Health Care for People with Intellectual and Developmental Disabilities across the Lifespan

Rubin, I.L., Merrick, J., Greydanus, D.E., Patel, D.R. (Eds.) (2016), Health Care for People with Intellectual and Developmental Disabilities across the Lifespan
Switzerland: Springer.
A new book has been published that offers a unique lifespan approach on health care for people with intellectual and developmental disabilities. It addresses the clinical as well as the systems of delivery of health care. It also provides a practical approach to dealing with the health and well-being of people with intellectual and developmental disabilities.
Chapters written by researchers of the Rehabilitation Research and Training Centre on Developmental Disabilities and Health include the following:
Kruti Acharya, Abigail Schindler and Tamar Heller:
Aging: Demographics, Trajectories and Health System Issues, pp 1423-1432.
David Ervin
Healthcare Financing, pp 177-183
David Erwin and Brian Hennen
Community Healthcare, pp. 229-241
James Rimmer and Kelly Hsieh
Health Promotion, pp1087-1103

Perceptions of health and healthcare of people with intellectual and developmental disabilities enrolled in Medicaid Managed Care

Gibbons, H. M., Owen, R., & Heller, T. (2016). Perceptions of health and healthcare of people with intellectual and developmental disabilities enrolled in Medicaid Managed Care. Intellectual and Developmental Disabilities, 54(2), 94-105. DOI: 10.1352/1934-9556-54.2.94
This study examined perceptions of health and healthcare of people with intellectual and developmental disabilities (IDD) receiving Medicaid Managed Care. Exploratory, semistructured interviews were conducted with 23 participants. Findings indicate that participants generally expressed being in good health and defined good health as (a) absence of pain, disease, and symptoms; (b) adherence to or not requiring treatment; (c) physical self-care; (d) mental or spiritual self-care; and (e) ability to perform the activities one wants to do. Participants conceptualized healthcare as (a) ensuring needs are met through access to services, (b) obtaining quality services, (c) navigating the healthcare system successfully, and (d) receiving humanizing healthcare. This study has implications for improving healthcare and communications between people with IDD and healthcare providers.

Impact: Feature Issue on Supporting Wellness for Adults with Intellectual and Developmental Disabilities

Impact: Feature Issue on Supporting Wellness for Adults with Intellectual and Developmental Disabilities
Volume 29 · Number 1 • Winter 2016

This issue is co-edited by Kelly Hsieh and includes articles about the HealthMatters study and intervention that is led by Jasmina Sisirak and Beth Marks and an article Tia Nelis.

Online in PDF at and

National Goals Conference: Health and Wellness Strand

National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities

Setting a National Agenda for Health and Wellness Research, Practice, and Policy

In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Health and Wellness Issue Brief, AAIDD Inclusion Journal Article, and Video

Pregnancy Outcomes for Women with Intellectual and Developmental Disabilities

Pregnancy Outcomes for Women with Intellectual and Developmental Disabilities

Presenters: Susan Parish, PhD, MSW

RRTCDD 2016 Health and Wellness Series Webinar

Did you know women with I/DD had longer hospital stays, and were more likely to have Caesarean deliveries in contrast to other women? Rates of adverse pregnancy outcomes were elevated for women with IDD across a range of measures, including early labor, preterm birth, and preeclampsia, and their infants were more likely to have low birth weight. Dr. Susan Parish will present findings from a study that compared deliveries among women with IDD to the general obstetric population, and discuss the implications of these findings, as well as the targeted interventions needed to address these detrimental outcomes.

Racial and Ethnic Disparities among Adults with Intellectual and Developmental Disabilities

Sandra Magaña, Susan Parish, Miguel A. Morales, Henan Li and Glenn T. Fujiura

study investigated the extent of racial and ethnic disparities in the health of adults with intellectual and developmental disabilities. Analyzing data from the 2002-2011 Medical Expenditure Panel Survey and the 2000-2010 National Health Interview Survey, we found that Black and Latino adults with intellectual and developmental disabilities have markedly worse health in contrast to their white peers with intellectual and developmental disabilities.
Full Brief

Life course health and healthcare utilization among adults with spina bifida

Liptak GS, Robinson LM, Davidson PW, Dziorny A, Lavalley R, Flaherty MG, Dosa NP

Developmental Medicine & Child Neurology 2015 Nov 2

To evaluate the prevalence of organ system disorders and describe healthcare utilization among adults with spina bifida at a regional clinic.

