Helen Journal September 2022

ISSUE NO. 4 SEPTEMBER 2022

+ INSOMNIA in AUTISM

& Related Disabilities

RANDOM

Workplace Observations ABOUT THE SHORTAGE OF DIRECT CARE WORKERS

HOME ALONE

House Calls for the Elderly with Disabilities

Dancing the

Neural Tango:

EDUCATIONAL OUTREACH

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 24 Using the Principles of Plain Languge

By Margaret A. Nygren, EdD, FAAIDD

Plain language can improve knowledge transfer and facilitate informed decision making

18

Insomnia in Autism and Related Disabilities

By Beth Malow, MD, MS

Individuals on the autism spectrum and other disabilities struggle with regulating emotions, and their struggles can be amplified by poor sleep.

38

Dancing the Neural Tango

By Dr. Martha Summa-Chadwick, DMA and Steve Weiser

Music for educational outreach and therapeutic use

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Contents Volume 1, Issue 4

36

14

22 COLUMNS

FEATURES

6 Nothing is Written

13 Change How You See, See How You

A Variation on a Theme

By Rick Rader, MD, FAAIDD, FAADM

9 Around Social Media

Different Brains: For a Better Understanding of Neurodiversity

By Joseph Satchi

10 Happenings

News From Around the Community

30 AADMD

Disability Fact Sheet: United Nations, Department of Economic and Social Affairs

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

ON THE COVER: Alaric is a son, brother, nephew, cousin, and friend with a big heart and a great smile. See Page 13 for exhibiton details.

Photo by Rick Guidotti - positiveexposure.org 4 | HELEN • helenjournal.org

Change Photography Exhibit

By Rick Guidotti

14 Home Alone: The Plight of Elderly Indviduals with Disabilities Living Alone and a Remedy for Their Medical Care

By Galina Rader, MD, FAAFP

22 Random Workforce Observations

about the Critical Shortage of Direct Care Workers

By Joseph M. Macbeth

32 How and Why I Recently

Visited Ukraine - Part Three

By Seth Keller, MD

36 Framing the Future

By Kelly Spina, LMSW

42 All In is All Out

By Carly Sharec

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

Editor in Chief Senior Managing Editor Senior Editor for Special Projects Publisher Art Director American Academy of Developmental Medicine & Dentistry 3 Forester Avenue, #22 Warwick, NY 10990

Rick Rader, MD, FAAIDD, FAADM Vanessa B. Ira Steve Perlman, DDS, MScD, DHL(Hon) Allen Wong, DDS, EdD, DABSCD Alyse Knudsen All rights reserved. Copyright © 2022 American Academy of Developmental Medicine & Dentistry

Editorial Advisory Board Marc Bernard Ackerman, DMD, MBA, FACD Director of Orthodontics, Boston Children’s Hospital; Adjunct Assistant Professor, University of Pennsylvania School of Dental Medicine, PA 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

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, Dept. of Family Med | Pediatrics, Albert Einstein College of Medicine, Director of Primary Care, Rose F. Kennedy CERC, Montefiore, Med. Director, ADAPT Community Network, New York, NY

JoAnn Simons, MSW Chief Executive Officer, The Northeast Arc, Danvers, MA Michael Stein 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

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

ality Exception n a m u H f Journal o

T

The his is the fourth issue of HELEN: The Journal of Human Exceptionality. We are delighted and thrilled at the reception that the journal has had. Delighted and thrilled, but not surprised.

With a top-notch cadre of editorial advisors, respected authors, a full spectrum of topics and subjects, and ongoing input from all sectors of the disability community, HELEN was a safe bet.

Whatever anxiety we had about naming the journal HELEN quickly faded when readers sent us positive feedback as to the creative, innovative and appropriate homage to Helen Keller that the name portrays.

The genesis of the name is quite interesting. When we embarked on creating the journal, one of the first items on the agenda was “what do we call this newborn?”

Both Vanessa Ira, our standout Senior Managing Editor, and I had numerous brainstorming sessions, filled dozens of pages of legal pads and spent many moments of anguish in rejecting scores of names because they were close, but not the Aha! moment we thought the new publication deserved.

In one of these hair pulling sessions, Vanessa offered, “I got it, what about HELEN?” I was completely thrown off guard, “Where did that come from?” Vanessa shared that the inspiration came from John F. Kennedy, Jr.

O I T A I R A VA

6 | HELEN • helenjournal.org

Usual.”

It didn’t take me long to want to drop the net on the name HELEN. Vanessa came through and we popped the cork and declared HELEN as the Aha! name for the new publication. And while it sometimes takes people a minute to put it together, most agree that it works and serves as a near perfect moniker.

Ever since the launch of HELEN, I have been learning more and more about Helen Keller. Like most of us, I could probably get a “matching” question (if they even still have those on exams) correct (if

e m e h T a N on

and his magazine he called GEORGE. GEORGE was a glossy monthly magazine centered on the theme of politics-as-lifestyle founded by JFK, Jr. It was published from 1995 to 2001. The name, of course, was a reference to George Washington, who personified “politics” for everyone who made it past the fourth grade. It had an intriguing tagline as well… “Not Just Politics As Usual.”

One could say that HELEN could be thought of as “Not Just Disability As

one of the options to match the name of Helen Keller was to “blind and deaf”). I have become fascinated with her life, her trials and tribulations, her resilience and her reserve. In learning about Helen, I have been excited to read some of her quotes. It’s amazing how much you can understand about a person from the more notable things they said. One particular quote stopped me in my tracks.

“The most important day I remember in all my life is the one on which my teacher, Anne Mansfield Sullivan,

came to me.” The thought that a teacher could have that impact on a person, a person who achieved so much in her life, was enough for me to have to catch my breath.

That followed with the introduction to an article, “The Story of the Anne Sullivan and Helen Keller Friendship.”

“Many people think they know the story of Helen Keller, the girl who suffered from being blind and deaf. What many don’t know is that without Anne Sullivan’s patience, guidance, and friendship, Helen Keller never would

protest and demand that HELEN is the centerpiece of the masthead.

The Keller-Sullivan axis invites us to look at the role of caregivers in the success of people with disabilities.

While everyone, with or without a disability, has been influenced by teachers, mentors, guides, role models, and coaches, how can we measure their value, their contribution and their significance? I dare say that the teachers and caregivers have been equally impacted by their students, patients and clients (hate that term).

Anne Sullivan (called Annie by her friends) was born in Massachusetts in 1866. At the age of five, Anne contracted the bacterial eye disease trachoma, Teachers remind us that the which left her partially blind formula for success in any and without reading or writing skills. She received her educateaching scenario begins tion as a student of the Perkins School for the Blind; soon after with a student who is graduation at age 20, she becommitted, diligent, came a teacher to Keller which for 49 years. Sullivan determined and persistent. lasted was a gifted teacher and, withhave been transformed into the woman in six months, she taught Helen 575 and success story she became.” words, some multiplication tables and This paragraph I thought was bold, the Braille system. Sullivan helped perhaps too bold. It served to negate Keller graduate Radcliffe College by some of the innate qualities that Helen spelling the contents of class lectures obviously had and relied on. It preinto Keller’s hand and spent hours sented Sullivan as the real hero, the conveying information from textbooks person that was responsible for the to her. heights that Helen achieved over her At age 35, Sullivan suffered a stroke extraordinary lifetime. But you have and she became completely blind. to factor in the quote by Helen that When she was 70, she had a coronary suggests that her introduction to Anne thrombosis, fell into a coma, and died Sullivan was credited as being “the five days later, with Keller holding her most important day” in her life. One hand. has to look closely at Anne Sullivan in Sullivan’s work with Keller was order to get a better picture of Helen immortalized in the play called “The Keller.

Miracle Worker.” The title comes from Perhaps Helen would have sugMark Twain, who thought Sullivan gested that we name this journal, this was indeed a “miracle worker” for forum intended to provide a better the impact and influence she had on understanding of the disability expeKeller. rience, not after Helen, but after Anne Teachers are quick to remind us that Sullivan. The more I learn about Anne the formula for success in any teachSullivan, the more I think she would ing scenario begins with a student who

“

Why

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

- Helen Keller

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

is committed, diligent, determined and persistent. It is for that reason that we are proud to announce that this is the fourth issue of HELEN: The Journal of Human Exceptionality.

We think we got it right with HELEN. helenjournal.org • HELEN | 7

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.

8 | HELEN • helenjournal.org

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.

AROUND SOCIAL MEDIA

DIFFERENT BRAINS:

For a Better Understanding of Neurodiversity Different Brains, Inc. is a 501(c)(3) non-profit organization that creates media content to advocate for greater understanding of “neurodiversity.” It also provides neurodiverse adults with mentoring, training, and real-world experience to prepare them for successful careers and help them to reach their full potential. All of the videos, podcasts, articles, and other media content they create can be viewed free of charge at DifferentBrains. org.

By Joseph Satchi MISSION STATEMENT

Different Brains® strives to encourage understanding & acceptance of individuals who have variations in brain function and social behaviors known as neurodiversity. The organization’s mission has 3 pillars: 1. To mentor neurodiverse adults in maximizing their potential for employment and independence.

2. To increase awareness of neurodiversity by producing interactive media.

3. To foster the next generation of neurodivergent self-advocates

Socials

FOUNDER Different Brains® Inc. founder, Harold “Hackie” Reitman, M.D., is an author, filmmaker, retired orthopedic surgeon, former professional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate.

However, it was his role as a father that led to the creation of the DifferentBrains.org website.

Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brain tumors, and underwent two brain surgeries before the age of five. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for children’s charities (to which he donated every fight purse).

Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and produced a film based on her experiences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book “Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity.”

This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Convinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains

DifferentBrains.org @diffbrains different.brains different-brains @diffbrains In Between”.

In the company’s initial years of operation, Hackie self-financed all of the content on DifferentBrains. org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at conferences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains.

Sign up for their bi-monthlynewsletter!

DifferentBrains.org/sign-up/

helenjournal.org • HELEN | 9 helenjournal.org • HELEN | 9

HAPPENINGS

Steve Eidelman, a Founding

Member of HELEN’s Editorial Advisory Committee, Receives the NADSP’s 2022 Hingsburger Humanitarian Award (From NADSP.org)

T

he National Alliance for Direct Support Professionals (NADSP) is proud to recognize Steve Eidelman with the Hingsburger Humanitarian Award for 2022. For those who are not familiar with Steve, he is currently the Faculty Director of the National Leadership Consortium and the H. Rodney Sharp Professor of Human Services Policy and Leadership at the University of Delaware. He is a past President of the American Association of Intellectual and Developmental Disabilities (AAIDD) and serves as Senior Advisor to the Chairman of Special Olympics International. Steve also serves as the Executive Director of The Joseph P. Kennedy, Jr. Foundation. His recent efforts have focused on implementation of Article 19 of the Convention on the Rights of Persons with Disabilities (CRPD), focusing on deinstitutionalization. He was the Pennsylvania state government official in charge when Pennhurst State School and Hospital was closed and continues to be a fierce advocate for community living.

