ISSUE NO. 1 JUNE 2022
OUR NEW JOURNAL Bringing the Vision to Life STATISTICS ON
Disability and ABUSE
How ADHD Affects
SLEEP
ENDORSED BY
helenjournal.org • HELEN | 1
Reducing barriers. Improving access. Driving change. Together. Delta Dental of Michigan, Ohio, and Indiana is the first dental benefits administrator in the nation to offer a Special Health Care Needs Benefit, which removes multiple barriers to oral health care for people with intellectual or developmental disabilities by covering additional dental visits, treatment delivery modifications and more. Delta Dental and the Delta Dental Foundation are proud to support the American Academy of Developmental Medicine & Dentistry and congratulate them on their inaugural publication.
Together we champion people with disabilities.
Delta Dental of Michigan, Ohio, and Indiana www.vibrantcommunities.com www.deltadental.foundation
Delta Dental is a registered trademark of Delta Dental Plans Association. 2 | HELEN • helenjournal.org www.deltadental.com
Contents 24
Adaptive Learning Systems in Sensory Processing By Janice Ryan, OT, HSDP
How adaptive learning systems are being used to make lives better for people of all ages, and with various diagnoses, who are sufffering from anxiety, depression, or challenging behaviors due to sensory sensitivities.
30
ADHD & Sleep By Ronald E. Becker, MD
Sleep deprivation, or poor sleep, will often make the symptoms of ADHD more prominent. Learn more about the relationship between ADHD and sleep.
14
Positive Exposure By Liz Matejka-Grossman
Rick Guidotti refocuses his camera lens to show the beauty of those with disabilities.
Photo Courttesy Rick Guidotti
helenjournal.org • HELEN | 3
Contents Volume 1, Issue 1
38
24
30 COLUMNS 6
Nothing is Written
Bringing the Vision to Life By Rick Rader, MD, FAAIDD, FAADM
11 12
18
Around Social Media Joyful Xian
First Class
FEATURES 28 Rooting for Human Exceptionality By Allen Wong, DDS, EdD, DABSCD
36 Disability and Abuse By Nora Baladerian, PhD
A Journey of Learning
38 Our Model of Care
By Vincent Siasoco, MD, MBA
By Matt Holder, MD, MBA
AADMD
Undercounting Children with Disabilities By H. Barry Waldman, DDS, MPH, PhD Steven P. Perlman, DDS, MScD, DHL Rick Rader, MD, FAAIDD, FAADM Allen Wong, DDS, EdD, DABSCD Hoangmai H. Pham, MD, MPH
44 Journeys
Sharing the Secret of My Success By Justin Steiberg
4 | HELEN • helenjournal.org
42 Message from The Dental Education Community
By Nader A. Nadershahi, DDS, MBA, EdD
ON THE COVER: Our inspiration, Helen Keller (1880-1968), blind and deaf author and lecturer in the 1950s. Photo by Bettmann via Getty Images
HelenJournal.org Helen: The Journal of Human Exceptionality is where people with disabilities, families, clinicians, and caregivers intersect for inclusive health. Editor in Chief Senior Managing Editor Senior Editor for Special Projects Publisher Art Director American Academy of Developmental Medicine & Dentistry 3 Forester Avenue, #22 Warwick, NY 10990
Rick Rader, MD, FAAIDD, FAADM Vanessa B. Ira Steve Perlman, DDS, MScD Allen Wong, DDS, EdD, DABSCD Alyse Knudsen All rights reserved. Copyright © 2022 American Academy of Developmental Medicine & Dentistry
Editorial Advisory Board Marc Bernard Ackerman, DMD, MBA, FACD Director of Orthodontics, Boston Children’s Hospital; Adjunct Assistant Professor, University of Pennsylvania School of Dental Medicine, PA Roberta Carlin, MA, MS, JD Executive Director, American Association on Health and Disability, Rockville, MD Renee Dease Specialist & Coordinator, Healthy Athletes Health Programs at Special Olympics International Steven M. Eidelman H. Rodney Sharp Professor of Human Services Policy & Leadership; Faculty Director, The National Leadership Consortium on Developmental Disabilities, University of Delaware David Ervin, BSc, MA, FAAIDD Chief Executive Officer, MAKOM, Rockville, MD David Fray, DDS, MBA Professor, Department of General Practice and Dental Public Health, University of Texas School of Dentistry, Houston, TX Rick Guidotti Founder and Director of Positive Exposure, New York, NY Matthew Holder, MD, MBA, FAADM CEO, Kramer Davis Health; Co-founder, AADMD; Co-founder, ABDM; Co-founder, Lee Specialty Clinic
Emily Johnson, MD Medical Director, Developmental Disabilities Health Center, Peak Vista Community Health Centers, Colorado Springs, CO Seth Keller, MD Neurologist, Co-president, National Task Group on Intellectual Disabilities and Dementia Practices Gary Liguori, PhD, FACSM Dean, College of Health Sciences, URI Academic Health Collaborative, Kingston, RI Joseph M. Macbeth President/Chief Executive Officer, National Alliance for Direct Support Professionals, Inc. Susan L. Parish, PhD, MSW Dean and Professor, College of Health Professions, Virginia Commonwealth University Richmond, VA Hoangmai H. Pham, MD, MPH President and CEO, Institute for Exceptional Care Hon. Neil Romano Former Assistant Secretary, United States, Department of Labor, Office of Disability Employment Policy, Chairman Emeritus, National Council on Disability, President, TRG-16 Vincent Siasoco, MD, MBA Assistant Professor, Department of Family Medicine | Pediatrics, Albert Einstein College of Medicine, Bronx, NY, Director of Primary Care, Rose F. Kennedy CERC at Montefiore, Bronx, NY, Medical Director, ADAPT Community Network, New York, NY
JoAnn Simons, MSW Chief Executive Officer, The Northeast Arc, Danvers, MA Michael Stein Co-founder & Executive Director, Harvard Law School Project on Disability, Cambridge, MA Justin Steinberg Special Olympics Northern California Athlete Member, AADMD Board of Directors Stephen B. Sulkes, MD Pediatrician, University of Rochester Medical Center, Rochester, NY Carl Tyler, MD Gerontologist, Research Director, Lakewood Family Health Center, Cleveland Clinic, OH Barbie Vartanian Parent Advocate; Director, Oral Health Advocacy & Policy Initiatives NYU Executive Committee, Project Accessible Oral Health H. Barry Waldman, DDS State University of New York Distinguished Teaching Professor, School of Dental Medicine, Stony Brook University, NY Dina Zuckerberg Director of Family Programs, MyFace, New York, NY
Helen: The Journal of Human Exceptionality neither endorses nor guarantees any of the products or services mentioned in the publication. We strongly recommend that readers thoroughly investigate the companies and products or services being considered for purchase, and, where appropriate, we encourage them to consult a physician or other credentialed health professional before use and purchase.
helenjournal.org • HELEN | 5
NOTHING IS WRITTEN - EDITOR’S DESK Rick Rader, MD, FAAIDD, FAADM - Editor in Chief
.1 ISSUE NO JUNE 2022
BRINGING THE VISION
: JOURNAL W E N R U O he Bringing t Life Vision to
Life
S ON STATISTIC d ABUSE Disability
an
How ADHD Affects
SLEEP
ENDOR
SED BY
LEN | 1 al.org • HE
helenjourn
I
t was in the middle of 1663, and one can only imagine the excitement felt by the German theologian and poet Johann Rist the night before his new magazine Erbauliche Monaths-Unterredungen (“Edifying Monthly Discussions”) left the print shop and was brought out to the street to sell. It was a crapshoot for sure. After all, it was the first magazine to be published in the world. Years later, in 1741, there was a competition to publish America’s first magazine. Two owners of rival newspapers, Andrew Bradford and Benjamin Franklin rushed to publish a magazine and claim the honor. Bradford was the first, with his American Magazine, which was published only three days before Benjamin Franklin published The General Magazine. While both failed within a short time, the idea of publishing magazines was off and running. Today there are currently 7,416 consumer print magazines, thousands more are digital, and thousands more belong to the scientific community in the form of journals.
6 | HELEN • helenjournal.org
TO
“Nothing is written.” This quote from T.E. Lawrence implies that nothing is inevitable, life consists of choices, and how the individual can make an impact on his/ her destiny. The disability community continues to reinforce and remind me of this; hence the name for my monthly musings. - Rick Rader, MD, FAAIDD, FAADM
We shared the same excitement, joy, anticipation and pride as Rist, Bradford and Franklin when we conjured up the idea of publishing HELEN: The Journal of Human Exceptionality. While there are a multitude of magazines in the disability space, HELEN is unique in that it is a forum for the entire disability community. We have experts in all sectors of the community including sensory, neuro-motor, behavioral, mobility, communicative/ expressive, cognitive, learning, and psychiatric, including both acquired and genetic etiologies. And when we say “experts,” we don’t simply mean clinicians; we know “experts” come in many flavors—parents, teachers, caregivers, self-advocates, direct support professionals, behaviorists, assistive technologists, policy makers, dreamers, engineers, artists, geeks, historians, students, family members, ethicists, politicians, reporters, legal eagles and
entrepreneurs. And we have them all, drawbridge. We intend to balance, ready to share their programs, ideas, weigh and capitalize on our individual beliefs, hunches, experiences, dreams, and collective wisdom, imagination, fears and accomplishments. failure, experience, frustrations, eviMany of our articles will be pubdence, potential and possibilities. lished by students: medical, dental, The tag line is “The Journal of allied health, nursing, pharmacy, Human Exceptionality,” and that young legislative staffers, bioengiwill be our North Star. What we see, neering, etc., who have not (yet) been think, imagine, feel and understand as beaten up by the land mines, obsta“exceptional” will guide us in selecting cles, naysayers, narrow thinkers and topics, authors, communities, propower-brokers that litter the playing grams, centers of excellence, movefield. We expect them to say, “why ments and heroes. not?,” “what if,” or “stop doing that.” We hope you will join us as readers, And they will be as welcome as the subscribers, authors, critics, supportNobel Prize winners that will also be ers, and flag wavers. welcomed contributors. For the inaugural issue of a journal The theme of HELEN is that we see named HELEN, it’s only fitting for ourselves as partners, collaborators, Helen Keller to have the last word: duets, teams, tribes, pirates and gangs. “The place between your comfort We will let you know when it’s time zone and your dream is where life to pick up the pitchforks and torches takes place.” and head for the castle; and also, how to get there after they have raised the
helenjournal.org • HELEN | 7
Collaborative Organization Mission Statements Helen: The Journal of Exceptionality is proud to be endorsed by the nation’s leading organizations that advocate for people with Intellectual and Developmental Disabilities (IDD).
The AADMD is resolved: To assist in reforming the current system of healthcare so that no person with IDD is left without access to quality health services. To prepare clinicians to face the unique challenges in caring for people with IDD. To provide curriculum to newly established IDD training programs in professional schools across the nation. To increase the body and quality of patient-centered research regarding those with IDD and to involve parents and caregivers in this process.
