the principle of justice is cited as requiring the availabil-

“

Many pregnant people know very little about disability, and many health care providers harbor the kinds of implicit bias against disability that are common throughout society.7

few decades has been a steady increase in treatments that can take place during pregnancy to improve outcomes for babies and children. Pregnancy interventions like these, when they are available for certain conditions, are one of the strongest possible benefits of a prenatal diagnosis. But an increase in abortion limits and bans will have a chilling effect on research and experimental treatments, ultimately harming families by limiting the access to these interventions in many states. - Marsha Michie, PhD, Associate Professor of Bioethics, Department of Bioethics at Case Western Reserve University School of Medicine Bioethics: Prenatal genetic testing has been argued to be ethically obligatory

ity of testing for all, not just for those with means. The result is subsidization of testing by private and public insurers. Post-Dobbs, the provision of testing creates a “moral hazard”: providing information that cannot be acted upon, at least not without travel to another state.

Additionally, surveys of patients’ experiences with prenatal genetic testing overwhelmingly conclude it does not respect their autonomy for failing to provide proper counseling, understanding of the testing, and provision of equally-recommended relevant information about the tested-for condition and available supports for individuals with those conditions.9 Therefore, if the main justification has not been achieved despite decades of

r

practice, the justice argument should be to not subsidize prenatal genetic testing, since it does not empower the patient’s autonomy, and thereby avoid the moral hazard.

In practice, the most justified course is if prenatal testing is subsidized, then so must the other recommended condition-specific information so as to provide the best chance of respecting the patient’s autonomy. - Mark W. Leach, JD, MA (Bioethics) Legal: That Dobbs will result in fewer reproductive choices for pregnant people, including people with disabilities, is clear. Historically, some people with disabilities were forced to have abortions because of a belief that their child would have a disability or that, even if the child were born without a disability, the disabled parent would not be able to care for the child. As is true for people without disabilities, some people will want abortions, and some will not. However, for some pregnant people with disabilities, carrying a fetus to term may put their own health at risk.10 In states that adopt laws that do not provide an exception to an abortion ban to preserve the health of the mother, a full-term pregnancy can have dire consequences for them.

Women with disabilities are much more likely to be the victims of violence, including sexual violence, than women without disabilities.11 If the disabled woman becomes pregnant because of rape, she may be forced to bear the child that is the result of that rape in states that do not provide for a rape exception to an abortion ban. In some rare cases, the severely disabled woman who has been impregnated may have little understanding of the gestational and birth process—and may be traumatized by having to experience changes in her body that she does not understand. - Robert D. Dinerstein, JD, Professor of Law and Director, Disability Rights Law Clinic, American University Washington College of Law (for identification purposes only) To address these additional complications, possible solutions proposed by medical professionals, bioethicists, and disability advocates include the following: 1. Fully fund The Prenatally and Postnatally Diagnosed Awareness Act to ensure that patients get the support and information they need following a diagnosis. 2. Fully fund Medicaid waiting lists and disability services in their states to care for the families in need who will inevitably be having more children with disabilities. If states are going to require patients to continue a pregnancy, then they must also have the social safety nets in place to support families of children with disabilities to truly preserve the lives and welfare of those children. 3. Replace laws that allow forced sterilization of people with disabilities with policies that support bodily

autonomy and are directly informed by the voices of people with disabilities. 4. Mandate the training of health professionals in all states to ensure that information about disabilities is presented without conscious or unconscious bias.12

REFERENCES 1. Nelson Goff BS, Springer N, Foote LC, et al. Receiving the Initial Down Syndrome Diagnosis: A Comparison of Prenatal and Postnatal Parent Group Experiences. Intellect Dev Disabil. 2013;51(6):446-457. doi:10.1352/1934-9556-51.6.446 2. May CP, Dein A, Ford J. New insights into the formation and duration of flashbulb memories: Evidence from medical diagnosis memories.

Appl Cogn Psychol. 2020;34(5):1154-1165. doi:10.1002/acp.3704 3. Reardon S. Genetic Screening Results Just Got Harder to Handle Under New Abortion Rules. Kaiser Health News. Published June 27, 2022.

Accessed August 25, 2022. https://khn.org/news/article/genetic-screening-results-just-got-harder-to-handle-under-new-abortion-rules/ 4. ASAN, et al. Memorandum: Dobbs v. Jackson Women’s Health Organization and Its Implications for Reproductive, Civil, and Disability Rights. :10.

