Thousands of disabled Florida residents are currently sitting on a waiting list for the Medicaid iBudget Florida waiver, which would provide them with services to help them live independent and healthy lives. According to the Agency for Persons with Disabilities, as of October, 22,488 people were on the waiting list.
18-year-old JJ Holmes, who lives with Cerebral Palsy, has been on the waiting list for sixteen years. Holmes’s mother, Alison, assists him with all activities of daily living. Lifting him has become more difficult as he’s grown. He now weighs 110 lbs, and she is unsure how long she will be able to continue to lift him. She is already experiencing chronic back pain.
She fears that without help, JJ will end up institutionalized. Patricia Lewis of Clermont, FL, placed her son, Ques, who has Down syndrome, on the waitlist when he was 14. It has been more than a decade. As of last year, Ques was 30 years old and still waiting for services.
According to a report by the Ancor Foundation and United Cerebral Palsy, Florida ranks 34th in terms of serving the disabled population and last in terms of assisting them in finding work. Unfortunately, even with Medicaid, those who receive waivers find that Florida’s reimbursement rate is about 40% lower than the national average. Thus, making it difficult for them to afford the care they require.
Unfortunately, this is a problem nationwide. In March 2021, more than 800,000 individuals across the country were on Medicaid waiting lists for home and community-based services. In Texas, there were over 200,000 people on the waiting list as of 2015.
Jonathan Hughes of Tampa, Florida, has severe Cerebral Palsy. He was born prematurely. Hughes’ relationship with his supported living coach, Ernest Bennerman, is built on trust, comfort, and an understanding that comes from being in each other’s lives for the past 17 years. Hughes’ mother, Carol Novak, said she could no longer care for him at age 73.
The state argued that some of Bennerman’s responsibilities as a supported living coach can be done by so-called “personal supports”. These are caregivers who don’t receive the same amount of training or pay. Novak says that this puts her son’s health and safety in jeopardy.
It can be challenging to find support staff. This is partly due to low wages. Isaac Brown of Gainesville, FL, works 16-hour shifts at the Arc of Alachua County. The Arc is an organization that supports people with developmental disabilities. Brown works 90-100 hours each week for $12 an hour. The minimum wage in Florida is $11 as of September 30, 2022. The job is difficult at times. Typically, responsibilities can range from bathing to medication administration.
As someone who relies on personal care assistants, I know how important they are. My PCA helps me with daily living activities. These include bathing, toileting, and dressing. He also allows me to have access to the community. He takes me to the grocery store, restaurants, and the mall. The support of PCAs allowed me to move out of my parent’s house in 2020.
People with disabilities should have access to services that allow them to be a part of their communities. Waiting lists need to be eliminated. Additionally, wages need to increase so that it is easier to find support staff. Without support, people could end up in long term care facilities. Disabled people can live in the community with enough support. Care can’t wait, and home and community-based services are a lifeline for millions of disabled Americans.
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