Steve co-founded the National Leadership Consortium in 2006, a partnership of 18 national developmental disabilities organizations. The Consortium offers intensive week-long leadership institutes which focus on strategies and values that are designed 10 | HELEN • helenjournal.org

to meet the specific needs of disability organizations. They have also created a resource-rich website tailored to the needs of emerging leaders in the disability field, a community of practice aimed at supporting the growth and knowledge of disability leaders and research on best practices and innovations in disability supports. Since 2006, Steve has been instrumental in building leadership in the United States, Canada and Israel and recently celebrated the 100th Leadership Institute in July. These leadership institutes have engaged thousands of emerging leaders. He’s a trusted mentor to many leaders in our field, and like Dave Hingsburger, he is truly a humanitarian who has dedicated his life to the full inclusion of people with disabilities and developing leaders to make this a reality.

Please join us, virtually, on September 14th as we celebrate Steve Eidelman’s incredible career and impact on our communities. To register, visit https://us02web.zoom. us/webinar/register/WN_ n05JHX8NTT-2JOoq0wNMlQ

Students from Around World

T

Present their Oral Health Projects at the AADMD’s June Conference

he Alliance for Oral Health Across Borders (AOHAB) is proud to announce that through its “Student Leadership in Global Oral Health” initiative, over 12 students from around the world presented their oral health community projects at the American Academy of Developmental Medicine and Dentistry (AADMD) One Voice for Inclusive Health Conference which was held in Orlando, Florida on June 3-5, 2022.

The Alliance for Oral Health Across Borders developed the “Student Leadership in Global Oral Health” initiative with the goal of developing a group of young leaders throughout the world that will build sustainable oral health community projects, thus reducing the burden of global oral disease in regions that do not have access to proper care. During an 8-month virtual leadership course, each student worked with oral healthcare industry mentors to develop their own local community project.

Selected students were then chosen for a special lifetime opportunity to present their clinical poster at the “One Voice for Inclusive Health Conference” held by the American Academy of Developmental Medicine and Dentistry (AADMD).

“The goal of my project is to em-

power children to practice proper oral hygiene through the education of oral hygiene with cards, games and videos” - Student from Rwanda “My project is aimed at developing an oral health teaching training manual that will be used by primary school teachers in Zimbabwe.” - Student from Zimbabwe “My goal is to create awareness about oral health issues for cancer patients. I want to provide preventive treatments for cancer patients before and during treatment.” - Student from Ethiopia “My goal is to make fitness and oral health a lifestyle through accessibility, education and community engagement.” - Student from Haiti Dr. Steve Perlman, AOHAB Board Member, Co-Founder and past President of the American Academy of Developmental Medicine and Dentistry (AADMD), and Founder of Special Olympics Special Smiles, an oral health initiative for the athletes of Special Olympics International, states, “We welcome our collaboration with the outstanding Dental Student Leaders from the Alliance for Oral Health Across Borders and trust that they bring back information they glean from our meeting to their countries to expedite needed programs for people with intellectual and developmentally disabilities.”

The AADMD One Voice for Inclusive Health Conference introduced this group of young leaders to a previously invisible minority population: those with intellectual, developmental and physical disabilities.

“This initiative has been life-chang-

ing for me, I trust most students would agree with me as well. I commend the AOHAB for creating such a platform.”

– Student from Ethiopia “For me, Student Leadership in Global Oral Health Program and Orlando experience are the pay off for many years of hard work in the field of dental politics among students. Sometimes I struggle to see a reason for working so hard, but you showed me how magical international work can feel, and how many more things there are to reach.” – Student from Germany AOHAB is a global network of distinguished leaders in medicine, dentistry and public health that leverage their collective experience to identify, problem solve, and share innovative projects in oral health that develop access to underserved communities. The organization’s mission is to promote oral health as a conduit for communication and as a mechanism that will reduce the burden of oral disease across boundaries.

“Through the creation of collaborative programming such as this, with the American Association of Developmental Medicine and Dentistry, we hope to educate future leaders that will continue our mission of contributing to best practices for more sustainable quality oral health globally”, says Dr. Deborah Weisfuse, President of the Alliance for Oral Health Across Borders.

“We look forward to developing a memorandum of Understanding with AADMD and continuous collaboration for years to come.”

Visit the Alliance for Oral Health Across Borders website: www.alliancefororalhealthacrossborders.com helenjournal.org • HELEN | 11

Advancing Medicaid Policy

Ensuring Oral Health Equity, Access & Inclusion Supporting Helen’s Mission to improve the well-being of People with Intellectual & Developmental Disabilities

www.medicaiddental.org

12 | HELEN • helenjournal.org

A Photography Exhibit to Raise Awareness About the Importance of Diverse Individual Perspectives Photos by Rick Guidotti for Positive Exposure

F

rom September 22 thru December 2022, a community-based photography exhibit featuring individuals with a diagnosis of autism or other neurodevelopmental condtions will be held at The Warren Alpert Medical School at Brown University in Providence, Rhode Island.

This exhibit, a collaboration between Positive Exposure and PRISMA (Precision Medicine in Autism), celebrates each person’s uniqueness and teaches viewers about each person’s specific interests and passions, their “things” – the basis for PRISMA’s campaign #whatsyourthing.

The photography exhibit was created to raise awareness about the importance of diverse individual perspectives and their ability to collectively strengthen our shared humanity and our community.

Positive Exposure has received support from the With Foundation to partner with Bradley Hospital and the PRISMA Team at Brown University to create a film highlighting the mental health challenges facing individuals living with an Intellectual and Developmental Disabilities. The film series is called FRAME, Faces Redefining the Art of Medical Education. Each film places humanity at the forefront in medical education, profoundly changing how medical information is presented to healthcare providers in training, clinicians, families and communities.

P P

ositive Exposure (positiveexposure.org) utilizes the arts and advocacy to create a more inclusive world, celebrating our shared humanity. Positive Exposure collaborates internationally with nonprofit organizations, hospitals, medical schools, educational institutions, museums, galleries, advocacy organizations, and communities to effect a sea-change in societal attitudes towards individuals and communities at risk of stigma and exclusion.

RISMA (precisionmedicineinautism.org) is a multidisciplinary effort at Bradley Hospital and Brown University, bringing together genetic counselors, child, adolescent, and adult psychiatrists, and other clinicians and researchers, under the direction of Dr. Daniel Moreno De Luca. They work closely with individuals with a diagnosis of autism or neurodevelopmental conditions who come to see them in the context of mental health needs, often helping to identify an underlying genetic diagnosis.

Alaric (above), on this month’s cover and part of the exhibit, has a big heart and a great smile. He is a video game enthusiast and a cheeseburger connoisseur.

He enjoys watching shows about veterinary science, automobiles and extreme jobs.

Hannah is creative and musical with skills on the piano, guitar and organ. She finds joy in riding her horse Bella and making digital art.

Julian (left) is a funny, loving boy. For him, life is as cool as an ice cream and he would be happy to talk about it all day long. Pedro (right) loves to know exactly what to expect in a day. He is very technical and likes robots, Legos and anything that transforms.

Seth loves rock music, Batman and firefighters. He has a great sense of humor and has a sensitive side too. He loves his dogs, Molly and Noah.

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A LO E M N O The Plight of Elderly Individuals with Disabilities Living Alone H and a Remedy for Their Medical Care

By Galina Rader, MD, FAAFP

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N

E

“We know that you’re in there, and that you’re all alone.”

- Harry, from the movie “Home Alone”

W

hile “Home Alone” is a popular 1990 American comedy film, the title is also an appropriate description of thousands of individuals with disabilities living alone, with no ongoing social supports or assistance. The film revolves around the adventures of a young boy who was mistakenly left by his family in their home during the holidays and faced with the challenges of fending for himself. In reality, however, there is nothing comedic about living alone, especially if one is an aging individual with a disability and co-occurring chronic health conditions.

The real-life scenario unfolds with the individual being hospitalized for an acute episode and being discharged back to their home with a litany of needed medications, diagnostic tests, rehabilitative regimens, referrals to specialists and changes in environmental and lifestyle choices. Often, the discharging physician is unaware of the patient’s life situations and assumes the discharge orders will be carried out successfully.

Often, the order to make an immediate follow-up appointment to see the patient’s primary care physician (PCP) goes unheeded, simply because the patient may not have a PCP. Without assistance, support and oversight from family members, paid caregivers or a concerned community network, we often see the medications are not obtained, appointments for referrals are not made, diagnostic test are not carried out, and the patient enters the vortex of the perfect storm.

One of the most successful and evolving strat-

egies to properly manage this patient population is the “home visit” – with the healthcare provider actually going to the patient’s home, conducting an examination, and making recommendations for treatment based on the realities of the patients scenario.

As a physician that conducts the majority of my patient encounters in the patient’s own home, I can attest to the wisdom, success and positive outcomes for patients with disabilities. The Galen Medical Group is a physician-led, multi-specialty medical group providing outstanding healthcare in the greater Chattanooga, Tennessee area. As a progressive practice, it became obvious that elderly patients with disabilities living alone represent the highest “at-risk” patient population. Their decision to create, promote and support a “patient home visit” model has allowed me to reap great personal and professional satisfaction from caring for patients in their own homes.

In the early 1930s, house calls by doctors were 40% of doctor-patient meetings. By 1980, it was only 0.6%. Reasons include increased specialization, technology, time constraints, and sheer economics. The ending of house calls coincided with the end of the tradition of the physician both admitting their patient to the hospital and treating the patient during their hospitalization.

Today, the emergence of the “hospitalist,” a physician who specializes in treating the hospitalized patient, has virtually done away with the old model of the PCP seeing patients in the office in the morning and seeing their hospitalized helenjournal.org • HELEN | 15

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16 | HELEN • helenjournal.org

patients in the afternoon. Like all models, both versions have their advantages and disadvantages.

Virtually every hospital discharge summary includes an order for the patient to return to their primary care physician within seven to ten days. Jackson et al, in an article published in the Annals of Family Medicine (Timelines of Outpatient Follow-Up), suggests, “Timely outpatient follow-up has been promoted as a key strategy to reduce hospital readmissions, though one-half of patients readmitted within 30 days of hospital discharge do not have follow-up before readmission.” The article concluded that “most patients do not meaningfully benefit from early outpatient follow-up.

Transitional care resources would be best allocated toward ensuring that highest risk patients receive follow-up within seven days.”

It is the elderly patients with disabilities living alone that best describes the “highest risk.”

I stated that many patients do not have a regular primary care physician. Many practices have discharged these patients because of non-compliance, multiple ‘noshow” appointment histories and no-response to office communication requests.

The Hospital Readmission Reduction Program (HRRP) is a Medicare value-based purchasing program that encourages hospitals to improve communication and care coordination to better engage patients and caregivers in discharge plans, and, in turn, reduce avoidable readmission. In the case of individuals with complex intellectual and developmental disabilities (IDD) residing in community group homes, the challenges are multiplied. The turnover of Direct Support Professionals (DSP) does not lend itself to continuity of care and the preservation of subtle benchmarks of behavioral changes that are only understood by “time and experience.” Individuals with IDD may not be able to communicate their pain, anxiety or discomfort,

and treatable conditions often turn the neglected corner with major consequences.

In addition to identifying the best practices to avoid re-hospitalization as an indicator of ongoing medical oversight, there are also financial incentives to keep at-risk patients in a “home-based” medical model.

While the COVID pandemic era telehealth has served as a successful adjunct to in-person appointments, it is not a panacea for “homealone”

social worker, or patient navigator, but the reality is that most practices, including large group practices, do not have dedicated professionals working in this capacity. The presence of these dedicated professionals who strive to prevent the notorious “cracks” from forming are sadly absent from most practices, clinics and offices.