It is the purpose of the American Academy of Developmental Dentistry (AADD) to establish postdoctoral curriculum standards for training dental clinicians in the care of patients with IDD, to establish clinical and didactic training materials and programs to promulgate these standards, and through its certifying entity – the American Board of Developmental Dentistry – to grant board-certification to those dentists who have successfully completed these training programs. 8 | HELEN • helenjournal.org
To create a forum in which healthcare professionals, families and caregivers may exchange experiences and ideas with regard to caring for patients with IDD. To disseminate specialized information to families in language that is easy to understand. To establish alliances between visionary advocacy and healthcare organizations for the primary purpose of achieving better healthcare.
The American Academy of Developmental Medicine (AADM) is a medical society dedicated to addressing the complex medical needs of individuals with intellectual and developmental disabilities across the lifespan. It incorporates clinician training and awareness, teaching, advocacy, research, board certification, health equity, interdisciplinary collaboration, inclusive care delivery models and shared decision making.
The future of wellness for people with IDD.
Terrence Davis
• Medical • Dental
• Behavioral
• Therapies • Prevention
Kramer Davis is proud to sponsor this inaugural edition of Helen.
Compassionate, interdisciplinary health care for people with IDD. helenjournal.org • HELEN | 9
Proud to be a founding sponsor of Helen: The Journal of Human Exceptionality Even prouder of all we’re accomplishing to improve access to care for the millions of underserved people with special needs across the country.
10 | HELEN • helenjournal.org
AROUND SOCIAL MEDIA
Joyful Xian! Xian Horn is a joyful half-Asian with cerebral palsy on a mission to make everyone feel welcome in the world. She’s a public speaker, advocate, teacher, writer, consultant, and workshop leader, guiding discussions on inclusion and self-esteem tailored for any audience. Her non-profit, Give Beauty Wings, provides tailored Self-Esteem Programs which began at NYU’s Initiative for Women with Disabilities. She is also an avid contributor to Forbes Women, Thrive Global, and Positively Positive, writing on Leadership, Empowerment, and Disability, and has been published in Allure and Architectural Digest. Xian’s aim is to shift culture to serve and connect humanity by amplifying inclusion in tech, beauty, fashion, media, employment, and design. She runs vocational workshops for the NYC Mayor’s Office for People with Disabilities for Disability Mentoring Day. She is an equitable transportation advocate, and issued a Call-toAction for ride-sharing services, as well as created a petition to save same-day travel options for New Yorkers with disabilities, which has been signed by more than 6,400 people. Her work in Adaptive Clothing includes teaming up with Open Style Lab at Parsons and Design for Disability and, in 2020, she walked the runway again for Zappos Adaptive at NY Fashion Week. Xian is also an advisory board member for the American Institute of Architects, NY, for their inclusive exhibits in 2021. Xian has spoken at the U.N., The Harkin Summit, ACLU, Microsoft, Apple, Viacom, AppNexus, New York Life, Met Life, the New York Public
Photo Provided
by Xian Horn
Library, Barnard College, Williams College, the ReelAbilities Film Festival (where she serves on the Selection Committee). She joined the State Department’s Speaker’s Bureau in 2016 and Xian was named Women’s eNews’ 21 Leaders for the 21st Century in 2017 and in Walker’s Legacy Power 15 in 2018. Xian was invited to join Cooper Hewitt’s Accessibility Advisory Committee, AT&T’s Accessibility Advisory Panel, and was an Exemplar for the AT&T NYU Connect Ability Challenge in the creation of Assistive Technology. Xian is also a member of the UN NGO Xian’s Socials Committee on Education, Learning & Literacy. xianhorn.com Xian Horn’s cerebral palsy is @xianforbeauty83 the blessing of her life and she is committed to xian.horn helping everyone recognize what xian-horn their blessings might be. helenjournal.org • HELEN | 11
FIRST CLASS quality healthcare. Barriers such as attitudinal, physical, communication, and financial exist and have been highlighted by the World Health Organization.1 One of the main barriers is lack of training on how to care for this population.2
A Journey of
LEARNING
By Vincent Siasoco, MD, MBA INITIAL TRAINING After attempting to call a few places, I tried another clinic to set up a clinical rotation for my elective. I made the call and introduced myself, “Good morning. I’m a third-year family medicine resident and wanted to ask if I could do a clinical rotation at your clinic for patients with intellectual and developmental disabilities (IDD)?” Five to 10 seconds of initial silence passed by, at which point I was transferred to three different staff, and then finally asked for my name and contact number and told that someone would call me back. The following afternoon, I received a call from a kindly, albeit slightly surprised, medical director. A week later, the first elective of its kind in my program started. Following years of schooling and countless sleepless nights in residency and searching for any type of experience with this underserved population, so began my first training for a two-week period…just a few weeks away from graduating from my residency program. BARRIERS TO CARE For a family member or caregiver caring for a loved one with IDD, the challenges are well known in accessing 12 | HELEN • helenjournal.org
ONGOING TRAINING My two-week elective training flew by, as did graduation. After residency, I landed a job at a non-profit disability agency, working in their outpatient clinics in New York City. My education and training with this population had only just begun. I recall the first few days looking out into the waiting room, a mix of different faces, bodies, and sounds. As time went on, I became more comfortable being their physician. I got to know the patients and how to communicate with each. I began to understand where they lived and what their needs were. I met countless direct support professionals (“DSP”) and learned the importance of their roles. The intersection of primary, oral, and behavioral healthcare was highlighted as was the importance of avoiding diagnostic overshadowing. It took time and some of which was a trial by fire especially when it came to learning about state regulations, forms, and community support services (or lack thereof). Fortunately, I was able to find my way and learn how to care for this population with some of the best teachers being my own patients. DATA Reports reveal two-thirds of adults with IDD have two or more co-morbidities including obesity and chronic mental health needs. More than 40% have been diagnosed with four or more chronic conditions in addition to IDD.3 Although individuals with IDD are living longer lives, over all, the average lifespan of those with IDD remains substantially lower than those in the general population.4 TRAINING OTHERS Though my path was unique, I was cognizant about others who may not have had the opportunity, not sure where to turn, or worse, not want to be bothered to make the effort to learn about this population. As my career
took me on different paths, I made it a point to offer clinical rotations to medical students and residents at the clinics I worked at and give lectures when and where possible. In 2018, I became a Clinical Assistant Professor in the Department of Family and Social Medicine at the Albert Einstein College of Medicine at Montefiore.
established a Student Chapter of the AADMD at Einstein. With Alex as president and I as the faculty advisor, our membership started out at a whopping four students. As word got out about the Chapter, Alex graduating, and two new Chapter co-presidents coming on, membership grew in numbers of not only students but also residents and fellows. Through the Chapter and in partnership with Special NY and The NCD Health Equity Framework Olympics community-based organizations such recommended, “requiring ADAPT Comcomprehensive disability clinical- as munity Network, members thought care curricula in all US medical, of unique activinursing, and other healthcare ties to get engaged with and learn from professional schools and require this population. disability competency education and Members not only took on the role of training of medical, nursing, and audience member at other healthcare professionals.” lectures or students in shadowing, but In 2019, the Albert Einstein College in leadership and advocacy roles to of Medicine received a grant that was guide the Chapter forward. part of the National Curriculum IniAs the current Student Chapter tiative in Developmental Disabilities co-president and third-year medical to develop a curriculum for 2nd year student, Samantha DiSalvo, stated, medical students on how to care for “Growing up alongside my brother, adults with IDD. It was funded by the Anthony, who has cerebral palsy, American Academy of Developmental I have seen first-hand the barriers Medicine and Dentistry (AADMD) that individuals with intellectual and and Special Olympics International developmental disabilities face in our and the project led by Joanne Siegel, healthcare system. Working with the Co-Director of the Rose F. Kennedy Einstein AADMD student chapter UCEDD at Montefiore. Joanne had has allowed me to be an advocate for brought me on her team and, along individuals like my brother and comwith other academic leadership at Ein- bat these barriers. It has been the key stein, a curriculum was formed. What factor in bringing together like-mindwas meant to be a two-year program, ed future healthcare professionals was eventually approved to become with the goals of improving medical a permanent part of the second-year education and ultimately the quality of medical student curriculum at Einhealthcare for this population.” stein. SUMMARY In 2020, a fourth-year medical stuIt’s been years since my first twodent, Alex, doing an elective research week rotation in residency had opened rotation with me focusing on patients the doors to this population as a physiwith disabilities, had learned about the cian in training. Each person’s journey AADMD. He then took the lead and of learning is different, based on the
opportunities available to them. Much is still needed to continue improving access to education and training on how to care for those with intellectual and developmental disabilities. The National Council on Disability Health Equity Framework recommended, “requiring comprehensive disability clinical-care curricula in all US medical, nursing, and other healthcare professional schools and require disability competency education and training of medical, nursing, and other healthcare professionals.” All need to continue to advocate for providing quality healthcare for this population but also for the training of future healthcare providers and leaders that will be serving them.
Vincent Siasoco, MD, MBA is an Assistant Professor, Departments of Family Medicine and Pediatrics, Albert Einstein College of Medicine, New York, NY. He is a Board Member at AADMD. REFERENCES 1. Disability and Health. World Health Organization. https://www.who.int/news-room/factsheets/detail/disability-and-health. 2. Goode, Shaina, Causey-Upton, Renee. A Blind Spot in Health Care Services: The Intellectual/Developmentally Disabled Population and Training of Primary Care Providers. Kentucky Journal of Undergraduate Scholarship, Issue 2, (2018). Pgs. 62-72. 3. Ervin, David, Merrick, Joav. Intellectual and Developmental Disability: Healthcare Financing. Frontiers In Public Health, 24 September 2014 | https://doi.org/10.3389/ fpubh.2014.00160 4. Pimlott, Nicholas. Aging with intellectual and developmental disabilities. Can Fam Physician. 2019 Apr; 65 (Suppl 1): S3.
helenjournal.org • HELEN | 13
A young woman with pale skin and long white hair, wearing a white top and black suit, smiles widely while standing confidently with her hands on her hips.
14 | HELEN • helenjournal.org
Positive Exposure: TO BE SEEN, TO BE HEARD, TO BELONG By Liz Matejka-Grossman Photographs by Rick Guidotti
“I grabbed a mirror that was by the set and held it up close to Christine and said, ‘Look at yourself, you’re magnificent!’ ”
Rick Guidotti, Founder and Director of Positive Exposure, photographs a young man wearing a striped golf shirt, khakis and loafers in front of large, sun-filled window.
