Helen Journal - Issue 2

ISSUE NO. 2 JULY 2022

Diagnostic Overshadowing:

PITFA

LLS

OF PREJUDICIAL THINKING

SLEEP APNEA and

DOWN SYNDROME PART ONE

How and Why Seth Keller, MD Ended Up in Ukraine

2022 AADMD Meeting

ENDORSED BY

helenjournal.org • HELEN | 1

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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Contents

28

Diagnostic Overshadowing: The Pitfalls of Prejudicial Thinking

By Emily Johnson, MD

Missed diagnoses arise from knowledge-based errors as well as a variety of bias-based errors

32

12

Sleep Apnea & Down Syndrome

Aging & Dementia

By Hampus Hillerstrom

By Seth Keller, MD and Marianne Barbera

Sleep apnea is a potentially serious disorder that affects more than 50% of children with Down syndrome and more than 80% of adults with Down syndrome.

The Role of The National Task Group on Intellectual Disabilities and Dementia Practices

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Contents Volume 1, Issue 2

32

24

42 COLUMNS

FEATURES

6 Nothing is Written

18 A Royal Shame

The Case of the Elephant, the Bridge, and the Determined Parent

By Rick Rader, MD, FAAIDD, FAADM

11 Creative Corner

Poem: Go Places in my Mind

By Amanda Harrinauth

20 AADMD

Reporting the Evolving and Increasing U.S. Population with Disabilities

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

42 Journeys

I Went to Hollywood and Got Myself Some Clout

By Edward Barbanell

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By Rick Rader, MD, FAAIDD, FAADM

24 How and Why I Recently Visited Ukraine

By Seth Keller, MD

36 Say Cheese: A Brief History of Medical Photography

By Rick Rader, MD, FAAIDD, FAADM

40 Health Equity for People with IDD

By David A. Ervin, BSC, MA, FAAIDD

46 The Gathering of the Big Three at

the AADMD’s Historic One Voice for Heath Inclusion Conference

By Rick Rader, MD, FAAIDD, FAADM Allen Wong, DDS, EdD, DABSCD

ON THE COVER: Main photo by Rick Guidotti - positiveexposure.org Inset photo by Karen Tiu

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

THE CASE OF

t n , a the Bridge, h p e l E e th and the

Determined Parent

I

was duped.

Growing up, thanks to my vast comic book collection, I believed that Superman was the Man of Steel.

It was not until I took a college economics course that I learned that Andrew Carnegie was actually the Real Man of Steel.

The mid-1800s saw incredible innovations across America. We saw the development and distribution of railroads, cameras, telephones, electric lights, and oil supplies. Not to be overshadowed by those behemoths of ingenuity, we also saw the invention of Levi Strauss and his “blue jeans.”

The major mode of transporting goods was with steamboats. When rail cargo was offloaded, it was put on steamboats, ferried across the wide and swift Mississippi River and then reloaded onto other trains. The major obstacle was the Mississippi River and constructing a bridge across it was thought to be “unbuildable.” Up until this time, “iron” was the material that built America. Iron machines were in6 | HELEN • helenjournal.org

vented to do the work on farms, in factories, and buildings.

At the onset of the Civil War, Carnegie, an immigrant from Scotland, owned the Keystone Bridge Company. It was about this time that a civilization-changing discovery was made. When you took a mixture of iron and carbon metals from the earth, heated them at very high temperatures, you wound up with steel, a material that was stronger than iron.

Jo Carol Hebert, writing in Smarty Pants Magazine for Kids (that’s really the name!) brings the story forward: “In 1867, Carnegie sets out to do the impossible. Build a road-railway bridge across the wide waterway to the Mississippi River to St. Louis. It was the longest bridge ever and the first time to use steel on a large scale. The bridge would not only span the river, it would link the East of America to the Western Frontier.” So, this was a big deal.

From the very beginning, it was a project with a vast array of problems, frustrations and financial setbacks; but

Why Helen?

Carnegie was tenacious, and seven years later, the bridge was built and ready for the first public crossover.

At the time, bridge building was apparently not an exact science. One in four bridges failed, and trains, passengers, and cargo were thrown into a watery grave. The public was expectedly both skeptical and cynical about this steel stuff, and no one was willing to be the first to test it out.

Carnegie was faced with a bridge with no takers and started to hear it referred to as “Carnegie’s Folly.”

Carnegie had heard that elephants had a natural instinct that would cause them to hesitate to walk across foundations that were unstable and unsafe. They used their trunks to test the structural integrity of surfaces and only placed each foot in tested spots.

On the opening day of the bridge, Carnegie found the biggest elephant around and proceeded to have him march across the bridge. The elephant stepped lively and never hesitated.

The Eads Bridge, named after the designer, still stands today, over a hundred years since that pachyderm sauntered across the bridge.

While it took an 11,000-pound beast to demonstrate how we can rely on the strength of things we built, it only takes a 120-pound female (give or take) to demonstrate how strong her resolve is regarding the strength of parents of children with special health care needs.

The disability rights movement is currently the strongest, most influential and steadfast in its history. It evolved because of the discovery that if you take equal parts of parental anger, frustration and determination, and mix it with equal parts of collaboration, diligence and perseverance, and heated them at high temperatures, you’d wind up with something steel-like – something we call, “Human Exceptionality.”

“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.

- Rick Rader, MD, FAAIDD, FAADM

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.

She lost her sight and hearing at the age of 19 months, in an age where there was no early intervention, no special education, no bona fide therapies, and little hope for individuals with severe disabilities. She became the first deaf-blind person to earn a Bachelor of Arts degree, wrote 14 books, and delivered hundreds of speeches. She campaigned for women’s suffrage, labor rights and world peace, supported the NAACP, and was an original member of the American Civil Liberties Union. She visited 35 countries around the globe, advocating for those with disabilities.

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.”

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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.

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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.

Reducing barriers.

Improving access.

Driving change.

Together.

Delta Dental of Michigan, Ohio, and Indiana is the first dental benefits administrator in the nation to offer a Special Health Care Needs Benefit, which removes multiple barriers to oral health care for people with intellectual or developmental disabilities by covering additional dental visits, treatment delivery modifications and more.

Delta Dental and the Delta Dental Foundation are proud to support the American Academy of Developmental Medicine & Dentistry and congratulate them on their inaugural publication.

Together we champion people with disabilities.

Delta Dental of Michigan, Ohio, and Indiana www.vibrantcommunities.com www.deltadental.foundation

Delta Dental is a registered trademark of Delta Dental Plans Association. www.deltadental.com helenjournal.org • HELEN | 9

The future of wellness for people with IDD.

Terrence Davis

• Medical • Dental

• Behavioral

• Therapies • Prevention

Kramer Davis is proud to sponsor this inaugural edition of Helen.

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Compassionate, interdisciplinary health care for people with IDD.

CREATIVE CORNER

Go Places in M y Mi So far away and long ago.

nd

We were free to explore the deepest ocean, climb the tallest mountain.

By

Am

and

aH

arri

nau

th

Now, a voice of sadness looms over the world.

Two years and counting isolation, two years and waiting, building frustration.

I pick up a pen, begin to write it all down, painting in the streets of Italy.

The roaring pyramids of Egypt, I want to see you soon.

Sandy white beaches, of Jamaica, Dancing until the sun goes down, I have yet to meet you.

Pictures in my mind of places I long to go.

This autistic poet misses seeing the world.

I close my journal as I breathe into the moment.

As I wait, let’s hope COVID-19 does not intend to stay, this deadly virus, only allows me to travel In my mind.

Amanda Harrinauth is a poet, author and life coach with disabilities. She is a disability empowerment coach. She discovered the power of poetry in 2016, after being diagnosed with autism, saying it allows her “to dance with life.” She also believes poetry has healing properties. helenjournal.org • HELEN | 11

Aging AND

Dementia

The Role of The National Task Group on Intellectual Disabilities and Dementia Practices

By Seth Keller, MD

P

eople with Intellectual and Developmental Disabilities (IDD) are living longer than ever before. Over the past 50 years, there have been a growing personal, social and cultural awareness and sensitivity to the rights and needs for those with IDD and to those that support them throughout their lifetime.

Growing older allows all of us to enjoy life as it unfolds and to gain from it as much as we can. We can all appreciate that aging also will have an impact upon us physically and mentally. One aspect of aging is how our minds will change. Short-term memory and the ability to pull out of our minds infor12 | HELEN • helenjournal.org

mation that is stored will naturally be slower, which is all a part of the normal aging process. We even have an expectation of what the aging process is like, based on these experiences and knowledge “normal” aging.

But what of those who have had a life-long disability, and what of those in particular, who have Down syndrome? What do we expect for them as they grow older? Supporting people with IDD has always focused on early intervention, but the focus on adult care and supports, and in particular on geriatrics, has not gained attention until very recently. This absence of awareness has led to a tremendous

amount of ignorance as to what the aging process is like and on how to best support it.

The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) was created in 2010 to fill in the wide knowledge and supports gap which had existed until that point. Individuals, their families/ caregivers, support organizations, and healthcare supports, all were in the dark when decline of function began to occur—specifically, what to do, how to provide assessments, diagnostics and care, especially if Alzheimer’s disease (AD) was found to be the cause of the decline. This tremendous lack of sup-

“

People with Down syndrome have a very high risk of developing early onset Alzheimer’s disease due to their genetic predisposition of having an extra copy of chromosome 21, which leads to an early accumulation of beta amyloid protein in the brain.

ports leads to a great level of frustration, uncertainties, and often significant turmoil as the progression of the disease continues, ultimately leading to a tragic end…death.

Many people with IDD who have had some degree of a baseline cognitive or intellectual dysfunction throughout their lifetime, will most notably also have additional normal cognitive decline as they age. This decline may be subtle and some may not be so. The ability to know the change is part of the normal aging process or a sign of an illness or disease, including Alzheimer’s disease or some other form of dementia which may be very difficult to determine. People with Down syndrome have a very high risk of developing early onset AD due to their genetic predisposition of having an extra copy of chromosome 21, which leads to an early accumulation of beta amyloid protein in the brain. This protein is thought to be one of the main contributors leading to AD. People with DS will develop AD, with some estimates as high as 60% by age 60.

The NTG needed to ensure it had the

expertise and dedication of its leaders to be able to provide the much-needed level of education, training and supports. We absolutely needed people who had a personal vested interest in the issues at hand. Family advocacy has become a prominent part of the NTG. We were thrilled to meet Marianne Barbera, who has been involved in special education and supporting her aging father, as well as her sister with Down syndrome. Nothing prepared her for when her sister began to show signs of decline.

Marianne’s story about her sister, Susan, is very similar to many others who were shocked and dismayed about the decline and the realization of what came next. Many families and caregivers across the country and around the world who support individuals aging with IDD, and in particular DS, will often face some level of decline of function.

The NTG will help to provide the much-needed education, training, and advocacy that is sorely needed, as there are significant barriers and ongoing disparities that remain. Working together with national, state and local

I/DD and aging organizations is instrumental in being able to help further along the important care and supports required—as the number of individuals with age-related decline and dementia increase. We personally appreciate the issues, and are sensitive to the needs and concerns that aging has to those with IDD and especially those with Down syndrome.

Seth M. Keller, MD is a board-certified neurologist in private practice with Neurology Associates of South Jersey. He specializes in the evaluation and care of adults with Intellectual and Developmental Disabilities (IDD) with neurologic complications.

Dr. Keller is on the Executive Board of the Arc of Burlington County, as well as on the board for The Arc of New Jersey Mainstreaming Medical Care Board. Dr. Keller is the Past President of the American Academy of Developmental Medicine and Dentistry (AADMD). He is the co-president of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). helenjournal.org • HELEN | 13

My Sister Susan’s Story

By Marianne Barbera

T

ruth be told, my family and I thought we had everything in place for my sister Susan, or at least this is what we thought. Local agencies provided services for my sister and we felt, “if it ain’t broke, don’t fix it.” In other words, if my sister was receiving the proper care and services for all aspects of her life, and we were satisfied with them, why look elsewhere?