One of the attributes of a homebased medical appointment is the opportunity for the provider to get an appreciation for the environmental impact on the patient’s health. The physician can observe conditions for fall risks, hygiene, bathing, temperature and ventilation control, food reserves, medication schedule charts, weight control, Many patients with disabilities proper storage and cooking equipment, lack the equipment, experirefrigeration storage ence, confidence, and skills to for certain medications, hoarding tendencies, care participate in a tele-health of pets, breeding grounds for allergens, and the appointment. They may not ability to self-evacuate in be able to communicate or case of a fire or natural disasters. The physician have sensory impairments can incorporate their that impede on their visual or concerns in reports that should initiate a remedial auditory capacities. action plan.

An additional attribute to the home-based patients. Many patients with disabilmedical encounter is the opportunity ities lack the equipment, experience, for the physician to obtain a better confidence, and skills to participate in understanding of the range, limitation, a tele-health appointment. They may impact, compensatory and accomnot be able to communicate or have modating skills that directly relate sensory impairments that impede on to the disability. These observations their visual or auditory capacities. can curtail the negative consequences Tele-health does not typically have a of diagnostic overshadowing. These follow-up mechanism to ensure that observations can lead to providing enfollow-up recommendations have vironmental, adaptive equipment, conbeen carried out. struction modifications that can lessen We certainly understand and apthe limiting nature of the disability. An preciate the value of effective “case example would be a “roll-in” shower management” by a nurse manager, stall instead of an inaccessible bathtub

“

for a wheelchair user.

In 1967, The American Academy of Pediatrics (AAP) introduced the term “medical home” to describe primary care that is accessible, family-centered, coordinated, comprehensive, continuous, compassionate, and culturally effective. The Medical Home Model has been applauded since its inception. As of April 2013, 43 states had policies promoting the medical home model for certain Medicaid or CHIP beneficiaries. States have created pilot projects, reformed payment structures, invested in health information technology, restructured Medicaid provider systems, and included the medical home model in service delivery.

I would propose that the ultimate medical home is “the patient’s home,” and for millions of people with disabilities, it’s the ultimate home for the delivery of care.

Galina Rader, MD, FAAFP is board certified in family medicine, palliative care and hospice care. The focus of her practice is on elderly patients with disabilities and chronic co-morbid conditions, living alone with no significant support or assistance. She is a member of the Galen Medical Group in Chattanooga, TN.

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Insomnia in

Autism and Related Disabilities

By Beth Malow, MD, MS

S

leep is an important part of our health and well-being. We all know how our emotions can spiral out of control when we aren’t sleeping well. We are prone to pounce on our friends, or send that email we will regret later. Individuals on the autism spectrum, and other disabilities, struggle with regulating emotions, and their struggles can be amplified by poor sleep. The good news is that sleep problems are easily treatable in autism and related disabilities. In this article, we will discuss a common sleep problem, insomnia, and understand its causes and treatments.

CDC prevalence is now 1 in 44 children and more than 70,000 children are turning 18 each year, meaning more than 700,000 autistic individuals are entering adulthood over the next decade. Sleep affects 50-80% of those with autism and is the most common co-occurring condition that parents report to their child’s healthcare provider. Insomnia, which has been defined as difficulty falling asleep, staying asleep, poor sleep quality, or short sleep duration, is the most common sleep problem within autism. As we will discuss in a future article, sleep affects health and well-being, in both the individual and family.

Causes of insomnia in autism and related disabilities can be placed into three simple buckets—medical, behavioral, and biological. The medical bucket includes other sleep disorders such as obstructive sleep apnea, which can affect both children and adults, especially those carrying excessive weight. Add restless legs syndrome, and psychiatric conditions such as attention deficit hyperactivity disorder, anxiety, and depression, all of which can affect sleep. Med-

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The biological bucket includes areas such as being overly arousable, having difficulty with processing melatonin, or having the genes for poor sleep. Many parents report that their children “can’t turn their brains off.”

ical conditions such as seizures, gastrointestinal problems, pain, and eczema can also interfere with falling asleep or contribute to night wakings. Low or low normal ferritin (iron stores) levels below 50 ng/ml can cause restless legs, leg kicks, or restless sleep, and iron supplements can help. Medications to treat a variety of conditions, including antidepressants and stimulants, can make it harder to fall asleep. The good news is that many of these medical conditions are treatable, and addressing them can restore restful sleep.

The behavioral bucket touches upon aspects of good sleep habits, also referred to as sleep hygiene.

These include not only what happens at bedtime, but what occurs throughout the entire day. For example, getting enough light in the morning can actually make it easier to fall asleep at night, as any of us who have traveled overseas can attest to.

Physical exercise has a similar effect on promoting sleep, although exercise too close to bedtime may keep us up. Limiting drinks with caffeine, including sodas, tea, and chocolate milk, can promote sleep. Screens—whether from video games, phones, laptops, or televisions—can keep us awake through the stimulating “blue” light they emit, the content they provide, or both. Even the timing of when we go to bed can make a difference, with teens who have gone through puberty finding they require later bedtimes (our brains release melatonin

two hours later, on average, after puberty). In those with sensory sensitivities, the level of noises and light can affect sleep at bedtime. The firm pressure of a weighted blanket can be comforting and sleep-producing.

Bedtime routines, including visual schedules with photos or line drawings, in those with limited language, and checklists in those with more advanced language, can be very helpful. We also have found that simple visual aids, such as a stop sign on a child’s door to remind them to go “back to bed,” coupled with bells or something else on the door to alert the parents to their awakening, can be very helpful. A bedtime pass is a small card (that may include a picture of the child’s favorite animal or cartoon character) that encourages children to stay in bed and “exchange” their pass in the morning for a reward. Parents can also be taught strategies to comfort their children while minimizing interactions that stimulate them.

The biological bucket includes areas such as being overly arousable, having difficulty with processing melatonin, or having the genes for poor sleep. Many parents report that their children “can’t turn their brains off.” Overarousal, or hyperarousal, can tie together anxiety, insomnia, or being more sensitive to sensory stimuli in the environment.

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A vicious circle can be set up, with insomnia at night leading to more behavioral problems during the day, and then more insomnia at night. Daytime stressors can make everything worse, and result in increased levels of cortisol at night. Even when asleep, children on the autism spectrum have exhibited elevated heart rates, a sign of overarousal. Medications can often help with overarousal, but behavioral approaches (see above) can be helpful as well.

Melatonin, referred to as the “hormone of darkness,” is released at night, with its production suppressed during the daylight hours. In addition to promoting sleep and synchronizing our biological clocks, it may act to decrease anxiety and decrease overarousal. Some studies have shown that melatonin is deficient in children or adults on the autism spectrum. Other studies have documented normal melatonin levels but have shown that melatonin supplements can promote sleep. Genes that regulate melatonin production or breakdown are altered in autism and other psychiatric conditions.

While insomnia is very treatable in many on the autism spectrum, or with related disabilities, we are still learning the best ways to provide treatment to children, teens and adults. While many benefit from working with a

trained psychologist or therapist, there are some parents who can learn these strategies on their own. Older children and adults may also benefit from formal CBTI (cognitive-behavioral therapy for insomnia) but may also be successful with “do-it-yourself” strategies (see resources at end of

These should be used sparingly – to promote behavioral strategies rather than substitute for them. Whenever possible, work with the healthcare provider to use a medication that will treat a co-occurring condition such as epilepsy, anxiety, or depression.

Starting at low doses can avoid excess sedation and other side effects. It is important to avoid adding more medications to those that aren’t working but instead substitute new medications for those that aren’t working.

More studies of medication effectiveness for sleep, and side effects are needed, in real world settings that collect data from people with autism and related disabilities, and their families.

article). It is helpful to view insomnia as a condition that is not “one size fits all” but instead select treatments that meet the needs of the child and family, while always searching for a possible medical or biological cause or contributor.

Behavioral treatments should be considered the “first-line treatment” for insomnia, given that they often help many children and do not have the side effects of medications. However, some children require supplemental melatonin or prescription medications to fall asleep or stay asleep.

Beth Malow, MD, MS is Burry Chair of Cognitive Childhood Development and Professor of Neurology and Pediatrics at Vanderbilt University Medical Center. Her research and clinical practice are focused on sleep in autism across the lifespan, including treatments with behavioral approaches and medications.

This article is included in the upcoming monograph “Sleep and Sleep Disorders in People with Disabilities” published by HELEN: The Journal of Human Exceptionality.

REFERENCES Autism Speaks Sleep Toolkits: collection of free and downloadable pamphlets, quick tip sheets, and videos https://www.autismspeaks.org/tool-kit/atnair-p-strategies-improve-sleep-children-autism Terry Katz, PhD and Beth Malow, MD, MS Solving Sleep Problems in Children with Autism Spectrum Disorders: A Guide for Frazzled Families: Book to help families implement behavioral sleep strategies. Woodbine House, Maryland, 2014.

Maxwell-Horn, A., & Malow, B. A. (2017). Sleep in autism. Seminars in Neurology (Vol. 37,(No. 04), 413–418.

Loring, W. A., Johnston, R., Gray, L., Goldman, S., & Malow, B.

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(2016). A brief behavioral intervention for insomnia in adolescents with autism spectrum disorders. Clinical Practice in Pediatric Psychology, 4(2), 112–124.

Malow, B.A., Adkins, K.W., Reynolds, A. et al. Parent-Based Sleep Education for Children with Autism Spectrum Disorders. J Autism Dev Disord 44, 216–228 (2014).

Goldman, S.E., Richdale, A.L., Clemons, T. et al. Parental Sleep Concerns in Autism Spectrum Disorders: Variations from Childhood to Adolescence. J Autism Dev Disord 42, 531–538 (2012).

HABIT FORMING:

STRATEGIES FOR AUTISM AND RELATED DISABILITIES SLEEP PROBLEMS Bedtime routines that include visual schedules with photos or line drawings, such as the examples below, can be helpful for those with limited language. Checklists can be very helpful for those with more advanced language.

TAKE A SHOWER

WASH HAIR

APPLY LOTION

PUT ON PAJAMAS

BRUSH TEETH

GET A DRINK

GO TO THE BATHROOM

HUG & KISS GOODNIGHT

LIGHTS OFF

WEIGHTED BLANKET

GO TO BED

GO TO SLEEP

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Random Workforce Observations ABOUT THE CRITICAL SHORTAGE OF DIRECT CARE WORKERS

By Joseph M. Macbeth

T

he National Alliance for Direct Support Professionals is an advocacy organization that was founded in 1996 by the late John F. Kennedy Jr. and is the only national advocacy organization whose sole purpose is dedicated to advancing the direct support profession.

Mr. Kennedy wrote in a report to the President that “Quality is defined at the point of interaction between the staff member and the individual with a disability.” For more than 25 years, our mission has been to enhance the quality of support provided to people with disabilities through the provision of products, services, and certifications that elevate the status of direct support workers, improve their practice standards, promote systems reform and, most importantly, advance their knowledge, skills, and values.

So what exactly does Quality at the point of interaction mean to those outside of the disability circles? Well, every industry, whether it be manufacturing, technology, finance, sales, healthcare, or supporting people with 22 | HELEN • helenjournal.org

disabilities have a benchmark for Quality. In our work, we measure Quality in terms of what we call “valued outcomes” – helping people with disabilities achieve things that are important to them – big things like finding and keeping a job, helping people develop meaningful and relationships, helping people live in their own homes, helping people stay connected and included in their communities – or helping people stay out of institutional settings. Outcomes can also be small things like preparing a meal, dressing oneself or balancing a checkbook.

