By 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 caregiversabout 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 schoolsto 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 veryfew 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 Healthand 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.
About the Author
Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.
Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.
