ISSUE NO. 4 SEPTEMBER 2022 ENDORSED BY EDUCATIONAL OUTREACH Dancing the Neural Tango: HOME ALONE House Calls for the Elderly Disabilitieswith + INSOMNIA in AUTISM & Related Disabilities RANDOM Workplace ABOUT THE SHORTAGE OF DIRECT CARE WORKERS Observations
Steve Perlman, DDS, MScD, DHL (Hon.)
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.
Comprehensive and collaborative support for the disability community demands partnerships, coalitions and alliances.
2 | HELEN • helenjournal.org
Founding Sponsors
For information about becoming a Founding Sponsor of HELEN, please contact Vanessa Ira at vira@helenjournal.org.
By Dr. Martha Summa-Chadwick, DMA and Steve Weiser
Insomnia in Autism and Related Disabilities
By Margaret A. Nygren, EdD, FAAIDD
By Beth Malow, MD, MS
Individuals on the autism spectrum and other disabilities struggle with regulating emotions, and their struggles can be amplified by poor sleep.
Contents
38
Using the Principles of Plain Languge
Plain language can improve knowledge transfer and facilitate informed decision making 24 18
Dancing the Neural Tango
Music for educational outreach and therapeutic use
By Kelly Spina, LMSW
Rick Rader, MD, FAAIDD, FAADM
42 36 22
9 Around Social Media
By Rick Rader, MD, FAAIDD, FAADM
Allen Wong, DDS, EdD, DABSCD
FEATURES 14
13
Random Workforce Observations about the Critical Shortage of Direct Care Workers
By Seth Keller, MD
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Change How You See, See How You Change Photography Exhibit
Steven P. Perlman, DDS, MScD, DHL (Hon)
By Rick Guidotti
How and Why I Recently Visited Ukraine - Part Three
22
Disability Fact Sheet: United Nations, Depart ment of Economic and Social Affairs
Different Brains: For a Better Understanding of Neurodiversity
3010
Happenings
By Joseph Satchi
News From Around the Community
By H. Barry Waldman, DDS, MPH, PhD
By Galina Rader, MD, FAAFP
ON THE COVER: Alaric is a son, brother, nephew, cousin, and friend with a big heart and a great smile. See Page 13 for exhibiton details.
Volume 1, Issue 4
By
Home Alone: The Plight of Elderly Indviduals with Disabilities Living Alone and a Remedy for Their Medical Care
Framing the Future
By Joseph M. Macbeth
AADMD
36
Photo by Rick Guidotti - positiveexposure.org
32
6 Nothing is Written A Variation on a Theme
4 | HELEN • helenjournal.org Contents
All In is All Out Carly Sharec
COLUMNS
Parent Advocate; Director, Oral Health Ad vocacy & Policy Initiatives NYU Executive Committee, Project Accessible Oral Health
Special Olympics Northern California Athlete Member, AADMD Board of Directors
Senior Editor for SpecialArtPublisherProjectsDirector
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.
Director of Orthodontics, Boston Children’s Hospital; Adjunct Assistant Professor, University of Pennsylvania School of Dental Medicine, PA
Medical Director, Developmental Disabili ties Health Center, Peak Vista Community Health Centers, Colorado Springs, CO
Justin Steinberg
Former Assistant Secretary, United States, Department of Labor, Office of Disability Em ployment Policy, Chairman Emeritus, National Council on Disability, President, TRG-16
Roberta Carlin, MA, MS, JD
Barbie Vartanian
President/Chief Executive Officer, National Alliance for Direct Support Professionals, Inc.
Director of Family Programs, MyFace, New York, NY
Seth Keller, MD
Hoangmai H. Pham, MD, MPH
Michael Stein Co-founder & Executive Director, Harvard Law School Project on Disability, Cambridge, MA
Stephen B. Sulkes, MD
Editor in Chief Senior Managing Editor
Gary Liguori, PhD, FACSM
helenjournal.org • HELEN | 5
Dean, College of Health Sciences, URI Aca demic Health Collaborative, Kingston, RI
State University of New York Distinguished Teaching Professor, School of Dental Medi cine, Stony Brook University, NY
Matthew Holder, MD, MBA, FAADM CEO, Kramer Davis Health; Co-founder, AADMD; Co-founder, ABDM; Co-founder, Lee Specialty Clinic
H. Barry Waldman, DDS
Alyse Knudsen
Vanessa B. Ira
H. Rodney Sharp Professor of Human Services Policy & Leadership; Faculty Director, The National Leadership Consortium on Develop mental Disabilities, University of Delaware
David Ervin, BSc, MA, FAAIDD Chief Executive Officer, MAKOM, Rockville, MD
Susan L. Parish, PhD, MSW
Dean and Professor, College of Health Profes sions, Virginia Commonwealth University Richmond, VA
JoAnn Simons, MSW
Carl Tyler, MD
3 Forester Avenue, #22 Warwick, NY 10990
Specialist & Coordinator, Healthy Athletes Health Programs at Special Olympics Interna tional
Founder and Director of Positive Exposure, New York, NY
President and CEO, Institute for Exceptional Care
Executive Director, American Association on Health and Disability, Rockville, MD
HelenJournal.org
Renee Dease
Joseph M. Macbeth
Professor, Department of General Practice and Dental Public Health, University of Texas School of Dentistry, Houston, TX
Hon. Neil Romano
All rights reserved. Copyright © 2022 American Academy of Developmental Medicine & Dentistry
Marc Bernard Ackerman, DMD, MBA, FACD
Gerontologist, Research Director, Lakewood Family Health Center, Cleveland Clinic, OH
Editorial Advisory Board
Vincent Siasoco, MD, MBA
Assistant Professor, Dept. of Family Med | Pe diatrics, Albert Einstein College of Medicine, Director of Primary Care, Rose F. Kennedy CERC, Montefiore, Med. Director, ADAPT Community Network, New York, NY
Dina Zuckerberg
Steve Perlman, DDS, MScD, DHL(Hon)
Pediatrician, University of Rochester Medical Center, Rochester, NY
Helen: The Journal of Human Exceptionality is where people with disabilities, fami lies, clinicians, and caregivers intersect for inclusive health.
American Academy of Developmental Medicine & Dentistry
Allen Wong, DDS, EdD, DABSCD
Steven M. Eidelman
Rick Rader, MD, FAAIDD, FAADM
David Fray, DDS, MBA
Rick Guidotti
Emily Johnson, MD
Neurologist, Co-president, National Task Group on Intellectual Disabilities and Demen tia Practices
Chief Executive Officer, The Northeast Arc, Danvers, MA
Both Vanessa Ira, our standout Senior Man aging Editor, and I had numerous brainstorming sessions, filled dozens of pages of legal pads and spent many moments of anguish in rejecting scores of names because they were close, but not the Aha! moment we thought the new publication deserved.
This is the fourth issue of HELEN: The Journal of Human Exception ality. We are delighted and thrilled at the reception that the journal has had. De lighted and thrilled, but not surprised.Withatop-notch cadre of editorial advisors, respected authors, a full spectrum of top ics and subjects, and ongoing input from all sectors of the disability community, HELEN was a safe Whateverbet.anxiety we had about naming the journal HEL EN quickly faded when readers sent us positive feedback as to the creative, innovative and appropri ate homage to Helen Keller that the name portrays.
NOTHING IS WRITTEN
The genesis of the name is quite interesting. When we embarked on creating the journal, one of the first items on the agenda was “what do we call this newborn?”
In one of these hair pulling sessions, Vanessa offered, “I got it, what about HELEN?” I was completely thrown off guard, “Where did that come from?” Vanessa shared that the inspi ration came from John F. Kennedy, Jr.
- EDITOR’S DESK
Usual.”Itdidn’t take me long to want to drop the net on the name HELEN. Va nessa came through and we popped the cork and declared HELEN as the Aha! name for the new publication. And while it sometimes takes people a minute to put it together, most agree that it works and serves as a near perfect moniker.
one of the options to match the name of Helen Keller was to “blind and deaf”). I have become fascinated with her life, her trials and tribulations, her resilience and her reserve. In learning about Helen, I have been excited to read some of her quotes. It’s amazing how much you can understand about a person from the more notable things they said. One particular quote stopped me in my tracks.
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Rick Rader, MD, FAAIDD, FAADM - Editor in Chief
“The most important day I remem ber in all my life is the one on which my teacher, Anne Mansfield Sullivan, of Human Exceptionality on a ThemeVARIATIONA
Ever since the launch of HELEN, I have been learning more and more about Helen Keller. Like most of us, I could probably get a “matching” question (if they even still have those on exams) correct (if
The Journal
and his magazine he called GEORGE. GEORGE was a glossy month ly magazine centered on the theme of politics-as-lifestyle founded by JFK, Jr. It was published from 1995 to 2001. The name, of course, was a reference to George Washington, who personified “politics” for ev eryone who made it past the fourth grade. It had an intriguing tagline as well… “Not Just Politics As Usual.” One could say that HELEN could be thought of as “Not Just Disability As
came to me.” The thought that a teach er could have that impact on a person, a person who achieved so much in her life, was enough for me to have to catch my breath.
is committed, diligent, determined and persistent. It is for that reason that we are proud to announce that this is the fourth issue of HELEN: The Journal of Human Exceptionality We think we got it right with HELEN.
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.”
helenjournal.org • HELEN | 7
That followed with the introduction to an article, “The Story of the Anne Sullivan and Helen Keller Friend ship.”
This paragraph I thought was bold, perhaps too bold. It served to negate some of the innate qualities that Helen obviously had and relied on. It pre sented Sullivan as the real hero, the person that was responsible for the heights that Helen achieved over her extraordinary lifetime. But you have to factor in the quote by Helen that suggests that her introduction to Anne Sullivan was credited as being “the most important day” in her life. One has to look closely at Anne Sullivan in order to get a better picture of 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 accom plish great things.
- Dr. Rick Rader
“Many people think they know the story of Helen Keller, the girl who suf fered from being blind and deaf. What many don’t know is that without Anne Sullivan’s patience, guidance, and friendship, Helen Keller never would have been transformed into the woman and success story she became.”
Sullivan’s work with Keller was immortalized in the play called “The Miracle Worker.” The title comes from Mark Twain, who thought Sullivan was indeed a “miracle worker” for the impact and influence she had on Keller.
Teachers remind us that the formula for success in any teaching scenario begins with a student who is committed, diligent, determined and persistent.
The Keller-Sullivan axis invites us to look at the role of caregivers in the success of people with disabilities. While everyone, with or without a disability, has been influenced by teachers, mentors, guides, role models, and coaches, how can we measure their value, their contribution and their significance? I dare say that the teach ers and caregivers have been equally impacted by their students, patients and clients (hate that term).
protest and demand that HELEN is the centerpiece of the masthead.
Why
“Nothing is written.”
Perhaps Helen would have sug gested that we name this journal, this forum intended to provide a better understanding of the disability expe rience, not after Helen, but after Anne Sullivan. The more I learn about Anne Sullivan, the more I think she would
At age 35, Sullivan suffered a stroke and she became completely blind. When she was 70, she had a coronary thrombosis, fell into a coma, and died five days later, with Keller holding her hand.
- Helen Keller
“
Anne Sullivan (called Annie by her friends) was born in Massa chusetts in 1866. At the age of five, Anne contracted the bacterial eye disease trachoma, which left her partially blind and without reading or writing skills. She received her educa tion as a student of the Perkins School for the Blind; soon after graduation at age 20, she be came a teacher to Keller which lasted for 49 years. Sullivan was a gifted teacher and, with in six months, she taught Helen 575 words, some multiplication tables and the Braille system. Sullivan helped Keller graduate Radcliffe College by spelling the contents of class lectures into Keller’s hand and spent hours conveying information from textbooks to her.
Alone we can do so little; together we can do so much.
This quote from T.E. Lawrence implies that nothing is inevita ble, 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.
Teachers are quick to remind us that the formula for success in any teach ing scenario begins with a student who
AAHD’s goal are to reduce health disparities between peo ple with disabilities and the gen eral population, and to support full community inclusion and accessibility.