As we’ve seen over the past two and a half years, these outcomes can be a matter of life and death – like keeping people healthy and safe during a worldwide pandemic and free of a virus that is three times more likely to cause death for people with disabilities and advanced age due to pre-existing conditions.

You might say that direct support professionals are the Jack and Jills of all trades – they do it all. Oh, and by the way, these outcomes that define

Quality are never accidental, nor do they just magically happen. When you analyze these outcomes, when you deconstruct them, you will most often find a direct support professional, or more likely a team of direct support professionals, who are highly intentional in their practice and can objectively demonstrate the correlation between their knowledge, skills and ethics with outcomes. Quality rests squarely on the shoulders of the direct support workforce.

For decades, there has been a perception across this country that direct support is unskilled work, entry-level work, or a job that just anyone can do.

I can assure you that after 40 years of working with direct support professionals in many service sectors, including IDD, aging, behavioral health, at-risk youth – nothing can be further from the truth. The work of a direct support professional is challenging, complex and continually changing, and no day at work is ever the same. It requires high levels of acuity, responsibility, judgment, and

character. I would argue that the false it right. Let’s make careful, deliberate and, at the same time, addresses wage perception around this work is why investments into the workforce that compression issues so tenured direct we find ourselves at the cliff’s edge can address this systemic failure for care workers are recognized for their where a critical shortage of qualified long term success. time and not left behind in order to workers is leading to service programs If you survey direct care workers attract new workers. closing, people and families being un- and ask them, “What is the most • To reduce turnover, create rate setserved, and highly vulnerable people important thing we can do to support ting methodologies with value-based at significant risk of abuse, neglect and you?”, their overwhelming answer payments that incentivize career exploitation. is, “Give us a living wage” – a wage ladders that lead to voluntary credenWe can’t blame the tialing for tenured direct pandemic; in fact, in care workers. We must my strong opinion, keep high performing COVID-19 has meredirect care workers in the ly lifted a veil and has jobs in which they excel If there is a silver lining to this exposed our service and enjoy. systems weakest link • Encourage your dreadful pandemic, it might be – the direct care workmembers of Congress and that the highest levels of force. Make no mistake, United States Senators to this is no longer a crisis government are now beginning sponsor H.R. 4779 and – a crisis is defined as Senate Resolution 1437 to take notice of just how sudden, unexpected and - Recognizing the Role temporary. We knew this “essential” direct care workers are. of Direct Support Profesday was coming more sionals Act which would than 25 years ago and, as require the Office of a system, we failed to address it. Yet, where I don’t have to work two or Management and Budget to establish a we continue to collect and share data three jobs to support my family. There separate category within the Standard about the poverty-level wages, inadare many reports on direct care wages. Occupational Classification system for equate training, the absence of career And we know that low wages feed direct support professionals so we can ladders, and a lack of professional high turnover, and we see a revolving begin to collect more accurate data. identity and a lack of professional door of strangers supporting vulnera• Lastly, I co-authored the report respect. ble people, often times with the most to the President in 2017 for the PresThe critical shortage of our direct intimate of care. Year after year we see ident’s Committee for People with support workforce is well documenthalf of this workforce leave and that Intellectual Disabilities. In this report, ed, and if there is a silver lining to this costs your state millions of taxpayer we identified 9 recommendations to dreadful pandemic, it might be that the dollars. address the workforce shortage. I am highest levels of government are now To be sure, solving this complex saddened and frustrated that none of beginning to take notice of just how issue will require comprehensive the report’s findings have been im“essential” direct care workers are and solutions – there is no one solution, no plemented. We know what needs to are infusing much needed financial re- silver bullet. Here’s a few ideas: be done. It’s up to policy makers and sources to address the shortage. Let’s • Introduce legislation that provides elected officials to have the will to not squander this opportunity. Let’s do a living wage to recruit new workers do it.

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Joseph M. Macbeth is the Chief Executive Officer and President of the National Alliance for Direct Support Professionals (NADSP) and has worked in the field of intellectual and developmental disabilities for 40 years - beginning as a Direct Support Professional. Macbeth is recognized as an international leader in the advocacy & movement to recognize direct support as a profession and for the past decade, has been a highly sought-after speaker and contributor on the workforce challenges that affected the intellectual and developmental disability service system.

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Using the Principles of

PLAIN LANGUAGE to Improve Knowledge Transfer and Facilitate Informed Decision Making

By Margaret A. Nygren, EdD, FAAIDD

Introduction There are currently 7,151 languages spoken in the world. The single most effective language of them all is “plain language.” Matt Groening, the cartoonist and creator of the TV series, “The Simpsons,” was fond of saying, “I know all those words, but that sentence makes no sense to me.” So many sentences don’t make sense, especially in the realm of science, medicine and technology. In the field of intellectual and developmental disabilities, language plays a vital part in defining people, allocating services and supports and modifying the expectations of human performance.

HELEN Journal is delighted to publish this article on the use of “plain language.” The push for informed decision-making, helping individuals to formulate choices, decisions and self-determination rely on an understanding of the words that are used to promote those offerings.

Maggie Nygren has made a major contribution to the need to use plain, simple, and understandable language, and we believe she has used that premise in crafting this exclusive article for HELEN Journal.

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

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P

lain language is one strategy for sharing information that others need for future action.

At its most basic level, plain language is an action-oriented approach to knowledge transfer.

Defining Plain Language Plain language is a communication strategy used to transfer knowledge for an audience’s later action. Using the principles of plain language can enhance the ability of professionals to communicate actionable information to nonprofessional audiences.

Plain language is not a language itself; it is a way to adapt and present complex information to a non-expert audience so that they can understand and act on it. Plain language has been

of plain language as just simplified language that a speaker or writer can create on the fly, it is more accurate to view it as a sophisticated adaptation targeted to the needs of a particular audience.

The principles of plain language can be applied in written, verbal, graphic, gestural, and even symbolic communication.

Plain language strategies are frequently used in fact sheets, summaries, instructions, graphics, and gestures—situations where information is shared explicitly so that a recipient can later act using that knowledge. The basic principles of plain language are using an active voice, positive tone, common words, and short sentences while presenting information in a way that is well-organized, concise, and appropriate for the intended audience (Dingwall et al., 2019). widely adopted in public health campaigns to reach target audiences, by clinicians to connect with patients and families, and by lawmakers and policymakers to clearly communicate rules and regulations.

Purpose of Plain Language Plain language is used when it is important for an audience to quickly understand complex information and take informed action. As plain language informs for the purpose of action, it is an action-oriented communication strategy.

While it might be tempting to think

Retaining Complex Language Complex or specialized language is desirable or required in some situations. Creative works, like poetry or fiction, may rely on intricacies of language to express meaning. Mathematical and musical notations use specialized symbols and syntax to convey information. Technical works may require complex language and imagery to effectively transfer knowledge between experts. Some kinds of documents (contracts, audits, lab reports, etc.) must follow strict rules to ensure accuracy and to comply with professional standards, legal requirements, and ethical obligations.

Function of Plain Language Summaries Plain language summaries of documents and communications using complex language can be created to facilitate knowledge transfer. Plain language summaries are literal adaptations of such works and are not line-by-line translations.

Summaries focus on the important points or findings that an audience might rely on to make decisions. The function of plain language summaries is identical to that of plain language itself: to adapt and present complex information in a way that a non-expert audience can both understand and act on.

Considering Historical and Ethical Perspectives Movement toward the adoption of plain language in various settings has been growing in the United States since the 1940s (Schriver, 2017). In the 1990s, the federal cross-agency Plain Language Action and Information Network (PLAIN) was created; its current resources and guidelines are available on its website, www. plainlaguage.gov. Executive orders signed by Presidents Clinton (Exec.

Order No. 12866, 1993; Exec. Order No. 12988, 1996) and Obama (Exec.

Order No. 13563, 2011) directed federal agencies to use plain language in their regulations and communications, and President Obama signed into law the Plain Writing Act of 2010, which required federal agencies to write all public documents in plain language going forward.

Willerton (2015) contends that use of plain language is an ethical issue: that people have a right to understand the information they receive from government representatives, health insurance companies, and clinicians so that they can act in their own self-interests. Willerton further suggests that it is unethical not to use plain helenjournal.org • HELEN | 25

language in the promotion of informed consent and decision making, particularly in working with those with low health literacy when they face unfamiliar, stressful, and/or challenging situations.

Using the Principles of Plain Language Plain language principles can be used to effectively adapt complex information for use by diverse target audiences (PLAIN, n.d.; World Health Organization, n.d.), including people with intellectual and developmental disabilities. Depending on the diversity of the target audience, attempts to adapt content into plain language may not result in a single, one-size-fits-all product. Language that might be understood easily by one audience might not be understood by another audience with different experiences.

Several different plain language versions may be required to reach diverse audiences. Simply writing to an eighth-grade literacy level will not result in a document that aligns with the everyday language used by audiences of, for example, PhD candidates, small business owners, working parents, and recent immigrants (Federal Plain Language Guidelines, 2011).

Identify the Audience The first step in preparing plain language communication is to identify the scope of the target audience.

The National Archives (n.d.) suggests that authors prepare to write or speak to the intended audience rather than to an audience similar to themselves.

Consider if, for example, the audience is all people with intellectual disability or a particular subset, all people at risk of a condition or only those from a particular culture, all people in a neighborhood who would be affected by a policy or only those who take public transportation, and so on.

Knowing the boundaries of the target audience and using the principles of plain language to guide the organi26 | HELEN • helenjournal.org

zation and delivery of information will increase the likelihood that the audience will understand and be able to act on the new information. The basic principles of plain language—using an active voice, positive tone, common words, and short sentences while presenting information in a way that is well-organized, concise, and appropriate for the intended audience—are described below.

quickly or at all.

Some situations are appropriate for the passive voice. For example, the passive voice is used in a journal article to place greater emphasis on a

Use the Active Voice Plain language uses the active voice. The active voice focuses the audience on either the action or the action doer.

Active Voice In the active voice, both the action and the doer of the action are clear (“I threw the ball”). The active voice uses a clear and direct sentence construction that focuses on the doer (I) and the action (threw) rather than on the target of the action (ball).

The audience may be the doer in the sentence even if they are not named.

For example, instructions using the active voice focus on the steps (actions) for the audience (the doer) to complete. Announcements and signs using the active voice also focus on actionable information (action) for the audience (the doer) to use.

Passive Voice In the passive voice, the focus is placed on an action’s target rather than the action or the doer of the action (“The ball was thrown by me”). The passive voice results in generally longer sentences that may require the use of additional verbs (Kramer, 2022).

Sentences in the passive voice can be harder for some audiences to decode

finding than on the finder. The passive voice is also used when the doer is unknown (“mistakes were made”) or irrelevant to the point of the sentence (“there was an accident that blocked traffic for miles”).

Use a Positive Tone Plain language uses a positive tone. Tone is conveyed through the framing of anticipated outcomes and those words and actions that signal an author’s emotional attitude toward the topic or the audience. Emotional attitude can be signaled by word choice; nonverbal cues the audience attributes to the author’s attitude; and other vocal behaviors such as rhythm, volume, or pitch (Roberts, 2021).