R
ick Guidotti was a fashion photographer working in Milan, Paris, London and New York City for such clients as Revlon, L’Oreal, Elle and Yves St Laurent; shooting such iconic beauties as Claudia Schiffer and Cindy Crawford. But all this changed in 1997, when Guidotti embarked on the most important journey of his life – as an artist, a human being and the launch of Positive Exposure, a 501(c) arts organization that utilizes photography, film and narratives to transform public perceptions of people living with genetic, physical, intellectual and behavioral differences – from albinism to autism. “As a fashion photographer, I was always told who was beautiful. I was told who the model of the moment was,” Guidotti explains. “As an artist, this was so frustrating because I saw beauty everywhere.” Leaving his studio one afternoon, Guidotti spotted a young girl at a bus stop on Park Avenue. She had long white hair and pale skin – a condition called albinism. As Guidotti recalls, “I instantly realized that I had never met a model that looked like her and this beautiful girl had never been included in the beauty standard.” Running to the nearest bookstore to get information on albinism, Guidotti was struck by the number of terrifying images depicting albinism and many other genetic and medical conditions. “These images were all the same – photographs of people up against walls in doctors’ offices, in their underwear or naked with black bars across their eyes, devoid of humanity,” Guidotti helenjournal.org • HELEN | 15
exclaims. “Where were the photographs of this gorgeous girl I saw waiting for the bus?” It was at the moment that Guidotti decided to refocus his lens to create an alternative to these traditional medical photographs and insist that beauty and humanity were ultimately recognizable. Guidotti contacted The National Organization for Albinism and Hypopigmentation (NOAH), a support group for people with albinism, and proposed the idea of a creating a non-traditional partnership between a fashion photographer and a genetic support group. “I told them, together we would produce something beautiful, powerful and above all positive and they agreed.” The very first person that Guidotti photographed in this collaboration was Christine, a stunning young girl with long, flowing locks. But when she walked through the door of his studio, her shoulders were hunched with her head down, giving one-word answers and no eye contact. “It was obvious that this teenager had been tortured and teased her entire life because of her albinism, because of her difference and this abuse had left her with zero self-esteem,” Guidotti recounts. Initially Guidotti feared overstep-
A joyful woman and four children sit on a bench, laughing, up against a mint green wall. They are wearing vibrant, colorful West African clothing.
ping his bounds and upsetting this seemingly emotionally fragile girl. However, he also realized that out of The philosophy, respect for Christine, he needed to “Change How You See, photograph her as he would any super – and that included fans, music See How You Change” model and lights. As Guidotti recalls: “I grabbed a drives Positive mirror that was by the set and held it Exposure. up close to Christine and said, ‘Look at yourself, you’re magnificent!’ And instantly she saw what I saw – she saw beautiful Christine! Suddenly her hands went on her hips, her head raised to the lights, shoulders were pulled back, and she exploded with a smile that lit up the world. I knew kids would still make fun of her, but I knew the insults would never have the same impact! She was empowered with a new sense of who she was! She was now and forever, amazing!” That experience created the philosophy, “Change How You See, See How You Change” that drives Positive Exposure, the non-profit organization that Guidotti established to support his work. Twenty-five years later, Guidotti continEight young children wearing an assortment of colorful clothing ues to photograph, film and collect sit on a bench, laughing aloud while clapping.
16 | HELEN • helenjournal.org
Matrix of 16 square images of people. Each person is smiling or laughing and looking at the camera.
stories of individuals and communities at risk of stigma and exclusion from around the world, while Positive Exposure has grown to include a variety of well-regarded educational programs impacting millions. A sampling of programs include FRAME (Faces Redefining the Art of Medical Education), an extensive web-based film library that places humanity front row and center in medical education and the PEARLS Project, a blog platform created for Positive Exposure Ambassadors to share life from their unique perspective. Positive Exposure also has a gallery on New York City’s Mu-
seum Mile which serves as a central hub for showcasing the work of visual, performing, literary and multisensory artists, as well as providing educational, cultural and artist-in-residency programming. On any given day, Positive Exposure’s calendar is filled with lectures to first year medical students, grand rounds, family conferences, photo and film shoots, educational workshops, film screenings, exhibition openings, performances, public installations and ever-evolving collaborations that elicit conversations and needed change. With 2022 marking Positive Expo-
sure’s 25th Anniversary of Redefining Beauty, Guidotti reflects, “The most fantastic, amazing incredible thing I have learned these past 25 years is that no matter where I am photographing, which country, which continent, which culture, we all have the same exact needs, the need to BE SEEN, the need to BE HEARD and the need to BELONG!”
Liz Matejka-Grossman is the Director of Education and Programming, Positive Exposure. helenjournal.org • HELEN | 17
AADMD
A
previous article that the AADMD wrote reviewed the U.S. Census Bureau annual American Community Survey demographic findings that an estimated 155,000 children, less than five years of age among the civilian noninstitutionalized population had one or more severe disability. However, while the survey reports estimated data for six disability categories (hearing, vision, cognitive, ambulatory, self-care, and independent living difficulties) for individuals five years and older, the Census Bureau report information for children less than five years sought information only for hearing and sight difficulties.1 By contrast, the Global Burden of Disease Study reported that almost 810,000 U.S. children, less than five years of age, had developmental disabilities in 2016.2
“Does the repeated published undercount of the number of children less than age five with disabilities really matter? That is like asking whether it matters that hundreds or thousands (even more) of eligible residents do not vote in a particular election. Numbers do count, in terms of efforts to bring about change, and how to plan for the results of needed change…Adding to difficulties in accurately determining the full extent of children with varying types of disabilities among children less than five years of age, is the reality of the Census Snafu (i.e. situation normal, all fouled up). Nearly one in four children under the age of five years in the U.S. lives in areas at risk of being missed by census employees in 2020.”1,3 A more recent in-depth report by members of National Center for Health Statistics adds a further dimension in determining the number of children with disabilities less than five years of 18 | HELEN • helenjournal.org
age during the periods between 2009 to 2011 and 2015 to 2017. The review considers the prevalence and trends of developmental disabilities among U.S. children between 3 and 17 years. While children three- to five-years are not considered separately, the study does demonstrate that this younger age group can (and should be) included in a wider review of disabilities (than just hearing and vision disabilities) that affect very young children. Findings from the report by National Center for Health Statistics • There were overall significant increases in the prevalence of any developmental disability (including attention-deficit/hyperactive disorder, autism spectrum disorder and intellectual disability) but a significant decrease for any other developmental delay. • The prevalence of any developmental disability increased among boys, older children, non-Hispanic White and Hispanic children, children with private insurance only, children with birth weight equal or greater than 2500 grams (5.5 pounds) and children living in urban areas and with less educated mothers. • “The prevalence of developmental disability among U.S. children aged 3 to 17 years increased between 2009 and 2017. However, changes by demographic and socioeconomic subgroups may be related to improvements in screening and access to healthcare.”4 • “Developmental disabilities are a group of lifelong conditions due to an impairment in physical, learning, language, or behavior areas. Children diagnosed with developmental disabilities typically require services to address behavior and development challenges. Measuring the prevalence
UND
Young Childre
A NEED
Photo Credit: Rick Guidotti
COUNTING DER
ren with Severe Disabilities:
D FOR CHANGE
By H. Barry Waldman, DDS, MPH, PhD Steven P. Perlman, DDS, MScD, DHL (Hon) Rick Rader, MD, FAAIDD, FAADM Allen Wong, DDS, EdD, DABSCD Hoangmai H. Pham, MD, MPH
of developmental disabilities in the population helps gauge the adequacy of available services and interventions.”4 So, what if very young children with disabilities are not counted by the Census Bureau? “The U.S. Constitution empowers the Congress to carry out the census in ‘such manner as they shall by Law direct’ (Article I, Section 2). The Founders of our fledgling nation had a bold and ambitious plan to empower the people over their new government. The plan was to count every person living in the newly created United States of America, and to use that count to determine representation in the Congress. Enshrining this invention in our Constitution marked a turning point in world history. Previously censuses had been used mainly to tax or confiscate property or to conscript youth into military service. The genius of the Founders was taking a tool of government and making it a tool of political empowerment for the governed over their government…”5 “On numerous occasions, the courts have said the Constitution gives Congress the authority to collect statistics in the census…The degree to which the information is needed for the promotion of legitimate governmental interests has been found to be significant.”5 Why is it essential that each person be counted, beyond the need to determine representation in the Congress? Because the distributions of government federal funds often are based on population numbers in individual states, locales and desperate circumstances (e.g. weather disasters and medical emergencies) and yes, the health circumstances of individuals of all ages. helenjournal.org • HELEN | 19
“
Why is it essential that each person be counted, beyond the need to determine representation in the Congress? Because the distributions of government federal funds often are based on population numbers... and yes, the health circumstances of individuals of all ages. Medicaid (a federal and state financed program) provides a lifeline for children with disabilities and their families. More than half of all children with a disability or other special healthcare needs rely on public insurance coverage for a wide range of services and supports. Because Medicaid extends eligibility in multiple ways to children with disabilities, it reaches a broad range of families and children with disabilities. “Compared to other children, youngsters with disabilities are more likely to live in low-income households. Many qualify for Medicaid based on their families’ income alone –without it, they would likely have no other affordable insurance options. For many of these families, Medicaid is the difference between being able to access comprehensive care for their child and falling into debt due to medical expenses.”6 (It is because of this reality that determining the extent of needed financial support, that the number of all children with disabilities in a state becomes critical!) Additional findings from the report by National Center for Health Statistics • Non-Hispanic White children were most likely to be diagnosed with attention-deficit/hyperactive disorder (ADHD) than non-Hispanic black or Hispanic children. • Children receiving any form of public health insurance are more likely to be diagnosed with any and 20 | HELEN • helenjournal.org
each of the individual developmental disabilities when compared with children receiving only private health insurance and uninsured children, with the exception of blindness among uninsured children.4 Yes, it is difficult to determine the type and degree of disability among very young children. However, the need is to establish a methodology which would permit the Census Bureau to adopt a more realistic approximation of future numbers and costs for the support of very young children with disabilities who will impact on the health, education and social systems as they get older. One approach would be to assign three categories for children under five years of age with disabilities: 1) Hearing limitations, 2) Sight limitations, and 3) Other disabilities* (* Type and severity to be determined at an older age). A more realistic approach for determining population numbers and potential future costs for essential health, education and social services is critical. Recording only sight and hearing disabilities for children under five years of age is an unrealistic solution.
Editor’s Note: Read more about the numbers behind the IDD population on pages 22 and 23.
H. Barry Waldman, DDS, MPH, PhD is SUNY Distinguished Teaching Professor Department of General Dentistry, Stony Brook University, NY. Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director, Special Olympics, Special Smiles, Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine. Rick Rader, MD, FAAIDD, FAADM, DHL (Hon) is Director, Habilitation Center, Orange Grove Center; President, American Association on Health and Disability; Member, National Council on Disability; Board, American Academy of Developmental Medicine and Dentistry; National Medical Advisor, National Alliance for Direct Support Professionals; Board, National Task Group on Intellectual Disabilities and Dementia Practices. Allen Wong, DDS, EdD, DABSCD is a professor and the director of the Dugoni School of Dentistry AEGD and Hospital Dentistry program in the San Francisco area, and is the Global Clinical Advisor to the Special Olympics Special Smiles. He is current president of the American Academy of Developmental Medicine and Dentistry (AADMD).