To create a forum in which healthcare profes sionals, families and caregivers may exchange experiences and ideas with regard to caring for patients with IDD.
To disseminate specialized information to fami lies in language that is easy to understand.
The AADMD is resolved:
AAHD strives to advance health promotion and wellness initia tives for people with disabilities.
To assist in reforming the current system of healthcare so that no person with IDD is left with out access to quality health services.
To prepare clinicians to face the unique chal lenges in caring for people with IDD.
To establish alliances between visionary advo cacy and healthcare organizations for the prima ry purpose of achieving better healthcare.
Collaborative Organization Mission Statements
To provide curriculum to newly established IDD training programs in professional schools across the
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).
AAHD is dedicated to ensuring health equity for children and adults with disabilities through policy, research, education and dissemination at the feder al, state and community level.
It is the purpose of the Ameri can Academy of Developmen tal Dentistry (AADD) to establish postdoctoral curriculum stan dards 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 Devel opmental Dentistry – to grant board-certification to those den tists who have successfully com pleted these training programs.
The American Academy of De velopmental Medicine (AADM) is a medical society dedicated to addressing the complex med ical needs of individuals with intellectual and developmental disabilities across the lifespan. It incorporates clinician training and awareness, teaching, ad vocacy, research, board certifi cation, health equity, interdisci plinary collaboration, inclusive care delivery models and shared decision making.
Tonation.increase the body and quality of pa tient-centered research regarding those with IDD and to involve parents and caregivers in this process.
8 | HELEN • helenjournal.org
•
In InBetween”.thecompany’s initial years of operation, Hackie self-financed all of the content on DifferentBrains. org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at confer ences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains.
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Different Brains® Inc. found er, Harold “Hackie” Reitman, M.D., is an author, filmmaker, retired orthopedic surgeon, former pro fessional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate. However, it was his role as a father that led to the creation of the Dif ferentBrains.org website.
3. To foster the next generation of neuro divergent self-advocates
Different Brains® strives to encourage understand ing & acceptance of individuals who have variations in brain function and social behaviors known as neu rodiversity. The organization’s mission has 3 pillars: 1. To mentor neurodiverse adults in maximizing their potential for employment and independence.
DIFFERENT BRAINS:
For a Better Understanding of Neurodiversity
2. To increase awareness of neurodiversity by producing interactive media.
Different Brains, Inc. is a 501(c)(3) non-profit orga nization that creates media content to advocate for greater understanding of “neurodiversity.” It also provides neurodiverse adults with mentoring, train ing, and real-world experience to prepare them for successful careers and help them to reach their full potential. All of the videos, podcasts, articles, and other media content they create can be viewed free of charge at DifferentBrains. org.
By Joseph Satchi
Socials
•
Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and pro duced a film based on her expe riences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book “As pertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disor ders, and Neurodiversity.”
AROUND SOCIAL MEDIA helenjournal.org HELEN
MISSION STATEMENT
FOUNDER
| 9
Sign up for bi-monthlynewsletter!their DifferentBrains.org/sign-up/
@diffbrainsdifferent-brainsdifferent.brains@diffbrainsDifferentBrains.org
Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brain tumors, and underwent two brain surgeries before the age of five. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for chil dren’s charities (to which he donat ed every fight purse).
This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Con vinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains
10 | HELEN • helenjournal.org HAPPENINGS
Steve co-founded the National Lead ership Consortium in 2006, a part nership of 18 national developmental disabilities organizations. The Con sortium offers intensive week-long leadership institutes which focus on strategies and values that are designed
to meet the specific needs of disability organizations. They have also created a resource-rich website tailored to the needs of emerging leaders in the dis ability field, a community of practice aimed at supporting the growth and knowledge of disability leaders and research on best practices and inno vations in disability supports. Since 2006, Steve has been instrumental in building leadership in the United States, Canada and Israel and recent ly celebrated the 100th Leadership Institute in July. These leadership institutes have engaged thousands of emerging leaders. He’s a trusted mentor to many leaders in our field, and like Dave Hingsburger, he is truly a humanitarian who has dedicated his life to the full inclusion of people with disabilities and devel oping leaders to make this a reality.Please join us, virtually, on September 14th as we celebrate Steve Eidel man’s incredible career and impact on our com munities. To register, visit https://us02web.zoom. us/webinar/register/WN_ n05JHX8NTT-2JOo q0wNMlQ
Steve Eidelman, a Founding Member of HELEN’s Editorial Advisory Committee, Receives the NADSP’s 2022 Hingsburger Humanitarian Award
The
(From NADSP.org)
National Alliance for Direct Support Professionals (NAD SP) is proud to recognize Steve Eidelman with the Hingsburger Hu manitarian Award for 2022. For those who are not familiar with Steve, he is currently the Faculty Director of the National Leadership Consortium and the H. Rodney Sharp Professor of Hu man Services Policy and Leadership at the University of Delaware. He is a past President of the American Associ ation of Intellectual and Developmen tal Disabilities (AAIDD) and serves as Senior Advisor to the Chairman of Special Olympics International. Steve also serves as the Executive Director of The Joseph P. Kennedy, Jr. Founda tion. His recent efforts have focused on implementation of Article 19 of the Convention on the Rights of Persons with Disabilities (CRPD), focusing on deinstitutionalization. He was the Pennsylvania state government offi cial in charge when Pennhurst State School and Hospital was closed and continues to be a fierce advocate for community living.
“This initiative has been life-chang
Alliance for Oral Health Across Borders (AOHAB) is proud to announce that through its “Student Leadership in Global Oral Health” initiative, over 12 students from around the world presented their oral health community projects at the American Academy of Developmental Medicine and Dentistry (AADMD) One Voice for Inclusive Health Con ference which was held in Orlando, Florida on June 3-5, 2022.
Students from Around World Present their Oral Health Projects at the AADMD’s June Conference
Visit the Alliance for Oral Health Across Borders website: ancefororalhealthacrossborders.comwww.alli
“For me, Student Leadership in Global Oral Health Program and Orlando experience are the pay off for many years of hard work in the field of dental politics among students. Some times I struggle to see a reason for working so hard, but you showed me how magical international work can feel, and how many more things there are to reach.” – Student from Germany
“My goal is to create awareness about oral health issues for cancer patients. I want to provide preventive treatments for cancer patients before and during treatment.” - Student from Ethiopia
Selected students were then chosen for a special lifetime opportunity to present their clinical poster at the “One Voice formentalHealthInclusiveConference”heldbytheAmericanAcademyofDevelopMedi cine and (AADMD).Dentistry
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“My goal is to make fitness and oral health a lifestyle through accessibility, education and community engage ment.” - Student from Haiti
One Voice for Inclu sive Health Conference introduced this group of young leaders to a previously invisible minority population: those with intellectual, developmental and physical disabilities.
“My project is aimed at developing an oral health teaching training manu al that will be used by primary school teachers in Zimbabwe.” - Student from Zimbabwe
Dr. Steve Perlman, AOHAB Board Member, Co-Founder and past Pres ident of the American Academy of Developmental Medicine and Den tistry (AADMD), and Founder of Special Olympics Special Smiles, an oral health initiative for the athletes of Special Olympics International, states, “We welcome our collaboration with the outstanding Dental Student Lead ers from the Alliance for Oral Health Across Borders and trust that they bring back information they glean from our meeting to their countries to expedite needed programs for people with intellectual and developmentally disabilities.”TheAADMD
power children to practice proper oral hygiene through the education of oral hygiene with cards, games and vid eos” - Student from Rwanda
The
“The goal of my project is to em
“Through the creation of collabora tive programming such as this, with the American Association of Devel opmental Medicine and Dentistry, we hope to educate future leaders that will continue our mission of contributing to best practices for more sustainable quality oral health globally”, says Dr. Deborah Weisfuse, President of the Al liance for Oral Health Across Borders. “We look forward to developing a memorandum of Understanding with AADMD and continuous collaboration for years to come.”
The Alliance for Oral Health Across Borders developed the “Student Leadership in Global Oral Health” initiative with the goal of developing a group of young leaders throughout the world that will build sustainable oral health community projects, thus reducing the burden of global oral in regions that do not have access to proper care. During an 8-month virtual leadership course, each student worked with oral healthcare industry mentors to develop their own local community project.
AOHAB is a global network of distinguished leaders in medicine, den tistry and public health that leverage their collective experience to identify, problem solve, and share innovative projects in oral health that develop ac cess to underserved communities. The organization’s mission is to promote oral health as a conduit for communi cation and as a mechanism that will re duce the burden of oral disease across boundaries.
ing for me, I trust most students would agree with me as well. I commend the AOHAB for creating such a platform.” – Student from Ethiopia
dvanci
Ensuring Oral Health Equity, Access & Inclusion Supporting Helen’s Mission to improve the well -being of People with Intellectual & Developmental Disabilities
www.medicaiddental.org
A ng Me dicaid P olicy
This exhibit, a collaboration between Positive Exposure and PRISMA (Precision Medicine in Autism), celebrates each person’s uniqueness and teaches viewers about each person’s specific inter ests and passions, their “things” – the basis for PRISMA’s campaign #whatsyourthing.Thephotography
Hannah is creative and musical with skills on the pia no, guitar and organ. She finds joy in riding her horse Bella and making digital art.
A
helenjournal.org • HELEN | 13
PRISMA
Seth loves rock music, Batman and firefighters. He has a great sense of humor and has a sensitive side too. He loves his dogs, Molly and Noah.
Pcommunities.
From
September 22 thru December 2022, a community-based photography exhibit featuring individuals with a diagnosis of autism or other neurodevelopmental condtions will be held at The Warren Alpert Medical School at Brown Univer sity in Providence, Rhode Island.
Alaric (above), on this month’s cover and part of the exhibit, has a big heart and a great smile. He is a vid eo game enthusiast and a cheeseburger connoisseur. He enjoys watching shows about veterinary science, automobiles and extreme jobs.
Julian (left) is a funny, loving boy. For him, life is as cool as an ice cream and he would be happy to talk about it all day long. Pedro (right) loves to know exactly what to expect in a day. He is very technical and likes robots, Legos and anything that transforms.
Photos by Rick Guidotti for Positive Exposure
exhibit was created to raise awareness about the importance of diverse individual perspectives and their ability to collectively strengthen our shared humanity and our community.
Positive Exposure has received support from the With Foundation to partner with Bradley Hospital and the PRISMA Team at Brown University to create a film highlighting the mental health challenges facing individuals living with an Intellectual and Developmental Disabilities. The film series is called FRAME, Faces Redefining the Art of Medical Education. Each film places humanity at the forefront in medical education, profoundly changing how medical information is presented to healthcare providers in training, clinicians, families and
(precisionmedicineinautism.org) is a multidisci plinary effort at Bradley Hospital and Brown University, bringing together genetic counselors, child, adolescent, and adult psychiatrists, and other clinicians and researchers, un der the direction of Dr. Daniel Moreno De Luca. They work closely with individuals with a diagnosis of autism or neurodevelopmental conditions who come to see them in the context of mental health needs, often helping to identify an underlying genetic diagnosis.
ositive Exposure (positiveexposure.org) utilizes the arts and advocacy to create a more inclusive world, celebrating our shared humanity. Positive Exposure collaborates internation ally with nonprofit organizations, hospitals, medical schools, educational institutions, museums, galleries, advocacy organizations, and communities to effect a sea-change in societal attitudes towards individuals and communities at risk of stigma and exclusion.