METHOD: This study was a structured chart review using the Rochester Health Status Survey-IV. 65 males, 57 females aged 16 to 59 years were seen at the Spina Bifida Center of Central New York between January 2007 and December 2008 (annual hospitalization rate was 15 out of 100).

RESULTS: Hospitalizations and acute outpatient visits were associated with having shunted hydrocephalus, whereas visits to the emergency department were associated with having a decubitus ulcer. Logistic regression models revealed that older adults made proportionately fewer visits to primary care providers than younger adults (odds ratio 0.919; p=0.02). Yet for every 1-year increase in age, the odds of being hospitalized increased by 5% (odds ratio 1.051; p=0.03).

INTERPRETATION: Adults with spina bifida have multiple organ-system disorders. They have greater difficulty accessing services, and utilize emergency and inpatient healthcare at higher rates than the general population. In the future, adults with spina bifida will require access to more medical care and preventive services if they are to have optimal health, well-being, and functioning.

doi: 10.1111/dmcn.12952

Health Conditions and Functional Status in Adults with Autism: A Cross-Sectional Evaluation

Fortuna, R.J., Robinson, L., Smith, T.H., Meccarello, J., Bullen, B., Nobis, K., Davidson, P.W.
J Gen Intern Med. 2015 Sep 11.


BACKGROUND: Children and adolescents with autism spectrum disorder (ASD) have many well-known health concerns, yet health conditions in adults with ASD remain poorly defined.

OBJECTIVE: To examine health conditions and functional status in adults with ASD and identify factors associated with health and functional status across age cohorts.

DESIGN AND SUBJECTS: We collected cross-sectional data from 255 adult subjects aged 18 to 71 years with ASD using the Rochester Health Status Survey IV (RHSS-IV), a 58-item validated survey instrument. We used the National Health and Nutritional Examination Survey and National Health Interview Survey to provide comparative prevalence rates in the general population.

RESULTS: Compared to the general population, young adults aged 18-29 with ASD had a substantially higher prevalence of seizure disorder (11.2 % vs. 1.4 %; p = 0.002), depression (16.4 % vs. 6.4 %; p = 0.007), hypertension (12.9 % vs. 6.3 %; p = 0.05), and allergies (39.7 % vs. 8.4 %; p < 0.001). In contrast, young adults with ASD had considerably lower rates of sexually transmitted illness (STI) (0.9 % vs. 4.3 %; p = 0.03), tobacco use (5.2 % vs. 31.9 %; p < 0.001), and alcohol misuse (0.9 % vs. 11.9 %; p < 0.001). Adults 40 and over with ASD also had higher rates of seizure disorder (29.2 % vs. 1.7 %; p < 0.001), lower tobacco use (2.8 % vs. 24.5 %; p < 0.001), and lower alcohol misuse (1.4 % vs. 18.2 %; p < 0.001) compared to the general population. Amongst the 55 % of participants with a documented IQ score, 91 % had an intellectual disability (IQ < 70). Within the cohort aged 40 years old and older, only 54.2 % were independent with eating, 43.0 % independent with dressing, and 43.1 % independent with bathing. Lower IQ and depression were associated with lower functional status. CONCLUSIONS: Adults with ASD have a high prevalence of seizure disorders and depression, but low rates of STIs, tobacco use, and alcohol misuse. Within our cohort, the majority of older adults with ASD required some assistance with activities of daily living.

Diversity among doctors: Students with disabilities are finding their place in medical schools—and beyond

Diversity among doctors: Students with disabilities are finding their place in medical schools—and beyond

Cathy Gulli

September 25, 2015

For Jessica Dunkley, getting into medical school was no ordinary childhood dream. Deaf since the day she was born, Dunkley aspired to become a doctor when, at age 10, her aunt gave her a plastic human anatomy model with removable organs.

She didn’t think it was possible until, in her mid-20s, she happened to read about deaf doctors practising in the United States. “I realized the opportunity was out there,” and she became “determined to do medicine.” Dunkley applied to numerous medical schools and, in 2010, completed the undergraduate program at the University of Ottawa, where a sign language interpreter accompanied her to class and clinical sessions. Today, Dunkley is finishing her second year of residency in public health and family medicine at the University of Alberta—making her one of the first deaf doctors in Canada.

Dunkley’s accomplishment represents the latest diversification of medicine, which was first practised mostly by white male doctors, and has since flourished with the inclusion of women and people of different races and ethnicities. Now the profession is set to expand again, as students with disabilities—including limited mobility or dexterity, hearing or vision loss, learning or developmental disorders, and psychological or mental health issues—are increasingly being accepted and supported at medical schools.