REFERENCES 1. Waldman HB, Perlman SP, Larsen CD. Surely there are more than about 155,000 children less than 5 years of age with disabilities in the U.S. EP Magazine 49:14-6, December 2018. 2. Global Research on Developmental Disabilities. Developmental disabilities among children younger than 5 years in 195 countries and territories. 1990-2016; a systematic analysis for the Global Burden Disease Study 2016. Available from: https//the-lancet.com/journals/langlo/article/PH11S2214-109X(18)30309-7/fulltext Accessed September 1, 2018. 3. Donnelly G. Do you know where the children are? Fortune, 2018 September: 20. 4. Zablotsky B, Black LI, Maenner MJ, et al. Prevalence and trends of developmental disabilities among children in the United States: 2009-2017. Available from: hptts://pediatrics.aappublications.org/ content/earluy/2019/09/24/peds.2019-0811 Accessed October 1, 2019. 5. U.S. Census Bureau. Decennial Census of Population and Housing. Available from: https://www.census.gov/programs-surveys/decennialcensus/ about/censusconstitution.html https://www.americanprogress.org/ issues/early-childhood/reports/2017/05/03/431766/cuts-medicaid-harm-young-children-disabilities/Accessed October 2, 2019. 6. Center for American Progress. Early childhood. Cuts to Medicaid would harm young children with disabilities. Available from: https://www.americanprogress.org/issues/early-childhood/ reports/2017/05/03/431766/cuts-medicaid-harm-young-children-disabilities/ Accessed October 2, 2019.
Every person has the right to live well. ™
SevitaHealth.com
Sevita is proud to be a Founding Sponsor of the AADMD’s New Publication, Helen: The Journal of Human Exceptionality helenjournal.org • HELEN | 21
d n i h e
B THE NUMBERS
OF PEOPLE WITH IDD
A
ccording to Hoangmai ed)—using prevalence rates from view Survey are publicly released, (Mai) H. Pham, MD, the Centers for Disease Control and the number of children with IDD MPH, the commonly Prevention’s Autism and Developwill prove even higher than IEC used estimate of 7- to mental Disabilities monitoring data estimated.” 8- million people with Intellectual in 2018 for children; and results of and Developmental Disabilities a comprehensive survey of adults A Vision for Better Data, (IDD) is grossly outdated. “Those from 1995, multiplied by the numBetter Care same numbers have been cited for ber of children and adults in the IEC is striving to make IDD nearly 10 years, and it’s just not visible by planning to plausible that nothing build automated meth“We believe the commonly has changed in that ods of identifying IDD time,” she stated. in electronic medical used estimate of 7 to 8 Dr. Pham explained that the record data or insurance million people with IDD is NHIS (National Health Interclaims. Dr. Pham’s view Survey) did not consider hope is that automated grossly outdated,” said asking adults questions relating approaches will rely Hoangmai (Mai) H. Pham, to IDD, which explains why less on the documentasome very old data still pertion habits of healthcare MD, MPH. “Those same sists. She added, “People spend professionals, most numbers have been cited many more years in adulthood of whom receive little than in childhood, but our data training on IDD. for nearly 10 years, and it’s priorities make them invisible Improving data that when they’re developing more just not plausible that nothing can support better physical and mental health financing and payment has changed in that time.” problems.” for services to peoDr. Pham founded Institute ple with IDD is one for Exceptional Care (IEC) in of IEC’s three pillars 2020, whose mission is to transof work. Dr. Pham explains that U.S. in 2019, respectively. form healthcare for people with financing and payment have to Dr. Pham considers such estiIDD. The more accurate numbers be married to cultural change and mates as conservative as they do are closer to the IEC’s calculatnot account for likely growth in better training for clinicians, as ed estimates of 10 to 16 million prevalence in the intervening years: well as strategies that relieve fam(depending on whether ADHD and “We anticipate that when data from ilies of the burden of coordinating learning disabilities are includlast year’s National Health Intercomplex services.
22 | HELEN • helenjournal.org
WHY INSTITUTE FOR EXCEPTIONAL CARE’S MISSION IS BOTH PROFESSIONAL AND PERSONAL Dr. Mai Pham started Institute for Exceptional Care (https://www.ie-care.org/) in 2020 with a few close colleagues, in her Capitol Hill kitchen, at the height of the pandemic. Behind those classic start-up optics are a high-powered Board, advisors that include both experts and disability self-advocates, and a unique combination of professional and personal perspective fueling a mission to transform healthcare for people with IDD. Dr. Pham got her MD, boarded in internal medicine, added an MPH, then did research focused on health system change. She became the Chief Innovation Officer for Medicare and Medicaid during the Obama Administration, then an executive with Anthem, the country’s second largest private insurance company. You could say the intricacies of healthcare financing, payment, regulation, and quality are her native language. FIRST-HAND INSIGHT Dr. Pham is also the mother of two sons, one of whom, Alexander, is autistic. When a health crisis arose in Alexander’s late teens, competent and compassionate care and guidance proved incredibly hard to come by, and she realized what she herself didn’t know. “Even with all that background, the phenomenon of IDD was in my house, and still I had been largely unaware of how families with IDD live until we experienced it personally – the burden of managing a fragmented network of providers, the challenge of even finding qualified
ones, the sense of ‘forever seeking’ the solutions to our problems,” she recalled. DRIVING PROGRESS THROUGH INNOVATION This story is all too common. Today, Alexander is thriving in a pre-college program, but Pham now saw the need, and the possibilities, differently. As a result, IEC focuses on three core areas, all ultimately aimed at allowing people with IDD and their families to thrive: • Improving financing and payment. This includes generating better data and awareness, building a business care for better care, and creating incentives to prioritize prevention, track outcomes, and reward quality. • Building stronger connections to home and community-based services. This will improve overall coordination and support for families and help to improve health equity by tackling the social determinants of health. • Preparing all clinicians to provide better care. This combines training and support to help clinicians feel prepared and confident helping their IDD patients with broader culture change in healthcare. You can learn more about IEC, their programs, goals, team, and advisors, at www.ie-care.org.
helenjournal.org • HELEN | 23
E
veryone who uses an iPhone is part of an adaptive learning system. The addition of fingerprint and face recognition features are two examples of the way technologies are evolving. This twoway learning process is called adaptive learning and people are not the only ones with a capacity to do it. Today,
Adaptive Learning Systems in Sensory Processing Janice Ryan, OT, HSDP we have technologies that are capable of adaptive learning. An iPhone and its user, together make one adaptive learning system. A Sensory-Friendly Network of Practitioners is now using adaptive learning systems to help people overcome sensory processing challenges. We are using technologies that are designed to set the emotional stage for more self-regulated, situational decision-making and better learning. We are using adaptive learning systems to make lives better for people of all ages and with many diagnoses who are suffering from anxiety, depression, or challenging behaviors due to sensory sensitivities. Now let me introduce you to the real-world benefits of using technology to help people overcome sensory processing challenges. 24 | HELEN • helenjournal.org
Photo used with permission by Attunement Solutions. Therapeutic Multi-sensory E and approved by AAMSE Founder and past-trainer, Linda Messbauer, OT. Multi-S Equipment provided by Southpaw, Inc. Photo provided by Janice Ryan OT, HSDP
A Little Bit of Science Inner sense perception, or interoception, contributes heavily to the feelings we now call emotional regulation, or its opposite, called emotional dysregulation. Inner sense perception is important for setting the emotional stage for adaptive learning. Inner sense perception tells each of us how to behave at school or work. It helps us know how to behave differently at a formal than a casual event. Inner sense perception gives us that self-assured voice of experience. It also gives us that fear-based feeling when we hear someone rapidly approach us from behind while walking alone on a dark street. Research now shows that unwanted emotional triggers can develop whenever we have a negative Photo used with permission by RoboKind. Pho experience. In the Nelson County, VA. Photo provided by Janice past, researchers
believed it took a lot to develop a trauma response, but now we know it happens to all of us. Negative daily experiences create Environment designed fear-based behavior Sensory Environment patterns and those can be enhanced in people with sensory processing challenges. Since we know it happens to all of us, we now realize that fast, reactive thinking is a natural outcome of chronic stress. This is one reason humans need technology to help us overcome the negative behavior patterns that can develop in classrooms, healthcare, and dentistry practices when sensory differences are unrecognized.
oto taken in Arrington e Ryan OT, HSDP
Adaptive Learning Systems for Sensory -Friendly Classrooms Although not the only special needs population to benefit from stress-reduction strategies that consider sensory sensitivities, people on the autism spectrum have been shown through research to benefit from adaptive learning systems that turn robots into teachers. Robot teachers seem to increase adaptive learning in people on the
autism spectrum who feel stress when they work with humans. By calming elevated inner sense perceptions, students with autism can learn better in their challenging areas such as con-
important when students are working with knowledge that they experience as difficult to understand. Sometimes these students have a learning disability, but often, they are just
versational skills or face reading and mirroring of emotions. After mastering social skills with robots, new adaptive learning can be practiced with other people. Adaptive learning systems that personalize lessons based on student interests and familiar life contexts have been shown to improve classroom efficiency. This is especially
perfectionists and experience inner stress because they view themselves as underperforming. Intelligent Tutoring Systems (ITS) can be used with these students to put difficult concepts into real life experiences and personally meaningful processes. Research has shown for example, that personal interest increases student attention to reading math word problems, leading helenjournal.org • HELEN | 25
“
to greater problem-solving persistence and better learning. Adaptive Learning Systems for Sensory-Friendly Healthcare & Dentistry Four sensory processing patterns have been identified as contributors to behavior challenges when people are in contexts that they perceive as threatening. The four patterns are sensory seeking, sensory avoiding, sensory sensitivity, and sensory registration. Each pattern can be measured using Winnie Dunn’s Sensory Profile assessments, and multi-sensory environment technology can be used to help those previously threatening experiences be perceived as safe. People with a high level of touch sensitivity may become stiff and resistant to healthcare or dentistry interventions due to inner stress. They may have body position sensitivity that causes a strong reaction when 26 | HELEN • helenjournal.org
An appropriate adaptive learning system might include the practitioner avoiding light touch and using a Story Board to help the patient anticipate what’s next.
they are reclined in a dental chair. An appropriate adaptive learning system might include the practitioner avoiding light touch and using a Story Board to help the patient anticipate what’s next. It may also include the use of a weighted x-ray vest as an adaptive learning technology that provides calming deep pressure. All these interventions are designed to calm the patient’s inner sense so that a dental visit doesn’t lead to stress-based emotional triggers that can compromise a lifetime of oral health. Vision, sound, taste, and smell are other sensory sensitivities that can negatively affect healthcare and dentistry services. Sunglasses and headphones with calming sounds or music can be useful while in the dental chair. Relaxing visuals such as fiber optic ceiling panels and vibroacoustic examination tables, can be
useful during a medical examination. In sensory-friendly health care and dentistry, practitioners, the patient, and the multi-sensory environment become part of the adaptive learning system. Conclusions Sensory processing challenges have no direct relationship with IQ and are sometimes seen in people with gifted intelligence. Challenges are often more obvious in people who have significant intellectual and developmental disabilities. Communication and physical limitations may add to the emotional stress of treating people with severe special needs. The unfortunate stress-response reality of this is that practitioners may decide that
serving special needs populations are not for them. Our Sensory-Friendly Network of Practitioners knows that we are promoting a culture change because everyone in a human adaptive learning system is interconnected in creating good service outcomes. More sensory-friendly classrooms, medical examination rooms and dental offices are the way of the future. We welcome others to join us and learn more about how our Sensory-Friendly Network of Practitioners is making life easier for people with special needs, their families, and the very special practitioners who serve them.