In fact, other than The Arc, we were unaware of other national organizations specific to Down syndrome. What we never knew was that looming in the background was my sister’s accelerated aging due to the greater propensity of individuals with Down syndrome to age sooner and develop dementia at a much earlier age than neurotypical individuals. Had we known about the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), we would have had an idea of what might be part of my sister’s life in her later years.

In January 2016, just a few weeks after celebrating Christmas and my sister’s birthday - her most favorite 14 | HELEN • helenjournal.org

Susan with hea

same as she did in her mid-20s!

And, of course, her vibrant, carefree personality was the same too. To me, there were no signs of aging. She didn’t develop wrinkles and gray hair, nor did she do anything differently since Marianne an d Susan day of the her late 20s - she had her day year - it was mentioned to program, residence, family, and me by her group home manager that friends. She reached her potential and she and other staff had been noticing we were all satisfied and content with changes in my sister’s ability, and they her life, especially my sister. The only wanted to know my thoughts. They aging that was noticeable was with my were also interested in having her father, a World War II veteran, who checked medically for early onset of did develop increased medical issues dementia. and physically showed signs of aging.

I was shocked and in disbelief as But not my sister. And there was no this didn’t make sense to me. My sisreason for me to even consider the ter was in her 40s and, to me, demennotion that she was aging internally at tia was something that happened to the an accelerated rate. elderly, not my spry, vivacious, loving If anything was different, it was my sister. Especially not at her current belief that if my sister had any changage. My sister actually looked the es, it was attributed to her having

Susan

and he

r dance

“

My sister was in her 40s and, to me, dementia was something that happened to the elderly, not my spry, vivacious, loving sister. award

art facepaint

an off day and I would modify things to accommodate her, which was what I always had been doing so it didn’t seem any different now. I visited my sister weekly, whereas her day program staff, and group home staff, spent many more hours and days with her each week; they noticed the changes I didn’t see.

In fact, it wasn’t until she declined that I learned that individuals with Down syndrome and/or other intellectually developmentally disabilities weren’t expected to have the same longevity as neurotypical individuals.

Throughout the years that my sister lived in her group home, some of the older women developed dementia. I always felt sad for them and their families but had no reason to ever

Susan’s 40th

birthday

conclude that this could happen to my sister. To me, there was zero connection. But I was wrong - oh, so wrong.

So, in the beginning, when I first heard the news, it felt like I was run over by a truck - I was completely shocked and unprepared and had so much concern for what might lie ahead for my beautiful baby sister.

This concept was extremely difficult to comprehend, confront and accept. It wasn’t like hearing that she may have asthma or something else that was controllable or curable.

I eventually comforted myself by thinking that since dementia is a very slow progressing disease, that it would be many, many years until my sister

would experience major decline. Sadly, this wasn’t how the disease progressed; my assumption was wrong.

Besides the shock of the potential reality, finding a reputable neurologist that I felt confident with was my primary concern so my sister could receive the best care available. Simultaneously and subsequently, I searched for reliable resources specific to IDD and dementia to guide me, as I felt totally unprepared for what might lie ahead. My quest to find this help, knowledge, and resources was ongoing for years. Much to my surprise, it was extremely difficult to find. My persistence never wavered but, believe it or not, finding a needle in a haystack would have been easier! It just shouldn’t be this way.

Fast forward to February 2021, approximately five years after the initial conversation about my sister’s decline and concern of dementia, I learned about the NTG. I was ecstatic that I finally found an organization that had information and a family support group specific to IDD and dementia. Oh, how I wish I had known helenjournal.org • HELEN | 15

best proceed with the diagnosis, possible treatment, and about the NTG sooner, and how I wish it hadn’t been so an idea of what may lie ahead. difficult to find.

Unfortunately, my sister lived only an additional six Prior to finding out about the NTG, my sister’s doctors months after my learning about the NTG. Each month, I and staff, along with myself, did our best. Yet, we surely attended the family support group, which was so incredwould have benefitted from the knowledge and experibly helpful and supportive for that time period; in fact, I tise of the NTG. My sister exhibited all the signs that continue to attend the monthly meetings - to receive and many individuals with Down syndrome experience when give support. I have made it my priority to become more aging. If we had the specific knowledge from the NTG involved with the NTG, so I can inform family members sooner, it would have helped us to know what to expect of what may be included in and how to handle it. What their loved one’s lives as I learned upon finding the they age.

NTG and reading their vast I never want anyone to resources, many aspects of be without the information, my sister’s decline fit all The NTG’s resources provide resources, and support the tell-tale signs that I read about. It would have been information and insight into this, that is available through the NTG. The NTG has so valuable to have had this which can be of huge help to become an organization information long ago, for not even her neurologist families trying to navigate what that is now very near and dear to my heart. The NTG knew about how my sister’s to do and where to go for help for cannot prevent a family journey would fit into a predictable pattern, and her their loved one exhibiting signs of member’s loved one from aging and/or declining, neurologist was definitely cognitive decline. but it can be a tremendous an extremely knowledgeable source of abundant, invaludoctor and open to learning, able information and supincluding my input. port. So, every day, I am dedicated to spreading the word, Fortunately, my sister’s primary care provider was specialized in providing care for individuals with IDD. So, with my only intent to help others have an easier path on an extremely difficult journey by making families aware when there were signs of cognitive decline, the primary of the resources and support readily available to them, and care provider was aware of other potential medical condito educate them about NTG and the wealth of abundant, tions that could be the cause of decline that often mimic invaluable information available on their website. dementia. Because of this, other medical conditions were ruled out before seeking medical treatment from a neurologist. Had the primary care provider not been experienced with working with individuals with IDD, there would have been the assumption that the symptoms she had caused Marianne Barbera is a passionate family advocate for dementia, when indeed it could have been possible that it IDD individuals, families, and caregivers. This role was was something else. shaped by her lifelong relationship and unbreakable bond The NTG’s resources provide information and insight with her sister who had Down syndrome. Ms. Barbera into this, which can be of huge help to families trying was her sister’s advocate, legal guardian, and cheerleadto navigate what to do and where to go for help for their er throughout her sister’s life. As a result of her sister’s loved one exhibiting signs of cognitive decline. It is also journey with dementia and eventual passing, Ms. Barbera an organization that has extensive information for medical has become driven to bring awareness and resources to professionals. help others so that they are better prepared for what may The NTG is on the cutting edge of information perbe included in their loved-one’s life as they age. Marianne taining to aging and dementia, especially for IDD indiBarbera serves on the board of the National Task Group viduals. This information won’t prevent the illness from on Intellectual Disabilities and Dementia Practices and is occurring, but will inform and guide families on how to chair of the Family Support Committee.

“

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Proud to be a founding sponsor of Helen: The Journal of Human Exceptionality Even prouder of all we’re accomplishing to improve access to care for the millions of underserved people with special needs across the country.

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A Royal Shame The Hidden Cousins of Queen Elizabeth

By Rick Rader, MD FAAIDD, FAADM

Nerissa Bowes-Lyon (left) and Katherine Bowes-Lyon (right)

T

his year marked a major milestone for the British monarchy. The United Kingdom threw a historic celebration for Queen Elizabeth II’s Platinum Jubilee. The 96-year-old queen is the first British monarch in history to reach a Platinum Jubilee, which marks 70 years on the throne. She ascended to the throne on February 6, 1952, following the death of her father, King George VI. As expected, the celebration included everything from the Trooping of the Color Guard, to parades, star-studded concerts, street parties across the country, and a final appearance by the queen herself. No doubt, Queen Elizabeth has been a much loved, respected and revered monarch, and has done much to fortify the significance of the royals when their very existence has been argued as being archaic or dinosaurian.

18 | HELEN • helenjournal.org

Like many families, the Windsors had some hidden secrets. One of which is particularly significant to readers of our publication, HELEN: The Journal of Human Exceptionality. The Queen had two cousins that had intellectual disabilities, and while one would think that they received royal treatment, protection and support, the truth is that they were secretly institutionalized, ignored and abandoned.

The first cousins were named Nerissa and Katherine; they were the daughters of John and Fenella Bowes-Lyon, with the former being the older brother of Elizabeth (the Queen Mother). Both of the sisters were institutionalized in 1941 at the Earlswood Institution for Mental Defectives. At the time, Nerissa was 15 and Katherine was 22.

In 1986, the British newspaper The Sun published an expose about the Royal Family and revealed that the girls were at the institution for 45 years and that the Royals

never visited them or acknowledged vation that occurred in institutions all with the ruthlessness, which I myself their existence. The report indicated over the world. have experienced in this family. Darthat the sisters were born with severe While the Royals disavowed the win had nothing on your lot – shame “learning disabilities” and were comexistence of the sisters during their on all of you.” mitted to the “asylum” at the height lives, their deaths were also ignored In response, the Queen Mother tells of World War II and remained in the and unacknowledged. In an article in Margaret, “Don’t be so naïve. We had care of medical professionals for the 2020, reporter Phil Boucher recounts no choice.” remainder of their lives. To add insult that “Nerissa was buried in a humble While no one can definitely say to injury, the two were listed as dead plot in Redhill, Surrey, with her grave if this conversation was accurately in the 1963 edition of esteemed royal marked by a six-inch plastic marker depicted, and if indeed it every took genealogy guide, Burke’s Peerage. reading simply “M11125 Bowe4s-Lyplace, it is safe to say that the Royal’s In addition to the two sisters, three on.” Only hospital staff attended the response to distancing themselves other second cousins of the Queen, ceremony. Katherine died 28 years from the five cousins was a strategic Idonea, Ethelreda and Rosemary Fane, later on February 23, 2014, having redecision to “protect” the family from were also admitted to the Royal Earls- located to a Surrey care home followthe shame, embarrassment and indigwood Hospital in Surrey. nity that embracing them was All five of the Royals were thought to foster. diagnosed with genetic This was the tragedy of not disorders exhibiting severe The Queen had two cousins supporting, including and emand profound cognitive bracing family members with with intellectual disabilities. impairments. In 2011, in a disabilities. In doing so, the British documentary called One would think they received Royals missed an opportunity to The Queen’s Hidden Cousdemonstrate to British society royal treatment, protection and how they can elevate the fabric ins, medical records from the institution reported that of society by acknowledging the support, but the truth is they Nerissa, “makes unintellivalue and role of people with were secretly institutionalized, disabilities, and how people can gible noises all the time… very affectionate…can say a enrich their own lives by caring ignored and abandoned. few babyish words.” Nerissa for and about them. passed away on January 22, Queen Elizabeth proposed the 1986, at age 66, having spent more ing the closure of the Royal Earlswood following to her subjects, “Families, than 40 years in the institution. in 1997, which has now been convertfriends and communities often find In an interview with retired caregiv- ed into luxury apartments. “Aged 87 a source of courage, rising up from er Dot Penfold, she offered this vision when she passed, Katherine also rests within. Indeed, sadly, it seems that it is of Katherine, “She was no problem to in Redhill, alongside her sister and tragedy that often draws out the most look after, but she was mischievous, their cousins Idonea, Ethelreda and and the best from the human spirit.” like naughty children. Katherine was Rosemary.”

