TennesseeWorks blog highlights health disparities of adults with IDD

Yellow computer screenshot of blog article by Janet Shouse

People with disabilities may face their fair share of obstacles while trying to navigate everyday life, but when it comes to seeking quality health care, some of those obstacles might be dangerous. In a recent Rise to Work blog post, Vanderbilt Kennedy Center (VKC) staff member Janet Shouse shared some of the most common hindrances that individuals with disabilities face in the hospital or doctor’s office, and ways that some clinicians and others are trying to address those challenges.

In addition to serving as program coordinator for the IDD Health Care Toolkit, an online resource for medical professionals to better serve adults with intellectual and developmental disabilities (IDD), Shouse also serves as writer and coordinator for TennesseeWorks Partnership’s weekly blog, Rise to Work: An Insider’s Look at Disabilities and Employment.

“While the focus of the blog is supposed to be the intersection of employment and disabilities, I take a broad view of the blog’s purpose,” said Shouse, who is the parent of a young adult with a developmental disability. “I try to include information that I think families of adolescents and adults with disabilities or adult with disabilities themselves might find useful. So while there have been multiple blog posts about Tennessee’s relatively new waiver program, Employment and Community First CHOICES, and proposed changes to the Tennessee Department of Intellectual and Developmental Disabilities’ day and employment services, Rise to Work has also included posts about supported decision making and inclusive higher education programs in Tennessee.

“I wrote ‘Health Disparities for Adults with IDD Make Inclusive Health a Worthy Goal’ because improving health care for adults with IDD is a passion of mine,” she said.

In the blog post below, Shouse addresses some of the most common reasons that those with IDD have increased needs for medical care. She also shares why those with disabilities have more difficulty finding that care, how some health care providers are trying to address the need, and what self-advocates and loved ones of people with disabilities can do to encourage more meaningful interactions with health care providers.

For more information about “Health Disparities for Adults with IDD Make Inclusive Health a Worthy Goal,” contact Janet Shouse at janet.shouse@vumc.org. Click here to view other Rise to Work blog posts.

Elizabeth Turner is VKC associate program manager of Communication and Dissemination

Health Disparities for Adults with IDD Make Inclusive Health a Worthy Goal

Janet Shouse

Janet Shouse

Did you know that people with intellectual and developmental disabilities die an average of 16 years earlier than typical Americans?

And unlike other Americans, women with IDD die earlier than men with IDD.

This is not information any of us really want to hear.

So why is this happening?

We know that people with intellectual and developmental disabilities have a higher rate of co-occurring physical disorders, such as epilepsy, chronic constipation, obesity, vision impairment, hearing loss, diabetes and Parkinson’s disease. They also have higher rates of mental health conditions, such as anxiety, schizophrenia and depression.

We know that people with IDD often are prescribed medications that can lead to medical conditions, such as metabolic syndrome, diabetes, osteoporosis, tardive dyskinesia and chronic constipation.

Individuals with IDD may not be able to report easily when or if they are in pain or feeling sick, leading to difficulties in diagnoses or even missed diagnoses. Often folks with IDD have experienced trauma in the past, including trauma related to health care professionals and medical procedures, and they may be reluctant to seek medical care or resistant to exams and treatments.

Some other issues include:

  • Physicians, nurses and other health care professionals may have had little or training in caring for people with IDD, especially adults. And they may have little or no experience with people with disabilities in their lives, so they may not feel equipped to interact appropriately.
  • Clinicians may feel inadequate or anxious.
  • Medical facilities and equipment may not be physically accessible, such as scales to weigh someone who uses a wheelchair or an examination table that allows for easy transfers.
  • Access to health care providers may be limited by a lack of health insurance or by the type of insurance, such as TennCare/Medicaid.
  • Health care providers may have concerns about issues of consent and conservatorship for the individual with IDD.
  • Lack of a primary care provider may lead to people using the Emergency Room for most of their care, which is not cost-effective, convenient or suitable for routine care.
  • Clinicians may allow an individual’s diagnosis of autism, Down syndrome or other developmental disability to “overshadow” other possible diagnoses of physical or mental health conditions.
  • Reimbursement issues, since treating patients with disabilities may take longer than a “typical” office visit would take.

One of the “hats” I wear here at the Vanderbilt Kennedy Center is serving as the program coordinator for the IDD Toolkit, www.iddtoolkit.org, an online resource for medical professionals to better serve adults with intellectual and developmental disabilities. The tools include Health Watch Tables for autism, Down syndrome, Prader-Willi, fragile X, fetal alcohol spectrum disorder, and other developmental disabilities as well as tools on mental and behavioral health. (Please check it out!) The IDD Toolkit project, which was funded by a grant from the WITH Foundation, has also led us to create online training for medical professionals as well as for individuals with disabilities, family members and caregivers about the special facets of health care for adults with IDD. The online training was a collaboration with the Department of Intellectual and Developmental Disabilities and the Bureau of TennCare. And we’ve done several telehealth sessions (live videoconferences) with community health care providers, offering sessions on such topics as epilepsy, autism spectrum disorder, the special physical health care needs and behavioral health needs of adults with IDD. This, too, was funded by the WITH Foundation.