Janice Ryan, OT, HSDP is Founder and Director of Attunement Solutions, a private occupational therapy practice located in Orange Grove Center, 615 Derby Street, Chattanooga, TN, 37404. She is the current trainer for American Association of Multi-Sensory Environments (AAMSE) and is working with Sensory Health, RoboKind, and Orange Grove Center to create more sensory-friendly environments for everyone. Email: janice@attunementsolutions.com
RESOURCES 1. Dunn, W. (2014). Sensory profile 2: Strengths-based approach to assessment and planning. Bloomington, MN: NCS Pearson, Inc. 2. Richardson, K. (2018). Challenging sociality: An anthropology of robots, autism, and attachment (1st ed.). From Social and Cultural Studies of Robots and AI. United Kingdom: Palgrave Macmillan. 3. Walkington, C. (November 2013). Using adaptive learning technologies to personalize instruction to student interests: The impact of relevant contexts on performance and learning outcomes. Journal of Educational Psychology. DOI: 10.1037/a0031882
A Passion for Supporting the IDD Community
and Proud Supporter of HELEN: The Journal of Human Exceptionality Almost 30 years ago, Eunice Kennedy Shriver asked Dr. Steve Perlman to create a health program for the Special Olympics. “Healthy Athletes” is now the largest public health program in the world for children and adults with Intellectual/Developmental Disabilities. HELEN: The Journal of Human Exceptionality is the next step to helping provide healthcare professionals, caregivers, families, and advocates with resources and education to better support this under-served, marginalized and invisible population.
Steve Perlman, DDS, MScD, DHL (Hon.) has extensive experience through his private practice and his role as Clinical Professor, Boston University School of Dental Medicine; has an Academic Appointment at the University of Pennsylvania School of Dental Medicine; is Co-founder and Past President of the AADMD. helenjournal.org • HELEN | 27
Rooting for
HUMAN EXCEPTIONALITY By Allen Wong, DDS, EdD
We share, celebrate and seek collaborations for a better healthcare system for equitable quality healthcare.
Dr. Allen Wong’s family. L to R - father, King S. Wong; Allen; mother, Ming G. Wong; brother, Wayman Wong
28 | HELEN • helenjournal.org
B
oth my parents immigrated from China with no education and no real job skills. They traveled far away to a land where they had difficulty communicating. They did not speak a word of English and the Chinese language dialect they spoke was foreign to the local Chinese. My father was a teenager who was sponsored by his own father but, within a couple weeks, got kicked out of the house. My father was on his own. He struggled to find a job that did not require education nor speaking. So, he became a dishwasher. In San Francisco’s Chinatown, with all its Chinese restaurants, he worked hard so he could save money. He slept in the alleys, using the night’s tablecloths as blankets until he could afford a room. He would carefully watch the sous chef and chefs cook while learning the new dialect of the Chinese language. He found the importance of networking, finding mentors, and being observant. These all would pay off. Eventually, he earned enough to marry my mother, and they continued to help each other learn the English language and, of course, the American lifestyle. My mother, in a similar manner, worked hard as a waitress while practicing her English. After several years of saving, she and my father took the chance of buying a restaurant in a suburb. It wasn’t long before they ended up going bankrupt. That didn’t stop my parents, who worked a few more years as employees for
other people, who then saved enough pected wonders I to buy another business, a grocery would find. It is store - that also failed. true that the path They persevered, working and savless traveled is full ing to buy another restaurant several of surprises and years later. They set their sights on adventure, which the American Dream and through the is what I chose. grace of God, that family restaurant At first, I thought finally succeeded! I remember the I was alone in that long hours and trials where our family path of taking care nurtured the restaurant like a baby. of individuals with A strong belief in themselves kept special healthcare my parents focused and determined. needs. I also was They were excellent self-made cooks frustrated that othwho used quality products and under- ers could not see the joy in taking care stood the importance of great taste and of a most neglected population. good value. My journey The business with the Amergrew, which ican Acadeallowed my At first, I thought I was my of Dental brother and me Medicine to pursue our alone in that path of taking and Dentistry own dreams of (AADMD) has care of individuals with attending colbrought me special healthcare needs. experiences, lege. My parents believed friends, and that education mentors beyond was the key to my wildest future happiness, stability, improving dreams. I have found the most exceplives, and the community. tional people with the biggest hearts I learned many lessons from my par- that resonate with my ideals. They ents’ journey through life. A positive have supported, encouraged and eduattitude, self-belief, constant self-imcated me on becoming a better person provement, learning from mistakes, and advocate. We share, celebrate working together, the importance of and seek collaborations for a better friends and mentors, humility, being healthcare system for equitable quality grateful, and giving back to the comhealthcare. munity. Our New Journal Choosing the Path Less Traveled HELEN: The Journal of Human In many ways, we are all on a Exceptionality is dedicated to the spirit journey. As I started my career in of a pioneer of courage and determidentistry, I did not realize the unexnation. Helen Keller was exception-
Dr. Allen Wong
al; someone who lost the ability to hear and see at a very young age, but would eventually teach generation after generation of people to overcome significant barriers and accomplish great things in life. Her determination, much like my parents’, is nothing short of inspirational. We look forward to reaching out to others to share their own stories or be inspired. Join us in helping lift spirits and celebrating human exceptionality!
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) and Publisher of HELEN: The Journal of Human Exceptionality. helenjournal.org • HELEN | 29
ADHD ANDSLEEP By Ronald E. Becker, MD
Photo by Rick Guidotti/Positive Exposure
30 | HELEN • helenjournal.org
C
hallenges with sleep are studies are necessary to formally a common complaint and diagnose some sleep disorders (such concern throughout the as obstructive sleep apnea, periodic lifespan. It has long been limb movement disorder, or narcoleprecognized that there is a special sy), but sleep studies will be generally connection between attention deficit/ unhelpful at identifying problems that hyperactivity disorder (ADHD) and are based on sleep schedule or habits. problems with sleep. There is clear The duration of sleep we need varies evidence that people with ADHD have over the lifespan, and generally gets a higher rate of sleep difficulties than shorter with age. School-aged children the general population. Sleep deprivalikely require 10 or more hours of tion or poor sleep will often make the sleep, teens require 9 to 9-1/2 hours of symptoms of ADHD more prominent, sleep, and not until early adulthood do and will more substantially impact daytime performance.1 In addition, a side effect of some medication treatments for ADHD can include problems with sleep. Recognizing Sleep deprivation or poor this complex and bidirectional interaction is essential to undersleep will often make the standing the relationship between sleep and ADHD. symptoms of ADHD more When considering the interprominent. section of sleep difficulties and ADHD, it can be helpful to consider separately the impacts of short sleep durations versus those sleep we approach a sleep need of 8 hours.3 disorders that directly affect the qualSleep deprivation usually occurs when ity or efficiency of sleep. A simplified one falls asleep later than needed for way to think of this is that insufficient the scheduled morning wake time to sleep durations may most prominently meet a responsibility such as work, impact attention, focus, and the execschool or child care. A common sleep utive functions (the organizational and pattern that can create short sleep memory functions), while disrupted durations is called delayed sleep phase or poor quality of sleep may be more (DSP), which refers a sleep pattern in likely to result in increases of moodiwhich the internal body clock is “set” ness, irritability or hyperactivity. late compared to the clock on the wall. Fortunately, most common sleep People who tend to be “night owls,” difficulties which affect people with who seem more alert in the evening ADHD can be addressed with changes hours and less likely to be early risers to sleep habits or behaviors, although are more likely to have this pattern. some also require medical, and at There is some good evidence that intimes surgical, interventions.2 The dividuals with ADHD, from childhood to adulthood, have a higher chance starting point for getting help is to to have this kind of set to their body explore all components of sleep so as to best characterize the problem. Sleep clock.
