Forgotten by Florida

Published: Monday, December 1, 2003 at 6:01 a.m.
Last Modified: Sunday, November 30, 2003 at 10:53 p.m.

I am a 45-year-old resident of Gainesville and have lived in Florida for 22 years. I am the sister of a 43-year-old mentally and physically handicapped brother, David, who has numerous disabilities, not the least of which are severe mental retardation and cerebral palsy.

He has always lived with my parents in their home. My parents made the decision to move to Gainesville in late 2000 to situate themselves close to me.

In Michigan, my parents had received Medicaid funding for David for the ARC workshop and his daily living supplies. Upon their move to Florida, they knew there would be a temporary halt to those funds, but we felt confident that Florida would continue the Medicaid support, as it is a federal program and David had qualified for that support his entire life.

They didn't expect that David would be on a waiting list of approximately 12,500 people and would still be waiting for assistance as of the end of 2003.

My parents have always bore extra expenses far and away above what has been given by past Medicaid help. Now, after all these years when they are in their 70s and finally requesting extra financial support so that David can be placed in a group home, they have to start completely over; as if he were just born and newly requesting assistance.

So many times over the years when his care threatened to overwhelm them, they could have shucked their responsibility and asked that the state take over and provide full-time care. But they didn't, and now their reward for sticking it out is to be virtually invisible - a number at the bottom of an endless waiting list.

My parents are both retired schoolteachers and on a fixed income. So, not only do they experience the stress of providing care for a severely physically and mentally disabled child, but also the stress of seeing their money dwindle away - money that is needed to provide for their future when they will have assisted care needs.

We are all more acutely aware of the fact that we don't know what tomorrow can bring, especially with the current funding cut crisis. Our anxiety has increased tenfold regarding securing David's future.

Will my parents be able to see him transition successfully to a community group home setting as they had hoped? Or will he be "homeless" when they pass away because of lack of Medicaid waiver funding?

Emotionally, I feel that I should never have advised my parents to move from Michigan to Florida. However, mentally I still believe that it was the wisest decision they have ever made since they needed to be in close proximity again with a family member.

To be honest, I feel like my state has let both David and my parents down. Why should it be that disabled individuals don't have the same freedom to move freely between states without losing all their financial assistance?

At this point in time, my brother is not only disabled, but we are too. We're disabled by fear, anxiety, frustration, sadness and hopelessness at his situation. We have lost hope that it's Florida's goal to ensure that the most vulnerable of its citizens are safe, well cared for and achieving a quality of life . . . not when services are being reduced or cut, options are being taken away and there's a waiting list of 12,500 individuals that's growing every day who are begging for assistance.

Terri Yousse is a graduate of the University of Florida.

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