Frame Outcomes Plain language favors framing anticipated outcomes positively rather than negatively, emphasizing benefits to the

Present Information in a Well-organized Manner Presenting information in a well-organized manner will increase the audience’s understanding and use of new information. Organizing information Use Common Words under meaningful headings can enPlain language uses common hance an audience’s comprehension of words and phrases. Common words the material when it is presented and and phrases are those that are short, be useful to reference later to inform informal, and familiar to most speakspecific actions. ers. Common words are the words of As described in Lessons from the everyday life.

2021 Federal Plain Language Report Plain language requires both clarCard (2022), well-organized, plain ity and brevity to achieve actionable language content will: knowledge transfer. Common words • Begin with an explanation of the can clearly communicate an idea but reason or purpose for the presentation, image, or document.

• Focus the content on the needs or interests of Presenting information in a wellthe audience rather than organized manner will increase the on the perspective of the author or sponsor. audience’s understanding and use • Chunk information of new information. into short, manageable sections.

• Provide clear section headings that begin with action words. may not provide the precision of more • Place the most important informa• Positive tone: “Pay by this date to complex or formal words. While comtion near the beginning and the less avoid late fees.” “You’ll stay healthy/ mon words may be inexact, they can actionable information near the end. feel better by doing this.” “I can talk accurately communicate major points.

• Put action steps in the correct or now, but only for a second.” logical order.

Use Short Sentences • Avoid including information withCommunicate Emotional Plain language uses sentences that out explaining its use.

Attitude are short, informal, and to the point.

• Limit graphics to important content Plain language favors the use of Sentences that are long, formal, and/ and at a scale useful for later action. words that are positive or without or use complex structures are not as •Limit the length of lists of additionemotional overtones over those that effective in rapidly transferring actional resources or hyperlinks. send a negative message. To increase able knowledge as are those that are the likelihood that the audience will short and simple.

Be Concise accept the new knowledge and act on In addition to their length, plain Plain language is concise. Concise it, plain language communications language sentences share other charlanguage uses the most effective must signal a positive—or at least acteristics. The topics of plain senwords to get the author’s point across. a neutral—attitude toward both the tences are primarily information- and Concise language omits words that audience and the knowledge being action-oriented. Nearly all verbs used might add emphasis or grace but do transferred. in plain language are action verbs. not enhance meaning. For example, in Public health announcements rouExcept for presenting information in “The information is really critical,” the tinely adopt a positive or a neutral atlist form, plain language sentences word “really” can be omitted without titude because fear-based or stigmatiz- avoid using clauses or structures that ing messaging can backfire (Fairchild require commas, hyphens, semicolons, changing the meaning of the sentence.

The Federal Plain Language Guide& Bayer, 2021). Audiences are attuned or other punctuation to aid a recipient’s lines (2011) outline several techniques to verbal and nonverbal cues and are comprehension. audience. Persuasive communication in general favors leading with positive outcomes that receivers can anticipate if proposed actions are followed. The following statements convey the same information but in different tones: • Negative tone: “Late fees will be added to payments received after that date.” “You’ll get sick/feel worse by doing that.” “I’m too busy to talk now.”

less likely to accept and act on information when they feel disrespected, ignored, or that important information has been withheld.

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• Steer clear of hidden verbs. Hidden verbs are verbs that have been turned into nouns by adding a suffix (e.g., -ment, -tion, -sion, -ance) and require an additional verb to deliver the action. The sentence “We will announce” is more concise than “We will make an announcement.”

to develop concise language: • Omit redundant words and excess modifiers. “Departments A and B worked together on a joint project” will be more concise with the removal of “together” and “joint.”

• Avoid repetitive synonyms that convey a single concept. “Due and payable” is easily understood using only the word “due.”

Be Appropriate for the Intended Audience Plain language is tailored so that the intended audience can effectively grasp and act on new information. There is no “universal” plain language adaptation. The words and imagery used in plain language presentations or materials must align with the intended audience’s knowledge and experience. To be effective, plain language presentations and materials must grab the attention of the intended audience, describe why the knowledge to be transferred is important, and explain

how the audience can or should act on the information.

Plain language is a sophisticated adaptation of complex information.

Developing plain language materials requires an intentional development process of drafting, testing, and editing to create an effective adaption of a source document.

Conclusion Plain language is a strategy for adapting complex information for a non-expert audience to easily grasp and act on. The basic principles of plain language are using an active voice, positive tone, common words, and short sentences while presenting information in a way that is well-organized, concise, and appropriate for the intended audience.

Materials and communications may use complex language for legitimate reasons. Plain language summaries of documents can be created to facilitate important knowledge transfer for an audience’s later action. Plain language summaries are adaptations of works, rather than line-by-line translations,

REFERENCES National Archives. (n.d.). Top 10 principles for plain language. https:// Dingwall, J. R., Labrie, C., McLennon, T., & Underwood, L. (2019). www.archives.gov/open/plain-writing/10-principles.html Plain language. In Professional communications (pp. 30–40). Olds College. https://ecampusontario.pressbooks.pub/profcommsontario/chapter/ Plain Language Action and Information Network. (n.d.). Checklist for plain-language plain language. https://www.plainlanguage.gov/resources/checklists/ checklist Exec. Order No. 12866, 3 C.F.R. 1925 (1993). https://www.govinfo.gov/ content/pkg/WCPD-1993-10-04/pdf/WCPD-1993-10-04-Pg1925.pdf Plain Writing Act of 2010, Pub. L. No. 111-274, 124 Stat. 2861 (2010). https://www.govinfo.gov/content/pkg/PLAW-111publ274/pdf/PLAWExec. Order No. 12988, 3 C.F.R. 189 (1996). https://www.govinfo.gov/ 111publ274.pdf content/pkg/WCPD-1996-02-12/pdf/WCPD-1996-02-12-Pg189.pdf Exec. Order No. 13563, 3 C.F.R. 215 (2011). https://www.govinfo.gov/ content/pkg/CFR-2012-title3-vol1/pdf/CFR-2012-title3-vol1.pdf Fairchild, A. L., & Bayer, B. (2021, January 28). Why using fear to promote COVID-19 vaccination and mask wearing could backfire. The Conversation. https://theconversation.com/why-using-fear-to-promotecovid-19-vaccination-and-mask-wearing-could-backfire-153865 Federal Plain Language Guidelines. (2011). https://www.plainlanguage. gov/guidelines/ Kramer, L. (2022, April 20). Active vs. passive voice. Grammerly. https://www.grammarly.com/blog/active-vs-passive-voice Lessons from the 2021 Federal Plain Language Report Card. (2022, July 21). https://digital.gov/resources/lessons-from-the-2021-federalplain-language-report-card

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Roberts, K. (2021, August 19). Examples of negative tone of voice: 5 errors that can hurt your brand. readpeaker.ai. https://www.readspeaker.ai/blog/examples-of-negative-tone-of-voice/#:~:text=Negative%20 tones%20in%20speech%20are,up%20to%20share%20that%20emotion Schriver, K. A. (2017). Plain language in the US gains momentum: 1940–2015. IEEE Transactions on Professional Communication, 60(4), 343–383. https://doi: 10.1109/TPC.2017.2765118 Willerton, R. (2015). Plain language and ethical action: A dialogic approach to technical content in the twenty-first century. Routledge.

World Health Organization. (n.d.). Principles for effective communication: Understandable. https://cdn.who.int/media/docs/default-source/ infographics-pdf/communicating-for-health/understandable-web.pdf?sfvrsn=5ae4ffe9_6

and may become valuable supplements to the original documents.

Plain language is not a language itself, nor is it possible to create universal plain language materials that will be effective with all audiences. Several versions of plain language materials may be required to effectively reach broad and diverse audiences.

Since 2010, Maggie has served as the Executive Director and CEO of The American Association on Intellectual and Developmental Disabilities.

She is a nationally respected thought leader in the field of ID/DD. She has propelled public policy advocacy to new levels with 10 amicus briefs and 30 position statements. She currently serves on national advisory committees providing leadership for the Federal Communications Commission (FCC), National Institutes of Health (NIH), and Centers for Medicare & Medicaid Services (CMS).

YO U DON T H AV E T O BE SO STRONG BUT IF I’M NOT, WHO WILL?

Being a caregiver takes a special kind of commitment.

We know your strength is super, but you’re still human.

A A R P. O R G / C A R E G I V I N G 1 - 8 7 7 - 3 3 3 - 5 8 8 5

F I N D S U P P O R T F O R Y O U R S T R E N G T H. helenjournal.org • HELEN | 29

AADMD

Disability Fact Sheet

United Nations, Department of Economic and Social Affairs

By H. Barry Waldman, DDS, MPH, PhD Rick Rader, MD, FAAIDD, FAADM Steven P. Perlman, DDS, MScD, DHL (Hon) Allen Wong, DDS, EdD, DABSCD The Department of Economic and Social Affairs Disability of the United Nations (UN) has produced a fact sheet listing for the estimated 15 percent of the world’s population, or 1 billion people who live with disabilities. The fact sheet includes a general overview, including education, employment and information about violence. Most reports regarding individuals with disabilities and their conditions usually refer to individual countries or regions. This UN review provides a broader comparative analysis of the “world’s largest minority” and the consequences faced by individuals with disabilities, their families, countries and the world.

OVERVIEW Around 15 percent of the world’s population, or estimated 1 billion people, live with disabilities. They are the world’s largest minority. This figure is increasing through population growth, medical advances and the aging process, says the World Health Organization (WHO). Eighty percent of persons with disabilities live in developing countries, according to the UN Development Program. (WHO) In countries with life expectancies over 70 years, individuals spend, on average, about 8 years, or 11.5 per cent of their life span, living with disabilities. (Disabled World) Disability rates are significantly higher among groups with lower educational attainment in the countries of the Organization for Economic Co-operation and Development (OECD). On average, 19 percent of less educated people have disabilities, compared to 11 per cent among the better educated.

In most OECD countries, women are reported to have higher incidents of disability than men.

The World Bank estimates that 20 percent of the world’s poorest people have some kind of disability, and tend 30 | HELEN • helenjournal.org

to be regarded in their own communities as the most disadvantaged.

According to “Disabled World”, women with disabilities are recognized to be multiply-disadvantaged, experiencing exclusion on account of their gender and their disability.

Women and girls with disabilities are particularly vulnerable to abuse.

A small 2004 survey in Orissa, India, found that virtually all of the women and girls with disabilities were beaten at home, 25 percent of women with intellectual disabilities had been raped, and 6 per cent of women with disabilities had been forcibly sterilized.

According to UNICEF, 30 percent of street youths have some kind of disability.

Mortality for children with disabilities may be as high as 80 percent in countries where under-five mortality as a whole has decreased below 20 percent, says the United Kingdom’s Department for International Development, adding that in some cases, it seems as if children are being “weeded out”. (World Bank) Comparative studies on disability legislation shows that only 45 countries have anti-discrimination and other disability-specific laws.

EMPLOYMENT An estimated 386 million of the world’s working-age people have some kind of disability, says the International Labor Organization (ILO).

