Opinion: How to ensure the NIH’s decision to recognize people with disabilities as a health disparity population makes a difference
My daughter Katie was born with severe disabilities. She went on to develop profound autism, attention deficit disorder, and obsessive-compulsive disorder. The hardest part for her is knowing that she’s different but not understanding how or why. My career as a health care manager and now a researcher has been derailed and fragmented because I have a profoundly disabled daughter who has undergone so many treatments and required special schools.
Still, she has grown up. At 21, she now has health insurance and stable income through Medicaid and Social Security. She is fortunate to live in 24/7/365 state-supervised residential housing. The abrupt transition from school-age support to limited adult services is aptly termed “the cliff.” I often wonder: What will happen to my daughter when I am too old to advocate for her?