In the case of the royals, their belief a scallywag. You could scream at her When the story broke about the that the existence of Nerissa and Kathand she’d turn a deaf ear.” Both sisters cousins, the Royals released stateerine was a tragedy was overshadowed had no vocalic communication, but ments that the sisters were never by the tragedy of their indifference, they would point and make noises, ignored and that they (members of neglect and abandonment; for this was “and when you knew them, you could the Royal family) paid numerous a case of royal shame. understand what they were trying to visits to see them and spend time with Rick Rader, MD, FAAIDD, FAADM, say. They understood more than you’d them. Inspection of the reports from DHL (hon) is Director, Habilitation think.” Reports of the caregivers the institution indicated that no one Center, Orange Grove Center; Presirevealed that they formed meaningful had visited them in the years spent at dent, American Association on Health relationships with the sisters and proEarlswood. and Disability; Member, National vided more than custodial care. This In “The Crown”, a carefully reis a testimony to the long-standing searched television series about Queen Council on Disability; Board, American Academy of Developmental Medcommitment of direct support profesElizabeth’s life, there is a scene in icine and Dentistry; National Medical sionals and, despite little or no formal which the Queen’s sister, Princess training, their humanism often guided Margaret first learns about her cousins’ Advisor, National Alliance for Direct them even in institutionalized settings. plight and shouts at the Queen Mother, Support Professionals; Board, National Task Group on Intellectual DisabiliOf course, that is not to ignore the “It’s wicked and it’s cold-hearted and ties and Dementia Practices. many instances of brutality and depriit’s cruel and it’s entirely in keeping

“

helenjournal.org • HELEN | 19

AADMD

Reporting the Evolving and Increasing U.S. Population With Disabilities

I

n the past, except for an aged grandparent, individuals with disabilities “did not exist.”

They were sequestered in outof-town institutions or in backrooms of homes. Health professionals had little to no formal educational experiences to provide needed services for these individuals.

Change began in the final decades of the last century. Geraldo Rivera’s 1972 report on “the horrors” in Willowbrook State School in New York State for individuals with mental and physical disabilities became the national catalyst to awaken the public to the desperate needs for change.1 The eventual increasing awareness of the numbers of youngsters and the not-so-young with disabilities filled professional journals and the general 20 | HELEN • helenjournal.org

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

public literature. Movies, television and clinical experiences for the care of and computer reports now provide a individuals with disabilities.2 staggering reign of information about The task is how to compact and the growing population of individuals highlight specific information to with disabilities and their needs. Nevensure an awareness of the needed ertheless, the health profession schools services for the increasing numbers of did not adopt formal requirements for individuals with many disabilities who preparing the next generation of health live in our communities. providers to care for individuals with An estimated 3.5 percent of people disabilities. with disabilities live in institutional For example, it was only by a Table 1 nefarious act by one Civilian population with disabilities: 2010-2020 3 of the writers of this paper (HBW), Total U.S. Population that U.S. dental population with disabilities Proportion and dental hygiene 2010 308,291,000 38,463,000 12.5% schools are now 2015 320,399,000 42,050,000 13.1% required for accred2020 328,294,000 44,862,000* 13.4% itation purposes to provide didactic * Living in the community

n

viduals with disabilities, compared to compared to 37.9% of individuals group quarters, which include nursing 16% of individuals without disabilities with disabilities. (Table 5) facilities/skilled nursing facilities and were binge drinkers. (Table 9) 6. In 2020, 12.0% of metropolitan adult correctional facilities.3 residents, compared to 17.9% of rural The massive 2020 and 2021 UniLet’s not forget about children with versity of New Hampshire Institute on residents, had a disability. (Table 6) disabilities; especially their education.

Disability Annual Disability Statistics In 2017, about 1 in 6 (17%) children 7.

In 2020, 88.4% civilian residents and Demographics are examples of aged 3-17 years were diagnosed with the critical and yet overwhelming data with disabilities and 87.0% without 3,4 a developmental disability, as reported disabilities had health insurance covthat are now available. by parents. erage.

(Table 7) There are situations where summary Some groups of children highlights may be of were more likely to have more value to demonTable 2 been diagnosed with a destrate the dramatic Five states with the greatest NUMBER of civilian velopmental disability than developments in the persons with disabilities: 2020 4 others: numbers and distriBoys compared to girls. bution of individuals Population Proportion of Non-Hispanic White and with disabilities. with disabilities total population non-Hispanic Black children compared to Hispanic California 4,409,000 11.3% For example: children or non-Hispanic Texas 3,573,000 12.2% 1. Between 2010 children of other races.

Florida 3,085,000 14.2% and 2020, there was Children living in rural New York 2,371,000 12.3% an increase of more areas compared to children Pennsylvania 1,857,000 14.5% than 6 million U.S. living in urban areas. residents with disabiliChildren with pubties (from 38.4 to 44.8 lic health insurance million individuals). (Table Table 3 compared to uninsured 1) Five states with the greatest PROPORTION of children and children 4 civilian persons with disabilities: 2020 with private insurance.5 2. In 2020, there were 4.4 million residents with Proportion Population The most common disabilities in California. of population with disabilities type of disability (Table 2) among children 5 years West Virginia 19.6% 350,000 and older in 2019 was 3. In 2020, 19.6% of the Arkansas 19.2% 579,000 cognitive difficulty. residents of West Virginia Kentucky 18.4% 821,000 There were regional were reported to have a Oklahoma 17.8% 711,000 differences in childhood disability. (Table 3) Mississippi 17.8% 523,000 disability prevalence in 2019, with the highest 4. In 2020, among U.S. rates observed in the residents (with wide ranges South and the Northeast and the low8. In 2020, among civilians ages by states): 6 est rate observed in the West.

18-64 years with disabilities living • 27 % had hearing disabilities in the community 45.8% had private • 18% had vision disabilities Special Education - Individuals insurance 53.4% had public insurance.

• 30% had cognitive disabilities with Disabilities Act (IDEA) (Table 8) • 49% had ambulatory disabilities IDEA is the nation’s special educa• 20% had selfcare disabilities tion law. Schools must find and eval9.

In 2020, 21% of individuals with • 37% had independence disabili uate students thought to have disabilidisabilities smoked, compared 11% of ties (Table 4) ties— at no cost to families. individuals without disabilities; 40% To qualify for IDEA services, a of individuals with disabilities were 5. In 2020, among U.S. residents child must have a disability and need obese, compared to 29% of individuages 18-64 years, 75% of individuals special education to make progress als without disabilities; 13% of indiwithout disabilities were employed, helenjournal.org • HELEN | 21

in school. While overall, 14.4% of public-school students were served by IDEA in 2019-20, that number varies by race and ethnicity.

White students - 14.7% served under IDEA Black students - 16.6% Hispanic students - 13.8% Asian students - 7.1% Pacific Islander students -11.2% American Indian/Alaska Native students 18.3% Two or more race students - 15.4% Although research has shown that students often do better in school when they have a teacher of the same race, just over 83.5% of special education high school teachers in public schools are White, according to the most recent data available, but only about half of all students receiving special education services are White, according to 2017-18 data.7,8 Overall: One cannot truly comprehend the full impact (of the almost 45 million women, men and children with disabilities) on the individuals themselves, their families, friends, and the economy of the nation. While economics may be the obvious first factor, the prevailing emotional realities, demands on the full range of health, educational and social personnel, hospitals, nursing homes, assisted living facilities, special school programs and beyond will continue to increase.

Only by a continued comprehensive understanding of the impact on individuals, their families, education, employment potential, the general economy, and so forth in a range of reports, can we expect to plan for the future.

Table 6 Prevalence of individuals with disabilities in urban and rural areas in the United States employed civilians with and without disabilities age 18-64 years living in the community: 2020 4 Metropolitan areas 12.0% Micropolitan areas

15.5%

Non-core areas

17.9%

22 | HELEN • helenjournal.org

Table 4 United States and states with highest and lowest proportion of civilian persons with each disability category (individuals may be included in more than one disability) 4 Type of Proportion of Population disability population with disabilities Hearing

United States Highest - Alaska Lowest - Dist. Col.

27.1% 38.1% 14.7%

11,926,000 32,000 11,000

United States 18.2% Highest- Louisiana 23.2% Lowest- Minnesota 13.3%

8,032,000 176,000 86,000

Cognitive

United States Highest - Maine Lowest - Wyoming

39,7% 45.2% 31.5%

7,472,000 98,000 24,000

Ambulatory

United States Highest - Arkansas Lowest - Utah

49.4% 54.6% 38.2%

21,779,000 315,000 130,000

Self Care

United States Highest - New York Lowest - Utah

20.2% 23.5% 15.0%

8,l916,000 557,000 51,000

Independent

United States Highest - Hawaii Lowest - Wyoming

37.1% 44.9% 28.0%

16,356,000 74,000 21,000

Vision

Table 5 United States employed civilians with and without disabilities age 18-64 years living in the community: 2020 4 Without disabilities 133,949,000 With disabilities 7,975,000 Hearing disabilities Vision disabilities Cognitive disabilities Ambulatory disabilities Self-care disabilities Independent living

75.0% 37.9%

52.4% 45.5% 29.1% 23.9% 14.8% 17.7%

Median annual income full-time civilian workers 18-64 years of age: Without disabilities $50,223 With disabilities $42,504 Civilians ages 18-64 years living in the community in poverty: Without disabilities 11.9% With disabilities 27.8%

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

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).

Table 7 Health insurance coverage United States and states civilians ages 1864 years living in the community by disability status: 2020 4

United States Highest - Mass.

Lowest - Texas

With disabilities 88.4% 97.1% 78.3%

Without disabilities 87.0% 96.3% 75.2%

Table 8 Health insurance coverage - United States and states civilians ages 18-64 years with disabilities living in the community by insurance type: 2020 4

REFERENCES 1. Geraldo Rivera’s 1972 expose of Willowbrook State School.

Available from http://www.preservepennhurst.org/default.aspx?pg=1642 Accessed May 2, 2022.

2. Waldman, H. B. I’m a liar and proud of it. Or, my introduction to reality. Exceptional Parent Magazine. 42:20-21, December 2012.

3. University of New Hampshire. Institute on Disability. 2020 Annual Disability Statistics and Demographics. Available from https://disabilitycompendium.org/sites/default/files/user-uploads/Events/2021_ release_year/Final%20Accessibility%20Compendium%202020%20 PDF_2.1.2020reduced.pdf Accessed April 24, 2020.

4. University of New Hampshire. Institute on Disability. 2021 Annual Disability Statistics and Demographics. Available from: https://disabilitycompendium.org/sites/default/files/user-uploads/ Events/2022ReleaseYear/2021_Annual_Disability_Statistics_Compendium_WEB.pdf Accessed May 1, 2022.

5. Zablotsky B, Black LI, et al. Prevalence and rends of developmental disabilities among children in the US: 2009–2017. Pediatrics.

2019; 144(4):e20190811 6. Young NAE, Childhood disability in the United States: 2019; 3/25/21. Available from: https://www.census.gov/library/publications/2021/acs/acsbr-006.html 7. Riser-Kopitsky, M. Has the number of students served in special education increased? Available from: www.edweek.org/teaching-learning/special-education-definition-statistics-and-trends/2019/12?utm_source=goog&utm_medium=cpc&utm_campaign=ew+specific+content&ccid=ew+specific+content&ccag=special+education+statistics&cckw=disability%20 statistics&cccv=content+specific+ad&s_kwcid=AL!6416!3!591656523530!b!!g!!disability%20statistics&gclid=EAIaIQobChMIqpOFj7be9wIVkrjICh16FAgnEAAYASAAEgI_XPD_BwE Accessed May 14, 2022.

