By Guest Blogger Janet Shouse, program coordinator, Development Disabilities Health Care E-Toolkit, Vanderbilt Kennedy Center
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.