PerspectivesDiversetheAwarenessExhibitPhotographytoRaiseAboutImportanceofIndividual
By Galina Rader, MD, FAAFP
14 | HELEN • helenjournal.org HOME
Disabilities Living
The Plight of Elderly Individuals with Alone and a Remedy for Their
Medical Care ALONE
Without assistance, support and oversight from family members, paid caregivers or a concerned community network, we often see the medica tions are not obtained, appointments for referrals are not made, diagnostic test are not carried out, and the patient enters the vortex of the perfect storm.One of the most successful and evolving strat
ALONE
“We know that you’re in there, and that you’re all alone.” - Harry, from the movie “Home Alone”
hile “Home Alone” is a popular 1990 American comedy film, the title is also an appropriate descrip tion of thousands of individuals with disabilities living alone, with no ongoing social supports or assistance. The film revolves around the adventures of a young boy who was mistakenly left by his family in their home during the holidays and faced with the challenges of fending for himself. In reality, however, there is nothing comedic about living alone, especially if one is an aging individual with a disability and co-occurring chronic health conditions.
egies to properly manage this patient population is the “home visit” – with the healthcare provider actually going to the patient’s home, conducting an examination, and making recommendations for treatment based on the realities of the patients scenario.Asaphysician that conducts the majority of my patient encounters in the patient’s own home, I can attest to the wisdom, success and positive outcomes for patients with disabilities. The Ga len Medical Group is a physician-led, multi-spe cialty medical group providing outstanding healthcare in the greater Chattanooga, Tennessee area. As a progressive practice, it became obvi ous that elderly patients with disabilities living alone represent the highest “at-risk” patient population. Their decision to create, promote and support a “patient home visit” model has al lowed me to reap great personal and professional satisfaction from caring for patients in their own homes.
W
The real-life scenario unfolds with the indi vidual being hospitalized for an acute episode and being discharged back to their home with a litany of needed medications, diagnostic tests, re habilitative regimens, referrals to specialists and changes in environmental and lifestyle choic es. Often, the discharging physician is unaware of the patient’s life situations and assumes the discharge orders will be carried out successfully. Often, the order to make an immediate follow-up appointment to see the patient’s primary care physician (PCP) goes unheeded, simply because the patient may not have a PCP.
In the early 1930s, house calls by doctors were 40% of doctor-patient meetings. By 1980, it was only 0.6%. Reasons include increased special ization, technology, time constraints, and sheer economics. The ending of house calls coincided with the end of the tradition of the physician both admitting their patient to the hospital and treating the patient during their hospitalization. Today, the emergence of the “hospitalist,” a physician who specializes in treating the hospi talized patient, has virtually done away with the old model of the PCP seeing patients in the office in the morning and seeing their hospitalized
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For military veteran caregivers, caregiving often starts earlier in life and lasts longer. To better care for your loved one, you must also care for yourself.
16 | HELEN • helenjournal.org
Get a FREE military veterans caregiving guide at aarp.org/caregiving
The Hospital Readmission Reduc tion Program (HRRP) is a Medicare value-based purchasing program that encourages hospitals to improve com munication and care coordination to better engage patients and caregivers in discharge plans, and, in turn, reduce avoidable readmission. In the case of individuals with complex intellectual and developmental disabilities (IDD) residing in community group homes, the challeng es are multiplied. The turnover of Direct Support Professionals (DSP) does not lend itself to continuity of care and the preservation of subtle benchmarks of be havioral changes that are only understood by “time and experience.” Individuals with IDD may not be able to commu nicate their pain, anxiety or discomfort,
I stated that many patients do not have a regular primary care physician. Many practices have discharged these patients because of non-compliance, multiple ‘noshow” appointment histories and no-re sponse to office communication requests.
It is the elderly patients with disabil ities living alone that best describes the “highest risk.”
patients in the afternoon. Like all models, both versions have their advantages and disadvantages.Virtuallyevery hospital discharge summary includes an order for the patient to return to their primary care physician within seven to ten days. Jackson et al, in an article published in the Annals of Family Medicine (Timelines of Out patient Follow-Up), suggests, “Timely outpatient follow-up has been promot ed as a key strategy to reduce hospital readmissions, though one-half of patients readmitted within 30 days of hospital discharge do not have follow-up before readmission.” The article concluded that “most patients do not meaningfully benefit from early outpatient follow-up. Transitional care resources would be best allocated toward ensuring that highest risk patients receive follow-up within seven days.”
patients. Many patients with disabil ities lack the equipment, experience, confidence, and skills to participate in a tele-health appointment. They may not be able to communicate or have sensory impairments that impede on their visual or auditory capacities.
“
social worker, or patient navigator, but the reality is that most practices, including large group practices, do not have dedicated professionals working in this capacity. The presence of these dedicated professionals who strive to prevent the notorious “cracks” from forming are sadly absent from most practices, clinics and offices.
While the COVID pandemic era telehealth has served as a successful adjunct to in-person appointments, it is not a panacea for “home- alone”
I would propose that the ultimate medical home is “the patient’s home,” and for millions of people with dis abilities, it’s the ultimate home for the delivery of care.
An additional attri bute to the home-based medical encounter is the opportunity for the physician to obtain a better understanding of the range, limitation, impact, compensatory and accom modating skills that directly relate to the disability. These observations can curtail the negative consequences of diagnostic overshadowing. These observations can lead to providing en vironmental, adaptive equipment, con struction modifications that can lessen the limiting nature of the disability. An example would be a “roll-in” shower stall instead of an inaccessible bathtub
Tele-health does not typically have a follow-up mechanism to ensure that follow-up recommendations have been carried out.
for a wheelchair user.
In 1967, The American Academy of Pediatrics (AAP) introduced the term “medical home” to describe primary care that is accessible, family-centered, coordinated, comprehensive, continu ous, compassionate, and culturally ef fective. The Medical Home Model has been applauded since its inception. As of April 2013, 43 states had policies promoting the medical home model for certain Medicaid or CHIP beneficia ries. States have created pilot projects, reformed payment structures, invested in health information technology, re structured Medicaid provider systems, and included the medical home model in service delivery.
Galina Rader, MD, FAAFP is board certified in family medicine, palliative care and hospice care. The focus of her practice is on elderly patients with disabilities and chronic co-morbid conditions, living alone with no signif icant support or assistance. She is a member of the Galen Medical Group in Chattanooga, TN.
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and treatable conditions often turn the neglected corner with major conse quences.Inaddition to identifying the best practices to avoid re-hospitalization as an indicator of ongoing medical oversight, there are also financial incentives to keep at-risk patients in a “home-based” medical model.
Many patients with disabilities lack the equipment, experi ence, confidence, and skills to participate in a tele-health appointment. They may not be able to communicate or have sensory impairments that impede on their visual or auditory capacities.
We certainly understand and ap preciate the value of effective “case management” by a nurse manager,
One of the attributes of a homebased medical appointment is the opportunity for the provider to get an appreciation for the environmental im pact on the patient’s health. The phy sician can observe conditions for fall risks, hygiene, bathing, temperature and ventilation control, food reserves,schedulemedicationcharts,weightcontrol,properstorage and cooking equipment, refrigeration storage for certain medications, hoarding tendencies, care of pets, breeding grounds for allergens, and the ability to self-evacuate in case of a fire or natural disasters. The physician can incorporate their concerns in reports that should initiate a remedial action plan.
“ The biological bucket includes areas such as being overly arousable, having difficulty with processing melatonin, or having the genes for poor sleep. Many parents report that their children “can’t turn their brains off.”
Causes of insomnia in autism and related disabilities can be placed into three simple buckets—medical, behavioral, and biological. The medical bucket includes other sleep disorders such as obstructive sleep apnea, which can affect both children and adults, especially those carrying exces sive weight. Add restless legs syndrome, and psychiatric conditions such as attention deficit hyperactivity disorder, anxiety, and depression, all of which can affect sleep. Med
Insomnia in
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By Beth Malow, MD, MS
Sleep is an important part of our health and well-be ing. We all know how our emotions can spiral out of control when we aren’t sleeping well. We are prone to pounce on our friends, or send that email we will regret later. Individuals on the autism spectrum, and other disabilities, struggle with regulating emotions, and their struggles can be amplified by poor sleep. The good news is that sleep problems are easily treatable in au tism and related disabilities. In this article, we will discuss a common sleep problem, insomnia, and understand its causes and treatments.
CDC prevalence is now 1 in 44 children and more than 70,000 children are turning 18 each year, meaning more than 700,000 autistic individuals are entering adulthood over the next decade. Sleep affects 50-80% of those with autism and is the most common co-occurring condition that parents report to their child’s healthcare provider. Insom nia, which has been defined as difficulty falling asleep, staying asleep, poor sleep quality, or short sleep duration, is the most common sleep problem within autism. As we will discuss in a future article, sleep affects health and well-being, in both the individual and family.
Autism and Related Disabilities
two hours later, on average, after puberty). In those with sensory sensitivities, the level of noises and light can affect sleep at bedtime. The firm pres sure of a weighted blanket can be comforting and sleep-producing.Bedtimeroutines, including visual schedules with photos or line drawings, in those with lim ited language, and checklists in those with more
ical conditions such as seizures, gastrointestinal problems, pain, and eczema can also interfere with falling asleep or contribute to night wakings. Low or low normal ferritin (iron stores) levels below 50 ng/ml can cause restless legs, leg kicks, or restless sleep, and iron supplements can help. Medications to treat a variety of conditions, including antide pressants and stimulants, can make it harder to fall
Beth Malow, MD, MS is Burry Chair of Cognitive Childhood Development and Professor of Neurology and Pedi atrics at Vanderbilt University Medi cal Center. Her research and clinical practice are focused on sleep in autism across the lifespan, including treatments with behavioral approach es and medications.
Loring, W. A., Johnston, R., Gray, L., Goldman, S., & Malow, B.
Malow, B.A., Adkins, K.W., Reynolds, A. et al. Parent-Based Sleep Education for Children with Autism Spectrum Disorders. J Autism Dev Disord 44, 216–228 (2014).
This article is included in the upcom ing monograph “Sleep and Sleep Disorders in People with Disabilities” published by HELEN: The Journal of Human Exceptionality.
Autism Speaks Sleep Toolkits: collection of free and download able pamphlets, quick tip sheets, and videos speaks.org/tool-kit/atnair-p-strategies-improve-sleep-children-autismhttps://www.autism
(2016). A brief behavioral intervention for insomnia in adolescents with autism spectrum disorders. Clinical Practice in Pediatric Psy chology, 4(2), 112–124.
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Terry Katz, PhD and Beth Malow, MD, MS Solving Sleep Problems in Children with Autism Spectrum Disorders: A Guide for Frazzled Families: Book to help families implement behavioral sleep strategies. Woodbine House, Maryland, 2014.
melatonin is deficient in children or adults on the autism spectrum. Other studies have documented normal melatonin levels but have shown that melatonin sup plements can promote sleep. Genes that regulate melatonin production or breakdown are altered in autism and other psychiatric conditions.
These should be used sparingly – to promote behavioral strategies rather than substitute for them. Whenever possible, work with the healthcare provider to use a medication that will treat a co-occurring condition such as epilepsy, anxiety, or depression. Starting at low doses can avoid excess sedation and other side effects. It is important to avoid adding more medications to those that aren’t working but instead substitute new medications for those that aren’t working. More studies of med ication effectiveness for sleep, and side effects are needed, in real world settings that collect data from peo ple with autism and related disabilities, and their families.
While insomnia is very treatable in many on the autism spectrum, or with related disabilities, we are still learn ing the best ways to provide treatment to children, teens and adults. While many benefit from working with a
Goldman, S.E., Richdale, A.L., Clemons, T. et al. Parental Sleep Concerns in Autism Spectrum Disorders: Variations from Childhood to Adolescence. J Autism Dev Disord 42, 531–538 (2012).
A vicious circle can be set up, with insomnia at night leading to more behavioral problems during the day, and then more insomnia at night. Day time stressors can make everything worse, and result in increased levels of cortisol at night. Even when asleep, children on the autism spectrum have exhibited elevated heart rates, a sign of over arousal. Medications can often help with overarousal, but behav ioral approaches (see above) can be helpful asMelatonin,well. referred to as the “hormone of darkness,” is released at night, with its produc tion suppressed during the daylight hours. In addition to promoting sleep and synchronizing our biological clocks, it may act to decrease anxiety and studiesoverarousal.decreaseSomehaveshownthat
Maxwell-Horn, A., & Malow, B. A. (2017). Sleep in autism. Semi nars in Neurology (Vol. 37,(No. 04), 413–418.