I recently was able to attend the annual conference of the American Academy of Developmental Medicine and Dentistry, an organization that was organized in 2002 to provide a forum for health care professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities. The AADMD mission is “to improve the quality of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities.”

The conference was held in Seattle, WA, in conjunction with the Special Olympics National Games, which helped launched the Center for Inclusive Health. According to the website, inclusive health is “the inclusion of all people, including people with intellectual disabilities (ID), in mainstream health policies and laws, programming, and services, training programs, research, and funding streams.” This effort includes encouraging fitness and wellness centers to become more inclusive as well, and for individuals to take charge of their health and fitness.

Many of you may not be aware that for more than 20 years, Special Olympics, with help from the Golisano Foundation, has had a program called Healthy Athletes, in which athletes who are coming to a venue to compete are given health screenings. Since that time, Special Olympics Healthy Athletes has provided more than 2.1 million health screenings and trained more than 240,000 health care professionals in more than 135 countries.

Healthy Athletes screenings by volunteer health professionals are offered in vision, dentistry, podiatry, physical therapy and general fitness, audiology, healthy lifestyles and medical/sports physicals.

In 1995, the first year the screenings were done at the World Games, 15% of the athletes who were there to compete and were screened had such dramatic health conditions that they had to be referred to the emergency room for urgent care.

One of the big initiatives of AADMD, Special Olympics and other disability-related organizations has been to have people with intellectual and developmental disabilities designated by the federal government as a “medically underserved population.”  There are multiple benefits that come from having this population named an MUP. For a fuller understanding of the reasons for seeking such a designation, please see the Autistic Self Advocacy Network’s policy brief.

The benefits include:

  • Medical school loan forgiveness or reductions
  • Special visas for foreign medical school graduates
  • Expansion of physician and dentist training in the care of patients with IDD
  • Funding for more preventive care and screenings for those with IDD
  • Community health center grants to provide care specifically to this population
  • Prioritization in research of issues affecting people with IDD

The best ways to advocate for such a designation are contacting the governor and our two U.S. senators. But with the election coming up in November, you may just want to wait.

For years I have heard families and individuals with disabilities say how much they love their pediatrician, and how difficult it is (or was) to find an adult health care provider who knew about their disability– and who was willing to take them as a patient. And who was willing to take their insurance, which is very often TennCare/Medicaid. My son has experienced all those things. So, having the opportunity to spend two days with a whole crowd of people—physicians, nurses, dentists, medical students and other health care professionals—who have the knowledge, the training, the experience and the DESIRE to serve adults with IDD was wonderful and energizing for me.

I heard about efforts at several medical schools to incorporate courses about providing health care to people with IDD into the medical schools’ curriculums, since most do not currently have such courses for those training to care for adults. I also learned about a Federally Qualified Health Center that focuses on serving people with IDD in Colorado Springs, CO, called the Developmental Disabilities Health Center. I heard about a nurse who makes sure that adults with disabilities at her hospital in Stockton, CA, have the equipment they need and the things they like in an effort to keep them comfortable, engaged and calm while in the hospital. She, with the help of grant funding, gets specialized wheelchairs, so that those patients who may have had to leave their chairs at home can at least get out of bed. She also procures weighted blankets and coloring books and fidget toys.

One of the very few benefits of people with intellectual and developmental disabilities living in institutional or congregate settings was that a team of health care clinicians and therapists were able to specialize to provide multidisciplinary, coordinated care to these patients. One key, longtime member of the IDD Toolkit team, Dr. Tom Cheetham, the deputy commissioner of health services for the Tennessee Department of Intellectual and Developmental Disabilities, got his start working in a large developmental center in Ontario, Canada. He embraced the challenges and the rewards of working with this population, and in the years since those developmental centers closed, he has worked tirelessly to persuade other medical professionals to find their passion to care for adults with IDD.

As people have moved out of the developmental centers and into our homes, into our neighborhood schools and into our communities, these moves toward inclusion must include inclusive health and health care. I would encourage you to check out the Center for Inclusive Health and see if there are things that you might want to try.

These issues of health disparities for people with intellectual and developmental disabilities are issues that I and the folks at the Vanderbilt Kennedy Center are working to address through the IDD Toolkit project, our University Center for Excellence in Developmental Disabilities, our Leadership Education in Neurodevelopmental Disabilities training, and numerous other activities at the VKC. This work also happens through partnerships with state government and community organizations like Tennessee Academy of Family Physicians, the American Academy of Developmental Medicine and Dentistry and Special Olympics.

I would invite you to share ideas, opportunities, comments or questions about these efforts. Please email me at janet.shouse@vumc.org. May we all strive to take care of our health and may we all be able to find and access appropriate health care.

Giving Banner

This is a monthly email of Vanderbilt Kennedy Center Notables published by the Communications staff of the Vanderbilt Kennedy Center. Between issues of Notables, you can stay up to date on the latest Vanderbilt Kennedy Center news, information, and resources via the Vanderbilt Kennedy Center’s Facebook page.