Like Dunkley, a handful of other young Canadians are making history by becoming doctors with disabilities: Megan Jack, who is also deaf, graduated from the University of Manitoba in 2013, and is now a family physician. Janel Nadeau had a stroke at 19, which partially paralyzed her and has affected her memory; she is finishing her training as a neurologist at the University of Calgary. Steven Daniel was paralyzed from the waist down during a paratrooping accident while serving in the military; although he is in a wheelchair, Daniel is training to be a family doctor at the Northern Ontario School of Medicine.

Part of what makes Dunkley’s experience so remarkable is the legal precedent she’s established along the way. In late June, she won a human-rights case against the University of British Columbia, which failed to provide her with a sign language interpreter in 2010, when Dunkley was supposed to start her residency. (She was later accepted at the University of Alberta, which provides interpreters.) Dunkley says the discrimination “came as a shock,” but she was not deterred. This ruling means others won’t be, either. “I just knew I didn’t want the next person to go through this,” says Dunkley. “I’m pleased it [will] improve accessibility.”

While disabled doctors have always practiced—in 2011, there were approximately 9,000 working, according to Statistics Canada—most of them became disabled after their education and training. What’s different “is the entry point,” says Melanie Lewis, associate dean of learner wellness and advocacy at the University of Alberta’s faculty of medicine and dentistry. “You have medical students presenting with disability.”

Over the last five years, there has been “a big tipping point” at medical schools toward “embracing the possibility of accommodation and looking at what we can do [for disabled students], rather than dismissing that it’s a possibility,” says Lewis, whose office supports students such as Dunkley with a range of conditions, including sleep disorders, depression, epilepsy and multiple sclerosis. “We’re recognizing that medicine needs to attract people [who] represent the diversity in society in order to provide good care.”

That’s forced universities and students to get creative. Dunkley has had to invent sign language for medical terms. She uses a digital stethoscope or portable ultrasound machine to check a patient’s heart. In the operating room, colleagues wear clear surgical hoods rather than paper face masks so she can lip-read. Daniel has used a “stand up” wheelchair, which allows him to be positioned upright at a patient’s bedside during surgery or in the emergency room. He gets help “scrubbing in,” and his colleagues position his wheelchair at the operating table.

Universities must identify the needs of students and residents, figure out how to meet their needs on campus and inside hospitals, then determine “who is going to pay,” says Geneviève Moineau, who was undergraduate dean at the University of Ottawa when Dunkley was a student. Since then, accommodation is “a topic that has become more important within our faculties,” says Moineau, now president of the Association of Faculties of Medicine of Canada.

Part of the conversation is about how impairment can actually facilitate better doctor-patient relationships: A disabled doctor may empathize more with patients, who, in turn, may relate to or trust a disabled doctor more because they feel understood. Dunkley has experienced this first-hand. “People come in and they are frustrated or going through a painful experience, and they feel they are the only one,” she says, “and then they [see] me and it just [gives] them a better perspective.”

What’s more, disabled doctors have all been patients, so they understand personally how a doctor’s disposition and bedside manner can affect someone. While Nadeau was recovering from her stroke, she saw “the whole spectrum of doctors,” and that’s partly what motivated her to pursue medicine. “I was determined to add to the good ones.”

While disabled doctors may be better equipped to bond with patients, it can also alienate them from other physicians. “You can sense this uncertainty or questioning about how you are going to be able to do it,” says Dunkley. This can be especially challenging during medical training, when students and residents move between different hospitals and clinics for brief rotations. “The most problematic people are usually [those] who do not work with me directly, and they have assumptions.”

That medical students and residents face stigma because of a health condition is ironic—but not so surprising. “There’s some deep psychological theory around how doctors in general may not necessarily accept their mortality,” says Vera Krejcik, president of the Canadian Association of Physicians with Disabilities. “A lot of people have noticed a certain discomfort; colleagues don’t know how to negotiate being with somebody with a difference.”

Krejcik had a stroke while studying medicine at the University of Calgary. With limited use of one arm, she switched her focus from internal medicine to psychiatry. It was a matter of being “realistic,” says Krejcik. “I don’t worry about hobbling around or needing to suture.”

Before anyone can become a doctor, there are technical standards they must meet, both physical and cognitive, says Lewis, who helped Dunkley establish herself as a resident at the University of Alberta. But there are intangibles to consider, too. Dunkley and others are proving that. As Lewis puts it, “Any candidate who comes from an extraordinary background with a unique perspective, they often do make extraordinary physicians.”