REFERENCES
trained psychologist or therapist, there are some parents who can learn these strategies on their own. Older chil dren and adults may also benefit from formal CBTI (cognitive-behavioral therapy for insomnia) but may also be successful with “do-it-yourself” strategies (see resources at end of article). It is helpful to view insomnia as a condition that is not “one size fits all” but instead select treatments that meet the needs of the child and family, while always searching for a possible medical or biological cause or contrib utor.Behavioral treatments should be considered the “first-line treatment” for insomnia, given that they often help many children and do not have the side effects of medications. How ever, some children require supple mental melatonin or prescription med ications to fall asleep or stay asleep.
STRATEGIES FOR AUTISM AND RELATED DISABILITIES SLEEP PROBLEMS
Bedtime routines that include visual schedules with photos or line drawings, such as the examples below, can be helpful for those with limited language. Checklists can be very helpful for those with more advanced language.
TAKE A SHOWER APPLY LOTIONWASH HAIR PUT ON PAJAMAS GET A DRINKBRUSH TEETH GO TO THE BATHROOM LIGHTS OFFHUG & KISS GOODNIGHT WEIGHTED BLANKET GO TO SLEEPGO TO BED
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HABIT FORMING:
National Alliance for Di rect Support Professionals is an advocacy organization that was founded in 1996 by the late John F. Kennedy Jr. and is the only national advocacy organization whose sole purpose is dedicated to advancing the direct support profession.
For decades, there has been a per ception across this country that direct support is unskilled work, entry-level work, or a job that just anyone can do. I can assure you that after 40 years of working with direct support pro fessionals in many service sectors, including IDD, aging, behavioral health, at-risk youth – nothing can be further from the truth. The work of a direct support professional is challenging, complex and continually changing, and no day at work is ever the same. It requires high levels of acuity, responsibility, judgment, and
As we’ve seen over the past two and a half years, these outcomes can be a matter of life and death – like keep ing people healthy and safe during a worldwide pandemic and free of a virus that is three times more likely to cause death for people with disabilities and advanced age due to pre-existing conditions.Youmight say that direct support professionals are the Jack and Jills of all trades – they do it all. Oh, and by the way, these outcomes that define
Mr. Kennedy wrote in a report to the President that “Quality is defined at the point of interaction between the staff member and the individual with a disability.” For more than 25 years, our mission has been to enhance the quality of support provided to people with disabilities through the provision of products, services, and certifications that elevate the status of direct sup port workers, improve their practice standards, promote systems reform and, most importantly, advance their knowledge, skills, and values.
ABOUT THE CRITICAL SHORTAGE OF DIRECT CARE WORKERS
Random Workforce Observations
By Joseph M. Macbeth
The
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So what exactly does Quality at the point of interaction mean to those outside of the disability circles? Well, every industry, whether it be manu facturing, technology, finance, sales, healthcare, or supporting people with
disabilities have a benchmark for Quality. In our work, we measure Quality in terms of what we call “val ued outcomes” – helping people with disabilities achieve things that are im portant to them – big things like find ing and keeping a job, helping people develop meaningful and relationships, helping people live in their own homes, helping people stay connected and included in their communities – or helping people stay out of institutional settings. Outcomes can also be small things like preparing a meal, dressing oneself or balancing a checkbook.
Quality are never accidental, nor do they just magically happen. When you analyze these outcomes, when you deconstruct them, you will most often find a direct support professional, or more likely a team of direct support professionals, who are highly inten tional in their practice and can ob jectively demonstrate the correlation between their knowledge, skills and ethics with outcomes. Quality rests squarely on the shoulders of the direct support workforce.
it right. Let’s make careful, deliberate investments into the workforce that can address this systemic failure for long term success.
character. I would argue that the false perception around this work is why we find ourselves at the cliff’s edge where a critical shortage of qualified workers is leading to service programs closing, people and families being un served, and highly vulnerable people at significant risk of abuse, neglect and exploitation.Wecan’tblame the
where I don’t have to work two or three jobs to support my family. There are many reports on direct care wages. And we know that low wages feed high turnover, and we see a revolving door of strangers supporting vulnera ble people, often times with the most intimate of care. Year after year we see half of this workforce leave and that costs your state millions of taxpayer dollars.Tobe sure, solving this complex issue will require comprehensive solutions – there is no one solution, no silver bullet. Here’s a few ideas:
and, at the same time, addresses wage compression issues so tenured direct care workers are recognized for their time and not left behind in order to attract new workers.
pandemic; in fact, in my strong opinion, COVID-19 has mere ly lifted a veil and has exposed our service systems weakest link – the direct care work force. Make no mistake, this is no longer a crisis – a crisis is defined as sudden, unexpected and temporary. We knew this day was coming more than 25 years ago and, as a system, we failed to address it. Yet, we continue to collect and share data about the poverty-level wages, inad equate training, the absence of career ladders, and a lack of professional identity and a lack of professional respect.Thecritical shortage of our direct support workforce is well document ed, and if there is a silver lining to this dreadful pandemic, it might be that the highest levels of government are now beginning to take notice of just how “essential” direct care workers are and are infusing much needed financial re sources to address the shortage. Let’s not squander this opportunity. Let’s do
“
- Recognizing the Role of Direct Support Profes sionals Act which would require the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals so we can begin to collect more accurate data.
If you survey direct care workers and ask them, “What is the most important thing we can do to support you?”, their overwhelming answer is, “Give us a living wage” – a wage
• To reduce turnover, create rate set ting methodologies with value-based payments that incentivize career ladders that lead to voluntary creden tialing for tenured direct care workers. We must keep high performing direct care workers in the jobs in which they excel and enjoy.
• Introduce legislation that provides a living wage to recruit new workers
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• Lastly, I co-authored the report to the President in 2017 for the Pres ident’s Committee for People with Intellectual Disabilities. In this report, we identified 9 recommendations to address the workforce shortage. I am saddened and frustrated that none of the report’s findings have been im plemented. We know what needs to be done. It’s up to policy makers and elected officials to have the will to do it.
• Encourage your members of Congress and United States Senators to sponsor H.R. 4779 and Senate Resolution 1437
Joseph M. Macbeth is the Chief Executive Officer and President of the National Alliance for Direct Support Professionals (NADSP) and has worked in the field of intellectual and developmental disabilities for 40 years - beginning as a Direct Support Professional. Macbeth is recognized as an international leader in the advocacy & movement to recognize direct support as a profession and for the past decade, has been a highly sought-after speaker and contributor on the workforce challenges that affected the intellectual and developmental disability service system.
If there is a silver lining to this dreadful pandemic, it might be that the highest levels of government are now beginning to take notice of just how “essential” direct care workers are.
Rader, MD, Editor in Chief, HELEN: The Journal of Human Exceptionality
Maggie Nygren has made a major contribution to the need to use plain, simple, and understand able language, and we believe she has used that premise in crafting this exclusive article for HELEN
Using the Principles of to Improve Knowledge Transfer and Facilitate Informed Decision Making
Defining Plain Language
Plain language is a communication strategy used to transfer knowledge for an audience’s later action. Using the principles of plain language can enhance the ability of professionals to communicate actionable information to nonprofessional audiences.
HELEN Journal is delighted to publish this arti cle on the use of “plain language.” The push for informed decision-making, helping individuals to formulate choices, decisions and self-determina tion rely on an understanding of the words that are used to promote those offerings.
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There are currently 7,151 languages spoken in the world. The single most effective language of them all is “plain language.” Matt Groening, the cartoonist and creator of the TV series, “The Simp sons,” was fond of saying, “I know all those words, but that sentence makes no sense to me.” So many sentences don’t make sense, especially in the realm of science, medicine and technology. In the field of intellectual and developmental disabil ities, language plays a vital part in defining peo ple, allocating services and supports and modify ing the expectations of human performance.
PLAIN LANGUAGE
language is an action-oriented ap proach to knowledge transfer.
By Margaret A. Nygren, EdD, FAAIDD
Introduction
Plain language is not a language itself; it is a way to adapt and present complex information to a non-expert audience so that they can understand and act on it. Plain language has been
Journal.-Rick
Considering Historical and Ethical Perspectives
Plain language is used when it is important for an audience to quick ly understand complex information and take informed action. As plain language informs for the purpose of action, it is an action-oriented com munication strategy.
The principles of plain language can be applied in written, verbal, graphic, gestural, and even sym bolic communication.
of plain language as just simplified language that a speaker or writer can create on the fly, it is more accurate to view it as a sophisticated adaptation targeted to the needs of a partic
Complex or specialized language is desirable or required in some situ ations. Creative works, like poetry or fiction, may rely on intricacies of language to express meaning. Math ematical and musical notations use specialized symbols and syntax to convey information. Technical works may require complex language and imagery to effectively transfer knowl edge between experts. Some kinds of documents (contracts, audits, lab reports, etc.) must follow strict rules to ensure accuracy and to comply with professional standards, legal require ments, and ethical obligations.
Movement toward the adoption of plain language in various settings has been growing in the United States since the 1940s (Schriver, 2017). In the 1990s, the federal cross-agency Plain Language Action and Informa tion Network (PLAIN) was created; its current resources and guidelines are available on its website, www. plainlaguage.gov. Executive orders signed by Presidents Clinton (Exec. Order No. 12866, 1993; Exec. Order No. 12988, 1996) and Obama (Exec. Order No. 13563, 2011) directed fed eral agencies to use plain language in their regulations and communications, and President Obama signed into law the Plain Writing Act of 2010, which required federal agencies to write all public documents in plain language going forward.
While it might be tempting to think
Willerton (2015) contends that use of plain language is an ethical issue: that people have a right to understand the information they receive from government representatives, health in surance companies, and clinicians so that they can act in their own self-in terests. Willerton further suggests that it is unethical not to use plain
Purpose of Plain Language
widely adopted in public health campaigns to reach target audiences, by clinicians to connect with patients and families, and by lawmakers and policymakers to clearly communicate rules and regulations.
Function of Plain Language Summaries
well-organized, concise, and appropriate for the in tended audience (Dingwall et al.,
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Retaining Complex Language
Plain language strategies are frequently used in fact sheets, informationgestures—situationsinstructions,summaries,graphics,andwhereissharedexplicitlysothatarecipientcanlateractusingthatknowledge.Thebasicprinciplesofplainlanguageareusinganactivevoice,positivetone,commonwords,andshortsentenceswhilepresentinginformationinawaythatis
Plain language summaries of doc uments and communications using complex language can be created to facilitate knowledge transfer. Plain language summaries are literal ad aptations of such works and are not line-by-lineSummariestranslations.focusonthe important points or findings that an audience might rely on to make decisions. The function of plain language summaries is identical to that of plain language itself: to adapt and present complex information in a way that a non-expert audience can both understand and act on.
Using the Principles of Plain Language
In the active voice, both the action and the doer of the action are clear (“I threw the ball”). The active voice uses a clear and direct sentence construction that focuses on the doer (I) and the action (threw) rather than on the target of the action (ball)
Plain language favors framing antic ipated outcomes positively rather than negatively, emphasizing benefits to the
The audience may be the doer in the sentence even if they are not named. For example, instructions using the active voice focus on the steps (ac tions) for the audience (the doer) to complete. Announcements and signs using the active voice also focus on actionable information (action) for the audience (the doer) to use.
Use a Positive Tone
Plain language uses a positive tone. Tone is conveyed through the framing of anticipated outcomes and those words and actions that signal an author’s emotional attitude toward the topic or the audience. Emotional atti tude can be signaled by word choice; nonverbal cues the audience attributes to the author’s attitude; and other vo cal behaviors such as rhythm, volume, or pitch (Roberts, 2021).
finding than on the finder. The passive voice is also used when the doer is unknown (“mistakes were made”) or irrelevant to the point of the sentence (“there was an accident that blocked traffic for miles”).
zation and delivery of information will increase the likelihood that the audi ence will understand and be able to act on the new information. The basic principles of plain language—using an active voice, positive tone, common words, and short sentences while pre senting information in a way that is well-or ganized, concise, and appropriate for the intended audi ence—are described below.