5. Wilkinson D, de Crespigny L, Xafis V. Corrigendum to “Ethical language and decision-making for prenatally diagnosed lethal malformations” [Semin Fetal Neonatal Med 19 (5) (2014) 306-311]. Semin Fetal Neonatal Med. 2015;20(1):64. doi:10.1016/j.siny.2014.10.007 6. Petrova M, Dale J, Fulford BKWM. Values-based practice in primary care: easing the tensions between individual values, ethical principles and best evidence. Br J Gen Pract J R Coll Gen Pract. 2006;56(530):703709.

7. Iezzoni LI, Rao SR, Ressalam J, et al. Physicians’ Perceptions Of People With Disability And Their Health Care: Study reports the results of a survey of physicians’ perceptions of people with disability. Health Aff (Millwood). 2021;40(2):297-306. doi:10.1377/hlthaff.2020.01452 8. Coleman S. Abortion, Science, and Morality in the Turnaway Study : New Perspectives for the Helping Professions: The Turnaway Study: Ten Years, a Thousand Women, and the Consequences of Having–or Being Denied–an Abortion , by Diana Greene Foster, New York NY, Simon & Schuster/Scribner, 2020, 360 pp. Hardback, $27.00, ISBN 9781982141561; Paperback $18.00, ISBN-13 978982141578. J Progress Hum Serv. 2022;33(1):96-105. doi:10.1080/10428232.2022.2037821 9. Bryant AS, Norton ME, Nakagawa S, et al. Variation in Women’s Understanding of Prenatal Testing. Obstet Gynecol. 2015;125(6):13061312. doi:10.1097/AOG.0000000000000843 10. Rajkumar S. With Roe v. Wade overturned, disabled people reflect on how it will impact them. NPR. https://www.npr. org/2022/06/25/1107151162/abortion-roe-v-wade-overturned-disabledpeople-reflect-how-it-will-impact-them. Published June 25, 2022.

Accessed November 17, 2022.

11. Shapiro J. The Sexual Assault Epidemic No One Talks About. NPR. https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemicno-one-talks-about. Published January 8, 2018. Accessed November 17, 2022.

12. Meredith S. Prenatal Disability Education Summit Full Report – The Prenatal Disability Education Summit. In: University of Kentucky Human Development Institute; 2022. Accessed September 20, 2022. https://prenatalsummit.lettercase.org/prenatal-disability-education-summit-full-report/

helenjournal.org • HELEN | 29

ilitie sab Di

s

Compa rin g

s of Peopl n o i ew it d it on

h

C

AADMD

IN THREE LARGE COUNTRIES AND THE U.S.

By H. Barry Waldman, DDS, MPH, PhD, Rick Rader, MD, FAAIDD, FAADM, Steven P. Perlman, DDS, MScD, DHL (Hon), Allen Wong, DDS, EdD, DABSCD “Disabled people are estimated at 10 percent of the general African population, but possibly as high as 20 percent in the poorer regions. (For example) the vast majority of Africans with disabilities are excluded from schools and opportunities to work, virtually guaranteeing that they will live out their lives as the poorest of the poor. School enrollment for the disabled is estimated at no more than 5-10 percent. For many, begging becomes a sole means of survival.”3

A

ccording to an estimate by the WHO, 15 percent of the world’s population live with some form of disability, with over 80 percent of them living in Low and Middle-Income Countries.4 All too often we view these mega numbers as “just numbers,” not individuals with disabilities who live their lives under conditions far different than those experienced by the general population in our country. How people with disabilities in large countries are treated provides an opportunity to compare the efforts in our nation to ensure services, for the young and not-so-young people with disabilities in our communities.

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CHINA China is home to the world’s largest number of people with disabilities.

There are 83 million people with disabilities in China, with a million in Beijing alone.

• 60 percent are illiterate.

• 40 percent are unemployed and nearly half cannot find a spouse.

• There are only 250 schools for children with disabilities having a total enrollment of only 100,000 students.

• There are 4.2 million children with congenital disabilities.

• The average salary of a worker with a disability is less than half of that of a worker who is not disabled.

• Only one-third of people with disabilities who need rehabilitative services have access to it.

• There are around 12 million people who are blind or visually impaired in China. Only about 5 percent of them receive any kind of formal schooling.

• Professionals trained to aid people with disabilities are desperately scarce. Europe has 185 times as many physiotherapists per person as China.

• People with disabilities are routinely denied jobs, driver licenses and places in universities because there aren’t any laws on the books that are supposed to prevent such practices.