“
Rising later on weekends compared to the time of waking on weekdays is the main cause of DSP. A classic situation for a teenaged student might be that they need to wake at 6:30 am for school, but on weekends they sleep past noon. While they would need to fall asleep at 9:30 pm in order to get sufficient sleep on a school night, rising at noon on weekends resets their body clock and can make it nearly impossible to fall asleep until well after midnight. Then when they need to wake at 6:30 am for school, they are cutting their sleep very short. This can be frustrating, and people in this situation will sometimes become anxious or angry at bedtime when they cannot fall asleep, which only serves to further impede the process of falling asleep. Others might look for distracting activities while waiting to fall asleep and can then become engaged in those activities which can also cause further delay of falling asleep.4 When short sleep durations become chronic, this can lead to substantial daytime sleepiness and significant trouble waking on weekday mornings (which, for students, can frustrate parents and caregivers). Consider that if three hours of sleep are missed each night, over a typical five-day school or work-week this would add up to nearly 15 hours of missed sleep that week. For students with ADHD, this can often mean that homework takes even longer to complete, and then the need to finish homework may further delay bedtime. The evening light from screens that are so commonly part of homework now can make the body clock run even later. For this reason, DSP can be considered a vicious cycle, and as such, the helenjournal.org • HELEN | 31
solution to fixing DSP can sometimes seem counter-intuitive. Even though it seems that sleeping in on weekends is allowing for “catch up” of sleep, it is in fact simply perpetuating the problem. The solution is therefore to set a schedule of waking up on weekends at the same time as on weekdays. It is important when waking that there is a lot of morning light exposure and reasonable activity (that is, to get out of bed and start daytime activities.) As a separate issue, younger children with ADHD can often become more active just before they finally fall asleep. This is also due to activation from the body clock, but in this case it is normal. Often, when the concern is raised that the child is going to sleep too late, a closer look shows that they may be waking later than other children at that age, and that total sleep duration is therefore normal. When children in this situation are put to bed much earlier than they are likely to fall asleep, they can become frustrated and start to fight back against bedtime. They start to think of their bed as a place they go when they are not tired, rather than when they are tired. Allowing a later bedtime, as long as this permits for sufficient sleep duration, can often be the cure. PROBLEMS WITH SNORING Snoring can be a sign that there is a problem with breathing during sleep. This breathing difficulty is often called obstructive sleep apnea (OSA), which means that an obstruction of the airway, either full or partial, is causing trouble with breathing during sleep. During sleep, there is a general change in how the body regulates the breathing process as compared to being awake. An important change during rapid eye movement (REM) sleep includes a reduction of tone of the muscles of the airway, which can cause them to become relatively floppy and thereby obstructing air flow. For this reason, difficulty with OSA can be higher during REM stage of sleep and it can also be associated 32 | HELEN • helenjournal.org
with certain sleep positions. Some people may snore but without any impact on the ability to move air in and out of the lungs. But distinguishing between problematic and non-problematic snoring is challenging, based on observation alone. For this reason, it can be important to get a sleep study to accurately measure the breathing patterns at night. As with the other sleep concerns, the interrelationship between OSA and ADHD is also likely bi-directional. However, in this case, it is clear that the presence of OSA can have adverse daytime effects impacting attention, focus, executive function and activity level, but it is much less clear whether having ADHD is a risk factor for OSA. There are a number of risk factors for OSA, and they can vary by age. For children, the main risk is that of enlarged tonsils or adenoids. Obesity and medical conditions that impact muscle tone are other risk factors, but less common. Among teens and adults, the main risk factor is obesity. Having OSA can cause medical problems for anyone, but individuals with ADHD are also more likely to experience worsening of the ADHD symptoms from the OSA. The poor sleep quality that comes from OSA will increase problems with attention and focus and will make challenges with executive functioning more prominent. When one is sleepy due to OSA, it can be harder to initiate or finish tasks. Tasks that require sustained attention, such as driving a vehicle, can become dangerous. Unlike for habit or schedule-based sleep problems, treatment of OSA usually requires a medical or surgical intervention. Adults can frequently benefit from a device that provides positive air pressure to their nose and throat through a mask. This helps to hold open the airway tissues. Among younger children, the most common treatment would be to remove any large tonsils and/or adenoids, as this is frequently the source of the problem. Research in children has shown good
evidence that treatment of OSA will improve ADHD symptoms as well as improve learning and cognitive development.5 In exceptional cases, treatment of OSA by removing tonsils and adenoids can result in complete elimination of the symptoms that lead to the ADHD diagnosis. If a surgery isn’t desired or indicated, some children can also be treated with positive airway pressure. Treatment with a nasal steroid spray to help shrink enlarged tissues can be tried, but is less certain of success. PROBLEMS WITH EXCESS MOVEMENTS IN SLEEP A lesser known, but equally important, problem that can affect sleep is that of a periodic limb movement disorder (PLMD). This disorder creates repeated kicks of the legs or movements of the arm during the nonREM stages of sleep. This problem is much more common among adults that children, but there is increasing awareness that children can also have this difficulty. It can be challenging to determine on the basis of history alone when PLMD is present because some amount of movement in sleep is normal. Usually a full, monitored sleep study would be needed to identify this disorder since then, the movements can be tracked and characterized, and the impact on the sleep patterns can be measured. When the limb movements are present at a high level, the disruption to sleep can result in inefficient and poor quality sleep. This impacts daytime performance much like as seen in OSA. Of special interest when considering the overlap of PLMD and ADHD is the role of the body stores of iron. Low body stores of iron are closely associated with PLMD, although some people with normal iron can still have them.6 It is hypothesized that this is due to the role of iron as a cofactor in the production of the neurotransmitter dopamine in the brain. In addition to its role in regulating movement, dopamine is a central player in the brain
“
Low body stores of iron are closely associated with periodic limb movement disorder (PLMD).
chemistry related to ADHD. For this reason, it is often a good idea to check the iron status before getting a sleep study. The most reliable marker for low iron is the ferritin level, which we generally like to see between 50-100 ng/ mL when considering the impact on sleep. A blood count can be helpful, but a blood count alone is not enough since anemia (low blood count) is a late sign that the iron level is getting low. PROBLEMS WITH DAYTIME SLEEPINESS Narcolepsy is a neurologic disorder that affects the regulation of sleep and wake. As a result, individuals with narcolepsy can have difficulty with the quality of their overnight sleep in addition to having the excess daytime
sleepiness which is the hallmark of the disorder. It is rare, with an estimate of about 1 person in 2000 having the disorder. However, it also can have a wide range of severity, so it is possible that those with a milder form may never receive the diagnosis. Despite its rarity, it is helpful to keep this sleep disorder in mind, since even in its milder forms it can be confused with ADHD.7 Further confusion can arise as the stimulant medications used to treat ADHD also improve the sleepiness symptoms of narcolepsy. Diagnosis of this disorder requires an overnight sleep study and an additional sleep study during the day to assess the frequency and pattern of naps. These studies usually require the person being studied to have stopped any neurologically-active medications first. helenjournal.org • HELEN | 33
or, increasingly, in the home setting. MEDICATIONS FOR ADHD AND Home studies mostly look for OSA, SLEEP but increasingly can collect more Stimulant medications are the most information. Home studies are not commonly used medications for currently well-validated in children ADHD. Stimulant medications are and so most often, children need to be often suspected when someone with studied while monitored in a hospital ADHD also has sleep difficulties, but or stand-alone sleep laboratory. Forusually, the stimulant medication is tunately, sleep studies are done with out of the body before night time, or only external sensors and therefore the dosing can be adjusted so that it can be child-friendly. has minimal impact on sleep. This Actigraphy refers to the use of a means, though, that someone with ADHD may have a higher tendency to device to track body movement as a substitute for directly measuring sleep. impulsive behaviors or elevated activThese are ity in the evening usually wristhours when watch-like dethey are trying vices, and they to go to sleep are now availsince the effect Some evidence points able direct to of medication is gone. Although to a benefit to the use of consumers or built-in funcit is a reasonable principle to min- melatonin at bedtime for tions of some “smart watchimize the use of people with ADHD. es.” Profesmedications, it is sional grade also sometimes devices are also available, but mostly very helpful to add a non-stimulant used in the context of a sleep medicine medication in the evening to address clinic. Many of these devices now the ADHD symptoms that are present also measure heart rate, temperature, at bedtime. Alternatively, some evilight exposure and other measures dence points to a benefit to the use of to improve the accuracy of interpretmelatonin at bedtime for people with ing sleep patterns. The use of these ADHD, as this can help with generdevices yields similar information as a al calming and moving sleep onset sleep diary, but can be easier to do. earlier.
“
ASSESSING SLEEP What information can be helpful for you or your healthcare provider to assess your sleep patterns? The information in Table 1 may be helpful to collect when discussing sleep patterns with a health professional. Tracking your sleep patterns over the course of a week or two (and including at least one typical weekend) can be helpful to identifying the duration of your sleep, any patterns to sleep troubles and can help identify if DSP is present. You can track your sleep on paper (with standard sleep diaries available at sleepeducation.org among other sites.) Sleep studies are currently performed either in monitored centers 34 | HELEN • helenjournal.org
CONCLUSION Even though sleep difficulties are common in people with ADHD, treatments are available to either eliminate or improve sleep. You don’t need to accept poor sleep! Improving sleep can have a very positive effect on daytime wellbeing and function, and treatment of OSA can dramatically improve health and functioning.
Ronald E. Becker, MD is a Developmental-Behavioral pediatrician and Sleep Medicine physician in clinical practice in the Developmental Medicine Center at Boston Children’s Hospital. He has a special interest in the identification and treatment of sleep difficulties and disorders in children and young adults with neurodevelopmental disorders. He is an Assistant Professor of Pediatrics, Harvard Medical School. He is also Assistant in Medicine, Department of Pediatrics, Children’s Hospital Boston. This article is included in the upcoming monograph “Sleep and Sleep Disorders in People with Disabilities” published by HELEN: The Journal of Human Exceptionality. REFERENCES 1. Craig SG, Weiss MD, Hudec KL, Gibbins C. The Functional Impact of Sleep Disorders in Children With ADHD. J Atten Disord. 2020;24(4):499-508. doi:10.1177/1087054716685840 2. Ricketts EJ, Sturm A, McMakin DL, et al. Changes in Sleep Problems Across Attention-Deficit/Hyperactivity Disorder Treatment: Findings from the Multimodal Treatment of Attention-Deficit/Hyperactivity Disorder Study. J Child Adolesc Psychopharmacol. 2018;28(10):690-698. doi:10.1089/ cap.2018.0038 3. Iglowstein I, Jenni OG, Molinari L, Largo RH. Sleep duration from infancy to adolescence: reference values and generational trends. Pediatrics. 2003;111(2):302-307. doi:10.1542/peds.111.2.302 4. Crowley SJ, Acebo C, Carskadon MA. Sleep, circadian rhythms, and delayed phase in adolescence. Sleep Med. 2007;8(6):602-612. doi:10.1016/j.sleep.2006.12.002 5. Chervin RD, Ruzicka DL, Giordani BJ, et al. Sleep-disordered breathing, behavior, and cognition in children before and after adenotonsillectomy. Pediatrics. 2006;117(4):e769-e778. doi:10.1542/ peds.2005-1837 6. Youssef J, Singh K, Huntington N, Becker R, Kothare SV. Relationship of serum ferritin levels to sleep fragmentation and periodic limb movements of sleep on polysomnography in autism spectrum disorders. Pediatr Neurol. 2013;49(4):274-278. doi:10.1016/j.pediatrneurol.2013.06.012 7. Maski K, Owens JA. Insomnia, parasomnias, and narcolepsy in children: clinical features, diagnosis, and management. Lancet Neurol. 2016;15(11):1170-1181. doi:10.1016/ S1474-4422(16)30204-6
ASSESSING SLEEP SCHEDULE • What time is bedtime, “lights-out” and sleep onset? • If there are wakings at night, when do they usually occur? • What is the time getting out of bed to start the day? • Are there naps? If so, when and for how long? Are they every day? • Is there a different schedule on weekdays versus weekends?
MEDICAL HISTORY • Are there any chronic illnesses, especially neurologic or respiratory? • Are there any sources of pain? • What medications are taken, and when? • Is there tonsil enlargement? Chronic stuffy nose? • Is there obesity? • Has there been nasal or facial injury?
SLEEP ENVIRONMENT • Is the bedroom shared with someone else? On a shared bed? • Is there anything unusual about the room or the bed? • The use of lights and/or electronic devices should be minimized. • For children, how close are they to their parents? How do the parents respond if they wake?
•
SOCIAL SITUATION • Who is at home? Any recent changes? Any current stressors that are affecting sleep?
OTHER SLEEP RELATED HISTORY • Is there snoring? • Any sleepwalking, sleep talking or sleep terrors? • Is there bedwetting? • Are there leg or arm movements while asleep? Are there leg movements or an urge to move legs when trying to fall asleep? • Is there excess daytime sleepiness ?