Use the Active Voice
Passive Voice
quickly or at all.
Some situations are appropriate for the passive voice. For example, the passive voice is used in a journal article to place greater emphasis on a
In the passive voice, the focus is placed on an action’s target rather than the action or the doer of the action (“The ball was thrown by me”). The passive voice results in generally lon ger sentences that may require the use of additional verbs (Kramer, 2022). Sentences in the passive voice can be harder for some audiences to decode
Several different plain language versions may be required to reach di verse audiences. Simply writing to an eighth-grade literacy level will not re sult in a document that aligns with the everyday language used by audiences of, for example, PhD candidates, small business owners, working parents, and recent immigrants (Federal Plain Language Guidelines, 2011).
Plain language principles can be used to effectively adapt complex information for use by diverse target audiences (PLAIN, n.d.; World Health Organization, n.d.), including people with intellectual and developmental disabilities. Depending on the diver sity of the target audience, attempts to adapt content into plain language may not result in a single, one-size-fits-all product. Language that might be un derstood easily by one audience might not be understood by another audience with different experiences.
The first step in preparing plain language communication is to iden tify the scope of the target audience. The National Archives (n.d.) suggests that authors prepare to write or speak to the intended audience rather than to an audience similar to themselves. Consider if, for example, the audience is all people with intellectual disabil ity or a particular subset, all people at risk of a condition or only those from a particular culture, all people in a neighborhood who would be affected by a policy or only those who take public transportation, and so on.
Identify the Audience
Frame Outcomes
Knowing the boundaries of the tar get audience and using the principles of plain language to guide the organi
language in the promotion of informed consent and decision making, partic ularly in working with those with low health literacy when they face unfa miliar, stressful, and/or challenging situations.
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Plain language uses the active voice. The active voice focuses the audience on either the action or the action doer.
Active Voice
CommunicateAttitudeEmotional
Plain language favors the use of words that are positive or without emotional overtones over those that send a negative message. To increase the likelihood that the audience will accept the new knowledge and act on it, plain language communications must signal a positive—or at least a neutral—attitude toward both the audience and the knowledge being transferred.Publichealth announcements rou tinely adopt a positive or a neutral at titude because fear-based or stigmatiz ing messaging can backfire (Fairchild & Bayer, 2021). Audiences are attuned to verbal and nonverbal cues and are
The Federal Plain Language Guide lines (2011) outline several techniques
Presenting information in a well-organized manner will increase the audi ence’s understanding and use of new information. Organizing information under meaningful headings can en hance an audience’s comprehension of the material when it is presented and be useful to reference later to inform specific actions.
• Avoid including information with out explaining its use.
• Limit graphics to important content and at a scale useful for later action.
Plain language requires both clar ity and brevity to achieve actionable knowledge transfer. Common words can clearly communicate an idea but
may not provide the precision of more complex or formal words. While com mon words may be inexact, they can accurately communicate major points.
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Plain language uses sentences that are short, informal, and to the point. Sentences that are long, formal, and/ or use complex structures are not as effective in rapidly transferring action able knowledge as are those that are short and simple.
• Put action steps in the correct or logical order.
Be Concise
• Chunk information into short, manageable sections.•Provide clear section headings that begin with action words.
Use Short Sentences
Presenting information in a wellorganized manner will increase the audience’s understanding and use of new information.
“
Use Common Words
As described in Lessons from the 2021 Federal Plain Language Report Card (2022), well-organized, plain language content will:
•Limit the length of lists of additional resources or hyperlinks.
Present Information in a Well-organized Manner
audience. Persuasive communication in general favors leading with positive outcomes that receivers can anticipate if proposed actions are followed. The following statements convey the same information but in different tones:
• Positive tone: “Pay by this date to avoid late fees.” “You’ll stay healthy/ feel better by doing this.” “I can talk now, but only for a second.”
less likely to accept and act on infor mation when they feel disrespected, ignored, or that important information has been withheld.
• Negative tone: “Late fees will be added to payments received after that date.” “You’ll get sick/feel worse by doing that.” “I’m too busy to talk now.”
• Begin with an explanation of the reason or purpose for the presentation, image, or document.•Focusthe content on the needs or interests of the audience rather than on the perspective of the author or sponsor.
Plain language is concise. Concise language uses the most effective words to get the author’s point across. Concise language omits words that might add emphasis or grace but do not enhance meaning. For example, in “The information is really critical,” the word “really” can be omitted without changing the meaning of the sentence.
Plain language uses common words and phrases. Common words and phrases are those that are short, informal, and familiar to most speak ers. Common words are the words of everyday life.
In addition to their length, plain language sentences share other char acteristics. The topics of plain sen tences are primarily information- and action-oriented. Nearly all verbs used in plain language are action verbs. Except for presenting information in list form, plain language sentences avoid using clauses or structures that require commas, hyphens, semicolons, or other punctuation to aid a recipient’s comprehension.
• Place the most important information near the beginning and the less actionable information near the end.
• Steer clear of hidden verbs. Hidden verbs are verbs that have been turned into nouns by adding a suf fix (e.g., -ment, -tion, -sion, -ance) and require an ad ditional verb to deliver the action. The sentence “We will announce” is more concise than “We will make an announcement.”
Checklist for plain language. https://www.plainlanguage.gov/resources/checklists/ checklist
Examples of negative tone of voice: 5 errors that can hurt your brand. readpeaker.ai. tones%20in%20speech%20are,up%20to%20share%20that%20emotioner.ai/blog/examples-of-negative-tone-of-voice/#:~:text=Negative%20https://www.readspeak
Federal Plain Language Guidelines. (2011). https://www.plainlanguage. gov/guidelines/
Be Appropriate for the Intended Audience
Plain language is a strategy for adapting complex information for a non-expert audience to easily grasp and act on. The basic principles of plain language are using an active voice, positive tone, common words, and short sentences while presenting information in a way that is well-orga nized, concise, and appropriate for the intendedMaterialsaudience.andcommunications may
REFERENCES
modifiers. “Departments A and B worked together on a joint project” will be more concise with the removal of “together” and “joint.”
promote COVID-19 vaccination and mask wearing could backfire. The Conversation. https://theconversation.com/why-using-fear-to-promotecovid-19-vaccination-and-mask-wearing-could-backfire-153865
Plain Writing Act of 2010, Pub. L. No. 111-274, 124 Stat. 2861 Roberts,111publ274.pdfhttps://www.govinfo.gov/content/pkg/PLAW-111publ274/pdf/PLAW-(2010).K.(2021,August19).
Dingwall, J. R., Labrie, C., McLennon, T., & Underwood, L. (2019). Plain language. In Professional communications (pp. 30–40). Olds Col lege. plain-languagehttps://ecampusontario.pressbooks.pub/profcommsontario/chapter/
Kramer, L. (2022, April 20). Active vs. passive voice. Grammerly https://www.grammarly.com/blog/active-vs-passive-voice
how the audience can or should act on thePlaininformation.language is a sophisticated adaptation of complex information. Developing plain language materials requires an intentional development process of drafting, testing, and edit ing to create an effective adaption of a source document.
Schriver, K. A. (2017). Plain language in the US gains momentum: 1940–2015. IEEE Transactions on Professional Communication, 60(4), 343–383. https://doi: 10.1109/TPC.2017.2765118
Plain language is tai lored so that the intended audience can effectively grasp and act on new information. There is no “universal” plain language adaptation. The words and imagery used in plain language presentations or materials must align with the intended audience’s knowledge and experi ence. To be effective, plain language presentations and materials must grab the attention of the intended audience, describe why the knowledge to be transferred is important, and explain
Conclusion
World Health Organization. (n.d.). Principles for effective communica tion: Understandable. infographics-pdf/communicating-for-health/understandable-web.pdf?shttps://cdn.who.int/media/docs/default-source/ fvrsn=5ae4ffe9_6
use complex language for legitimate reasons. Plain language summaries of documents can be created to facilitate important knowledge transfer for an audience’s later action. Plain language summaries are adaptations of works, rather than line-by-line translations,
• Avoid repetitive synonyms that convey a single concept. “Due and payable” is easily understood using only the word “due.”
Willerton, R. (2015). Plain language and ethical action: A dialogic approach to technical content in the twenty-first century. Routledge.
National Archives. (n.d.). Top 10 principles for plain language. https:// Plainwww.archives.gov/open/plain-writing/10-principles.htmlLanguageActionandInformationNetwork.(n.d.).
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Lessons from the 2021 Federal Plain Language Report Card. (2022, July 21). toplain-language-report-cardhttps://digital.gov/resources/lessons-from-the-2021-federal-developconciselanguage:•Omitredundantwordsandexcess
Exec. Order No. 12866, 3 C.F.R. 1925 (1993). Exec.content/pkg/WCPD-1996-02-12/pdf/WCPD-1996-02-12-Pg189.pdfExec.content/pkg/WCPD-1993-10-04/pdf/WCPD-1993-10-04-Pg1925.pdfhttps://www.govinfo.gov/OrderNo.12988,3C.F.R.189(1996).https://www.govinfo.gov/OrderNo.13563,3C.F.R.215(2011).https://www.govinfo.gov/ Fairchild,content/pkg/CFR-2012-title3-vol1/pdf/CFR-2012-title3-vol1.pdfA.L.,&Bayer,B.(2021,January28).Whyusingfear to
and may become valuable supple ments to the original documents.
Since 2010, Maggie has served as the Executive Director and CEO of The American Association on Intellectual and Developmental Disabilities. She is a nationally respected thought leader in the field of ID/DD. She has propelled public policy advocacy to new levels with 10 amicus briefs and 30 position statements. She cur rently serves on national advisory committees providing leadership for the Federal Communi cations Commission (FCC), National Institutes of Health (NIH), and Centers for Medicare & Medicaid Services (CMS).
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Plain language is not a language it self, nor is it possible to create univer sal plain language materials that will be effective with all audiences. Sever al versions of plain language materials may be required to effectively reach broad and diverse audiences.
Being a caregiver takes a special kind of commitment. We know your strength is super, but you’re still human. FIND SUPPORT FOR YOUR STRENGTH . AARP.ORG/CAREGIVING 1-877-333-5885 BUT IF I’M NOT, WHO WILL? DONYOU T HAVE TO BE STRONGSO
to be regarded in their own communi ties as the most disadvantaged.
In countries with life expectancies over 70 years, individuals spend, on average, about 8 years, or 11.5 per cent of their life span, living with disabilities. (Disabled World)
The Department of Economic and Social Affairs Disability of the United Nations (UN) has produced a fact sheet listing for the estimated 15 percent of the world’s population, or 1 billion people who live with disabilities. The fact sheet includes a general overview, including education, employment and information about violence. Most reports regarding individu als with disabilities and their conditions usually refer to individual countries or regions. This UN review provides a broader comparative analysis of the “world’s largest minority” and the consequences faced by individuals with disabilities, their families, countries and the world.
An estimated 386 million of the world’s working-age people have some kind of disability, says the In ternational Labor Organization (ILO). Unemployment among persons with disabilities is as high as 80 percent in some countries. Often, employers assume that persons with disabilities are unable to work. (ILO)
According to “Disabled World”, women with disabilities are recog nized to be multiply-disadvantaged, experiencing exclusion on account of their gender and their disability.
A small 2004 survey in Orissa, India, found that virtually all of the women and girls with disabilities were beaten at home, 25 percent of women with intellectual disabilities had been raped, and 6 per cent of women with disabili ties had been forcibly sterilized.
OVERVIEW
In most OECD countries, women are reported to have higher incidents of disability than men.
Disability rates are significantly higher among groups with lower educational attainment in the coun tries of the Organization for Econom ic Co-operation and Development (OECD). On average, 19 percent of less educated people have disabilities, compared to 11 per cent among the better educated.