8. Lee, AMI. What is the individuals with disability act (IDEA)?

Available from: https://www.understood.org/en/articles/individuals-with-disabilities-education-act-idea-what-you-need-to-know? utm_source=google-search-grant&utm_medium=paid&utm_campaign=evrgrn-may20-fm&gclid=EAIaIQobChMIyICsx7je9wIV1cqUCR3CBgajEAAYASAAEgJSlvD_BwE

Private insurance

Public insurance

Table 9 Prevalence of individuals in the United States with and without disabilities by special factors 2020 4

With

disabilities Smoking 21.7% Obese 40.4% Binge drinking 13.1%

Without disabilities 11.7% 29.8% 16.4%

United States 45.8% 53.4% Highest - Hawaii 61.4% Highest - Dist. of Col. 68.8% Lowest - New Mexico 33.6% Lowest - South Dakota 40.3% helenjournal.org • HELEN | 23

PART ONE

How and Why I Recently Visited

UKRAINE

By Seth Keller, MD

M

w friend

Seth and a ne

24 | HELEN • helenjournal.org

y recent decision to go to Ukraine, in light of the current crisis that the Russian Federation has placed upon the Ukrainian people and its government, turned out to be relatively easy for me. I arrived back in the U.S. on Monday, June 12 at 2 am, after spending three flights and what seemed like forever to finally get back home.

I am an international leader in the neurological care of adults with Intellectual and Developmental Disabilities (IDD) and have worked for over 25 years in the field. I have worked to advance much-needed education, training and supports for families and caregivers. This was done in a number of state-run IDD institutions. I have worked with community, state and national advocacy groups, and have been schooled on the history of how people with IDD have been marginalized, devalued and segregated—and on how disability rights are an ongoing battle that have to be protected and respected.

The great need for early intervention of someone born with IDDs, and their continuing need for supports—for

some, throughout their life time and for them to have the rights like everyone else to be part of society, culture and access to services—has become deep rooted in my sensibilities. The rich history of disability activism has helped people with disabilities gain more access to rights and services, more now than ever in the U.S., and in many parts across the globe. I’ve no doubt appreciated that the U.S. still has far to go in many ways in furthering access to quality services especially medical, psychologic, and oral health, in particular to adults, and that other countries were much further behind in their care of those with IDD. The basic rights to live in one’s community and to be valued as a citizen with worth were not being provided to countries across the world.

An email and then chat with my friend, Marisa Brown, launched my journey and work with Disability Rights International (DRI). Marisa is retired from the faculty of the Georgetown University Center for Child and Human Development, University Center for Excellence in Developmental Disabilities (UCDD) in Washington, DC. I have worked with Marisa on a

Alone and lack of stimulation

number of projects and deeply appreciated all of her wonderful IDD advoacy work. She also has been working with DRI, and they were looking for someone to go to Ukraine with them who had a strong IDD presence in health and social understanding. I was so honored and appreciative that she thought of me. But before I signed on, I had to appreciate why Ukraine, why now, and what was DRI? Caring for people with IDD has become a passion of mine for over 25 years. The great appreciation of their healthcare, social, and personal needs is matched by the clarity that they often have a great number of complex health concerns requiring lifelong attention and intervention to help best ensure that the individual has hope for

a well- deserved quality of life and happiness (including the support of the family and caregivers).

It has been apparent during my long years in the field, that access to quality services especially for adults with IDD, remains a challenge across the United States. I have been schooled in the long, sad history in the U.S. of how people with IDD have been devalued, marginalized, and segregated into institutions for life. It wasn’t really until the 1960s and 1970s that the horrible care of those with IDD was exposed to the general public; enough to help wake people up and begin to appreciate that those with IDD deserved the same rights as other citizens. The Olmstead decision in 1999 by the U.S. Supreme Court helped to

further the push for deinstitutionalization across the US. It is apparent that deep-seated ignorance, cultural biases, and national priorities can still impact and how fast (and to what degree) change can happen within any society. That is true where it come to how those with IDD have been treated in the past, and certainly still very true to this day. Ukraine is a clear reminder of that.

The institutionalization of those with IDD across the world has been going on since at least the 1800s. The “normalization” of how this practice of care be done and supported by the government and by society has deep roots, often based on ignorance, stigma and bias against those with disabilities. Societies believed that helenjournal.org • HELEN | 25

they were being just in their warehous- combinations of seizure medications, ing of those with IDD, who also were electric stimulation devices, dietary often placed with the mentally insane, changes, and even some receiving homeless, criminal, and those deemed surgery. The individuals that I was carto be morally corrupt. Over years, ing for have had lifelong disabilities societies began to segregate out these associated with their neurologic comvarious types of individuals into their plications. Most have received various own facilities. degrees of care since they were very It was deemed that societies had young, or even since birth. created an appropriate place to care It became rapidly clear in my growth and house these individuals. Terminol- in the field of developmental mediogy was used to help subdivide them cine, that I was being exposed to an into various categories which would provide a clinical manner reference in their abilities and level of function.

Ukraine has over 100,000 Terms such as moron, people with IDD in their imbecile, and feebleminded were applied institutions and orphanages. in this fashion. The They have created a system term “mental retardation” was felt to be in which babies and children just another term used are identified at a very young to define individuals, which also provided age as being uneducable, and additional labeling and categorization and therefore, the solution for stigma. them is to be taken care of My early views of those with IDD were by the state. from my work as a neurologist in several of New Jersey’s state-run institutions. extremely narrow view of life, and that My life experiences, and certainly institutional care was not the norm but my education and training in medical rather a parochial way in which those school, as well as neurology residency, with IDD were being cared for. Helpdid not provide a grounding or expoing provide them with rights, freedom sure to those with IDD, either socially, of choice, and equity became a driving ethically or medically. I went into my force for me. This was important to work at the institution rather ignorant. me, not only as a person, but also as My level of an “expert” was quickly a neurologist in developmental care, tested as soon as I began my employincluding as president of the American ment there.

Academy of Developmental MediPeople with IDD have a very high cine and Dentistry (AADMD). Living prevalence of neurologic complicaat home with families and receiving tions, including epilepsy, movement community-based supports are rights disorders, spasticity—and challenging that all people, including those with behaviors such those associated with IDD, deserve. When offered the autism and epilepsy, often beginning opportunity to go to Ukraine and help as young child, the often persisting support a just cause, I was eager to throughout their lifetime. Many indiseize this opportunity, though may not viduals may continue to experience have really appreciated it until it hit seizures despite being offered various me on the head.

“

26 | HELEN • helenjournal.org

For over 30 years, Disability Rights International (DRI) and its Executive Director, Eric Rosenthal, have been aggressively and without pause fighting to promote the human rights and full participation in society of people with disabilities.

DRI has committed to a worldwide campaign to draw attention to, and end, the pervasive and abusive practice of institutionalizing children with disabilities.

DRI has been central in supporting and promoting international law which has led to the UN Convention on the Rights of Persons with Disabilities (CRPD).

Article 32 of the CRPD seeks to end international support for new institutions and segregated service systems.

So why Ukraine, and why now, while Ukraine is now fighting against an aggressive attack from Russia?

The institutionalization of children with IDD has been ingrained in the Soviet bloc culture and has remained even when the Berlin wall came down and each of the various countries previously within the sphere of the Soviet Union influence became independent. DRI and other watchdog organizations have been going into these various countries for decades reporting on abuse and neglect, and fighting to end institutionalization and to push for family and community integration.

DRI has been working in many of these countries, including Romania, Serbia, Moldova, Bulgaria, Ukraine, and others. A number of reports have been created that bolster the great need for reform and further documentation of abuse and neglect. Governmental bodies, international advocacy organizations and local IDD support

organizations have all be brought together to help fight and promote the human rights of those with IDD and to end the dread of institutionalization.

Despite many years of these efforts,

gram to help with social or physical needs of individuals with IDD. They deem that their institutions are the best for them. No doubt their culture has greatly devalued people with IDD, and they have set a very low bar on the prospect that people with IDD can be helped.

Ukraine had been discussing their own reforms for people with IDD, including the decisions on institutionalization, but had decided to stall and basically kick the timing and implementation of any reforms and family and community supports for another day. Then the war began.

Ukraine has many institutions throughout the country. They house people of various ages, from babies, all the way up to adults. The levels of their disabilities vary. DRI has documented on many of their videos, pictures and reports that social and personal neglect is rampant, and that many of their needs for nutrition, physical stimulation, and therapies are not being met.

Untreated spasticity, and hydrocephalus are just a few conditions which have been noted. The war Life in a crib with Russia has led to the displacement of many Ukraine has remained extremely slow individuals who had been in instituand backwards in their progress. tions close to battle in the east of the Ukraine has over 100,000 people country and moved to institutions in with IDD in their institutions and the west. DRI had recently gone into orphanages. They have created a sysUkraine in April 2022 alongside a tem in which babies and children are BBC crew which further brought to identified at a very young age as being light the terrible ongoing issues. DRI uneducable, and therefore, the solution decided it was imperative to go right for them is to be taken care of by the back into Ukraine to further expand state. Ukraine has not created family upon their previous visit and to push and community supports. They have even harder on shining a light on what not created an early intervention prowas going on.

The thought that the timing for reform, planning and support for those now with IDD should wait until the war was over is impossible to imagine.

I had these thoughts, and certainly these questions were mentioned to me as I was contemplating my own decision whether or not to go into Ukraine to support DRI. I had a number of detailed conversations with Marisa Brown about DRI and her recent visit to Ukraine, plus a straightforward conservation with Eric Rosenthal about this effort, and about my role. We were going to enter Ukraine from the southwest through the city of Suceava, Romania. We were going to be supported by a wonderful Ukrainian advocate and guide, Halyna Kurlyo. We were going to remain very far away from where the battle was taking place far to the east.

My wife, family and neurology partners all supported my decision to go, so off I went on June 3, 2022.

The second part of this article about the journey will pick up upon my arrival in Ukraine in the city of Chernivtsi. Witnessing the institutions firsthand and its conditions, with signs of war were all around us. Meeting with local governmental leaders to discuss their thoughts and action plans, plus having an international news presence and how it impacted the story was all quite surreal.

Seth M. Keller, MD is a board-certified neurologist in private practice with Neurology Associates of South Jersey.

He specializes in the evaluation and care of adults with Intellectual and Developmental Disabilities (IDD) with neurologic complications. Dr. Keller is on the Executive Board of the Arc of Burlington County, as well as on the board for The Arc of New Jersey Mainstreaming Medical Care Board.

Dr. Keller is the Past President of the American Academy of Developmental Medicine and Dentistry (AADMD). He is the co-president of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). helenjournal.org • HELEN | 27

s ll a f it P e h T Diagnostic dicial ju e r P f o Overshadowing: Thinking

By Emily Johnson, MD

“A misleading symptom is misleading only to one able to be misled.”

- Sir Heneage Ogilvie

I

keep a list of my patients who have passed away. Currently, the names reside on a sticky note in my office – I keep promising myself to upgrade the display. I try to play a small part in keeping each of their memories alive.

There’s one patient on the list whose death I continue to wonder about.

In the months leading up to it, I saw him many times, knowing there was something wrong but not knowing what. He was non-speaking, so it was always hard to know what he was feeling, hard to know what direction to take a workup. He had a variety of abnormal labs, but there was no obvious pattern. I spoke with other doctors to get input and ideas of what the underlying diagnosis could be. I had assumed I had time to sort it all out. It crushed me when he passed, not only because I truly loved him as a patient, but also because I had to face the fact that I missed a diagnosis, that perhaps 28 | HELEN • helenjournal.org

someone better or smarter might have figured it out. The family opted not to do an autopsy, so I will never know what I missed. A physician’s job is to diagnose, but inevitably, whether we want to admit it or not, we all miss from time to time.

There are countless reasons patients go undiagnosed or misdiagnosed, and we are fortunate when we have the opportunity to identify and learn from the experience. Upon first thought, most would probably assume that all missed diagnoses arise from knowledge-based errors, in which a clinician just does not know enough to identify the underlying diagnosis, as in the story described above. Knowledge-based errors are a clear issue and one that clinicians spend their careers working to avoid. Medical and dental school, residencies, and fellowships are all designed to help us avoid knowledge-based errors. Assuming the correct diagnosis is ultimately discov-

ered, knowledge-based errors are also some of the easiest to identify and learn from. Unfortunately, they are far from the only types of errors that lead to missed diagnosis.