• Students with a difference in leg length of more than 5 centimeters or a spinal curve of more than four centimeters are not allowed to major in subjects such as geology, civil engineering, veterinary science, main science or forensic medicine.

• Many Chinese believe that people

with disabilities have received their residents. Over 2.2% of this populacondition as a punishment or are viction (26.8 million individuals) expetims of bad luck or evil spirits.4 rience some form of severe mental or “Still, some indicators are improvphysical disability.6 ing. The number of people with disIn 2011, 26.8 million out of 1.21 abilities receiving low-income benefits billion people in India have or had a jumped to more than seven million in disability, accounting for around 2.21 2008 from fewer percent of the than four million in total population.

2005. Nearly three Among people in four children with disabilities, “Around 15 percent of the with disabilities males comprised world’s population, or a larger share in attended school in 2008, compared estimated 1 billion people, comparison to fewith about three live with disabilities. They males, at respecin five just two tively 54 percent are the world’s largest and 44 percent years earlier. The minority.”2 number of students or 2.41 percent with disabilities of males versus in universities and 2.01 percent of technical colleges in 2008 increased females.7 by 50 percent over 2006. Still, they Women and girls with disabilities amounted to a mere handful, just one are forced into mental hospitals and out of every 5,000 students.”4 institutions where they face unsanitary conditions, and are at risk of physical and sexual violence and experience involuntary treatment. “(They) are placed in institutions by their family members or police because the government fails to provide appropriate support and services.”8 In India, a majority of people with disabilities reside in rural areas where accessibility, availability, and utilization of rehabilitation services are not cost-effectiveness and major issues need to be considered. Research on the burden of disability, appropriate intervention strategies and their implemen“By 2050, 68 percent of the world’s tation to the present context in India is 9 population will live in urban areas, up a big challenge.

In addition, India is also experiencfrom today’s 55 percent. One third of ing a rapid increase in its elderly poputhis increase is projected to happen in lation; about 8% of the overall popujust three countries — China, Nigeria lation were aged 60+ in 2011 and this and India. (emphasis added) Yet, as figure is expected to grow to 11.1% by urban populations grow, a big part of 2025. Over one-third of the country’s society continues to be marginalized population is living below the poverty and excluded — people with disabili5 level In addition, health care quality is ties.” inadequate in poorer regions.10 India is home to over 1.36 billion

“

INDIA

helenjournal.org • HELEN | 31

RUSSIA “Segregation of Persons with Disabilities to the extent that they are not visible in public space is a norm in Russia. The overall attitude towards disability is negative as disability is considered shameful. The culture dates back to the Soviet era. An anecdote regarding the culture of seeing disability as shameful is very popular. A western reporter who asked whether Russia will be participating in the first Paralympic games got a flat reply from the Soviet representative – There are no Invalids in the USSR.” (sic)11 The largest country in the world is Russia with a total area of (6,601,665 square miles) equivalent to 11% of the total world’s landmass.12 In 2021, 11.6 million people were reported to have a disability.13 According to Human Rights Watch, Russian orphanages, where many children with disabilities grow up, often transition them to state institutions for adults when they reach 18 without their consent. Those who do move into the community often do not receive the support they need to live independently.14 But things were changing by the 1990s with the collapse of the Soviet Union. “For the most part, people with disabilities (were) no longer hidden in Russia. They have become more visible, face less stigma, get a better education, go to public events more frequently, speak out on social media,

32 | HELEN • helenjournal.org

and are generally becoming active participants in society. But we are still fighting negative attitudes, myths, and a lack of sufficient services.”15 “ Nevertheless, beyond Moscow: people with disabilities are stepping out.

Progress is being driven by a few committed activists.”16

UNITED STATES

education services under the Individuals with Disabilities Education Act (IDEA) was 7.2 million, or 15 percent of all public school students. Among students receiving special education services, the most common category of disability was specific learning disabilities (33 percent).18 “The coronavirus pandemic resulted in elementary and secondary school closures in all 50 states and the District of Columbia and has forced a sudden and widespread shift to online learning. This transition has been especially challenging for the nation’s nearly 7 million students with disabilities. Instruction and support for this group of students are not as easily transferred to the internet, and school systems and families are struggling to meet the challenge.”19