United Nations, Department of Economic and Social Affairs
Even though people with disabilities constitute a significant 5 to 6 percent of India’s population, their employ ment needs remain unmet, says a study by India’s National Centre for Pro motion of Employment for Disabled People. This is even in spite of the “People with Disabilities” Act, which reserves for them 3 percent of govern ment jobs. Of some 70 million persons with disabilities in India, only about 100,000 have succeeded in obtaining employment in industry. (NCPED)
A 2004 United States survey found that only 35 percent of working-age persons with disabilities are in fact working, compared to 78 percent of those without disabilities. Two-thirds of the unemployed respondents with disabilities said they would like to work but could not find jobs. (Interna tional Disability Rights Monitor, 2004)
By H. Barry Waldman, DDS, MPH, PhD Rick Rader, MD, FAAIDD, FAADM Steven P. Perlman, DDS, MScD, DHL (Hon) Allen Wong, DDS, EdD, DABSCD
Comparative studies on disability legislation shows that only 45 coun tries have anti-discrimination and other disability-specific laws.
Disability Fact Sheet
Around 15 percent of the world’s population, or estimated 1 billion people, live with disabilities. They are the world’s largest minority. This figure is increasing through popula tion growth, medical advances and the aging process, says the World Health Organization (WHO). Eighty percent of persons with disabilities live in developing countries, according to the UN Development Program. (WHO)
The World Bank estimates that 20 percent of the world’s poorest people have some kind of disability, and tend
According to UNICEF, 30 percent of street youths have some kind of disability.Mortality for children with disabilities may be as high as 80 percent in countries where under-five mortality as a whole has decreased below 20 percent, says the United Kingdom’s Department for International Devel opment, adding that in some cases, it seems as if children are being “weed ed out”. (World Bank)
Women and girls with disabilities are particularly vulnerable to abuse.
30 | HELEN • helenjournal.org AADMD
EMPLOYMENT
Steven P. Perlman, DDS, MScD, DHL (Hon) is Clinical Professor of Pediatric Dentistry, The Boston University Gold man School of Dental Medicine.
In the OECD countries, students with disabilities in higher education remain under-represented, although their numbers are on the increase, says the OECD.
REFERENCE
The global literacy rate for adults with disabilities is as low as 3 per cent, and 1 per cent for women with disabilities, according to a 1998 UNDP study. (UNDP)
United Nations. Department of Economic and Social Affairs Disability. Factsheet on Persons with Disabilities. Available from: factsheet-on-persons-with-disabilities.htmlun.org/development/desa/disabilities/resources/https://www.
The Job Accommodation Network (JAN) of the U.S. Department of La bor’s Office of Disability Employment states that the employers in the 2010 study reported that a high percentage (56%) of accommodations cost abso lutely nothing to make, while the rest typically cost only $600.
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).
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Rick Rader, MD, FAAIDD, FAADM, DHL (Hon) is Director, Habilitation Center, Orange Grove Center; Presi dent, American Association on Health and Disability; Member, National Council on Disability; Board, American Academy of Developmental Medicine and Dentistry; National Medical Advi sor, National Alliance for Direct Support Professionals; Board, National Task Group on Intellectual Disabilities and Dementia Practices.
Companies report that employees with disabilities have better retention rates, reducing the high cost of turn over, says a 2002 U.S. study. Other American surveys reveal that after one year of employment, the retention rate of persons with disabilities is 85 per cent. (Unger, 2002)
Research indicates that violence against children with disabilities oc curs at annual rates at least 1.7 times greater than for their peers without disabilities. (Global Campaign for Education, 2011)
Persons with disabilities are more
likely to be victims of violence or rape, according to a 2004 British study, and less likely to obtain police interven tion, legal protection or preventive care. Persons with disabilities are more likely to be victims of violence or rape, according to a 2004 British study, and less likely to obtain police interven tion, legal protection or preventive care. (Dodd, Tricia, et al., 2004)
A 2003 study by Rutgers Univer sity found that people with physical and mental disabilities continue to be vastly underrepresented in the U.S. workplace. One-third of the employ ers surveyed said that persons with disabilities cannot effectively perform the required job tasks. The second most common reason given for not hiring persons with disabilities was the fear of costly special facilities. (Dixon, Kruse, Van Horn, 2003)
U.S. Department of Labor. The 1990 national census revealed that they have a higher rate of self-employment and small business experience (12.2 per cent) than persons without disabilities (7.8 per cent). (US Census of Popula tion and Housing, 1990)
H. Barry Waldman, DDS, MPH, PhD is SUNY Distinguished Teaching Professor Department of General Dentistry, Stony Brook University, NY.
EDUCATION
Thousands of persons with disabil ities have been successful as small business owners, according to the
VIOLENCE
Ninety percent of children with dis abilities in developing countries do not attend school, says UNESCO.
For every child killed in warfare, three are injured and acquire a per manent form of disability. (Disabled World)Insome countries, up to a quarter of disabilities result from injuries and violence, says WHO.
When we met with Richard in Ukraine and talked about his son at that time, we really had no clue as to the precarious situation that Hen ry was in. Richard went on to visit another institution after he left us. His piece on the Today Show on June 13th dramatically showed the terrible state that those with IDD were in. You could see it in their eyes, voices, as well as in their physical states. As he walked around the facility, Richard was clearly moved. He held their
neurodevelopmental disorder creates prominent health challenges which place the person often in great need of supports from the time they are born, and often continue to some degree throughout their life. Most of those with IDD in Ukraine can be supported and the fate that came to Henry should not necessarily be inevitable—and yet that is exactly what does happen. The solutions to help make a real differ ence appear to be elusive. But should theyWhybe?must supports at home and community care not be available, and why is institutionalization the “solu tion” for many with IDD in Ukraine?
PART THREE
We visited the Chernivtsi Oblast gov ernment leadership for answers. The Oblasts are somewhat equivalent to a province or a state in other parts of the world. Each Oblast has its own local government, and there are number of ministries responsible for various
I Recently Visited
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How and Why UKRAINE
The BBC recently posted their piece on their work which we were involved with while in Ukraine—BBC World News - Locked Away: Ukraine’s Sto len Lives These visuals and interviews only further expand upon the dire situ ation taking place in Ukraine and will continue unless something is done.
He had to be thinking of his son throughout this trip. I can only imagine what else he must’ve been thinking: what if these individuals had even a small percentage of the help that his son had received? What if they lived with their loving families and had a supportive community?
Iwas
Actions Are Louder Than Words
hands, and spoke to them so warmly. His comments were touching, stating that they were “Victims of a cruel biological fate…” and how the war had created additional challenges and stresses. But aren’t they also victims of the system in which they live?
By Seth Keller, MD
so very sad to hear that Rich ard Engel’s son, Henry, passed away from complications related to his neurodevelopmental disor der, Rett syndrome. He was only six years old. He had all of the love and support of his parents, as well as ac cess to the latest research and experts in the field. Despite all of the care he received, Henry’s fragile and progres sive condition cut short his life.
There is no doubt that the underlying
services. We met with the education, health and social service ministry leaders alongside the Deputy Chief of Chernivtsi, Oblast Irina Isopenko. Our DRI team met them at one of the governmental buildings in a beautiful part of the city. Security was tight. Once inside, we did a little walk about the building. We saw many Ukrainian flags, photos of what appeared to be military personnel, as well as maps of the country. We walked up a large spiral staircase and were led to the office of the Deputy Chief. We waited for a while outside the office; several others joined us, including a photographer, and then we finally were led inside.
The longer-term healthcare goals were related to the care of the common health complications often seen in this
A values-based system needs to be addressed as well. When individuals with IDD are devalued at all the levels of Ukrainian society, then the priorities to make a change, especially when a war is going on, need to be addressed. A focus on what would be considered as a crisis, high priority, or even a basic need will have to be strategized, and an action plan set into motion. I’m sure many people reading this story can easily give personal testimony on how and why their loved one with IDD matters as a person and deserves every right to be valued, and that they deserve the same kind of supports
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Chernivtsi Oblast leaders meeting with DRI. Photo provided by Seth Keller, MD
the war and any great discussion on reform, as well as an understanding on those that may have been displaced. They didn’t deliver a lot of details and real answers. I felt that they would be open to more dialogue in the future.
Disability Rights International (DRI) recently held a webinar with several other international children’s and dis ability rights organizations, including Save the Children, UNICEF, and the Better Care Network. Marisa Brown and I participated in the webinar and spoke about the current health cri sis that those with IDD face in the Ukrainian institutions. Malnutrition, muscle and bone loss, lack of social ization and immediate concerns for aspiration pneumonia were all health consequences that desperately needed the most attention NOW!
population, including seizure manage ment, spasticity care, oral healthcare, nutritional supplementation, and bowel care. The care and supports for behav iors associated with autism also are extremely needed. All of the speakers on the panel were very enthusiastic, and they seemed to be dedicated.
Eric Rosenthal, Halyna Kurlyo and I sat in the Deputy Chief’s office at a large desk across from her and the other ministry leaders. Halyna served as the interpreter. They all were very pleasant. The priorities focused on
Knowing how to provide someoneinterventionearlytobornwith relatively significant havestandardsdocumented,disabilitiesneurodevelopmentaliswellandofcarebeencreated over the course of many years by experts around the world. The cultural awaking that those with IDD have value, and matter, along with federal and international policies all exist to support and strongly encourage that these various practices of care be de livered. The scope and breadth of care delivery, however, even in more so cially forward minded countries, still lags behind what many of us would deem to be adequate services for this population which is still all too often devalued and marginalized, including in the United States.
part of your community. Article 19 of the UN Convention on the Rights of Persons with Disabilities establishes a right to live in the community with choices equal to others. Yet, millions of children and adults with disabilities remain detained in orphanages, psy chiatric facilities, and other institu tions around the world. Ukraine needs to respect and follow this Article.
The Ukrainian government, from the federal level all the way down to the local level, must appreciate what we would consider basic human rights for those with IDD. One key basic right is to live with your family and be a part of your community.
Bringing these health standards into Ukraine and having them sys temically embedded into their society at all levels will take an enormous amount of time and effort— from
What about support ing the building of supports for families and healthcare.?includingcommunity,thatof
There are ongoing conversations taking place among a number of inter national organizations to help support children and those with disabilities in Ukraine. It is not clear how far these plans have come, nor is it apparent that specific healthcare practices and
traditionally donate money to a great number of organizations and caus es. The terrible tragedy unfolding in front of our eyes, the war in Ukraine, has also raised billions of dollars, including a huge amount from the US government. Much of the funds go to military support, but some are appar ently earmarked for “humanitarian” aid, whatever that really means. The great concern is that if there is any support for those with IDD, it may go into making Ukrainian institutions “better.” Richard Engel interviewed the director of the faculty that he visited, who complained that the war prevented much needed improvements to his institution.
The Ukrainian government, from the federal level all the way down to the local level, must appreciate what we would consider basic human rights for those with IDD. One key basic right is to live with your family and be a
The Ukrainians are amazing people! They are steadfast and resilient in their battle against the aggressive Russian Federa tion. Ukrainians are very proud of their country and of their heritage, separate from their past as part of the Soviet Union as well as to any historical or cultural ties to “Mother Russia.” My visit to Ukraine and my interactions with a growing number of Ukrainians from inside the country provided a real sense that they wish to be a part of the global community, and share their cul ture, and work with others. What I am only beginning to understand is how this translates to the specific issues of those with IDD.
“
and care like any other citizen. Why shouldn’t the same be true in Ukraine?
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How can a change be made? And by whom? There is no doubt that a num ber of international organizations seem to be motivated to offer support. We did work and bump into several orga nizations in Ukraine which were doing just that. But, was the help being pro vided only putting a Band-Aid over a big problem which needs an overhaul? Giving an institution a new swing set, coat of paint or a new washing machine is not the answer. Would this temporary “fix” delay the much-need ed reform? The ultimate goal and priority would be to support those with IDD and their families in their local communities to have access to quality services. A major reali zation is that reform must be accepted as necessary from within Ukraine, and Ukrainians from all walks of life and from all levels of society must be willing to acknowledge that reform is needed now.
standards are being discussed. My firsthand experience is that early intervention to support the physical and mental health of those with IDD throughout their lifespan was not being done, and tremendous inequal ities of care exist. This is leading to a high rate of morbidity and mortality of those in Ukrainian institutions. Tragi cally, it is very possible that those who are even more fragile when born may not survive the first few days or years of their lives.
