Disability Blog: IDD Toolkit Offers Information to Improve Health Care for Adults with Intellectual and Developmental Disabilities

As the parent of a son with autism who has recently become an adult, one of my big concerns has been who will provide his medical care when he ages out of his pediatrician’s practice. Also, as a parent volunteer with a local autism organization, I often get phone calls from parents seeking medical care for their young adult children with autism.

While some areas may have specialists known as med-peds physicians who are trained as both internists and pediatricians, most patients with disabilities receive their primary care from an internist or a family practice physician. Many physicians receive little training in caring for adults with intellectual or other developmental disabilities, and many have little experience with this underserved population.

We know from research that adults with intellectual or other developmental disabilities, such as autism or Down syndrome, frequently face a cascade of health disparities. They may:

-have complex, multiple or difficult-to-treat medical conditions
-experience difficulty accessing health care, either because of physical barriers or financial barriers
-receive inadequate health care
-have difficulties expressing their symptoms and pain
-receive little attention to wellness, preventive care and health promotion

And these adults deserve quality, patient-centered health care.

The Special Hope Foundation, of Palo Alto, Calif., saw this need and provided funding for the IDD Toolkit, a website devoted to medical information for the health care of adults with intellectual and developmental disabilities (IDD). The toolkit came online earlier this year, and is accessible on a PC, tablet or smartphone. As of early August, the site has had more than 11,000 visits with more than 33,500 page views.

The toolkit offers best-practice tools and information regarding specific medical and behavioral concerns of adults with IDD, including resources for patients and families. The website is divided into four categories: General Issues; Physical Issues; Health Watch Tables; and Behavioral and Mental Health Issues.

General Issues involve topics such as communicating effectively with people with communication barriers, issues of informed consent with individuals with IDD and a downloadable form detailing information about that day’s visit to the doctor.

The section on Physical Issues includes downloadable forms for a cumulative patient profile and preventive care checklists for men and women, with special emphasis on matters that might be specific to people with developmental disabilities.

The Health Watch Tables provide guidance on specific health concerns for people with autism, Down syndrome, Fragile X, Prader-Willi syndrome, Williams syndrome and 22q11.2 deletion syndrome. A Health Watch Table on fetal alcohol spectrum disorders will be added soon.

The section on Behavioral and Mental Health Issues offers risk assessment tools, crisis management and prevention plans, downloadable forms for the health care provider and the caregiver to help address behavioral or emotional concerns, and guidance on psychiatric symptoms as well as psychotropic medications.

The forms for behavioral or emotional concerns (both provider and caregiver) and the preventive care checklists (male and female) rank as the most frequently downloaded forms.

All the tools, except for the Autism Health Watch Table, were developed in Ontario, Canada, to complement the Primary care of adults with developmental disabilities: Canadian consensus guidelines (DD Guidelines). The tools were developed by the Developmental Disabilities Primary Care Initiative with funding from the Ontario Ministry of Community and Social Services, Ontario Ministry of Health and Long Term Care, Surrey Place Centre and Surrey Place Centre Charitable Foundation. A print version of Tools for the Primary Care of People with Developmental Disabilities was published in 2011. (The Autism Health Watch Table was created as part of the IDD Toolkit project.)

One of the physicians involved in the Canadian project, Dr. Thomas Cheetham, moved to Tennessee several years ago and saw an urgent need for the same type of medical information here in the United States. He realized, however, that the information would need to be revised for the U.S. health care system and that making it widely available was vital, if health care was to be improved.

Dr. Cheetham, who is the director of Health Services at the Tennessee Department of Intellectual and Developmental Disabilities , worked with the Vanderbilt Kennedy Center for Research on Human Development, the University of Tennessee Boling Center for Developmental Disabilities and an advisory team of physicians, researchers, parents and self-advocates to adapt and update the Canadian tools for U.S. health care providers.

We hope the website will help equip primary care and other health care professionals to care for adults with IDD. By adapting the Canadian tools and making them available electronically, every U.S. primary care provider can have access to these tools. We also hope that individuals with disabilities, their family members and their support staff will share information about the IDD Toolkit with their health care professionals.

Our goal is that the IDD Toolkit website will serve as a resource for health care providers, individuals with disabilities, their families and support staff, and that having this information available will lead to improvements in the health of adults with IDD across the nation.

Janet Shouse is the program coordinator for the Developmental Disabilities Health Care E-Toolkit at the Vanderbilt Kennedy Center. She is also the parent of three young adults, including one with autism. She has served with various disability-related organizations, including Autism Tennessee, the Disability Coalition on Education and the Tennessee Autism Summit Team.