This past January, The Special Hope Foundation provided funding to the Vanderbilt Kennedy Center for the creation of an electronic toolkit for primary care of adults with developmental disabilities. In this guest blog post, Program Coordinator Janet Shouse talks about the toolkit, and it’s rock-star reception:
Adults with intellectual or other developmental disabilities 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.
While these adults deserve quality, patient-centered health care, many health care professionals have had little training or experience in working with individuals with developmental disabilities and may not to feel comfortable providing care for adults with IDD.
The Special Hope Foundation saw a need to try to improve health care and provided funding for our IDD Toolkit, www.iddtoolkit.org, a website devoted to information for the primary care of adults with intellectual and developmental disabilities. The toolkit came online in late January, and is accessible on a P.C., tablet or smart phone.
Those of us on the project team have been gratified at the enthusiastic reception the website has received. We surpassed our initial three-month goal of more than 1,000 visits within the first week after launch. As of early June, the site has had more than 8,700 visits, with more than 26,500 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 main categories:
- General Issues–Information about how to interact effectively with people with communication barriers, how to discuss issues of informed consent with individuals with IDD, and includes a downloadable form detailing information about that day’s visit to the doctor.
- Physical Issues–This section 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.
- Health Watch Tables–Provides 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.
- Behavioral and Mental Health Issues–This section 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.
All of 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.
One of the physicians involved in the Canadian project, Dr. Thomas Cheetham, moved to Tennessee several years ago and saw a 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 this website will help equip primary care practices to care for adults with IDD as they transition from their pediatrician’s care. By adapting the Canadian tools and making them available electronically, every U.S. primary care provider could have access to these tools.
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 having this information available will lead to improvements in the health of adults with IDD across the nation.
Thank you Janet!
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.