What are actions that can make a difference? What is a difference that “matters”? I suppose this is all in your perspective and what is viewed as meaningful and as something that you can realistically do. I know many Americans are very generous and
Seth M. Keller, MD is a board-cer tified neurologist in private practice with Neurology Associates of South Jersey. He specializes in the evalua tion and care of adults with Intellec tual 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 Devel opmental Medicine and Dentistry (AADMD). He is the co-president of the National Task Group on Intellectu al Disabilities and Dementia Practices (NTG).
There are a number of public health colleagues and healthcare specialists in Ukraine now who, no doubt, are in a position to work together to help make a change. Some of the challeng es include the war, fragmentation of care across the country and within various regions, as well as cultural indifferences and priorities.
We have been having discussions with a number of Ukrainian leaders in IDD and healthcare fields. We will be hold ing a webinar sponsored by the AAD MD called Healthcare for Ukrainians with IDD: A Country in Crisis on September 20, at 12 pm EST. willasIDDwellhealthcareThisaadmdconference.com/webinars)(https://webinar,willincludeUkrainianprovidersandadvocates,asasthosefromtheUSsupportingcare,includingmyselfaswellfromSpecialOlympics.ThepanelbemoderatedbyNancyThaler.
Yuliya Snyder, is a pediatric neu rologist born and trained in Ukraine and living in Rochester New York. She has been instrumental in helping to get much-needed medical supplies to hard it Kharkiv. (‘It’s just amaz ing’: Rochesterians help doctors on ground save lives in Ukraine | Roch esterFirst).Allefforts, big and small, matter and can make a difference! The world community is what we make of it, a family of others who share many of our same daily issues.
louder than word. Each of us has the power to make a dif ference. Creating awareness by just talking about it, and creating noise helps build momentum. If you have some level of knowledge and influ ence within your own organization and can chat with your leadership to reach out to like-minded colleagues in Ukraine, why not start now? If you and your organization have it within their mission and discretion to put together a task force and reach out to others like ours in the US, plus those in Europe and within Ukraine, then why not do it?
ments in state and federal care and supports for those with IDD and their caregivers.Actionsare
Many will recognize her for all the years in which she helped to spear head efforts that have led to improve
Richard Engel with his wife, Mary Forrest, and Henry. Courtesy Richard Engel
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Since the beginning of this war, a number of our US-based IDD support organizations have been working and connecting with key European IDD organizations, including the Europe an Association of Service Providers (EASPD). This group has been very supportive of people with IDD from Ukraine who became refugees after the war began. Over the past several months, attention for their supports continue to be provided, but also help ing in possibly returning back to their homes if at all possible.
within Ukraine, and also from the international community working with various key sectors who would employ the education, training and much needed resources.
As a leader in the American Acad emy of Neurology (AAN) Section
of Adults with IDD, I have been in discussions with the AAN to help determine who can be more support ive of Ukraine, especially those with IDD who have a predominance of
neurologic complications including spasticity, autism, and cerebral palsy. All of these conditions have neuro logic standards of care in which the AAN and the AADMD and other organizations can help to work with those in Ukraine— to help ensure that these standards can be implemented.
“Every day, we build a more in clusive world for thousands of New Yorkers through education, technolo gy, health, residential and recreational programs in all five boroughs.” (Home - ADAPT Community Network, 2022).
ADAPT Community Network, in partnership with Positive Exposure has been working to address these disparities, particularly in the aging community. ADAPT Community Network, formerly known as the
Positive Exposure is a nonprofit organization that promotes an inclu sive world through photography, film, educational programs, exhibitions, lectures, and workshops, says Rick Guidotti, the organization’s found er. For the last 25 years, they have
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Future
Framing the
in 2022, with many healthcare advancements and drives towards more social and medical equity, there are still inclusion and representation obstacles that people face in relation to healthcare. People with Developmen tal Disabilities (DD) are no different, especially as they age. They want to be seen for the person they are, not just for their presenting symptoms or, in this case, disability. According to the Center for Disease Control (CDC), DD is defined as “a group of conditions due to an impairment in physical, learning, language, or behavior areas. These con ditions begin during the developmental period, may impact day-to-day func tioning, and usually last throughout a person’s lifetime” (Holm, 1989).
A partnership grows as the medical community embraces a more equitable model of inclusion and proficiency in relation to patient care and aging.
By Kelly Spina, LMSW
collaborated globally with nonprofit organizations, hospitals, medical schools, educational institutions, and advocacy groups to promote a more equitable and compassionate world where individuals and communities at risk of stigma and exclusion are understood, embraced, and celebrated’ (About POSITIVE EXPOSUREPositive Exposure, 2022). The organi zation was started after Rick had been established globally as a high fashion photographer and in response to seeing a lack of diversity in the modeling world. Through his work and advoca cy, an everlasting impression has been left that redefines beauty, community, andThisnorms.partnership is made possible through FRAMES (Faces Redefining the Art of Medical Education). “Our FRAME initiative is a web-based film library that is changing how medical information is presented to healthcare providers in training, practitioners, families, and communities,” Rick
Even
United Cerebral Palsy (UCP), is a nonprofit organization that, for the last 75 years, has been proving services to people diagnosed with DD and their families across New York state. Mission-driven, they aim to empower people through innovative solutions using a person-centered approach. Additionally, they are a leading human service not-for-profit and a pioneer in providing cutting-edge programs and services for people with disabilities.
“The future has a lot to look forward to,” says Alicia Holness, Director at ADAPT Community Network where Denise and Della attend. “These initia tives and these agencies ensure that a bright and equitable future of health care is within the grasp of all and that we can be a generation that learns how to deliver better services that are inclusive and sensitive to all.”
REFERENCES
“
I have had to fight to be heard in doctors’ offices my whole life. They like to assume they know before they hear me, but only I know.
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Kelly Spina, LMSW has been in the field of social services and develop mental disabilities for over 10 years. In her current role as Senior Coordi nator of Operations, she oversees the Day Habilitation division for ADAPT Community Network (formally United Cerebral Palsy of NYC). Kelly has her Master’s degree in Social Work and is a licensed therapist and researcher.
Denise Farmer, who will be turning 60 this year, reflects. “Sometimes, I have something going on, and they want to believe it’s related to my diagnosis or something I already have going on. But I want to be checked and ensured it’s not something new, just because I have this preexisting condition. I want to hear options and solutions as well so I can still do the things I enjoy as I get older.” She’s had a lifetime of fighting and advocat ing for her healthcare. The message Denise really wants to convey to practicians is that there’s a better way to see and treat patients. The hope is that things look up
- Della Livingston, 75 years old
“We have identified an urgent need for future multidiscipline healthcare teams to have a more robust and interpersonal understanding of diver sity across the social determinants of health. Through this project, med students will have access to firsthand experiences that will shape them professionally to be better at treating, training, and supporting patients,” Rick boasts. He hopes that these proj ects will leave an everlasting effect on the field and infuse more sensitivity to diverse, yet underrepresented popula tions.
Through this partnership that em phasizes representation of lived expe riences, ADAPT Community Network and Positive Exposure aim to increase awareness within the medical com munity of the inequities and existing cultural biases – and the impact of dis ability at the intersections of race and ethnicity on quality of life and health outcomes. Both groups hope that these quality trainings will promote an awareness of the fallacies that exist, so
states. “Each brief film weaves critical medical information with personal and lived experiences, placing humanity at the forefront of medical education and training.” He and his team have started with five short films in various areas, including aging, dermatology, mental health, oral hygiene, and rare diseases.
munity Network for the last 60+ years. Under the bright lights of the set, rest ing comfortably in her chair and ex changing quips with the crew, she ex plains how her aging has contributed to slowing down; noticing too that in a lot of ways, the disability disappears and blends more with typical seniors. Seniors who are only just now expe riencing symptoms which have been attributed to the DD population for the duration of their life, which included conditions like mobility impairment, loss of muscular use, diminished abil ities in hearing and vision. “I have had to fight to be heard in doctors’ offices my whole life. They like to assume they know before they hear me, but only I know,” Della says with a coy smile of confidence. “Sometimes I’m not even bothered to be consulted with. They’ll ask my aide or respond to them with my questions.”Thisisn’t revo lutionary or feelingitiespleinformation.newPeowithdisabiloftenreportoverlooked or unseen at their own medical ap pointments and therapies, and the concerns just escalate from there. This is especially true when introducing the complexities of aging on top of it.
On set, Della Livingston, age 75, reflects on her experience growing up with cerebral palsy. Della has been receiving services from ADAPT Com
1. ADAPT Community Network. 2022. Home - ADAPT Community Network. [online] Avail able at: [Accessed<https://adaptcommunitynetwork.org/>26July2022].
3.Positive Exposure. 2022. About POSITIVE EXPOSURE - Positive Exposure. [online] Available at: 2022].about-the-program-2/><https://positiveexposure.org/[Accessed24Julyfromhereandthatnewly-agingDDandnon-DDpopulationscanlookforwardtomorerobustandadequatehealthcare.Onethatincludestheminmedicaltrainings,representsthemininformationals,andpromoteslearningfrompastmistakesofformerphysicians.
2. Holm, V., 1989. Developmental Disabilities: Delivery of Medical Care for Children and Adults. JAMA: The Journal of the American Medical Association, 262(20), p.2935.PE Web
practitioners can be more equipped to support diverse patients and clients as they launch into their careers.
EDUCATIONAL OUTREACH
NeuralDancingTango:
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By Dr. Martha Summa-Chadwick, DMA Steve Weiser
Music
is deeply woven into the fabric of hu man civilization. Ancient artwork from the earliest human cultures suggests that music was once used as an early form of commu nication. Ongoing science-based research now confirms that music can play an essential role in brain development by helping to promote neuroplasticity. Most people think that listening to their favorite music is a delightful form of entertainment or a lovely spiritual experience, without realizing that music can also be utilized as a powerful ther apeuticBiomedicalmodality.music protocols can assist people with motor, speech, and cognition challenges, including stroke, autism, dementia, traumatic brain injury, and many other diagnoses resulting from rehabilitation challenges due to trauma or disease and intellectual and/or developmental disabilities. An extraordinary amount of excellent research highlighting these benefits has been published in neuroscience journals
called Chamber Music for Body and Soul. Most people attend a concert to hear music they love; this concert series achieves that goal and helps the audience learn something new about how music works with the brain. These events feature works by composers with neural afflictions, paired with pre-concert lectures to explain how the condition may have affected the composition process. Forms of dance are also featured, so that the audience can directly experience the power of “muscu lar entrainment” as they are encouraged to tap a finger or a toe along with the music.
The 501(c)3 nonprofit organization Music Therapy Gateway in Communications (MTGIC) was founded in 2002 to help bring this knowledge of the powerful con nection between music and the brain to both the medi cal profession and directly to the consumer. Advocacy concerts, presentations, residencies, and educational guidance to raise this awareness have focused on many different audiences, including physicians, therapists, ed ucators, musicians, parents, and caregivers, to stretch the paradigms of bringing this knowledge into an expansion of music in healthcare.
for the last three decades. Unfortunately, this knowledge has not filtered down to the consumers who would di rectly benefit from such knowledge, such as physicians, patients, and therapists. Concurrently, statistically signif icant data from large-scale clinical trials are lacking to confirm the efficacy and the cost-effectiveness of music protocols in therapeutic use. As a result, insufficient business plan models are available to medical CEOs and university chancellors to justify expanding music ther apy programs; only a few medical/educational profes sionals are currently interested in implementing music in their own regional hospitals, therapy centers, and school systems.
Erie Philharmonic outreach projects also include working with children at the Barber National Institute.