Comparisons Numbers, percents and backgrounds tell us there are significant differences in the care of individuals with disAccording to a report by CDC, one abilities in many countries. Historic in 4 U.S. adults have a disability that impacts major life activities. The most backgrounds, varying cultures and religions, as well as finances to provide common disability type, mobility, affects 1 in 7 adults. With age, disability for those needed services are critical factors. becomes more prevMost important are alent, affecting about comparisons in con2 in 5 adults age 65 firming the knowland older. After mobility, the next most “61 million U.S. edge that educational experiences are common disability adults live with needed for success in type is cognition, preparing youngsters followed by independisabilities.” 1 with disabilities to dent living, hearing, fulfill their lives; for vision, and self-care. families to prepare In addition, ongoing and support these efforts; to provide research has shown how many people for the elderly as they fulfill their have a disability and differences in hopes and dreams. their access to health care can guide Comparisons should be used to efforts by health care providers and indicate that one country is better than public health practitioners to improve another; and that other approaches can access.17 be used to attain the desired affects; In 2020-21, the number of stumore efficiently. dents ages 3-21 who received special

“

“

Numbers, percents and backgrounds tell us there are significant differences in the care of individuals with disabilities in many countries.

Historic backgrounds, varying cultures and religions, as well as finances to provide for those needed services are critical factors.

H. Barry Waldman, DDS, MPH, PhD is SUNY Distinguished Teaching Professor Department of General Dentistry, Stony Brook University, NY. Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director, Special Olympics, Special Smiles, Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine; Senior Special Projects Editor of Helen: The Journal of Human Exceptionality.

Rick Rader, MD, FAAIDD, FAADM, DHL (hon) is Director, Habilitation Center, Orange Grove Center; President, American Association on Health and Disability; Member; Board, American Academy of Developmental Medicine and Dentistry; National Medical Advisor, National Alliance for Direct Support Professionals; Board, National Task Group on Intellectual Disabilities and Dementia Practices.

Allen Wong, DDS, EdD, DABSCD is a professor and the director of the Dugoni School of Dentistry AEGD and Hospital Dentistry program in the San Francisco area, and is the Global Clinical Advisor to the Special Olympics Special Smiles. He is past president of the AADMD and Publisher of Helen: The Journal of Human Exceptionality.

REFERENCES 1. CDC. Disability impacts all of us. Available from: https://www. cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all. html 2. United Nations Enable Department of Economic and Social Affairs Disability Factsheet on persons with disabilities. Available from: https://www.un.org/development/desa/disabilities/resources/factsheet-on-persons-with-disabilities.html 3. Disability news: Africa and South Africa – Disabled World. Available from: https://www.disabled-world.com/news/africa 4. Handicapped people in China - facts and details Available from: https://factsanddetails.com/china/cat13/sub83/item1906.html 5. Al Jazeera India’s Mumbai: Living with a disability in the megacity https://www.aljazeera.com/features/2022/3/30/indias-mumbai-living-with-a-disability-in-the-megacity 6. Kanwal S. Disabilities in India - statistics & facts Available from: https://www.statista.com/topics/8278/disabilities-in-india/#topicHeader__wrapper 7. Kanwal S. Total population and population of disabled persons in India in 2011 Available from: https://www.statista.com/statistics/1254086/india-total-population-and-disabled-population/ 8. Human Rights Watch India: women with disabilities locked away and abused. End forced institutionalization, sexual and physical. violence, involuntary treatment. Available from: https://www.hrw.org/ news/2014/12/03/india-women-disabilities-locked-away-and-abused 9. Kumar SG, Roy G et al. Disability and rehabilitation services in India: Issues and challenges J Family Medicine Primary Care. Jan-Jun; 1(1): 69–73, 2012.

10. Mishra RS, Mohanty SK, et al Economic gradient of onset of disability in India. Available from: https://bmcpublichealth.biomedcentral.com/ articles/10.1186/s12889-021-10826-5 11. WeCapable. Disability in Russia: social stigma, denialism and disability laws Available from: https://wecapable.com/disability-in-russia-social-stigma- denialism-disability-laws/ 12. List of countries (and dependencies) ranked by area. Available from: https://www.worldometers.info/geography/largest-countries-in-theworld/ 13. Statista. Number of people with a disability in Russia from 2018 to 2021, by group (in 1,000s) Available from: https://www.statista.com/statistics/1292557/people-with-a-disability-bygroup-russia 14. Human Rights Watch. Russian adults prospects dim for youth with disabilities Available from: https://www.hrw.org/news/2018/12/06/russia-adult-prospects-dim-youth-disabilities 15. Roza D. People with disabilities in Russia, once Invisible, find their voice Available from: https://www.opensocietyfoundations.org/voices/ russia-s-disabled-citizens-once-invisible-find-their-voice 16. Skopich Y. Beyond Moscow: people with disabilities are stepping out. Available from: https://www.themoscowtimes.com/2020/10/27/beyond-moscow-people-with-disabiities-are-stepping-out-a71868 17. CDC: 1 in 4 US adults live with a disability. Available from: https:// www.cdc.gov/media/releases/2018/p0816-disability.html 19. National Center for Education Statistics. Students with disabilities.

