26 In the Spotlight Planning Ahead for Lifelong Care By Nancy DeVault Navigating support systems for individuals with disabilities can be overwhelming, especially since programs vary per state. A recent PBS article titled “What Happens to the developmentally disabled as parents age, die?” asked a tough question. The answer: Aging or ill parents and/or caregivers should plan ahead for the needs of adult children with disabilities, says Deborah Linton, Chief Executive Officer for the The Arc of Florida, a nonprofit that promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. “The time to make a transition in life is not during a crisis,” she explains, “so I encourage individuals to start planning sooner as opposed to later.” An i n d i v i d u a l born wi t h a developmental disability has the right to institutional care if they want it. “Most people in Florida (and around the nation) today choose not to accept institutional care to stay in the community,” says Me l a n i e M o w r y E t t e r s , Communications Director at the Ag e n c y f o r Pe r s o n s wi t h Disabilities (APD), of the common decision to opt for a Medicaid waiver. To be eligible for APD services, one must be a Florida resident and have one of the following seven developmental disabilities: autism, cerebral palsy, intellectual disabilities, Down syndrome, Prader-Willi syndrome, Phelan-McDermid syndrome or AmeriDisability July/August 2017
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