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During the 2020 pandemic lockdown, when live concerts were not possible, MTGIC and the Erie Phil harmonic collaborated to create a unique video learning series called “The Neural Tango” to educate their au dience in various elements of music and the brain. For the Erie Philharmonic, these efforts are part of ongoing community engagement initiatives.
Tango:
One of MTGIC’s most effective outreach projects has been an annual concert series (beginning in 2013)
This concert format reached the interest of strate gic musical personnel in Erie, Pennsylvania, in 2015, when MTGIC collaborated in a weeklong residency of concerts and presentations with Gannon University, the Erie Chamber Orchestra, and the Barber National In stitute. The response to these events was very positive, and more collaborative efforts were soon under way between the Erie organizations and MTGIC.
a thoughtful conversation regarding of the differences between music therapy and music enrichment. The importance of music education, the potential of music for pain management, andmusictiesdisabiliwithpersonssionincluwithtoofimpactthemusichelpforandin
Dr. Martha Summa-Chadwick and Craig Stevens discussing biomedical music protocols in the Neural Tango video series.
DMA, Executive Director, MTGIC; and the principal players of the Erie Philharmonic string quartet. Discussions in the series include topics regarding the specific appli cations of music therapy and how
The video series brings together skilled professionals in music, educa tion, physical therapy, music therapy, and those with personal knowledge of working with persons challenged with disabili ties. The expert panel
The Organizations
society are also included in the panel discussions. Another topic reveals that some of the greatest composers in the history of Western music had forms of neural afflictions; the panel experts discuss how these challenges likely
Philharmonic;torExecutiveStevePhilharmonic;torMusicconductorDanielincludesMeyer,andDirecoftheErieWeiser,DirecoftheErieBrian
40 | HELEN • helenjournal.org Erie Philharmonic: The mission of the Erie Philharmon ic is to strengthen the Erie community and region by providing high-quality live orchestra concerts and programs that enrich, entertain, and educate people of all ages. In existence since 1913, the Philharmonic is one of the oldest professional ensembles in the coun try and is recognized on a national level as one of the top orchestras in its budget size. With a season that features 13 mainstage performances at the Warner Theatre, various summer programs, a free chamber music series, four Youth Concerts and numerous out reach events, the orchestra reaches more than 50,000 people across the region annually. (www.eriephil.org)
fied Music Therapist and founder and owner of Lake Erie Music Therapy; Elizabeth Darling, DPT, Physical Therapist and U.S.A. Olympic team trainer; Martha Summa-Chadwick,
The benefits of potential collab oration between music therapy and physical tail,spokenprofessionalstherapyareofindeinadditionto
Music Therapy Gateway in Communications (MTGIC): The mission of MTGIC is to 1.) disseminate informa tion regarding biomedical music protocols through concerts, lecture concerts, or concert workshops, 2.) Encourage and facilitate open discussion for music in medicine and education by bringing together groups of researchers, doctors, therapists, behavioral spe cialists, educators, musicians, parents, and caregivers to create innovative musical solutions for those with psychosocial, motor, speech, or cognition challenges. (www.mtgic.org)
Hannah, musician and program host on WQLN, Erie’s NPR-affiliate radio station; Maureen Barber-Carey, Executive Vice Presi dent of the Barber National Institute in Erie; Craig Stevens, Board-Certi
music is used as a direct pathway to activation of non musical networks, such as span,tioning,executivegait,funcattentionandspeech.
This video series was designed as a model of the strength of output made possible when professionals with different backgrounds sit around the same table to help solve a problem. “
Speranza L, Pulcrano S, Perrone-Capano C, di Porzio U, Volpicelli F. Music af fects functional brain connectivity and is effective in the treatment of neurological disorders. Rev Neurosci. 2022 Mar 24. doi: 10.1515/revneuro-2021-0135. Epub ahead of print. PMID: 35325516.
RESOURCES
van Vugt FT, Hartmann K, Altenmüller E, Mohammadi B, Margulies DS. The impact of early musical training on striatal functional connectivity. Neuroimage. 2021 Sep;238:118251. doi: 10.1016/j.neuroimage.2021.118251. Epub 2021 Jun 8. PMID: 34116147.
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made these individuals even better composers despite their disorders. The series also includes an in-depth discussion of the amazing changes that occur in the brains of long-term musicians as neuroplasticity fuses the auditory and motor systems.
Thaut, M. H., & Hoemberg, V. (Eds.). (2014). Handbook of neurologic music therapy. Oxford University Press.
Martha Summa-Chadwick, DMA, has achieved a national reputation as an educator, pre senter, performer, and advocate for the cause of music in ther apy. She is Executive Director of the nonprofit organization Music Therapy Gateway in Communications.
The final module unifies all the information into an experiential performance of Beethoven’s String Quartet in F minor, Op. 95, specifically performed for this video series by the principal players from the Erie Philharmonic. Referred to as the “Serioso” quartet by Beethoven himself, it is the shortest of all his string quartets but seems to reflect the emotional state of Beetho ven’s own life as he sank deeper into complete deafness. The opening movements portray struggle, rage, and the depths of despair. Finally, at the end of the last movement, the emotions shift suddenly from hopelessness to a feeling of joy and triumph of the human spirit. This experiential performance mirrors how wonder fully music can help those with motor, speech, and cognition afflictions rise to the challenge of creating a better quality of life through music.
Recommended Books: Levitin, D. J. (2006). This is your brain on music: The science of a human obses sion. New York, N.Y: Dutton.
Steve Weiser, Executive Direc tor, began his tenure with the Erie Philharmonic in August 2015. As a percussionist with the orchestra for three seasons, Mr. Weiser has helped usher in a new era for the 108-year-old organization, now performing in a stunning, newly renovated Warner Theatre.
Indeed, music has the potential to revolution ize healthcare.
This video series was designed as a model of the strength of output made possible when pro fessionals with different backgrounds sit around the same table to help solve a problem. It is a free resource that can be utilized by any person or organization who would like to educate their audience in the benefits of music and the brain, and can be found on the Erie Philharmonic web site at https://eriephil.org/neuraltango. By col laborating on this project, MTGIC and the Erie Philharmonic have provided a platform directly to the consumer for raising awareness about the benefits of music and the brain. Once societal awareness is raised, there will be much greater ease in promoting music into the mainstreams of healthcare and education, where so many people would benefit.
Sacks, O. (2007). Musicophilia: Tales of music and the brain. New York: Alfred A. Knopf.
Recent Sample Articles: Gassner L, Geretsegger M, Mayer-Ferbas J. Effectiveness of music therapy for au tism spectrum disorder, dementia, depression, insomnia and schizophrenia: update of systematic reviews. Eur J Public Health. 2022 Feb 1;32(1):27-34. doi: 10.1093/ eurpub/ckab042. PMID: 34595510; PMCID: PMC8846327.
the driver behind the addition of this program to Annandale’s services. To this day, I love sharing the story about how he approached me with his dream of a community-based program.”
ing puzzle piece has recently snapped into place – the introduction of an independent community-based living program.
This is when Pomeranz introduced a new member to the team – Jeff Metzger, an educator and someone who has worked extensively with chil dren and young adults with disabilities throughout his career. Metzger joined the independent living program in 2021 with the charge of rebranding and building, per Annandale’s current strategic plan and vision.
All In participants. Courtesy Annandale Village (Facebook @LineAllIn22)
“What I kept seeing in working with students and young adults was that we were doing a great job in the school
“We first began establishing the framework for this program in our initial strategic plan back in 2014,” explained Annandale Village CEO and President Adam Pomeranz. “We recognized this need for independent community living and support, both on a wider level as well as due to the keen interest of Jay, who lived at Annandale Village at the time.”
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All In is All Out
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The vision came to fruition in 2018, when what was then simply known as the Independent Living Program first launched, with Jay as the inaugural participant.
Nestled
But with a mission of providing “progressive life assistance,” a per sistent Villager who was eager to gain skills and live in the community, and a visionary CEO with a clear roadmap for the future of Annandale, one miss
“I was ready to take the next step in my independence,” Jay said. He first moved to Annandale Village in 1996, and with the assistance and support of the Annandale team, immediately began working on developing indepen dent-living skills.
Annandale Village’s “All In” participants can live in homes of their choice throughout the metro Atlanta area
near the foothills of the north Georgia moun tains, just 30 miles north east of Atlanta, Annandale Village has served as a residential community for adults with intellectual and developmental disabilities and acquired brain injuries for more than 50 years. The idyllic setting – original ly a working farm – is 55 acres of pure bliss, where these extraordinary indi viduals are able to live their lives at varying stages of independence. From independent living to skilled nursing and everything in between, Annan dale’s “Villagers,” as they proudly call themselves, are able to experience a full continuum of care throughout their lives, making Annandale one of only three programs in the United States offering this full spectrum of service and care.
“Jay was eager to live in the com munity,” Pomeranz said. “He is really
The program added two new partic ipants in 2019 and was making great strides toward continued growth, when the COVID-19 pandemic in 2020 tem porarily halted those plans. But rather than sit idle, the Annandale team rec ognized the need for more inclusivity and more individualized support for adults preferring to live in the commu nity with minimal assistance.
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.
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.
“The taskforce was drawn to the name ‘All In’ by definition – to be ful ly committed to something,” Metzger explained.Alongwith a new name came a new logo and fresh look – a hexagon shape representing compassion, harmony andAllbalance.Inparticipants are able to live in apartments or homes of their choice throughout the metro Atlanta area; many have opted to remain near the Annandale Village campus, both in order to be closer to each other and
Under Metzger’s guidance, All In has grown to nearly 10 participants. A life coach was recently added to the team to further support the participants in their life goals. The individuals work closely with Metzger and the life coach to build individualized, person alized plans suiting their respective needs.Participants can have anywhere from one to up to 12 hours per week of extra support from Metzger and his team, including daily check-ins, healthcare coordination and wellness visits and 24/7 on-call services for emergencies as well as continued life skill straining and basic employment services.
and Proud Supporter of HELEN: The Journal of Human Exceptionality
systems of working on employment skills and soft skills, but we were not tackling independent living skills at all,” Metzger said. Under Metzger’s guidance and leadership, as well as the development of a taskforce including staff, community members, current and prospective families and referral sources, the independent living pro gram was officially rebranded as All In in 2022.
They want more interaction not just with each other but within the com munity, and not just via work but by volunteering and with other social opportunities.
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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.
As for Jay, it’s a “dream come true” from when he first visited with Pomer anz and shared his idea of living in the community. “The patience of waiting for All In to be established could be difficult at times!” he added, laughing. “But do what you gotta do, and your dreams will eventually come true.”
The mission of Annandale Village as well as the All In program is to provide progressive life assistance to adults with developmental disabilities and acquired brain injuries so that they can maximize their abilities and main tain their independence in the least restrictive environment. For more, visit annandale.org and liveallin.org.
“My first goal coming in was to listen to the current participants and learn what they want,” Metzger said. “And they all want the program to grow, which was very encouraging!”
also to be able to take part in the vast amount of services Annandale offers.
A Passion for Supporting the IDD Community
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THE MORE YOU UNDERSTAND HER WORLD, THE MORE POSSIBILITIES YOU SEE.
© 2019 Sesame Workshop. All rights reserved.
For Julia’s family, early screening for autism made a lifetime of di erence. Find out more at ScreenForAutism.org
Celebrating the ADA Challenging Health Care Inequities
Chairman, National Council on Disability
Now, 32 years af ter the ADA, NCD is urgently calling on Congress and the Adminis tration to ac t 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.
Doc tors 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 expec t paint the fullest pic ture of the need if we’re not being counted.
Andrés J. Gallegos
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 protec tions for people with disabilities and we authored the initial draf t of the Americans with Disabilities Ac t (ADA).
Comprehensive disability clinical care curriculum and training; adoption of enforce able accessible medical and diagnostic equipment standards; designation of people with disabilities as medically underser ved 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.
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 countr y changed for the better as a result.
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aadmd.org
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Associate memberships available for non-clinicians as well.
People-centered care means all your health professionals work together.
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.
Join AADMD - Health professionals united in one voice for inclusive health
Patients with IDD shouldn’t have to advocate alone.