On the other end of the spectrum, missed diagnoses also arise from a variety of bias-based errors. In these cases, a clinician has the sufficient underlying knowledge to make the correct diagnosis but is unable to do so because of some underlying bias, which may be in relation to a group of people or simply due to the way in which information was presented and an inability to get themselves out of a certain train of thought. As these biases are, by nature, not something the clinician is consciously aware of, they are much more difficult to identify and learn from. Undoubtedly, we have all made these errors, many of which we never even realize. These are also errors that likely disproportionately affect marginalized patients.

N

ot long ago, a patient of mine with Down syndrome came to my office with staff from his group home to address “sundowning.” He had carried a diagnosis of Alzheimer’s disease for a few years at the time, originally diagnosed by an outside provider. When his group home staff had complained to his psychiatrist that he was falling asleep at day program, typically in the later afternoon and not sleeping through the night, the psychiatrist attributed it to the Alzheimer’s disease and recommended that he get a referral to a neurologist to discuss treatment options. I conveniently saw this patient in the later afternoon, when the symptoms typically arose. I walked in the room, and immediately knew that a sleep study, rather than a neurology referral, was the better initial course of action. He was slumped over in his wheelchair, sound asleep. I had seen this many times before, in particular with patients with Down syndrome. As I suspected, he in fact had severe obstructive sleep apnea, and his symptoms ultimately improved with BiPAP therapy.

Just last week, I met a new patient with autism who came in with recurrent episodes of anorexia. He would refuse to eat or drink, resulting in multiple hospitalizations for dehydration and electrolyte abnormalities. He was notably underweight. I assumed a significant workup had been done, but his parents told me that they had a CT in the ER and were later told no one could find a cause and it was probably his autism. As this was a new problem, and he has had autism his whole life, that assessment was absurd to me. It is obvious that the true underlying diagnosis has been notably delayed.

Diagnostic overshadowing is a common diagnostic error that results from a clinician’s assumption that a given sign or symptom is a direct result of a previously identified diagnosis, when it is in fact due to a separate process.

In the case described above, the sleep

Concrete Recommendations

for Clinicians to Avoid Diagnostic Overshadowing Reconsider your assessment or diagnosis if the presenting issue is new and the condition you are attributing it to is old.

Always consider behavior to be a form of communication and commit to figuring out what it is communicating.

Educate or re-educate yourself on disabilities, syndromes, and mental health diagnoses as well as commonly (and uncommonly) associated diagnoses.

Consult with colleagues or specialists on any case you feel uncertain about. Make it an opportunity for everyone to learn.

Listen to family members, caregivers, and others close to the individual. They likely have an exceptional sense when something isn’t right.

When working with patients from any marginalized background, make it a habit to second guess yourself and ask what you may be missing or what information may change your assessment.

Make our practices accessible from a physical and behavioral perspective for all patients.

helenjournal.org • HELEN | 29

ADVOCACY RECOMMENDATIONS Educate leadership and colleagues on what is mandated by the ADA.

Identify inaccessible clinics, exam rooms, etc., within your own institution and advocate for a concrete plan to fix issues within your organization.

Offer yourself as a resource to provide education on treating marginalized populations within your own organization.

Advocate for education regarding diagnostic overshadowing in health professional schools and residency curriculums.

Advocate that all health professional students have required concrete didactic and hands on experience with people with all types of disabilities and other marginalized populations.

30 | HELEN • helenjournal.org

and behavior changes were incorrectly attributed to a diagnosis of Alzheimer’s disease when they in fact were due to sleep apnea. Individuals with intellectual and developmental disabilities are at particularly high risk for errors due to diagnostic overshadowing, as new symptoms or concerns are all too easily attributed to a patient’s underlying disability, rather than a potential new diagnosis. It is easy to imagine how this would exacerbate the health disparities that this population already faces.

I

n June 2022, the Joint Commission released a Sentinel Event Alert regarding diagnostic overshadowing in populations facing healthcare disparities. The perils of Diagnostic Overshadowing were brought to the attention of the Joint Commission as a result of a robust and ongoing collaboration with the National Council on Disability (NCD).

At first glance, a newsletter article may seem relatively insignificant, although the potential impact of this alert should not be overlooked. The Joint Commission is a critical body in healthcare regulation and improving patient safety in hospital systems across the United States. They create policies and standards regarding patient safety and formally evaluate hospital systems. It is unprecedented that they would call out a specific issue relating to the healthcare of patients with IDD and other health disparities such as diagnostic overshadowing. It is clearly a step in the right direction, and it is a hopeful sign that policies and procedures could be implemented healthcare system-wide to improve the safety of care provided to individuals with intellectual and developmental disabilities.

As clinicians, patients, and family members, we have an opportunity to continue to advocate for policies and standards that further improve safety

for patients with IDD, including as it relates to diagnostic and make it an implemented reality. We must create actionovershadowing. The Joint Commission advocates for imable steps to reduce diagnostic overshadowing as outlined proved training, improved listening, improved interviewing in boxes one and two. We must advocate within our own techniques, improved institutions, but also within data collection, using the entire healthcare system. intersectional frameWe have the opportunity to works in patient care, that these recommenThere are countless reasons pa- ensure and improving complidations are made to have a ance with the Ameritients go undiagnosed or misdiag- true impact on the quality of cans with Disabilities care provided to individuals nosed, and we are fortunate when Act (ADA). Given that with intellectual disabilities. the ADA was signed we have the opportunity to identify over 30 years ago, and and learn from the experience. there are still countless hospitals and healthEmily Johnson, MD is medicare practices not meeting accessibility requirements, it is cal director of a primary care clinic for adults with intelclear that legislation and alerts such as the aforementioned lectual and developmental disabilities in Colorado Springs, alert are not enough.

CO and VP Policy and Advocacy of the American Academy As professionals in IDD care, we have the obligation to of Developmental Medicine and Dentistry. She is also lucky run with the framework outlined by the Joint Commission to have both a brother and son who have Down syndrome.

“

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 | 31

Sleep Apnea and

Down Syndrom

By Hampus Hillerstrom

S

leep apnea is a potentially serious disorder that affects more than 50% of children with Down syndrome and more than 80% of adults with Down syndrome (compared to an estimate of 5-10% in the general population). Untreated sleep apnea can affect behavior and cardiovascular health, impact cognitive development, and, in some cases, accelerate the onset of Alzheimer’s disease.

WHAT IS SLEEP APNEA? Sleep apnea occurs when air is not passed normally in and out of the lungs while sleeping. Experts define sleep apnea as Experts define sleep apnea as a decrease in breathing (hypopnea) or complete cessation of breathing (apnea), resulting in a decreased oxygen in the blood and/or an arousal from sleep. (The International Classification of Sleep Disorder-3). The pauses in breathing usually last 10 to 20 seconds but can last as long as 120 seconds.

TYPES OF SLEEP APNEA Obstructive sleep apnea (OSA): The airway closes when the person breathes in. Respiratory effort continues but the 32 | HELEN • helenjournal.org

obstruction prevents movement of air into and out of the lungs. This is the type of sleep apnea most prevalent in people with Down syndrome.

Central sleep apnea: This is a less common type of sleep apnea. In this case, the brain fails to transmit the appropriate signals to the respiratory muscles, resulting in the muscles not being able to circulate oxygen in and out of the lungs. This type of sleep apnea is common among patients who have suffered from heart failure, stroke, or brain injury.

Complex sleep apnea: This type of sleep apnea is diagnosed often during treatment of obstructive sleep apnea, after the obstruction has been treated and central apneas are observed.

RISK FACTORS FOR SLEEP APNEA The most common form of sleep apnea is obstructive sleep apnea (OSA). Risk factors include: • A narrowed airway from factors including enlargement of the soft palate, local fat deposition, or an enlarged tongue • Obesity: this is a major risk factor; however, many

me

• • • • • • • •

obese people do not have sleep apnea, and some people with sleep apnea are not obese Large neck circumference Being male Being older Family history Use of alcohol or sedatives and smoking (generally uncommon among people with Down syndrome) Chronic inflammation of the nasal passages Enlarged lymph tissue such as tonsils and adenoids OSA is significantly more common in people with Down syndrome

WHY IS OSA COMMON IN PEOPLE WITH DOWN SYNDROME? Individuals with Down syndrome have a higher predisposition to obstructive sleep apnea due to certain anatomical and physiological characteristics of the airways such as a relatively small midfacial region with a relatively large tongue, which contribute to the compromised airway.

Other conditions common in people with Down syndrome are chronic inflammation of the nasal passages, enlarged lymph tissue (including the tonsils and adenoids), and obesity, which are all added risk factors for sleep apnea.

The general decline in muscle tone in individuals with Down syndrome is another important contributing factor. Open airways are dependent on muscle tone, in this case the pharynx.

DIAGNOSIS The diagnosis of sleep apnea begins with recognition of the symptoms. A physician will perform a physical exam that often reveals obesity and excessive soft tissue in the

mouth, pharynx, and neck. In some cases, with advanced disease, the right side of the heart is weakened and findings of failure of that part of the heart may be seen. The laboratory tests are usually normal except low oxygen and high carbon dioxide may be found. (Advocate Medical Group) An overnight sleep study is needed to definitively diagnose sleep apnea. This study entails recording eye movements, muscle tone, electroencephalogram (EEG) to measure brain waves, and electrocardiogram (EKG) to measure the electrical activity of the heart. The test also records respiratory movements, nasal and oral air movement, and oxygenation of the blood.

Experts from the American Pediatrics Association recommend that all children with Down syndrome have a sleep study conducted by the time they are four years old.

STANDARD TREATMENT OPTIONS If obstructive sleep apnea is diagnosed, there are several standard options for treatment: • For patients who are obese, doctors recDr. Allen Wong ommend weight loss.

• Sometimes, sleep apnea worsens when the patient sleeps on their back. Therefore, encouraging the person to sleep on their side or on their abdomen can be helpful.

Doctors recommend placing a sock on the back of the pajama top and placing a tennis ball inside the sock. This will keep the person from sleeping on their back.

• Adenotonsillectomy: this is the first-line approach for most children. However, it is unlikely to resolve obstructive sleep apnea in children with Down syndrome since 65 to 73% of patients have some OSA after adenotonsillectomy.

• Continuous Positive Airway Pressure (CPAP): In this treatment, pressurized air is delivered through a mask and hose, helping the person’s airway stay open through sleep. Although highly effective, it is often difficult for people to stick with the treatment because of the discomfort of wearing the mask.

For example, only 46% of children with Down syndrome adhere to CPAP treatment. helenjournal.org • HELEN | 33

ALTERNATIVE/EMERGING APPROACHES As sleep apnea research advances, doctors and specialists are beginning to see results in some non-traditional treatments: • Weight loss • Dental approaches​, such as palate expansion​and Mandibular advancement device​ • Myofunctional therapy (speech therapy)​ • Anti-inflammatory medications, as small improvements seen with Singulair® or intranasal steroid treatments​ • Hypoglossal Nerve Stimulation: This treatment involves a surgically implanted device that is FDA approved for adults 18 years of age and older with moderate or severe sleep apnea, including adults with Down syndrome.

The device has been shown to be effective, with an average 68% reduction over 12 months. The device works to stimulate the tongue to open the airway at night.

To learn more about sleep apnea and other sleep disorders go to www.LuMindIDSC.org/sleep and sign up to myDSC, a free library of Down syndrome resources at www.myDSC.org.

OPPORTUNITIES

Down Syndrome and Sleep Apnea Mosaic Sleep Apnea Study for Sleep Apnea in Children with Down Syndrome This study from the University of Arizona is seeking to investigate the use a combination of atomoxetine (a medication approved by the FDA in children for the treatment of ADHD) and oxybutynin (a medication approved by the FDA in children for overactive bladder).