Available from: https://nces.ed.gov/programs/coe/indicator/cgg/students-with-disabilities 20. Schaeffer K. As schools shift to online learning amid pandemic, here’s what we know about disabled students in the U.S. Available from: https://www.pewresearch.org/fact-tank/2020/04/23/as-schools-shift-toonline-learning-amid-pandemic-heres-what-we-know-about-disabledstudents-in-the-u-s/

helenjournal.org • HELEN | 33

e h t n Al l i

“You don’t choose your family.

They are God’s gift to you, as you are to them.” - Desmond Tutu

W

hat do Walmart, Ford Motor Company, Nike, Oracle, and Nordstrom have in common? They are all successful family businesses. Somehow, the energy, commitment, dedication and drive were handed down from one generation to the next. There’s another example of a “family affair” close to home; at least one that’s close to my home.

Sherry Burchard is a colleague of mine at the Orange Grove Center (OGC) in Chattanooga, Tennessee. Sherry has had, and continues to have, a time-honored and admired career as a caregiver at our center. She is currently involved as a trainer, ensuring that the next crop of direct support professionals has the skills, knowledge and drive to continue to provide the highest level of support for people with intellectual and developmental disabilities. She is also a credentialed dementia care trainer.

What makes Sherry unique is that all of her children have followed in her path. One could say they grew up surrounded by people with disabilities and, on the way up, they watched as Sherry became their d r a h c r u B y role model.

By Sherr As they matured, they witnessed Sherry transform lives, learned to accept the innate differences in all people, and became nourished in the belief that all people mattered. To the Burchard clan, they don’t work at Orange Grove; they have adopted Orange Grove.

The Burchard “family business” may not reap the financial benefits of a Ford or Walmart, but in terms of rewards, satisfaction and personal benefits, I’m sure they wouldn’t consider trading places. To Sherry and her children, “it’s all in the family.”

- Rick Rader, MD, Editor in chief, HELEN, The Journal of Human Exceptionality

Fam i l y

M

y name is Sherry Burchard, and I started working for Orange Grove Center (OGC) a little over 25 years ago as a bus driver and a direct support person (DSP). I am currently the Assistant Coordinator of Training and have continued to have many roles over my 25 years of employment with OGC. Interacting with the individuals at Orange Grove Center is a privilege. I consider them an extended part of my family.

I have four children, and they have all been employed at OGC. Each of my children opened their hearts just like I did. My youngest daughter, Rebecca Burchard, started working for OGC right

34 | HELEN • helenjournal.org

out of high school, 17 years ago. She became a house manager/DSP at OGC, taking care of eight ladies she considered her family. She put in a lot of work, but she enjoyed it. She is currently a livein house manager caring for three ladies at OGC. Rebecca has plans to further her career with OGC as she finishes college. Rachael Gray, my oldest daughter, started working with OGC 15 years ago and has filled many roles with combined responsibilities. Currently, she takes care of two gentlemen as a live-in house manager/DSP with OGC. My middle daughter, Sarah West, worked with three gentlemen at OGC for six years as a live-in house manager/DSP. My son, Jonathan Burchard,