Unemployment among persons with disabilities is as high as 80 percent in some countries. Often, employers assume that persons with disabilities are unable to work. (ILO) Even though people with disabilities constitute a significant 5 to 6 percent of India’s population, their employment needs remain unmet, says a study

by India’s National Centre for Promotion of Employment for Disabled People. This is even in spite of the “People with Disabilities” Act, which reserves for them 3 percent of government jobs. Of some 70 million persons with disabilities in India, only about 100,000 have succeeded in obtaining employment in industry. (NCPED) A 2004 United States survey found that only 35 percent of working-age persons with disabilities are in fact working, compared to 78 percent of those without disabilities. Two-thirds of the unemployed respondents with disabilities said they would like to work but could not find jobs. (International Disability Rights Monitor, 2004)

likely to be victims of violence or rape, according to a 2004 British study, and less likely to obtain police intervention, legal protection or preventive care. Persons with disabilities are more likely to be victims of violence or rape, according to a 2004 British study, and less likely to obtain police intervention, legal protection or preventive care. (Dodd, Tricia, et al., 2004) Research indicates that violence against children with disabilities occurs at annual rates at least 1.7 times greater than for their peers without disabilities. (Global Campaign for Education, 2011)

A 2003 study by Rutgers University found that people with physical and mental disabilities continue to be vastly underrepresented in the U.S. workplace. One-third of the employers surveyed said that persons with disabilities cannot effectively perform the required job tasks. The second most common reason given for not hiring persons with disabilities was the fear of costly special facilities. (Dixon, Kruse, Van Horn, 2003) The Job Accommodation Network (JAN) of the U.S. Department of Labor’s Office of Disability Employment states that the employers in the 2010 study reported that a high percentage (56%) of accommodations cost absolutely nothing to make, while the rest typically cost only $600.

Companies report that employees with disabilities have better retention rates, reducing the high cost of turnover, says a 2002 U.S. study. Other American surveys reveal that after one year of employment, the retention rate of persons with disabilities is 85 per cent. (Unger, 2002) Thousands of persons with disabilities have been successful as small business owners, according to the

U.S. Department of Labor. The 1990 national census revealed that they have a higher rate of self-employment and small business experience (12.2 per cent) than persons without disabilities (7.8 per cent). (US Census of Population and Housing, 1990)

EDUCATION Ninety percent of children with disabilities in developing countries do not attend school, says UNESCO. The global literacy rate for adults with disabilities is as low as 3 per cent, and 1 per cent for women with disabilities, according to a 1998 UNDP study. (UNDP) In the OECD countries, students with disabilities in higher education remain under-represented, although their numbers are on the increase, says the OECD. VIOLENCE For every child killed in warfare, three are injured and acquire a permanent form of disability. (Disabled World) In some countries, up to a quarter of disabilities result from injuries and violence, says WHO. Persons with disabilities are more

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 Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.

Rick Rader, MD, FAAIDD, FAADM, DHL (Hon) is Director, Habilitation Center, Orange Grove Center; President, American Association on Health and Disability; Member, National Council on Disability; 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 current president of the American Academy of Developmental Medicine and Dentistry (AADMD).

REFERENCE United Nations. 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

helenjournal.org • HELEN | 31

How and Why PART THREE

I Recently Visited

UKRAINE

Actions Are Louder Than Words

By Seth Keller, MD

I

was so very sad to hear that Richard Engel’s son, Henry, passed away from complications related to his neurodevelopmental disorder, Rett syndrome. He was only six years old. He had all of the love and support of his parents, as well as access to the latest research and experts in the field. Despite all of the care he received, Henry’s fragile and progressive condition cut short his life.

When we met with Richard in Ukraine and talked about his son at that time, we really had no clue as to the precarious situation that Henry was in. Richard went on to visit another institution after he left us.

His piece on the Today Show on June 13th dramatically showed the terrible state that those with IDD were in. You could see it in their eyes, voices, as well as in their physical states. As he walked around the facility, Richard was clearly moved. He held their 32 | HELEN • helenjournal.org

hands, and spoke to them so warmly.

His comments were touching, stating that they were “Victims of a cruel biological fate…” and how the war had created additional challenges and stresses. But aren’t they also victims of the system in which they live?

He had to be thinking of his son throughout this trip. I can only imagine what else he must’ve been thinking: what if these individuals had even a small percentage of the help that his son had received? What if they lived with their loving families and had a supportive community?

The BBC recently posted their piece on their work which we were involved with while in Ukraine—BBC World News - Locked Away: Ukraine’s Stolen Lives These visuals and interviews only further expand upon the dire situation taking place in Ukraine and will continue unless something is done.

There is no doubt that the underlying

neurodevelopmental disorder creates prominent health challenges which place the person often in great need of supports from the time they are born, and often continue to some degree throughout their life. Most of those with IDD in Ukraine can be supported and the fate that came to Henry should not necessarily be inevitable—and yet that is exactly what does happen. The solutions to help make a real difference appear to be elusive. But should they be?

Why must supports at home and community care not be available, and why is institutionalization the “solution” for many with IDD in Ukraine?

We visited the Chernivtsi Oblast government leadership for answers. The Oblasts are somewhat equivalent to a province or a state in other parts of the world. Each Oblast has its own local government, and there are number of ministries responsible for various

Chernivtsi Oblast leaders meeting with DRI. Photo provided by Seth Keller, MD

services. We met with the education, health and social service ministry leaders alongside the Deputy Chief of Chernivtsi, Oblast Irina Isopenko.

Our DRI team met them at one of the governmental buildings in a beautiful part of the city. Security was tight. Once inside, we did a little walk about the building. We saw many Ukrainian flags, photos of what appeared to be military personnel, as well as maps of the country. We walked up a large spiral staircase and were led to the office of the Deputy Chief. We waited for a while outside the office; several others joined us, including a photographer, and then we finally were led inside.

Eric Rosenthal, Halyna Kurlyo and I sat in the Deputy Chief’s office at a large desk across from her and the other ministry leaders. Halyna served as the interpreter. They all were very pleasant. The priorities focused on

the war and any great discussion on reform, as well as an understanding on those that may have been displaced.

They didn’t deliver a lot of details and real answers. I felt that they would be open to more dialogue in the future.

Disability Rights International (DRI) recently held a webinar with several other international children’s and disability rights organizations, including Save the Children, UNICEF, and the Better Care Network. Marisa Brown and I participated in the webinar and spoke about the current health crisis that those with IDD face in the Ukrainian institutions. Malnutrition, muscle and bone loss, lack of socialization and immediate concerns for aspiration pneumonia were all health consequences that desperately needed the most attention NOW! The longer-term healthcare goals were related to the care of the common health complications often seen in this

population, including seizure management, spasticity care, oral healthcare, nutritional supplementation, and bowel care. The care and supports for behaviors associated with autism also are extremely needed. All of the speakers on the panel were very enthusiastic, and they seemed to be dedicated.

A values-based system needs to be addressed as well. When individuals with IDD are devalued at all the levels of Ukrainian society, then the priorities to make a change, especially when a war is going on, need to be addressed.

A focus on what would be considered as a crisis, high priority, or even a basic need will have to be strategized, and an action plan set into motion. I’m sure many people reading this story can easily give personal testimony on how and why their loved one with IDD matters as a person and deserves every right to be valued, and that they deserve the same kind of supports helenjournal.org • HELEN | 33

and care like any other citizen. Why part of your community. Article 19 of traditionally donate money to a great shouldn’t the same be true in Ukraine? the UN Convention on the Rights of number of organizations and causHow can a change be made? And by Persons with Disabilities establishes es. The terrible tragedy unfolding in whom? There is no doubt that a numa right to live in the community with front of our eyes, the war in Ukraine, ber of international organizations seem choices equal to others. Yet, millions has also raised billions of dollars, to be motivated to offer support. We of children and adults with disabilities including a huge amount from the US did work and bump into several orgaremain detained in orphanages, psygovernment. Much of the funds go to nizations in Ukraine which were doing chiatric facilities, and other institumilitary support, but some are apparjust that. But, was the help being protions around the world. Ukraine needs ently earmarked for “humanitarian” vided only putting a Band-Aid over a to respect and follow this Article. aid, whatever that really means. The big problem which needs an overhaul?

There are ongoing conversations great concern is that if there is any Giving an institution a new swing taking place among a number of inter- support for those with IDD, it may set, coat of paint or a new washing national organizations to help support go into making Ukrainian institutions machine is not the answer. Would this children and those with disabilities in “better.” Richard Engel interviewed temporary “fix” delay the much-needUkraine. It is not clear how far these the director of the faculty that he ed reform? The ultimate goal and plans have come, nor is it apparent visited, who complained that the war priority would be to support those with that specific healthcare practices and prevented much needed improvements IDD and their families in to his institution. their local communities What about supportto have access to quality ing the building of services. A major realisupports for families zation is that reform must and community, The Ukrainian government, from be accepted as necessary including that of from within Ukraine, and the federal level all the way down to healthcare.?

Ukrainians from all walks Knowing how the local level, must appreciate what to provide early of life and from all levels of society must be willing intervention to we would consider basic human to acknowledge that reform someone born with rights for those with IDD. One key is needed now. relatively significant The Ukrainians are basic right is to live with your family neurodevelopmental amazing people! They disabilities is well are steadfast and resilient documented, and and be a part of your community. in their battle against the standards of care aggressive Russian Federahave been created tion. Ukrainians are very proud of their standards are being discussed. My over the course of many years by country and of their heritage, separate firsthand experience is that early experts around the world. The cultural from their past as part of the Soviet intervention to support the physical awaking that those with IDD have Union as well as to any historical or and mental health of those with IDD value, and matter, along with federal cultural ties to “Mother Russia.” My throughout their lifespan was not and international policies all exist to visit to Ukraine and my interactions being done, and tremendous inequalsupport and strongly encourage that with a growing number of Ukrainians ities of care exist. This is leading to a these various practices of care be defrom inside the country provided a real high rate of morbidity and mortality of livered. The scope and breadth of care sense that they wish to be a part of the those in Ukrainian institutions. Tragidelivery, however, even in more soglobal community, and share their cul- cally, it is very possible that those who cially forward minded countries, still ture, and work with others. What I am are even more fragile when born may lags behind what many of us would only beginning to understand is how not survive the first few days or years deem to be adequate services for this this translates to the specific issues of of their lives. population which is still all too often those with IDD. What are actions that can make a devalued and marginalized, including The Ukrainian government, from the difference? What is a difference that in the United States. federal level all the way down to the “matters”? I suppose this is all in Bringing these health standards local level, must appreciate what we your perspective and what is viewed into Ukraine and having them syswould consider basic human rights for as meaningful and as something that temically embedded into their society those with IDD. One key basic right you can realistically do. I know many at all levels will take an enormous is to live with your family and be a Americans are very generous and amount of time and effort— from

“

34 | HELEN • helenjournal.org

within Ukraine, and also from the international community working with various key sectors who would employ the education, training and much needed resources.

of Adults with IDD, I have been in discussions with the AAN to help determine who can be more supportive of Ukraine, especially those with IDD who have a predominance of

ments in state and federal care and supports for those with IDD and their caregivers.

Actions are louder than word. Each of us has the power to make a difference. Creating awareness by just talking about it, and creating noise helps build momentum. If you have some level of knowledge and influence within your own organization and can chat with your leadership to reach out to like-minded colleagues in Ukraine, why not start now? If you and your organization have it within their mission and discretion to put together a task force and reach out to others like ours in the US, plus those in Europe and within Ukraine, then why not do it?

Yuliya Snyder, is a pediatric neurologist born and trained in Ukraine and living in Rochester New York.

She has been instrumental in helping to get much-needed medical supplies to hard it Kharkiv. (‘It’s just amazing’: Rochesterians help doctors on ground save lives in Ukraine | RochRichard Engel with his wife, Mary Forrest, and Henry. Courtesy Richard Engel esterFirst).