The company developing this approach is Apnimed, Inc. These medications, which have been shown to treat obstructive sleep apnea in a small study of adults without Down syndrome, are thought to treat obstructive sleep apnea by increasing airway muscle strength, which is known to be lower in children with Down syndrome.

They are actively recruiting participants for the clinical trial ages 6-17 with Down syndrome. For more information, contact Silvia Lopez at slopez1@arizona.edu.

Hypoglossal Nerve Stimulation for Sleep Apnea in Children with Down Syndrome LuMind IDSC is working with principal investigator Dr. Chris Hartnick, of Massachusetts Eye & Ear, to accelerate research of this approach for children.

If you are interested in learning more about this study, and whether your child would be an appropriate candidate, please contact the research team at Massachusetts Eye and Ear by emailing Christopher_Hartnick@meei. harvard.edu.

34 | HELEN • helenjournal.org

Hampus Hillerstrom is President/ CEO of LuMind IDSC Foundation.

Previously, he co-founded and served in executive roles at biotech company Proclara Biosciences. Hampus also worked at venture capital firm HealthCap, pharma company AstraZeneca, and investment bank Lazard. Hampus holds a master’s degree in economics from University of St. Gallen, MBA from Harvard Business School, and MSc in Health Sciences and Technology from MIT/Harvard. Hampus lives in the Boston area with his wife and children. Their oldest son, Oskar, has Down syndrome.

The LuMind IDSC Foundation (LuMind IDSC) envisions a world where every person with Down syndrome thrives with improved health, independence, and opportunities to reach their fullest potential. LuMind IDSC accelerates research to increase availability of therapeutic, diagnostic, and medical care options and provides resources, connections, and support to a vibrant community of individuals with Down syndrome and their families.

Visit www.LuMindIDSC.org.

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

RESOURCES Sleep Apnea by Paula Cho, Advocate Medical Group Preventing Sleep Apnea by Dr. Brian Chicoine, Medical Director, Adult Down Syndrome Center Advocate Medical Group, 2020 Sleep disordered breathing and ventilatory support in children with Down syndrome by Trucco, et.al. 2018 Relationship between obstructive sleep apnea cardiac complications and sleepiness in children with Down syndrome Konstantinopoulou, et.al. 2016 Obstructive Sleep Apnea in Young Infants with Down Syndrome Evaluated in a Down Syndrome Specialty Clinic Goffinski, Stanley, et. al. 2015 Obstructive Sleep Apnea in Adults with Down Syndrome, Trois et al. 2009

TIPS

for Good Sleep Habits at Home

Regular Sleep Schedule: Maintain a consistent sleep pattern, getting up at the same time every day.

Relaxing Bedtime Routine: Spend time before bed relaxing: read a book, have a shower or bath.

Eat Well: Try to eat a balanced, healthy diet. Avoid heavy, fatty, fried, or spicy food late in the evening if you get indigestion, Bananas, yogurt or healthy cereal are good bedtime snacks.

Good Sleep Environment: Keep your bedroom aired, cool and comfortable with a quality mattress and bedding.

Block Out Noise and Light: Make sure the bedroom is dark and quiet or use white noise, a fan or music to mask external noise.

Only Sleep and Intimacy: Avoid watching TV or using other devices, such as cell phones, in bed.

Exercise and Daylight: Try to do regular exercise, but not too intense before bedtime.

Spend time outside in the daytime. Even a short walk during the day can improve sleep.

Avoid Stimulants: Don’t drink coffee, sugary or energy drinks in the evening.

helenjournal.org • HELEN | 35

Patients in Ohio’s Cleveland State Mental Hospital - 1946 Photo: Mary Delaney Cooke

Boy with leprosy lesions

36 | HELEN • helenjournal.org

Pilgrim State Hospital inmates - 1936 Photo: Alfred Eisenstaedt

Say Cheese: A Brief History of Medical Photography

How medical photography dehumanized the individuals it was designed to benefit

Patient wit

h legs in tr

action

By Rick Rader, MD, FAAIDD, FAADM

R

eaders of HELEN: The Journal of Human Exceptionality will probably be familiar with celebrated photographer Rick Guidotti and his program Positive Exposure. Rick has transformed both medical photography and medical education by his sensitive, realistic and artistic photographic images of real people with real conditions. For 25 years, Positive Exposure has 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.

Unfortunately, medical photography has not always served to portray individuals with disabilities as valued, humanistic and personable.

Anyone who has ever had their photograph taken has heard the expression, “Smile, say CHEESE.” The use of the phrase “Say cheese” first

appeared around the 1940’s and has (seemingly) legitimate physiological evidence to elicit a smile. Brooke Nelson in the blog “Taking Pictures?” suggests “The ch sound causes you to clench your teeth, and the long ee sound parts your lips, making a facial expression that resembles a grin.”

One thing is certain; medical photographers never encouraged or promoted patients to smile or “say cheese.” In fact, the closest thing to a smile on a patient’s medical photograph was when they demonstrated a wide shot of some oral pathology.

So, while “Say Cheese” is an invitation to smile, the reality is that when referring to historical medical photograph the reference to “Cheese” might be an acronym for (C.H.E.E.S.E.) Clinical, Horrific, Exclusionary, Exasperating, Specimens, and Exaggerations. And if you threw in a “D” for Cheese “D” it results in Dehumanizing.

During the 19th century, physicians used photographs as consultation

tools in obtaining second opinions for challenging cases. They would also use them as “before” and “after” treatments and use them for personal advertising endorsements to promote their practices. These early photographs employed the “daguerreotype process” which was developed by Louise Daguerre, an early pioneer of the photographic process. The first use of photography in medicine was in 1839 by the physician Alfred Donne, and is credited with the first medical textbook using photographs. Most of the photographs were micrographs from microscopes of platelets, leukemia and Trichomonas vaginalis cells.

The earliest medical portrait of a patient was in 1840; it depicted a woman with a large goiter.

Photography was also used in psychiatry to capture the facial features of “the insane” for diagnostic purposes.

Photographs of patients were also used to show the patients the positive results of ongoing therapies.

Virtually every medical specialty helenjournal.org • HELEN | 37

has employed photographs of patients, specimens, procedures and outcomes. Virtually every war since the American Civil War has provided an abundant supply of dramatic subjects of horrific war wounds, trauma and “make-shift” treatment protocols. One would think they would serve as much for rationale diplomatic solutions of conflict in addition to clinical education.

While this article showcases medical photography, we would be remiss if we did not mention the contributions of medical illustrators and artists.

Early medical textbooks used drawings and illustrations to depict clinical conditions, most notably the ones used to guide medical students in dissecting bodies in introductory anatomy classes. The most applauded anatomical illustrator was the 16th century Belgium artist Andreus Vesalius (text called “On the Fabric of the Human Body.”) Of note is the American physician-illustrator Dr. Frank Netter (1906-1991); his remarkably illustrated books helped to educate generations of physicians, and are still used today.

The typical patient photograph employed several standardized features.

The patients were naked and had their facial features (eyes and mouths) covered up with black stripes to conceal

38 | HELEN • helenjournal.org

their identity. They were often depicted alongside measurement references to provide approximate heights. The subjects were typically in the “standard anatomical position,” which included a human standing, looking forward, feet together and pointing forward, with none of the long bones crossed from the viewer’s perspective. They often had their arms extended from their sides with their palms facing forward. They were expressionless and appeared as if they were specimens on a microscope slide or in a petri dish.

While the “patient exhibit photographs” did not intend to dehumanize or depersonalize them, the fashion in which they were displayed reflected the way clinical case studies were employed.

The emphasis was on the clinical features of the disease, illness or disorder. The single dimension of the photo did not allow for a “patient narrative.”

It was intended to emphasize and capture the visual novelty of the condition.

During World War II, the Air Force widely distributed cards to civilians, featuring black and white images of popular enemy aircraft, each one a unique design and config-

uration. It was intended for civilians to report any enemy aircraft sightings to the defense forces. Of course it did not provide any means to identify the pilots or crew; they were simply created to signify one plane from the other.

The same could be said of the patient

Typical med ical photo of individual w an ith Marfan sy ndrome

Photo of an individual with Marfan syndrome taken by Rick Guidotti

“A great photograph is a full expression of what one feels about what is being photographed in the deepest sense and is thereby a true expression of what one feels about life in its entirety.”

- Ansel Adams

Psychiatric hospital evaluation

photos…the emphasis was not on “who” the person was, but “what” condition the person had. The photographs also reflected how medical education was conducted; it often was cold and calculated and did not emphasize empathy and compassion.

And while hidden camera photos are considered more like photographic exposes of the inhumane conditions and treatments in state institutions for individuals with intellectual and developmental disabilities than medical education photographs, they can be credited with the closure of many state facilities. Most notable are the ones taken inside the Willowbrook School and in the book, Christmas in Purgatory (A Photographic Essay on Mental Retardation) by Burton Blatt and Fred Kaplan (1974).

Photography, like medicine itself, has come a long way; and while photographs are no substitute for actual patient contact, they certainly have a role in helping students and clinicians recognize both subtle and gross features of specific conditions. Luckily, the next generation of physicians will have access to the photos of Rick Guidotti, who has managed to incorporate the human side of human subjects and remove them from both the microscope slide and the petri dish.

In terms of medical photographs demonstrating how certain conditions impact on the lives of people with intellectual and developmental disabilities, I conclude with an observation from famed American portrait photographer Annie Leibovitz, “A thing that you see in my pictures is that I was not afraid to fall in love with these people.”

Guaranteed, you will be seeing more of these photos in the pages of HELEN: The Journal of Human Exceptionality.

A patient in a restraining chair at the West Riding Lunatic Asylum in Wakefield, Yorkshire, England - 1869 Photo: Wellcome Library, London

helenjournal.org • HELEN | 39

Health Equity FOR PEOPLE WITH IDD

I

By David A. Ervin, BSC, MA, FAAIDD

n early 2014, over a bottle of of an organization of which I’d never d’etre. The Malbec and talk of health and heard. That newly-minted president more I came healthcare for people with was Dr Matt Holder, and the organiza- to know and intellectual and developmental tion he would lead was the American understand, disabilities (IDD) in the dining room Academy of Developmental Medicine the more I of my house at the time, my mentor, and Dentistry (AADMD). Matt and wanted deepfriend and colleague, Dr Leslie Rubin, I would end up working very closely er involvement. and I, committed at that point for and collaboratively over the ensuThis was “my years to health equity for people with ing months, and we were ultimately tribe”, and I searched IDD, dreamed of bringing together joined by an unprecedented array of for ways to work with and become for some sort of planning event for organizations, literally from around part of their work. all the major advocacy organizations, the world, for the Global Summit on I should note that I’m not a clinihealthcare community provider cian. I used to be, but those days associations, and any others are long lost to my passions for that might be interested in system design and development, combining efforts to push for for practical and translational health equity for people with research, for geeky policy work, AADMD members are IDD. We envisioned all these and for community supports and organizations and all of their advocacy. Someone once told me advocating for change at leadership coming together to I’m a ‘pracademic,’ an amalgam levels ranging from the local of a practitioner and academic, establish an agenda and make commitments to addressing and to the federal to the galactic! which fits me perfectly! resolving rampant health disparThe AADMD’s mission is ities experienced by people with “to provide a forum for healthIDD. Surely, we believed, if the care professionals who provide major organizations dedicated to peoInnovations in Health and IDD in Los clinical care to people with IDD and ple with IDD were to come together in Angeles in Summer 2015. improve the quality of healthcare for common purpose, real, substantive and Through that work, I came to know individuals with IDD.” I love this, lasting work could be done to achieve Matt well, but I also met the driving of course, but as a pracademic, I’m health equity. forces of the AADMD. People whose still not a clinician and certainly not a The next day, I started calling names and reputations preceded them, healthcare professional. So, I dutifularound to the organizations with which but with whom I’d never meaningfully ly and religiously paid my Associate I spent the most time to see if we could worked—absolute legends in health Member dues, attended conferences, tempt them into such a coming togeth- advocacy for people with IDD at a made presentations, and contributed er. I’m fairly certain it was Maggie time when there weren’t many, all wherever and however I could to furNygren, the immensely talented CEO committed to health equity for people ther the work of the AADMD. of the American Association on Intelwith IDD. Through the eight-plus years that lectual and Developmental Disabilities Soon, I would begin working more have passed since my first chat with (AAIDD), who put me in contact with consistently with AADMD. As I did Matt, I’ve worked with the Board of a person of whom I’d never heard so, I got to know more and more the AADMD on strategic planning who had recently become president intimately the organization’s raison and positioning, on developing tools

“

40 | HELEN • helenjournal.org

and policy statements that deepen the impact and lengthen the reach of the organization. It has been and remains work I cherish. It never occurred to me to give a second thought to my Associate Member status.