worked at OGC for two years as a DSP the key. As a caretaker, there in an eight-bed home with residential are heavy burdens that you services. One of my son’s fondest carry. Learning to cope with memories is when he took one of the the good and the bad is how older residents to an Atlanta Braves one comforts themselves and Game. They had a blast, enjoying a those around them. fun-filled ballgame together. My chilJust because someone has a dren and grandchildren have opened disability does not mean they their hearts to every individual at OGC cannot enjoy life to the fullest they have come to know. Some of my with the people they love. My fondest memories are spending a fourfamily believes in including day weekend over everyone Thanksgiving in a and doing cabin in Gatlinburg, things that TN. My daughter bring joy to As a caretaker, brought four of her the atmoladies who did not there are heavy sphere. We have a family for a have lived burdens that you holiday and enjoyed through torstaying in the cabin carry. Learning to nadoes and with 20 of my famdeath. These ily members. Many cope with the good things make memories were us stronger and the bad is created, and we still as a family. how one comforts Working with talk and reminisce over the times spent with themselves and individuals together. disabilities is one those around them. of the most fulBefore the COVID pandemic, filling things you my family would join together to mincould ever do. They accept you for gle. Each holiday was spent making who you are, no matter the circummemories and celebrating family, instance. They are happy and caring cluding my extended family at OGC. I and treat you like you matter. They have a fantastic family that takes pride join right in the conversation and in including others. I love attending have fun. They do not complain church, eating out, vacationing, enjoyabout their situation but see the ing amusement parks, and celebrating good in everything around them. life together as a family. We continue I recently switched job roles to make memories with our extended and am transitioning into becomfamily at OGC. My 16-year-old grand- ing a trainer for new staff memson, Hunter Brown, worked at OGC bers by giving them the tools to GG Ranch Camp this past year and en- help educate them. At the same joyed himself. He plans on going back time, they take on the jobs of next year to volunteer. I am blessed caregiving for our aging popthat my children and grandchildren do ulation. I have invested 25+ not consider this a burden. They have years into a career, not just a accepted everyone that has come into job. I am so lucky to have my our lives. We lost individuals along the family beside me in all these way, but have made many long-lasting memorable adventures. friends and memories. There have been many ups and downs throughout my Sherry Burchard is Assistant Coorcareer, but understanding how the good dinator of Training at Orange Grove always seems to outweigh the bad is Center in Chattanooga, TN.

“

helenjournal.org • HELEN | 35

A person with paralysis uses a mind-controlled wheelchair as part of a trial The University of Texas at Austin

People with

Paralysis Navigate a Room Via a

Mind-controlled Wheelchair

By Carissa Wong

36 | HELEN • helenjournal.org

T

hree people with paralysis of all four limbs used their thoughts to steer a wheelchair through a cluttered room with a reasonably high level of accuracy. This suggests people with paralysis could move independently through certain rooms, but the technology may not be advanced enough to navigate a busy street.

A range of different researchers have previously used two main strategies to test mind-controlled wheelchairs on non-disabled people. The first involves a person focusing on a flickering light in a particular location. This generates brain signals that an artificial intelligence translates into wheelchair movements towards that location, but this approach often leads to eyestrain.

The second strategy involves implanting electrodes in the brain. These accurately transmit brain signals to an AI, but only following a highly invasive procedure that carries a risk of infection.

Testing a third strategy, José Millán at the University of Texas in Austin and his colleagues recruited three people with little or no movement in any of their limbs. The team assessed whether a brain-computer interface could steer an electric

wheelchair based on brain activity generated “There will be people who will learn it very when these individuals imagine moving their fast and very well, then there will be others limbs. who will need more time to learn, such as Each participant wore a skullcap containing Person 2, but I think anyone can learn to do 31 electrodes, which could non-invasively deit,” says Millán. tect signals from a brain region that regulates By analyzing the participants’ brain signals movement, called the sensorimotor cortex. over the training period, the team found the These signals were transmitted to a laptop “left” and “right” brain signals of Person 1 and fixed on the back of the wheelchair, where an Person 3 became more distinct.

AI translated them into wheel movements.

Next, the team tested how well the particiTo move right, the participants imagined pants could navigate the wheelchair through moving both arms. To four checkpoints across move left, they imagined a 15-metre hospital Each participant wore a skullcap room containing beds, moving both legs. The wheelchair otherwise chairs and medical containing 31 electrodes, which moved forwards. equipment. could non-invasively detect signals Person 1 completed In the two other strategies used to steer circuit in about 4 from a brain region that regulates the mind-controlled wheelminutes with 80 per movement, called the sensorimo- cent success, on averchairs, the ability to navigate the chair mainly age, over 29 attempts. tor cortex.

These signals were relies on how well Success was defined brain-computer interfacas passing through the transmitted to a laptop fixed on es retrieve and interpret circuit checkpoints. the back of the wheelchair, where brain signals from a user Person 3 completed over a training-and-testan AI translated them into wheel the circuit in roughly ing session that lasts a 7 minutes, with 20 per movements. few hours. cent success, on average, across 11 attempts. PerA person with paralysis son 2 reached the third uses a mind-controlled wheelchair as part of checkpoint in about 5 minutes during 75 per a trial cent of their attempts but couldn’t complete In the latest research, the team trained the the whole course. participants to generate clearer brain signals “I wouldn’t say the approach is useful on over a period of two to five months, with three busy streets or less controlled environments, training sessions per week. but the ability to move independently at all can During each session, the team asked the parbe a huge benefit to these people,” says Millán. ticipants to command the wheelchair to move However, the skullcap must be stuck to the left or right 60 times, on average. head via a gel that dries out after a few hours, “Person 1” delivered correct commands 37 limiting how long the wheelchair can be conper cent of the time, on average, across their trolled at one time. first 10 training sessions, increasing to 87 per The use of gels could one day be avoidcent accuracy by their final 10 training sesed due to rapid advancements in dry and sions. skin-printed electrodes, as well as ones that fit The steering accuracy of “Person 3” also within the ear, says Palaniappan Ramaswamy improved, from 67 per cent to 91 per cent. at the University of Kent, UK. Combining this “Person 2” consistently steered with an averlatest research with the gel-free technology age accuracy of 68 per cent over their training could push mind-controlled wheelchairs out sessions. into the real world in the next decade, he says.