All efforts, big and small, matter There are a number of public health neurologic complications including and can make a difference! The world colleagues and healthcare specialists spasticity, autism, and cerebral palsy. community is what we make of it, a in Ukraine now who, no doubt, are All of these conditions have neurofamily of others who share many of in a position to work together to help logic standards of care in which the our same daily issues. make a change. Some of the challengAAN and the AADMD and other es include the war, fragmentation of organizations can help to work with care across the country and within those in Ukraine— to help ensure that Seth M. Keller, MD is a board-cervarious regions, as well as cultural these standards can be implemented. indifferences and priorities.

We have been having discussions with tified neurologist in private practice Since the beginning of this war, a a number of Ukrainian leaders in IDD with Neurology Associates of South number of our US-based IDD support and healthcare fields. We will be hold- Jersey. He specializes in the evaluaorganizations have been working and ing a webinar sponsored by the AAD- tion and care of adults with Intellectual and Developmental Disabilities connecting with key European IDD MD called Healthcare for Ukrainians (IDD) with neurologic complications. organizations, including the Europewith IDD: A Country in Crisis on Dr. Keller is on the Executive Board of an Association of Service Providers September 20, at 12 pm EST. (https:// the Arc of Burlington County, as well (EASPD). This group has been very aadmdconference.com/webinars) as on the board for The Arc of New supportive of people with IDD from This webinar, will include Ukrainian Ukraine who became refugees after healthcare providers and advocates, as Jersey Mainstreaming Medical Care Board. Dr. Keller is the Past President the war began. Over the past several well as those from the US supporting of the American Academy of Develmonths, attention for their supports IDD care, including myself as well opmental Medicine and Dentistry continue to be provided, but also help- as from Special Olympics. The panel (AADMD). He is the co-president of ing in possibly returning back to their will be moderated by Nancy Thaler. the National Task Group on Intellectuhomes if at all possible.

Many will recognize her for all the al Disabilities and Dementia Practices As a leader in the American Acadyears in which she helped to spear(NTG). emy of Neurology (AAN) Section head efforts that have led to improvehelenjournal.org • HELEN | 35

Framing the

Future A partnership grows as the medical community embraces a more equitable model of inclusion and proficiency in relation to patient care and aging.

By Kelly Spina, LMSW

E

ven in 2022, with many healthcare advancements and drives towards more social and medical equity, there are still inclusion and representation obstacles that people face in relation to healthcare. People with Developmental Disabilities (DD) are no different, especially as they age. They want to be seen for the person they are, not just for their presenting symptoms or, in this case, disability. According to the Center for Disease Control (CDC), DD is defined as “a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime” (Holm, 1989).

ADAPT Community Network, in partnership with Positive Exposure has been working to address these disparities, particularly in the aging community. ADAPT Community Network, formerly known as the 36 | HELEN • helenjournal.org

United Cerebral Palsy (UCP), is a nonprofit organization that, for the last 75 years, has been proving services to people diagnosed with DD and their families across New York state.

Mission-driven, they aim to empower people through innovative solutions using a person-centered approach.

Additionally, they are a leading human service not-for-profit and a pioneer in providing cutting-edge programs and services for people with disabilities.

“Every day, we build a more inclusive world for thousands of New Yorkers through education, technology, health, residential and recreational programs in all five boroughs.” (Home - ADAPT Community Network, 2022).

Positive Exposure is a nonprofit organization that promotes an inclusive world through photography, film, educational programs, exhibitions, lectures, and workshops, says Rick Guidotti, the organization’s founder. For the last 25 years, they have

collaborated globally with nonprofit organizations, hospitals, medical schools, educational institutions, and advocacy groups to promote a more equitable and compassionate world where individuals and communities at risk of stigma and exclusion are understood, embraced, and celebrated’ (About POSITIVE EXPOSURE Positive Exposure, 2022). The organization was started after Rick had been established globally as a high fashion photographer and in response to seeing a lack of diversity in the modeling world. Through his work and advocacy, an everlasting impression has been left that redefines beauty, community, and norms.

This partnership is made possible through FRAMES (Faces Redefining the Art of Medical Education). “Our FRAME initiative is a web-based film library that is changing how medical information is presented to healthcare providers in training, practitioners, families, and communities,” Rick

states. “Each brief film weaves critical medical information with personal and lived experiences, placing humanity at the forefront of medical education and training.” He and his team have started with five short films in various areas, including aging, dermatology, mental health, oral hygiene, and rare diseases.

Through this partnership that emphasizes representation of lived experiences, ADAPT Community Network and Positive Exposure aim to increase awareness within the medical community of the inequities and existing cultural biases – and the impact of disability at the intersections of race and ethnicity on quality of life and health outcomes. Both groups hope that these quality trainings will promote an awareness of the fallacies that exist, so

munity Network for the last 60+ years.

Under the bright lights of the set, resting comfortably in her chair and exchanging quips with the crew, she explains how her aging has contributed to slowing down; noticing too that in a lot of ways, the disability disappears and blends more with typical seniors.

Seniors who are only just now experiencing symptoms which have been attributed to the DD population for the duration of their life, which included conditions like mobility impairment, loss of muscular use, diminished abilities in hearing and vision. “I have had to fight to be heard in doctors’ offices my whole life. They like to assume they know before they hear me, but only I know,” Della says with a coy smile of confidence. “Sometimes I’m not even bothered be consulted I have had to fight to be heard to with. They’ll ask in doctors’ offices my whole my aide or respond them with my life. They like to assume they to questions.”

This isn’t revoknow before they hear me, lutionary or new but only I know. information. People with disabil- Della Livingston, 75 years old ities often report feeling overlooked practitioners can be more equipped to or unseen at their own medical apsupport diverse patients and clients as pointments and therapies, and the they launch into their careers. concerns just escalate from there. This “We have identified an urgent need is especially true when introducing the for future multidiscipline healthcare complexities of aging on top of it. teams to have a more robust and Denise Farmer, who will be turning interpersonal understanding of diver60 this year, reflects. “Sometimes, I sity across the social determinants have something going on, and they of health. Through this project, med want to believe it’s related to my students will have access to firsthand diagnosis or something I already have experiences that will shape them going on. But I want to be checked professionally to be better at treating, and ensured it’s not something new, training, and supporting patients,” just because I have this preexisting Rick boasts. He hopes that these projcondition. I want to hear options and ects will leave an everlasting effect on solutions as well so I can still do the the field and infuse more sensitivity to things I enjoy as I get older.” She’s diverse, yet underrepresented populahad a lifetime of fighting and advocattions. ing for her healthcare. The message On set, Della Livingston, age 75, Denise really wants to convey to reflects on her experience growing up practicians is that there’s a better way with cerebral palsy. Della has been to see and treat patients. receiving services from ADAPT ComThe hope is that things look up

from here and that newly-aging DD and non-DD populations can look forward to more robust and adequate healthcare. One that includes them in medical trainings, represents them in informationals, and promotes learning from past mistakes of former physicians.

“The future has a lot to look forward to,” says Alicia Holness, Director at ADAPT Community Network where Denise and Della attend. “These initiatives and these agencies ensure that a bright and equitable future of healthcare is within the grasp of all and that we can be a generation that learns how to deliver better services that are inclusive and sensitive to all.”

“

Kelly Spina, LMSW has been in the field of social services and developmental disabilities for over 10 years.

In her current role as Senior Coordinator of Operations, she oversees the Day Habilitation division for ADAPT Community Network (formally United Cerebral Palsy of NYC). Kelly has her Master’s degree in Social Work and is a licensed therapist and researcher.

REFERENCES 1. ADAPT Community Network. 2022. Home - ADAPT Community Network. [online] Available at: <https://adaptcommunitynetwork.org/> [Accessed 26 July 2022].

2. Holm, V., 1989. Developmental Disabilities: Delivery of Medical Care for Children and Adults. JAMA: The Journal of the American Medical Association, 262(20), p.2935.PE Web 3.Positive Exposure. 2022. About POSITIVE EXPOSURE - Positive Exposure. [online] Available at: <https://positiveexposure.org/ about-the-program-2/> [Accessed 24 July 2022].

helenjournal.org • HELEN | 37

Dancing the

Neural Tango: EDUCATIONAL OUTREACH

M

By Dr. Martha Summa-Chadwick, DMA Steve Weiser

38 | HELEN • helenjournal.org

usic is deeply woven into the fabric of human civilization. Ancient artwork from the earliest human cultures suggests that music was once used as an early form of communication. Ongoing science-based research now confirms that music can play an essential role in brain development by helping to promote neuroplasticity. Most people think that listening to their favorite music is a delightful form of entertainment or a lovely spiritual experience, without realizing that music can also be utilized as a powerful therapeutic modality.

Biomedical music protocols can assist people with motor, speech, and cognition challenges, including stroke, autism, dementia, traumatic brain injury, and many other diagnoses resulting from rehabilitation challenges due to trauma or disease and intellectual and/or developmental disabilities.

An extraordinary amount of excellent research highlighting these benefits has been published in neuroscience journals

:

for the last three decades. Unfortunately, this knowledge has not filtered down to the consumers who would directly benefit from such knowledge, such as physicians, patients, and therapists. Concurrently, statistically significant data from large-scale clinical trials are lacking to confirm the efficacy and the cost-effectiveness of music protocols in therapeutic use. As a result, insufficient business plan models are available to medical CEOs and university chancellors to justify expanding music therapy programs; only a few medical/educational professionals are currently interested in implementing music in their own regional hospitals, therapy centers, and school systems.

The 501(c)3 nonprofit organization Music Therapy Gateway in Communications (MTGIC) was founded in 2002 to help bring this knowledge of the powerful connection between music and the brain to both the medical profession and directly to the consumer. Advocacy concerts, presentations, residencies, and educational guidance to raise this awareness have focused on many different audiences, including physicians, therapists, educators, musicians, parents, and caregivers, to stretch the paradigms of bringing this knowledge into an expansion of music in healthcare.

One of MTGIC’s most effective outreach projects has been an annual concert series (beginning in 2013)

called Chamber Music for Body and Soul. Most people attend a concert to hear music they love; this concert series achieves that goal and helps the audience learn something new about how music works with the brain.

These events feature works by composers with neural afflictions, paired with pre-concert lectures to explain how the condition may have affected the composition process. Forms of dance are also featured, so that the audience can directly experience the power of “muscular entrainment” as they are encouraged to tap a finger or a toe along with the music.

This concert format reached the interest of strategic musical personnel in Erie, Pennsylvania, in 2015, when MTGIC collaborated in a weeklong residency of concerts and presentations with Gannon University, the Erie Chamber Orchestra, and the Barber National Institute. The response to these events was very positive, and more collaborative efforts were soon under way between the Erie organizations and MTGIC. During the 2020 pandemic lockdown, when live concerts were not possible, MTGIC and the Erie Philharmonic collaborated to create a unique video learning series called “The Neural Tango” to educate their audience in various elements of music and the brain. For the Erie Philharmonic, these efforts are part of ongoing community engagement initiatives.

Erie Philharmonic outreach projects also include working with children at the Barber National Institute.

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music is used as a direct pathway to activation of nonmusical networks, such as gait, executive functioning, attention span, and speech.