This summer, at their historic One Voice Conference in Orlando, Florida, I became the first-ever Honorary Member of AADMD. Unbeknownst to me, the Board of Directors unanimously bestowed this honor on me in recognition of my dedication to and work with and for the AADMD. It’s an astonishing honor. As I told outgoing President, Allen Wong, the purpose and work of AADMD is something to which I have been and will remain, so long as they’ll have me, utterly committed.

AADMD is the leading health advocacy and equity organization at the nexus of healthcare and IDD. They proudly and accurately boast that

since 2002, they have led the effort to improve the quality of healthcare for people with IDD. Per Past President, Dr Steve Sulkes, “AADMD members are training future healthcare leaders, structuring healthcare systems that more effectively respond to patients’ needs, developing evidence-based health guidelines, and advocating for change at levels ranging from the local to the federal to the galactic!”

I’ve known Allen and Steve and Matt and all of the AADMD leadership for eight magnificent years, and I have watched in wonder as they build an ever-expanding tent for ALL of us committed to health equity for people with IDD. Even a non-clinician like me. As the inaugural Honorary Member in this 20-year-old organization, I happily urge you to join our cause.

There is so much work still to do, so much ground still to cover, so many miles still to travel.

As we grow our leadership in the health equity space, and as we seek to grow our impact, we welcome you to our work. It will take all of us. Professional Members, Associate Members, health science students, even International Members. And, in my case, the first-ever Honorary member.

David A. Ervin, BSC, MA, FAAIDD, is CEO of Jewish Foundation for Group Homes, a nonprofit supporting people with intellectual and developmental disabilities (IDD) in Maryland and Virginia. With more than 30 years in the field, Mr. Ervin has extensive professional experience working in and/or consulting to organizations and governments in the U.S. and abroad.

He is a published author and speaks internationally on health, wellness and healthcare for people with IDD and other areas of expertise.

Every person has the right to live well. ™

SevitaHealth.com

Sevita is proud to be a Founding Sponsor of the AADMD’s New Publication, Helen: The Journal of Human Exceptionality helenjournal.org • HELEN | 41

JOURNEYS

I Went All

t u o l C e m o S f and Got Mysel

By Edward Barbanell

M

I have the desire to get as much out never control. I’d be lying to you, y name is Edward Barof life as anyone else! banell. I was born with and we’d all be lying to ourselves if Down syndrome. To me, we didn’t admit that being born with that diagnosis does not a disability can be frustrating at times. Acting My interest in acting came about It’s an incredible test of our resolve to control my life. It is a meaningless word. I now know that I could succeed overcome adversity. It tests us, it tests when my mother’s friend, a part-time actor, was practicing Shakespearat whatever I try to do. I don’t and our families, our communities and ean monologues. I was won’t accept the limitations fascinated and asked if people place on me. Never he could practice some have, never will! speeches with me. I I don’t know what it was, but I’ve always had someBeing born with a disability means learned the Romeo and Juliet monologue and thing in me that allowed me I inherited unique abilities and enjoyed rehearsing it in to forget about what everyone else was doing, to forget about challenges - challenges that I have my home-made Shakespearean costume. what was normal, to forget worked hard to endure and overIn 2000, there was an about what was expected of acting competition for me and my disability. My come with the help of my loving youths with disabilities whole life I’ve been sliding family, friends and programs such called “The Rising Star.” headfirst into new situations I eagerly entered and perand new opportunities. I love as Special Olympics. formed my monologue. challenging people’s expectaTo my great delight I won tions of me. first prize for my age division, and a Being born with a disability means our political leaders. I can accept the check for one hundred dollars. I felt I inherited unique abilities and chaldisability that I’ve inherited because I lenges - challenges that I have worked have learned what it takes to overcome truly special as I had interacted with the audience and realized that I could hard to endure and overcome with the challenges that come with it. succeed if I believed in myself. the help of my loving family, friends I have what it takes to lead a joyous A year later, my mother read an and programs such as Special Olymand fulfilled life! article describing the Ricardo Monpics. As we know, inheriting these I have the love and support of my talban acting competition for actors challenges is something that I could family and friends!

42 | HELEN • helenjournal.org

“

Photo courte

sy: Special O

lympics

was a humorous addition to the movie.

One day, when we were driving to the set, I started to recite my Romeo. The Farrelly Brothers had been having a problem with the final scene of the movie and had not gotten approval to use the lines from a familiar sitcom. After hearing my monologue, Peter Farrelly decided, instead, to end the movie with the balcony scene from Romeo and Juliet. In true Hollywood fashion, Shakespearean costumes and sets were sent to our Austin location. Ricky Blitt, the writer, rewrote the ending; and the rest is history! After the movie premiered, people wanted to meet me, shake my hand and ask for my autograph. Instead of staring at me because of my disability, they were staring at me because they recognized me, and wanted to talk to me “the Hollywood Star.”

From 2006 -2015 I was honored to be invited to serve as a Board member for Special Olympics International.

I was privileged to travel and speak at Special Olympic games in Iowa, Alaska, New Jersey, New York, Washington, D.C., Nebraska, Wyoming, China, Morocco, Greece, and Panama. In Boise, Idaho, Johnny Knoxville and I spoke about looking at ways to promote inclusion and pride for people with different abilities. We spoke about how we hoped that The Ringer would knock down stereotypes of persons with disabilities, and change attitudes all in good taste.

with disabilities, which was going to be held in Los Angeles. I was very eager and excited to enter the competition. My mother, my aunt and I flew out to California.

I was surrounded by seasoned actors with physical and intellectual disabilities. I found out that everyone had come Helping End the Use of the “R” Word In 2009, I was instrumental in starting a campaign to end with an acting partner. Neither my mother nor my aunt the use of the “R” word. I spoke felt that they could be my acting partner!

I desperately wanted to compete, and performed my Romeo monologue. The judges applauded my performance, introduced me to an agent who represented actors with disabilities, and awarded me the second place scholarship prize!

I was ecstatic when, several months later, I was cast in the role of Billy, Johnny Knoxville’s roommate, in the movie “The Ringer” produced by the Farrelly Brothers. The movie taught people about awareness and inclusion. The movie humanized people with intellectual disabilities and showed their capabilities, talents and skills. Tim Shriver, the CEO of Special Olympics, spent a great deal of time on the set, making sure that it was appropriate. I even ad-libbed lines, such as “Medicare, Medicaid, or Aflac.” The Andy and The Orphans cast in Boca Raton, FL . Photo courtesy: Am Farrelly Brothers loved the line and it y Pasquantonio

helenjournal.org • HELEN | 43

about the “dignity revolution” which would change negative attitudes into positive attitudes. I promoted the concept of unified sports, which brought persons with disabilities together with athletes without disabilities. We must also provide support and guidance through education, healthy athlete screening, and sports training.

The following is a rap I wrote, with my mother’s help, about “Ending the R word”: As leaders we must all find a way to teach people to stand up and care, And I propose we do that by ending the use of a word that’s most unfair.

Often you’ll hear someone say “retarded” without blinking an eye, Unaware of the hurt they cause when they let that word carelessly fly.

We have the same needs as all of you, Love, respect, and camaraderie too.

We are sensitive, caring and very aware, Don’t use the R word and please don’t stare.

As leaders we can change attitudes, And use of the R word is definitely rude.

We have to make society conscious about that word’s hurtful effect, And get them on board to empathize and reject.

The Farrelly Bros. took a big chance When they cast me in The Ringer and let me do the steam room dance!

I went all Hollywood and got myself some clout, Which comes in handy when you have a message to shout.

We must erase the stigma when people say retarded, We hate that word, it needs to be discarded.

They banned the word retarded when they passed Rosa’s law, I stood next to President Obama and helped him correct that legislative flaw.

We’re on our way, but our journey has just begun, I need your help, COME ON IT’LL BE FUN!

“

Orphans. My Broadway dream had been fulfilled.

I moved up to New York for five months and enjoyed acting in every one of my performances. I never missed a show! I kept singing the Frank Sinatra reprise from “New York, New York” - “If I can make it there, I’ll make it anywhere!” That was the greatest accomplishment for an actor with Down syndrome! The play was very successful and it made the public aware that they should not put limitations on people with disabilities. As an added bonus, a producer in Florida bought the rights to the play and I performed Andy and the Orphans for another six weeks. The performances were sold out!

Although my most well known job is acting, everyone is aware that actors need employment between gigs. I have been working in the food industry for the past 20 years. I enjoy interacting with people and being there to serve them. I have always advocated for employers to hire more people with disabilities.

Conquering Sports Special Olympic sports has been another fulfilling The play was very successful part of my life. I participate bowling and basketball, Broadway Dream Fulfilled and it made the public aware in and I especially love tennis.

Everyone repeated the R pledge: that they should not put We are taught skills, particto support the elimination of the ipate in competitions, enjoy derogatory use of the R-word from limitations on people with a sense of camaraderie and everyday speech and promote aclearn sportsmanship. This ceptance, inclusion and respect for disabilities. has always provided me people with intellectual and develwith a sense of pride and accomplishopmental disabilities. This event is celebrated annually on March 31st. ment.

I have been blessed to have appeared in TV shows such as Comedy Central, Special Olympics offers a Healthy Workaholics, Fantasy picpFactory, Loudermilk, Jackass 3D and Ridiculousness.

Athletes screening program directed My greatest experience, however, was when I met a young playwright, Lindby Dr. Steve Perlman. Doctors with sey Ferrentino, who had written a play called Amy and the Orphans, about a various specialties (dentistry, ophthalfemale with Down syndrome. She was interested in having me portray the lead, mology, podiatry, hearing) volunteer as Andy, a male with Down syndrome, in matinee performances. The play was to examine the athletes and make going to be performed at the Roundabout Theatre in New York City for four assessments and recommendations for months. I met with Lindsey one afternoon, and I told her about my various acting experiences. She listened and taped my monologues as Puck in “A Midsum- follow-up care. This aspect of Special Olympics has been a life-saving expemer Night’s Dream,” “Henry V,” and Romeo. She was excited and impressed rience for many special needs athletes. with my speeches and told me that she was signing me up for the Andy and the 44 | HELEN • helenjournal.org

THE SANTA FE GROUP IS A 501(C)(3), ACTION-ORIENTED THINK TANK WITH A PASSION TO IMPROVE LIVES THROUGH ORAL HEALTH

SAVE THE DATE!

TUESDAY, SEPTEMBER 6 – WEDNESDAY, SEPTEMBER 7, 2022

Achieving Equitable Oral Health for Those with Intellectual and Developmental Disabilities: A Promise, A Pledge, A Plan Hosted by the University of the Pacific, Arthur A. Dugoni School of Dentistry San Francisco, CA Join us for the Santa Fe Group’s Fall Program, a two-day gathering that celebrates the 25th anniversary of the Santa Fe Group and honors co-founder Dr. Arthur A. Dugoni.