"

Journal Reference: iScience, DOI: doi.org/10.1016/j. isci.2022.105418 (Originally published in NewScientist.com)

helenjournal.org • HELEN | 37

PERSPECTIVES

Fast Forward: Helping Make Health Care More Accessible to Those with I/DD How a battle with Guillain-Barré Syndrome brought me to medical school

By Zachary Taylor, OMSII

T

he warm summer breeze blew through my helmet on the first day of eighth-grade football camp. In just two short weeks, school would begin and I could work towards making friends and progressing my football career. I had a great feeling about this season because I had been practicing all summer. Things were looking great as “Lose Yourself” by Eminem was playing in the background when I caught my first-ever touchdown pass in a scrimmage. But, that incredible feeling was slightly dampened by the fact that I had to go get some mandatory vaccinations for school following practice, including the DTaP vaccine. If I only knew that this simple event would change my life forever.

It was Thursday, August 4th, 2011, when my family came and visited us at our home in Joplin, Missouri. We began our 3-day adventure by playing some games and catching up with each other. I wasn’t feeling very good, my stomach was hurting and my hands and feet were slightly numb and tingly, but I didn’t think too much about it. On Friday when I woke up, I could not feel my hands or feet in the shower and was concerned. I told my parents, but they thought I was trying to get out of going to the museum we were about to visit.

While we were at the museum, I slept on the stairs

38 | HELEN • helenjournal.org

“ the whole time and my family was becoming upset with me. We went to a restaurant and I still slept with my head on the table and couldn’t even take a bite of my food. We went home and I slept on and off until Sunday morning when my family left back to Tennessee. At this point, I could no longer feel my arms or legs, as well as parts of my torso. I skipped church and could hardly walk. My mom asked me to turn on the sprinklers and I remember not being able to feel the dew on my toes. I began projectile vomiting and my parents finally decided to take me to urgent care.

They dismissed my unique and intriguing symptoms as “dehydration” and sent me on my way, but as we were on our way out, a random nurse told us she thinks I might have Guillain-Barré syndrome and sent me to the ER where I waited for 6 hours before being brought back. The doctors agreed with the nurse and urgently sent me to Children’s Mercy in Kansas City, Missouri, where I would spend the next 60 days, and eventually lose my ability to function. The mainline treatment for Guillain-Barré Syndrome was IVIG, or intravenous immunoglobulins, which were ineffective for my specific case. The doctor walked into my room and told my 13-year-old self to say my goodbyes as I would no longer be able to see my family and that I would pass away in the next few hours. As I lifelessly

They dismissed my unique and intriguing symptoms as “dehydration” and sent me on my way, but as we were on our way out, a random nurse told us she thinks I might have Guillain-Barré syndrome.

gazed at my family, unable to move my body, they hugged me and cried on me. I couldn’t hug them back or even say I love you due to my full-body paralysis. It didn’t resonate well with me that I would die early and never experience the beauties of life, but these were the cards I was dealt.

However, with the determination of the doctors and my parents, they formulated a plan to try another treatment called plasmapheresis that would eventually be successful, although it was an extremely treacherous battle I would face over the coming years. My entire body was paralyzed for around

21 days, but my recovery would take close to 3 years of intense physical therapy, wheelchair/walker use, and an immense amount of adversity. I had to re-learn how to do everything, including how to walk, talk, swallow, etc. One of the worst parts of this experience was when the nerves in my body all “woke up” at the same time. My nerves were unable to be “turned off” or desensitized, so the pain would persist until my nerves learned how to allow my body to feel again. For this reason, it hurt for my skin to touch the bed, and I was unable to wear clothes or use blankets for several months. The pain was so intense that for seven straight days, I was screaming in pain at the top of my weak and slightly less paralyzed lungs and vocal cords.

