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

Categories: Health

Photo of Janet ShouseBy 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.

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Artist Sees Painting as a Way of Life
Artist Sees Painting as a Way of Life

Categories: Community Life

SummerMelody_largeBy Guest Blogger Mel Finefrock, editor and freelance writer

Prior to losing his sight due to complications with epilepsy, John Bramblitt processed his world and his experiences through drawing. Amidst grieving and adjusting to a life with blindness as a secondary disability, he found that he felt isolated both from himself and people around him. When he realized that what was missing in his life was art, he began to dabble in painting by touch.

At first, painting helped Bramblitt to express his anger with regard to the loss of his sight, but over time, he found that those feelings were replaced by a sense of peace and calm. Self-doubt gave way to self-confidence; aimlessness to purpose; and desolation to hope and joy. Through art, Bramblitt rediscovered himself and found a way to connect with others, starting with friends and family and eventually branching out to the public.

Of course, Bramblitt wasn’t aware initially, beyond a certain point, of the therapeutic effects which art had on him or, furthermore, that he would begin to deliver therapy to others. “I didn’t even think of painting as therapy for me – I thought it might actually be a little dysfunctional – so I didn’t tell anybody at first,” Bramblitt recounts. “But after six to eight months, I was so much calmer and happier, and then I wanted to do a show so I could meet other artists, because I wanted to meet other people who were just as obsessed as I was about art.”

At last, Bramblitt found the sense of community he had come to miss so much; to him, it was refreshing to be in the presence of like-minded people who may not necessarily have been going through the same things he was, but who had struggles of their own and could relate on that level.

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Why Disability Inclusion Won’t Work
Why Disability Inclusion Won’t Work

Categories: Civil Rights & Voting, Community Life

A cartoon stick figure stands with the words "Quality Control" and "Rejected" stamped on his back.

By Guest Blogger Kathe Palermo Skinner, M.A., L.M.F.T.

As a marriage and family therapist with multiple sclerosis, I write for this blog and others like it, getting the opportunity to be a source of strength for people and their families. That’s why I was surprised when one organization denied my professional presence because I didn’t have that specific chronic illness/disability.

Though illness-specific groups may be essential to living well, the “micro” view of disability dilutes what’s important for the non-disabled world to know. Advocating for one chronicity over another may be a reason society doesn’t see an inclusive, “macro” view of disability/chronic illness.

For inclusion to be successful, the commonality between disorders needs emphasis, not the differences between them.

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