Allow Audrey to regain her home health care services that were taken when she turned 21 years of age.
Dear Family, Friends, and Compassionate Others,
My name is Audrey Winkelsas and I am a junior at the University of Miami. I am majoring in biochemistry, planning to do medical research to help find the cure for Spinal Muscular Atrophy, the form of Muscular Dystrophy I was diagnosed with when I was seven months old.
My family has always provided my care. When I was offered the amazing opportunity to attend UM thanks to the George Jenkins Scholarship, I had to apply for Medicaid for attendant care since my family and my home are five hours away in Apopka, FL. After many rounds of appeals, the Florida Medicaid medical director recognized my need for care and granted me 24-hour care seven days per week. I have now turned 21 years old, and my care came to a halt.
Now that I am 21, Medicaid will only allow three, one-hour visits per day, none of which can be consecutive. I am so lucky to have parents who have always done whatever they can do to support me. My dad is currently home alone running the family business so that my mom can be here in Miami to care for me while we sort this out. Otherwise, with only three hours of care per day, I would have to drop out of the University of Miami and return home because I need assistance throughout the day and night. In addition to the obvious activities of daily living, I need help putting my breathing machine on when I go to sleep, rolling over in bed at night, repositioning in my wheelchair throughout the day, getting to class, and cutting my food in the dining hall, just to list a few. I have been on waiting lists for two years for waivers that have the capability of providing attendant care hours, but I have been told these lists can be virtually indefinite. Medicaid has told me the only option is to take me from my college dorm and put me into a nursing home. After sixty days they would do a re-evaluation and then possibly be able to discharge me with attendant care. That is inconceivable for a 21-year-old college student. Not to mention, I still would not have the one-on-one care I need and it would not be a safe environment for me since my compromised respiratory system would be prone to common infections like pneumonia.
Having exhausted all government agencies, I have turned to 21 Disabled for advice, the campaign that seeks to have Medicaid maintain medical services, including attendant care, to disabled young adults when they turn 21 years of age. With its support, I have begun this petition in an attempt to regain the hours I lost. I am asking for Medicaid to realize that my needs have not changed simply because I turned 21. 21 is just a number. It is a vital time in any young adult’s life, a time of learning and of reaching their full potential. I have big dreams and I want to make a difference in my community and the world. I only need the chance.
Thank you for caring and for showing your support!
- Aging Resource Center Director
Allow Audrey, a biochemistry major at the University of Miami, to regain her home health care services that were taken, due to a Medicaid policy, when she turned 21 years of age.
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