One treat I would receive after a long week of physical therapy up to 8 hours a day was a 2-hour outing each weekend. The first time I was able to leave the hospital, we went to the mall.

One of my most horrific memories was at this mall, where a family saw me in my wheelchair with my feeding tube in my nose and compression boots on my feet to help my circulahelenjournal.org • HELEN | 39

tion. It was a mom and two kids, and the kids got a little close to my wheelchair and the mom told her kids, “Stay away from that freak, kids. You might end up ret**ded too.” That has burned into my mind forever, and I still have PTSD from the use of that specific “R” word, which is one of the main reasons I have become such a compassionate advocate of the Intellectual and Developmental Disabilities (I/DD) community.

A second instance was when I went to a bone-digging dinosaur restaurant in Kansas City and they told me that (“R” words) aren’t allowed to get into the sand with wheelchairs, and since I couldn’t function without my wheelchair that had my feeding bag and meds attached, I couldn’t dig for bones. These may seem like minor inconveniences, but to a kid that has gone through all that I did up to that point, I just wanted to feel “normal” for a change. My life would only get harder as I eventually went back to school several months later and I was bullied for various reasons. I had to take several breaks from school due to serious sensory overstimulation and bullying.

One of the main reasons I have teamed up with HELEN Journal is to open the eyes of the public to the drastic changes that need to happen in order to create a safe environment for people with I/DD. I am a second-year medical student and have learned first-hand that medical schools hardly touch on how to approach caring for the I/ DD community, which makes up roughly 15% of the patient population of most health care providers.

My school has made a step in the right direction by creating an I/DD

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“

I am a second-year medical student and have learned first-hand that medical schools hardly touch on how to approach caring for the I/DD community, which makes up roughly 15% of the patient population of most health care providers.

elective where we get to team up with a community member with an I/DD and hang out with them to help the mentor, which is the I/ DD community member, to work on goals they may have such as communication or athleticism. It has also led me to be one of the head coaches for Special Olympics Missouri.

I have decided to help make health care more accessible and enjoyable to I/DD patients by interviewing community members that have an I/DD to tell us about the good and bad health care experiences. Health care providers will have access to this article and can fine-tune their abilities as well as learn how to properly approach an I/DD patient. This will also include interviewing the families of I/DD members to show how struggling is okay, and to open up communications between families to help us grow as a community. This will only be a small step in the right direction, but an important one. If we come together as a team, we can help shape the future of I/DD care and build a strong community to help fight the adversity faced daily.

Tune in next month as we tackle the approach to asking I/ DD related questions in a health care setting.

Zachary Taylor, OMSII is a Special Olympics Coach with a Passion for advocacy and has faced adversity, giving him an interesting story to tell. He is a second-year medical student and is a member of the AADMD | Global Health Committee.

A Passion for Supporting the IDD Community

and Proud Supporter of HELEN: The Journal of Human Exceptionality Almost 30 years ago, Eunice Kennedy Shriver asked Dr. Steve Perlman to create a health program for the Special Olympics. “Healthy Athletes” is now the largest public health program in the world for children and adults with Intellectual/Developmental Disabilities.

HELEN: The Journal of Human Exceptionality is the next step to helping provide healthcare professionals, caregivers, families, and advocates with resources and education to better support this under-served, marginalized and invisible population.

Steve Perlman, DDS, MScD, DHL (Hon.) has extensive experience through his private practice and his role as Clinical Professor, Boston University School of Dental Medicine; has an Academic Appointment at the University of Pennsylvania School of Dental Medicine; is Co-founder and Past President of the AADMD.

We Help You Help.

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AARP can help with information and useful tips on how you can maintain a healthy life balance, care for your own physical and mental well-being, and manage the challenges of caring for a loved one. Because the better care you take of yourself, the better care you can provide for your loved one.

You’re there for them.

We’re here for you.

Find free Care Guides to support you and your loved one at AARP.org/caregiving

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People-centered care means all your health professionals work together.

Join AADMD - Health professionals united in one voice for inclusive health.

The American Academy of Developmental Medicine & Dentistry (AADMD) is a non-profit, membership organization of interdisciplinary health professionals — including primary physicians, medical specialists, dentists, optometrists, nurses and other clinicians — committed to improving the quality of healthcare for people with intellectual & developmental disabilities (IDD). We make a difference through membership, education and advocacy.

Associate memberships available for non-clinicians as well.

Patients with IDD shouldn’t have to advocate alone.

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