• Hear from nationally known experts in the field of oral health and advocacy • Build understanding of healthcare disparities from a medical perspective, implicit bias in healthcare, the basics of developmental disabilities and more • Engage in breakout sessions to discuss issues of inclusion, health concerns and other topics

Edward as Rom

eo

I am very grateful to all those volunteer specialists who are part of this team.

I am currently serving as a Global Ambassador for Special Olympics; as a spokesperson, advocate, actor, and athlete. We are united by a vision to make the world a better place for people with different abilities by inclusion in all aspects of the work force, on the playing field and in life.

As I tell the athletes:

• Participate in live simulations of patient experiences with selfadvocates and parents • Discuss overcoming barriers to care, including physical, financial, insurance,attitudes, training and access • Learn about communication, etiquette and empathy; transitioning the patient for a lifetime of health and building the oral health team of the future to care for people with IDD

AND MUCH MORE TO BE ANNOUNCED!

BELIEVE IN YOURSELF! NEVER GIVE UP! REACH FOR THE STARS!

Follow Edward on Socials!

Edward Barbanell @edbarbanell Edward Barbanell

REGISTRATION OPENS SOON! FOR MORE INFORMATION CONTACT ALLEN.WONG@AADMD.ORG. WE HOPE TO SEE YOU IN SEPTEMBER! santafegroup.org

*Breakfast, luncheon, and refreshments will be served on both days

helenjournal.org • HELEN | 45

The Gathering of the Big Three at the AADMD’s Historic One Voice for Inclusive Health Conference

C

harles Scharf, the CEO of Wells Fargo, summed up my own feelings about meetings with, “Meetings should have as few people as possible, but all the right people.”

It was apparent that the American Academy of Developmental Medicine

By Rick Rader, MD FAAIDD, FAADM Photos by Karen Tiu impactful, and they certainly recruited the right person to serve as the facilitator. The Honorable Neil Romano is a respected advocate for people with disabilities with over 40 years of experience working for five presidents in the area of employment for people with disabilities, healthcare promotion and human rights. He received a

Presidential appointment as the Chairperson at the National Left to Right: Dr. Carl Tyler, Hon. Neil Romero, Dr. Allen Wong, Council on Dr. Gerald Harmon, Dr. Cesar Sabates, Dr. Rick Rader Disability and Dentistry (AADMD) subscribed to (NCD, www.ncd.gov), and continues this axiom in creating a milestone histo serve as a council member, as well toric meeting at their annual meeting as a Presidential appointment as the on June 14th in Orlando, Florida.

Chair of the President’s Committee on To the best of our knowledge, this People with Intellectual Disabilities was the first (and only) time the Presi- (www.pcpid.gov). Neil was a former dents of the American Medical Associ- Assistant Secretary of Labor in the ation (AMA) and the American Dental Division of Disability Employment.

Association (ADA) met to discuss the He was the creator of Oral Health state of healthcare for people with inAmerica’s National Spit Tobacco tellectual and developmental disabiliEducation Program (NSTEP) which, ties and the role of organized medicine at the time, was the largest and most and dentistry. successful program promoting oral The AADMD knew the conversahealthcare in the world. Neil is fluent tion had to be focused, revealing and and well versed in the long stand46 | HELEN • helenjournal.org

ing and shameful health disparities experienced by people in the disability community.

As luck would have it, both the ADA and AMA Presidents came from the primary care trenches, where healthcare for patients with intellectual and developmental disabilities are either derailed, neglected, undertreated, or begin a pathway to appropriate comprehensive and collaborative healthcare.

Dr. Cesar Sabates, President of the American Dental Association, was a general dentist and had numerous patients with disabilities.

He was the first Cuban-American dentist to be elected as the President of the American Dental Association and has a keen appreciation of the struggles inherent in belonging to marginalized populations.

Dr. Gerald Harmon has a Family Medicine practice in South Carolina and understands how patients with disabilities have been historically stigmatized, devalued, and often considered a burden by medical practitioners.

As stated at the beginning of this article, “…all the right people.”

Dr. Sabates and Dr. Harmon acknowledged the historic shortcomings of both physicians and dentists in not having the skills, training and experience that is required to provide access to competent care for people with (all) disabilities across the lifespan.

Mr. Romano reminded the audience that of the 192 medical schools and 66 dental schools in the United States, few offer any standardized curriculum in the clinical treatment of patients

with disabilities. Research has demonstrated that the overwhelming majority of medical and dental school graduates personally feel they do not have confidence in their ability to provide competent care. Interestingly enough, those same students overwhelmingly would like to treat patients with complex needs.

Several significant concerns that contribute to healthcare disparities were discussed and included poor reimbursement, problems with communication, high turnover of support staff, clinician bias and negative attitudes about people with disabilities, lack of knowledge of disability syndromes, erroneous belief that care requires “specialization”, and time constraints dictated by managed care organizations.

The questions posed during the Presidents’ fireside chat took aim at the history of disregarding people with disabilities, in both the medical and dental profession. Dr. Sabates and Dr. Harmon acknowledged the historical shortcomings of physicians and dentists who were under-educated, ill-equipped, and unwilling to treat people with disabilities. They renewed their commitment to move both the ADA and AMA towards addressing this national disparity of care.

The AMA and ADA Presidents outlined plans to provide clinical competency training to both medical and dental students, and assured people with intellectual disabilities would be appointed to the committees that develop those plans.

The fireside chat with Dr. Sabates and Dr. Harmon was hosted at the AADMD’s One Voice Conference, the only conference that brings all health disciplines together for IDD. This year’s 20th Anniversary conference, held in Orlando, FL, was held directly before the Special Olympics USA Games. The conference theme “The Way Forward: How to Live Well” explored how to pick up the pieces following the pandemic and allow the IDD patient population to live well –

One could argue that the AADMD especially during times of crisis.

Orlando Conference could be consid“Today is the beginning of equitaered the most significant conference ble healthcare. The AADMD is proud ever held to reorganize and promote to host major leaders to make major access to competent healthcare for changes for the future. These leaders millions of Americans with comlistened and understood the probplex disabilities. And like the Allied lems that exist and are committed to powers at the Yalta Conference, we moving the needle forward, including had our own powers, The American changes in interdisciplinary care for the whole healthcare system, reimburseTHE PRESIDENTS’ PERSPECTIVES ment access education and individualized care plans,” “It was an honor to represent the American Dental said Dr. Allen Wong, Association at the AADMD’s One Voice Conference.

AADMD President Collaboration across the healthcare profession is vital 2020-2022. for helping individuals with intellectual and developThe AADMD looks forward to con- mental disabilities achieve optimal health. This year’s tinued conversations, conference—which included my conversation with American Medical Association President Dr. Gerald and commitment Harmon—offered many insights on a path forward in from the AMA and addressing the needs of this community. I commend ADA, and will hold the AADMD for its ongoing work in this area, and I both organizations look forward to future opportunities for leaders from to their promise. To all healthcare disciplines, including dentistry, to unite take this historic with one voice for inclusive health.’’ discussion and put - Cesar Sabates, DDS, President of it into action, the the American Dental Association AADMD will invite additional healthcare partners, IDD “I was honored to attend this historic meeting industry leaders, between the leaders of two of the nation’s oldest insurance companies, medical professional organizations with great legaIDD advocates and cies of improving the health of our nation. Over the self-advocates to past two years, America’s healthcare system and its work together to crepublic health structure has been challenged during ate a successful new the COVID-19 pandemic, and both professions have model of care. worked to build trust in science and medicine and Historians have advance health equity for all our patients.” acknowledged the - Gerald E. Harmon, MD, President of 1945 Yalta Conferthe American Medical Association ence as being one of the most famous conferences ever Medical Association, The American held. It was the meeting of the heads Dental Association, and the American of the Allied powers following World Academy of Developmental Medicine War II in order to reorganize post war Europe. Attended by the three heads of and Dentistry.

“Meetings should have as few state of the Allied powers – President Franklin D. Roosevelt, Prime Minister people as possible, but all the right Winston Churchill and Premier Joseph people.” To that I might add, “All Stalin – the conference aimed to create the right, committed and determined a post-war period of peace and stabili- people.”

Like the ones we had in Orlando. ty in Europe. helenjournal.org • HELEN | 47

A

Magical Time

for Health Justice

By Allen Wong, DDS, EdD, DABSCD Photos by Karen Tiu

A

t the recent American Academy of Developmental Medicine and Dentistry (AADMD) meeting in Orlando, Florida, we had a lofty program theme of “Moving Forward through the Pandemic for those with IDD and Disability.” With the location at the Disney World properties and Special Olympics US Games in the same week, it was the perfect setting to dream of a more perfect world. Like the song’s title in the Disney movie, Aladdin, goes, it was a “Whole New World.”

The AADMD celebrated its 20 years of striving for advocacy, education, access to care for those with Intellectual/Developmental Disabilities, a hidden population. The ultimate goal of the organization was to achieve health equity for those who have been marginalized and overlooked, using

the providers are growing at a minimal rate.

Dr. Allen Won g and Dr. M The percentage of those eelin Chin K it-Wells with Mickey Mou needing emergency care due to se lack of basic care has been rising at an on the panel, as well as for the audience. alarming rate. The problem needs to Each organization had made efforts be addressed before the cataclysmic towards achieving equity but have collision occurs. not been as focused. At the recent The question is “How do we avoid AADMD event, there was a palpable the crash?” or “How do we redirect sense that a strong collaboration was our trajectory?” We know that there being forged among the AMA, ADA are many organizations and many and AADMD. There was universal professionals aware and wanting to agreement that it was time to end solve this problem. Many have tried, the discrimination and the barriers but have been beaten down. Our One in a unified fashion with other health Voice conference is symbolic. We organizations. Many of the barriers need to come together and make all are universal in all healthcare, such as our voices become one loud voice. cost of education, student debt, lack of A voice that is clear and resonates training and curriculum, lack of proper for justice and optimal health which reimbursement, challenges in finding would decrease unnecessary, expenappropriate referrals, proper facilities sive treatment. and accommodations, just to mention AADMD hosted the first historic some. meeting of the Presidents of One of the youngest voices are our the most well-known health AADMD student chapters in medical associations, the American and dental schools. We hope to supDental Association (Dr. port future leaders and health providCesar Sabates) and Ameriers to address the needs of those with can Medical Association (Dr. IDD and other disabilities, for their Gerald Harmon) to a fireside life span, to lead healthy and producchat about the topic of health tive lives, with a focus on prevention. disparities, moderated by a The time is right for us to take make member from the National the dream come true for health justice.

Council on Disabilities (Hon. We know it is not going to be easy, but Neil Romano). The goal was we must not be deterred. to enable some of the major leaders in healthcare to partner Opening ceremony of the U.S. Special Olympics Games with AADMD in a strategy Allen Wong, DDS, EdD, DABSCD is a a multidisciplinary approach. In our to achieve health equity for all. The professor and the director of the Dujourney, we made progress and experi- fireside chat was merely the fuel to goni School of Dentistry AEGD and enced some setbacks. invite other like-minded organizations Hospital Dentistry program in the San We knew the situation was only to become partners in the endeavor.

Francisco area, the Global Clinical getting worse as time went on. It was Like all problems, those affecting the Advisor to the Special Olympics Spelike watching two oncoming vehicles. community cannot be solved unless cial Smiles, past president of AADMD, On one hand the patient population is they are recognized. The fireside chat and Publisher of Helen: The Journal increasing at an exponential rate while was enlightening for the participants of Human Exceptionality.

48 | HELEN • helenjournal.org

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. helenjournal.org • HELEN | 49

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.

50 | HELEN • helenjournal.org

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