Delayed Sleep Phase can create a vicious cycle with respect to sleep patterns. ADHD
“Late” Circadian Clock Trouble Falling Asleep
ADHD SYMPTOMS
Late Waking on Weekends
Short Sleep Duration
Late Sleep Onset
helenjournal.org • HELEN | 35
I
n 2012, in the absence of a national survey on abuse of people with disabilities, the late Jim Stream (former Executive Director of the Arc of Riverside County) and I decided to do our own. (The most recent prior study had been, Maltreatment and Disabilities: A Population- Based Epidemiological, by Patricia M. Sullivan, Ph.D. 2000) Initially, our team consisted of Jim and I, who developed the questions. Next step was dissemination, that was my job; then analysis of the results, which Dick Sobsey, EdD agreed to do. I opened on June 6th (D-day) and ended collection in 90 days, having reached 7,289 responses. At that time, Dick was not able to study the results, so this was handled in-house. The data that was reported on focused on the responses of family members and people with disabilities. Many also included their personal stories, which were not included in the report. The most recent report on abuse of people with disabilities was published by Disability and Abuse Project in 2013, entitled, Victims and Their Families Speak Out: A Report on the 2012 National Survey on Abuse of People with Disabilities. Our website is: www.disabilitywithoutabuse.com
Key Findings of the Survey • Over 70 percent of people with disabilities reported that they had been victims of abuse. More than 63 percent of family members said their loved one with a disability had been an abuse victim. Focusing exclusively on those with developmental disabilities, 62.5 percent of this group said they had experienced abuse of one type or another. • Of the various types of abuse, victims with disabilities reported verbal-emotional abuse (87.2%), physical abuse (50.6%), sexual abuse (41.6%), neglect (37.3%), and financial abuse (31.5%). In other writings, I have cited ret36 | HELEN • helenjournal.org
DISABILITY A
The Gut-Wrenching St By Nora Baladerian, PhD.
Studies cited by The Arc of the rospective studies that summarize the United States confirm the high rates accounts of adults about their expeof abuse for children with disabilities, riences of abuse as children. These especially with developmental disabilstudies show that one in four women, ities. (Davis, Abuse of Children with and one in six men, report that they Intellectual Disabilities.) were victims of sexual abuse as a The data on perpetrators is importchild. (Centers for Disease Control ant. Perpetrators of abuse are generally and Prevention, 2006) In another study not strangers. Most often, they are of adults retrospectively reporting people close to the victim. In the geadverse childhood experiences, 25.9 percent of respondents reported verbal neric population, more than 80 percent abuse as children, 14.8 percent report- of child abusers were parents. (Office for Victims of Crime, United States ed physical abuse, and 12.2 percent reported sexual abuse. (Center for Disease Control and Prevention, ONLINE RESOURCES 2009) The findings of these studies are DisabilityWithoutAbuse.com for the generic population. But NoraBaladerian.com what are the rates of abuse for people with developmental disabilFor information about abuse and ities? Dr. Dick Sobsey’s research criminal victimization of people with found that people with developdisabilities, please visit: mental disabilities are 4 to 10 DisabilityWithoutAbuse.topicbox.com times more likely to be victims of & DisabilityWithoutAbuse.com abuse than the generic population.
AND
comparisons of data sets for children (0-18 years of age) cannot easily be made. A 2019 article in DameMagazine. com by Victoria Brownworth mentioned that “a year-long investigation in 2017 by NPR News’ Joe Shapiro, in partnership with the DOJ, led to a
tatistics
“
information in a format that equips them to recognize signs of abuse and how to take immediate and effective action (see my “TEN TIPS” paper). • Parents and caregivers can take proactive action to reduce both the incidence of abuse as well as the impact of the abuse on the survivor and family members. The “how to” is described in detail in my book, “How to Reduce the Risk of Abuse.” This provides a step-by-step preparation. There are modification versions, one in Spanish, and the other, a book for those who read best with fewer words. Therapy for victims should be but is not easily accessible. A training program has been developed to train new and experienced therapists to effectively work with these victims of crimes.
Department of Justice, 2009) Victims with developmental disabilities are often abused by household members. Dr. Dick Sobsey’s research Perhaps 20 percent of found that people with generic children are victims of child abuse. Children with developmental disabilities developmental disabilities are at least 3.4 times more are 4 to 10 times more likely to likely to be victims than the be victims of abuse than the generic child population. Do Nora Baladerian, the math. By the time they generic population. Ph.D. Lic. Psycholoreach adulthood, a majority gist (PSY 11675), is the of people with disabilities Director of the Counhave been victims of abuse. seling Center of West Los Angeles; series of reports that aired last January Proposed legislation that affects Project Director, Child/Adult Abuse & on ‘Morning Edition’ and ‘All Things people with intellectual and developNeglect Disability Outreach Project/ mental disabilities should utilize these Considered,’ revealed that people with CAN DO! project under Arc Riverside intellectual disabilities are sexually statistics. (to 2003); and Director, Disability assaulted at a rate seven times higher Additional studies and ongoing colWithout Abuse Project (since 1991). lection of data by the Bureau of Justice than those without disabilities.” The DisabilityWithoutAbuse Project: In light of the ongoing high inciStatistics maintain an awareness of 2001 S. Barrington Ave, Suite 203, Los dence of report: the extent of abuse of this and related Angeles, CA 90025. Email: baladeripopulations. The difficulty is that BJS • Increased efforts should be made to inform parents and caregivers of this an@disabilitywithoutabuse.com collects its data from age 12 on up, so
helenjournal.org • HELEN | 37
“
True interdisciplinary care is an amazing thing to behold.
Our Model of Care 38 | HELEN • helenjournal.org
By Matt Holder, MD, MBA
T
wenty years ago, I entered the field of intellectual and developmental disabilities (IDD). I knew nothing about it. Medical school had not prepared me for it. Life, in general, had not prepared me for it. I knew that this was where I wanted to make a difference – but I had no idea how it was going to happen. There was no medical specialty in it. As a young physician with an MBA and six figures of student loan debt, I spent the next three years living below the poverty line, so that I could somehow find a way to make a career in this field work. Nobody could show me the path, because the path I wanted to be on didn’t exist yet. But I did meet some amazing mentors, friends, and colleagues who opened the doors they could, and who invited me to stand with them and bang on the doors they couldn’t. At the time, the US was just admitting to itself that there was an issue with the quality of healthcare that people with IDD were receiving in the community. My mentors had told me about the report from the Surgeon General. The Surgeon General identified two barriers that really seemed to stand in the way of better health outcomes: 1) healthcare provider knowledge and 2) healthcare provider reimbursement. Of course, there were other issues such as discrimination, but those two pervasive systemic issues stood out to me and Dr. Henry Hood, my mentor and co-founder of Kramer Davis.
“
In 2002, we set out to be part of the solution. If we could teach clinicians to provide better care, and if we could develop a sustainable and reproducible model for providing that care, we could forever change the community-based system of care for people with IDD. The first step we took, was to try to impact the ability of clinicians to learn about people with IDD. We formed the American Academy of Developmental Medicine and Dentistry (aadmd.org) with some of the brightest minds in the field. We formed an alliance with Special Olympics (specialolympics.org), where I would eventually serve as their Global Medical Advisor for 16 years. My colleagues and I would eventually train hundreds of thousands of physicians, dentists, and other healthcare providers from all around the world. We changed curriculum in medical schools, dental schools, nurse practitioner schools, and medical residency programs. Eventually, we would form Developmental Medicine and Developmental Dentistry (DMDD) as specialties in the care of adults with IDD. While there is still much work to be done, we are in a significantly better place than we were 20 years ago. It is so heartening to see an entire generation of young professionals not only wanting to learn more about IDD but wanting to dedicate their professional careers to caring for this patient population.
This is why sustainable modeling is so important for the future. If our students, residents, and young professionals cannot find a place to work because the system of care is so broken, if they cannot earn a living dedicating their careers to people with IDD, then they will quickly forget everything we taught them – and nothing will change. It should not require a vow of poverty,
Matt Holder, MD, MBA
as it did in my case, in order to start a career in Developmental Medicine or Dentistry. THE NEXT STEP IN THE EVOLUTION OF WELLNESS FOR PEOPLE WITH IDD In 2005, we launched the predecessor to what would eventually become the Lee Specialty Clinic (leespecialtyclinic.com) in Louisville, Kentucky. This experience allowed us to prove that interdisciplinary care focused
One of the first things that my mentors showed me how to do was to listen and advocate for our patients – to be patient, inquisitive, person-centered, and never to accept the status quo. But above all else, they taught us that our patients are our greatest teachers. For us, two of those patients were Trey Kramer and Terrence Davis. helenjournal.org • HELEN | 39
THE MORE YOU UNDERSTAND HER WORLD, THE MORE POSSIBILITIES YOU SEE. For Julia’s family, early screening for autism made a lifetime of difference. Find out more at ScreenForAutism.org
© 2019 Sesame Workshop. All rights reserved.