The benefits of potential collaboration between music therapy and physical therapy professionals are Dr. Martha Summa-Chadwick and Craig Stevens discussing biomedical music protocols in the Neural Tango video series. spoken of in detail, in addition to a thoughtful conversation regarding of The video series brings together fied Music Therapist and founder and the differences between music therapy skilled professionals in music, educaowner of Lake Erie Music Therapy; and music enrichment. The importance tion, physical therapy, music therapy, Elizabeth Darling, DPT, Physical of music education, the potential of and those with personal knowledge Therapist and U.S.A. Olympic team music for pain management, and the of working with persons challenged trainer; Martha Summa-Chadwick, impact with disabiliof music ties. The expert to help panel includes with Daniel Meyer, This video series was designed as a model incluconductor and sion for Music Direcof the strength of output made possible when persons tor of the Erie professionals with different backgrounds sit with Philharmonic; disabiliSteve Weiser, around the same table to help solve a problem. ties and Executive Direcmusic in tor of the Erie society are also included in the panel Philharmonic; Brian Hannah, musician DMA, Executive Director, MTGIC; discussions. Another topic reveals that and program host on WQLN, Erie’s and the principal players of the Erie some of the greatest composers in the NPR-affiliate radio station; Maureen Philharmonic string quartet. history of Western music had forms Barber-Carey, Executive Vice PresiDiscussions in the series include of neural afflictions; the panel experts dent of the Barber National Institute topics regarding the specific applidiscuss how these challenges likely in Erie; Craig Stevens, Board-Certications of music therapy and how

“

The Organizations Erie Philharmonic: The mission of the Erie Philharmonic is to strengthen the Erie community and region by providing high-quality live orchestra concerts and programs that enrich, entertain, and educate people of all ages. In existence since 1913, the Philharmonic is one of the oldest professional ensembles in the country and is recognized on a national level as one of the top orchestras in its budget size. With a season that features 13 mainstage performances at the Warner Theatre, various summer programs, a free chamber music series, four Youth Concerts and numerous outreach events, the orchestra reaches more than 50,000 people across the region annually. (www.eriephil.org) 40 | HELEN • helenjournal.org

Music Therapy Gateway in Communications (MTGIC): The mission of MTGIC is to 1.) disseminate information regarding biomedical music protocols through concerts, lecture concerts, or concert workshops, 2.)

Encourage and facilitate open discussion for music in medicine and education by bringing together groups of researchers, doctors, therapists, behavioral specialists, educators, musicians, parents, and caregivers to create innovative musical solutions for those with psychosocial, motor, speech, or cognition challenges. (www.mtgic.org)

made these individuals even better composers despite their disorders. The series also includes an in-depth discussion of the amazing changes that occur in the brains of long-term musicians as neuroplasticity fuses the auditory and motor systems.

The final module unifies all the information into an experiential performance of Beethoven’s String Quartet in F minor, Op. 95, specifically performed for this video series by the principal players from the Erie Philharmonic. Referred to as the “Serioso” quartet by Beethoven himself, it is the shortest of all his string quartets but seems to reflect the emotional state of Beethoven’s own life as he sank deeper into complete deafness. The opening movements portray struggle, rage, and the depths of despair. Finally, at the end of the last movement, the emotions shift suddenly from hopelessness to a feeling of joy and triumph of the human spirit. This experiential performance mirrors how wonderfully music can help those with motor, speech, and cognition afflictions rise to the challenge of creating a better quality of life through music.

This video series was designed as a model of the strength of output made possible when professionals with different backgrounds sit around the same table to help solve a problem. It is a free resource that can be utilized by any person or organization who would like to educate their audience in the benefits of music and the brain, and can be found on the Erie Philharmonic website at https://eriephil.org/neuraltango. By collaborating on this project, MTGIC and the Erie Philharmonic have provided a platform directly to the consumer for raising awareness about the benefits of music and the brain. Once societal awareness is raised, there will be much greater ease in promoting music into the mainstreams of healthcare and education, where so many people would benefit.

Indeed, music has the potential to revolutionize healthcare.

Martha Summa-Chadwick, DMA, has achieved a national reputation as an educator, presenter, performer, and advocate for the cause of music in therapy. She is Executive Director of the nonprofit organization Music Therapy Gateway in Communications.

Steve Weiser, Executive Director, began his tenure with the Erie Philharmonic in August 2015. As a percussionist with the orchestra for three seasons, Mr. Weiser has helped usher in a new era for the 108-year-old organization, now performing in a stunning, newly renovated Warner Theatre.

RESOURCES Recommended Books: Levitin, D. J. (2006). This is your brain on music: The science of a human obsession. New York, N.Y: Dutton.

Sacks, O. (2007). Musicophilia: Tales of music and the brain. New York: Alfred A. Knopf.

Thaut, M. H., & Hoemberg, V. (Eds.). (2014). Handbook of neurologic music therapy. Oxford University Press.

Recent Sample Articles: Gassner L, Geretsegger M, Mayer-Ferbas J. Effectiveness of music therapy for autism spectrum disorder, dementia, depression, insomnia and schizophrenia: update of systematic reviews. Eur J Public Health. 2022 Feb 1;32(1):27-34. doi: 10.1093/ eurpub/ckab042. PMID: 34595510; PMCID: PMC8846327.

Speranza L, Pulcrano S, Perrone-Capano C, di Porzio U, Volpicelli F. Music affects functional brain connectivity and is effective in the treatment of neurological disorders. Rev Neurosci. 2022 Mar 24. doi: 10.1515/revneuro-2021-0135. Epub ahead of print. PMID: 35325516. van Vugt FT, Hartmann K, Altenmüller E, Mohammadi B, Margulies DS. The impact of early musical training on striatal functional connectivity. Neuroimage.

2021 Sep;238:118251. doi: 10.1016/j.neuroimage.2021.118251. Epub 2021 Jun 8.

PMID: 34116147.

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By Carly Sharec

All In is All Out

All In participants. Courtesy Annandale Village (Facebook @LineAllIn22)

Annandale Village’s “All In” participants can live in homes of their choice throughout the metro Atlanta area

N

estled near the foothills of the north Georgia mountains, just 30 miles northeast of Atlanta, Annandale Village has served as a residential community for adults with intellectual and developmental disabilities and acquired brain injuries for more than 50 years. The idyllic setting – originally a working farm – is 55 acres of pure bliss, where these extraordinary individuals are able to live their lives at varying stages of independence. From independent living to skilled nursing and everything in between, Annandale’s “Villagers,” as they proudly call themselves, are able to experience a full continuum of care throughout their lives, making Annandale one of only three programs in the United States offering this full spectrum of service and care.

But with a mission of providing “progressive life assistance,” a persistent Villager who was eager to gain skills and live in the community, and a visionary CEO with a clear roadmap for the future of Annandale, one miss42 | HELEN • helenjournal.org

ing puzzle piece has recently snapped into place – the introduction of an independent community-based living program.

“We first began establishing the framework for this program in our initial strategic plan back in 2014,” explained Annandale Village CEO and President Adam Pomeranz. “We recognized this need for independent community living and support, both on a wider level as well as due to the keen interest of Jay, who lived at Annandale Village at the time.”

The vision came to fruition in 2018, when what was then simply known as the Independent Living Program first launched, with Jay as the inaugural participant.

“I was ready to take the next step in my independence,” Jay said. He first moved to Annandale Village in 1996, and with the assistance and support of the Annandale team, immediately began working on developing independent-living skills.

“Jay was eager to live in the community,” Pomeranz said. “He is really

the driver behind the addition of this program to Annandale’s services. To this day, I love sharing the story about how he approached me with his dream of a community-based program.”

The program added two new participants in 2019 and was making great strides toward continued growth, when the COVID-19 pandemic in 2020 temporarily halted those plans. But rather than sit idle, the Annandale team recognized the need for more inclusivity and more individualized support for adults preferring to live in the community with minimal assistance.

This is when Pomeranz introduced a new member to the team – Jeff Metzger, an educator and someone who has worked extensively with children and young adults with disabilities throughout his career. Metzger joined the independent living program in 2021 with the charge of rebranding and building, per Annandale’s current strategic plan and vision.

“What I kept seeing in working with students and young adults was that we were doing a great job in the school

systems of working on employment skills and soft skills, but we were not tackling independent living skills at all,” Metzger said. Under Metzger’s guidance and leadership, as well as the development of a taskforce including staff, community members, current and prospective families and referral sources, the independent living program was officially rebranded as All In in 2022.

“The taskforce was drawn to the name ‘All In’ by definition – to be fully committed to something,” Metzger explained.

Along with a new name came a new logo and fresh look – a hexagon shape representing compassion, harmony and balance.

All In participants are able to live in apartments or homes of their choice throughout the metro Atlanta area; many have opted to remain near the Annandale Village campus, both in order to be closer to each other and

also to be able to take part in the vast amount of services Annandale offers.

Under Metzger’s guidance, All In has grown to nearly 10 participants.

A life coach was recently added to the team to further support the participants in their life goals. The individuals work closely with Metzger and the life coach to build individualized, personalized plans suiting their respective needs.

Participants can have anywhere from one to up to 12 hours per week of extra support from Metzger and his team, including daily check-ins, healthcare coordination and wellness visits and 24/7 on-call services for emergencies as well as continued life skill straining and basic employment services.

“My first goal coming in was to listen to the current participants and learn what they want,” Metzger said.

“And they all want the program to grow, which was very encouraging!”

They want more interaction not just with each other but within the community, and not just via work but by volunteering and with other social opportunities.

As for Jay, it’s a “dream come true” from when he first visited with Pomeranz and shared his idea of living in the community. “The patience of waiting for All In to be established could be difficult at times!” he added, laughing.

“But do what you gotta do, and your dreams will eventually come true.”

The mission of Annandale Village as well as the All In program is to provide progressive life assistance to adults with developmental disabilities and acquired brain injuries so that they can maximize their abilities and maintain their independence in the least restrictive environment. For more, visit annandale.org and liveallin.org.

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. helenjournal.org • HELEN | 43

THE MORE YOU UNDERSTAND HER WORLD, THE MORE POSSIBILITIES YOU SEE. For Julia’s family, early screening for autism made a lifetime of difference.

Find out more at ScreenForAutism.org

© 2019 Sesame Workshop. All rights reserved.

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Celebrating the ADA Challenging Health Care Inequities For 38 years, as one of the smallest federal agencies in all of government, NCD has people with disabilities across the United States and in our territories. The most on the need for robust civil rights protections for people with disabilities and we authored the initial draft of the Americans with Disabilities Act (ADA).

On July 26, 1990, President George H.W. Bush signed the ADA into law, recognizing the decades of struggle for Americans with disabilities to achieve equality in their daily lives. The landscape of the country changed for the better as a result.

Now, 32 years after the ADA, NCD is urgently calling on Congress and the Administration to act once again – this time, to address the longstanding health disparities and healthcare bias that people with disabilities continue to experience, and at times, at the cost of their lives.

Doctors can’t better treat people with whom they don’t have experience. People can’t get better care if they cannot get on an examination table. We cannot expect paint the fullest picture of the need if we’re not being counted.

Comprehensive disability clinical care curriculum and training; adoption of enforceable accessible medical and diagnostic equipment standards; designation of people with disabilities as medically underserved coupled with their designation as a health disparities population; and better federal disability health care data are four pillars that will help us turn the tide.

Andrés J. Gallegos Chairman, National Council on Disability

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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.

46 | HELEN • helenjournal.org

aadmd.org