40 | HELEN • helenjournal.org
exclusively on people with IDD could produce better patient experiences and better health outcomes. True interdisciplinary care is an amazing thing to behold. When your psychiatrist understands that an ear infection can lead to behavioral changes that don’t need to be treated with psychiatric medications, and your primary care physician understands that the medication they are thinking about prescribing causes oral health changes that may predispose somebody to developing painful cavities, and when your dentist understands that certain patterns of tooth damage are indicative of a long-standing medical problem that can contribute to the risk of aspiration pneumonia, you begin to see the value of interdisciplinary care. You get to see how exponentially important it is to vulnerable patients who have difficulty navigating the traditional healthcare system. As our model of care evolved, we saw practitioners from each of the 16 healthcare disciplines featured at our clinic learn how to practice in ways that were never discussed during their formal training – and the results were clearly better. What we built in that model was extraordinary, but it didn’t come about because we knew how to do it all on our own. We borrowed heavily from the national and international experts we knew who were making their own clinical innovations. One of the first things that my mentors showed me how to do was to listen and advocate for our patients – to be patient, inquisitive, person-centered, and never to accept the status quo. But above all else, they taught us that our patients are our greatest teachers. For us, two of those patients were Trey Kramer and Terrence Davis. Trey and Terrance, both non-verbal young men, taught us about strength, about resilience, and about hope. They taught us that it is never too late
to learn new things. They taught us that what works is not always what is found in the medical textbooks. For these reasons and so many more, in order to honor our teachers, our future clinics will bear their names. Kramer Davis Health is the next
families together – to exchange new ideas, better practices, dreams, and lived experiences. In the same way that we have been made better by nurturing these relationships and learning from our colleagues, our patients, and their families, it is our hope that we will be able to share our stories and innovations with others so that they will raise the bar even higher. Together we will learn from each other, inspire each other, and help each other break down barriers. For this reason, we have chosen to be an inaugural sponsor of HELEN. We hope you will enjoy it, learn from it, and contribute to it, so that we may all Terrence Davis on the left with his brother Alex Davis forge a future of better health for Americans with IDD, step in the evolution of wellness for together. people with IDD. Over the coming years, Kramer Davis Health will be developing and sharing innovations in data-driven, interdisciplinary clinical Matthew Holder, MD is recognized practice. We are currently building as an international leader in the the data infrastructure to work in emerging field of developmental tandem with technological innovamedicine. Dr. Holder began working tions in machine learning and artificial on what would result in Developmenintelligence. We will be tracking, tal Medicine becoming a recognized meticulously, the impact of our model medical expertise soon after starting of care, not just for the patient, but on his career. In 2002, he took over the the healthcare system in general. In so American Academy of Developmental doing, we will provide efficiencies and Medicine and Dentistry (AADMD). decision-making support that will free Since then, the AADMD has set the up clinicians to do more of what they curriculum and standards that guide want to do – spend time helping peomedical students, residents and felple with IDD live better lives through lowship-level physicians to better treat better health. and understand patients with IDD. Medical schools and residency proBRINGING CLINICIANS AND grams around the world have impleFAMILIES TOGETHER mented curriculum changes based on It is our hope that HELEN: The the work done by Dr. Holder and the Journal of Human Exceptionality will AADMD. He is the CEO of Kramer serve as a tool to bring clinicians and Davis Health. helenjournal.org • HELEN | 41
NATIONWIDE
Resources, Education & Advocacy
A Message from
The Dental Education Community By Nader A. Nadershahi, DDS, MBA, EdD 42 | HELEN • helenjournal.org
Volunteers at Summer Games for Special Olympics Special Smiles: Residents, Fa AADMD/ SCOPE students from Dugoni School of Dentistry, Davis Cali
N
ationally, we suffer from inadequate, readily accessible care as well as inadequate access to funding and coverage for the oral and overall healthcare needs of individuals with intellectual and developmental disabilities. To become a champion for change, one must immerse themselves in the community and work with patients, caregivers, providers, and other partners. The American Dental Education Association is proud to be one of these partners working to provide resources, education and advocacy across the nation. Dental schools play a vital role in training the next generation of providers to see the bigger picture of wellness for each individual, including those who live with multiple oral and overall health conditions. At University of the Pacific, Arthur A. Dugoni School of Dentistry, our history of caring for people with IDD and training practitioners to meet the needs of these exceptional patients goes back many decades. Our predoctoral educational program has focused on both didactic and clinical training for our graduates since the late 1990s in our Special Care Clinic (SCC) as well as our postdoctoral Advanced Education in General Dentistry (AEGD Residency) program. The SCC and AEGD clinics have been a strong safety net in Northern California for those requiring advanced care and hospital dentistry in outpatient and inpatient settings. We took a leadership role in forming the Special Care Clinic in San Francisco to serve individuals in need from across Northern
aculty, ifornia
“
Dental schools play a vital role in training the next generation of providers to see the bigger picture of wellness for each individual, including those who live with multiple oral and overall health conditions.
California. Our outreach activities include “Give Special Kids a Smile,” where we rally dental students, faculty, local dentists, assistants, and hygienists for volunteer events to provide care for children and adults with IDD. University of the Pacific’s Dugoni School also has a very active chapter of the American Academy of Developmental Medicine and Dentistry (AADMD) and Student Community Outreach in Public Education (SCOPE) group, which offer a variety of opportunities for our campus to serve the community and collaborate with other healthcare providers and educators. Our partnerships with Special Olympics Northern California, the Golden Gate Regional Center, San Francisco Mayor’s Office on Disability, and many other groups have led to improved oral health and access in our communities. At the beginning of the pandemic response of vaccination concerns, those with special healthcare needs were left behind. The Dugoni School of Dentistry was among the first large scale vaccination clinics for those with IDD and their families and caregivers. In April 2022, our Special Olympics Dental Academy brought athletes and their families to campus to learn basic instruction on dental procedures and hear their feedback on what our dental students and faculty should be saying and thinking about when we are communicating with them. The Pacific Center for Equity in Oral Health Care (formerly known as the Pacific Center for Special Care) also has addressed disparities in oral health for many
Dugoni School of Dentistry, Vaccination Clinic for IDD population, caregivers, and their families, one of the first in the Nation
years through programs, advocacy and the development of alternative care delivery models such as teledentistry. Coming up, we have more opportunities to connect and learn from each other and our patients. On September 6-7, 2022, the Dugoni School of Dentistry is looking forward to hosting the Santa Fe Group’s Fall Program on “Achieving Equitable Oral Health for Those with Intellectual and Developmental Disabilities: A Promise, A Pledge, A Plan.” The two-day educational gathering celebrates the 25th anniversary of the Santa Fe Group and also honors co-founder Dr. Arthur A. Dugoni – one of the giants of dental education and an early champion of our school’s efforts to care for individuals with IDD. We hope you can join us in San Francisco or at other events in the future. Nader A. Nadershahi, DDS, MBA, EdD is Dean and Vice Provost, University of the Pacific, Arthur A. Dugoni School of Dentistry; Chair of the Board of Directors (2022-2023), American Dental Education Association. helenjournal.org • HELEN | 43
JOURNEYS
A
s I look back on my journey through life as a person with disabilities, I can’t help but feel grateful for the path that I took. Sure, I had moments of frustration and self-doubt, but with a strong support system (family, employment services
Sharing the Secret of My Success By Justin Steinberg through agencies that serve people with disabilities and friends), those moments dissipated fairly rapidly, though I’d be lying if I said I didn’t struggle emotionally, especially during the job hunt. However, I can say that those moments were necessary and helped me grow as a person and find my niche in my current job, a research assistant at Stanford University’s Center for Biomedical Ethics. It’s interesting how I got the job, especially considering my early diagnosis as a child. I was originally diagnosed with a severe intellectual disability. The person giving the diagnosis claimed that I would most likely never be able to go to school. I can’t imagine how devastating this must have been for my parents, but thankfully, a teacher of students with visual impairments demonstrated that this was not an accurate diagnosis. As it turns out, the test they were using on me (it involved putting different shaped blocks into their matching shaped holes) would be tough for anyone with a visual impairment. And that was what I had. 44 | HELEN • helenjournal.org
School Days Because of the proper diagnosis, I was able to enroll in a general education classroom. I also had adaptive physical education, though I did also participate in general physical education as well. All in all, even with my visual impairments, I still did well academically. Socially, I struggled. I didn’t understand people’s sense of humor as a child and my social skills weren’t the best. I suspect now that I was probably on the autism spectrum even before I received the actual diagnosis of Asperger’s syndrome, also known as autism spectrum disorder Level 1, before I started high school. I had some friends, but generally speaking, I kept to myself. I did start receiving some social skills training in fifth grade and that definitely helped me out. I do wish, though, that an autism diagnosis could have been talked about. I honestly feel it could have made my elementary and middle school experiences a bit better. As a teenager, I began to understand myself a bit better and
felt that I was starting to do better socially. I still didn’t have too many friends in school, but in eighth grade, I got involved with Special Olympics Northern California with bowling, and that was where I found my niche socially and made friends. I went on to try basketball and other sports, including floor hockey. Graduating from high school was a big milestone for me. I graduated with high honors and received a gold tassel. This showed the person who misdiagnosed me how wrong they were about my disabilities and I was determined to keep finding more ways to prove them wrong. I would go onto community college, graduate with an associate’s degree in special education (with honors) and then transfer to San Francisco State University, where I completed a bachelor’s degree in history, cum laude. I then completed a master’s degree in special education with an emphasis in visual impairments from that same university. I also graduated with the highest award given to graduate students receiving degrees, the Graduate Student Award for Distinguished Achievement, partly due to my grades and also due to my service work and culminating experience project, a self-advocacy curriculum guide for eighth grade, academically-oriented students with visual impairments. The Job Hunt Even with these achievements, I found the job hunt to be brutal. I tried being a special education aide, but it didn’t really work out. So I joined a nonprofit that served children and adults with developmental disabilities and I lasted a year and a half before the after-school program I was working in was eliminated. I then took a break from the job hunt and focused on myself. I got involved with coach-
ing softball for Special Olympics and was inducted into the San Jose Sports Hall of Fame as the 2019 Special Olympics Athlete of The Year. In February of 2020, I went to Washington DC for Capitol Hill Day, where I advocated for federal funding for the Inclusive Health and Schools Partnership Program for Special Olympics Northern California. When COVID-19 hit, the job hunt became a lot more difficult and my self-esteem took a hit, but I worked with a job coach on my interviewing skills. In August of 2021 I finally got hired at Stanford University’s Center for Biomedical Ethics as a research assistant, and I can say I absolutely love the job. In fact, because of the work I am doing at Stanford and the work I have been doing for Special Olympics Northern California, I am receiving the 2022 Change Maker Award. My journey through life has been an exciting one. While I didn’t expect to end up working in biomedical ethics, I’m really glad I ended up there. My life’s journey also helped me develop the skills needed to be an advocate for all people with disabilities.
Justin Steinberg is a Special Olympics Northern California athlete, athlete leader and serves on the AADMD Board of Directors as the Self-Advocates Committee Chair. He is also a research assistant at the Stanford Center for Biomedical Ethics. He has a master’s degree in special education from San Francisco State University.
Wisdom I can share from my experience of living with a disability: Never let a label define who you are, especially when the label is inaccurate. The job hunt is a long, arduous process and you will be getting a lot of “no’s” before you finally get a “yes”. Keep at it, but make sure to take time off from the hunt if you find that your self-esteem is being crushed. Try to avoid tying yourself down to one particular job. Keep your options open to all possibilities. What you end up with might just work out even better than the job you originally wanted. Remember that having a disability is part of your identity. It can get frustrating, but sometimes, disabilities allow you to participate in experiences that you would never get to otherwise.
helenjournal.org • HELEN | 45
YO U DON T H AV E T O BE SO STRONG BUT IF I’M NOT, WHO WILL?
Being a caregiver takes a special kind of commitment. We know your strength is super, but you’re still human.
F I N D S U P P O R T F O R Y O U R S T R E N G T H. 46 | HELEN • helenjournal.org
A A R P. O R G / C A R E G I V I N G 1 - 8 7 7 - 3 3 3 - 5 8 8 5
Founding Sponsors Comprehensive and collaborative support for the disability community demands partnerships, coalitions and alliances. The Founding Sponsors of HELEN: The Journal of Human Exceptionality are making it possible to provide valuable information to healthcare professionals, those living with disabilities, their families, and caregivers.
Steve Perlman, DDS, MScD, DHL (Hon.) For information about becoming a Founding Sponsor of HELEN, please contact Vanessa Ira at vira@helenjournal.org. helenjournal.org • HELEN | 47
People-centered care means all your health professionals work together. Join AADMD - Health professionals united in one voice for inclusive health.
The American Academy of Developmental Medicine & Dentistry (AADMD) is a non-profit, membership organization of interdisciplinary health professionals — including primary physicians, medical specialists, dentists, optometrists, nurses and other clinicians — committed to improving the quality of healthcare for people with intellectual & developmental disabilities (IDD). We make a difference through membership, education and advocacy. Associate memberships available for nonclinicians as well. Patients with IDD shouldn’t have to advocate alone.
48 | HELEN • helenjournal.org
aadmd.org