Saturday, April 02, 2011

It was April Fools, but true.

Warning. This is a long post that tends toward the ranting side.

I was laid off yesterday. After six years with Exceptionalities, after all the love and devotion and dedication that I had given the agency, after all the extra hours I had put in because things had to get done whether they paid me for it or not, after coming to think that Exceptionalities was my life's work -- I was laid off. With the funding cuts, difficult choices had to be made. And one of those was that the administration had to be cut. And even though I was the one who kept the place going through my boss' cancer and the madness of our long-time program supervisor's retirement, my bosses decided that the new administrator was more valuable than I was. All my time and dedication earned me two weeks severance and a payout on my accrued vacation time. (Vacation time that piled up because I hadn't been able to take any time off while running everything for so long.) I'm bitter. I'm angry. And I'm mostly sad.

I didn't have a chance to say my goodbyes to anyone. They waited until the end of the day to give me the news. To be fair, they probably expected that I would have time next week to say goodbye since I was offered the opportunity to work during the two weeks severance pay. (Really? You lay me off with two weeks "goodbye pay" as consolation, then expect me to come in to work those two weeks? Just because in the past I've always been willing to go above and beyond for my job, doesn't mean I'll continue to do so when the job is taken away.) The not being able to say goodbye hurts, though. I loved my guys. I know it's not politically correct to call the participants "my guys," but I really cared about each and every one of them. I knew their families, their histories, their likes and dislikes, their personality quirks. I fought for them, advocated for them, loved them like they were my family. They were my family. And I'm crying as I type this, because of the unfairness of it all.

The horrible thing is that I can't blame my bosses for having to make the choice. (I blame them for the choice they settled on, but not for having to make the choice.) My situation is one that is happening all over the state of Florida right now. It's the result of a government that chooses to not only ignore the needs of a population that doesn't have a voice to speak up with, but is also deliberately taking away their basic human rights.

On Thursday, Governor Rick Scott issued an emergency ruling in Florida to cut med-waiver service payments by 15%. This is a huge cut. And it was effective immediately (on April 1st) with no prior warning.

If you're not familiar with the med-waiver, it provides funding for people with developmental disabilities of mental retardation, autism, cerebral palsy, spina bifida, and Prader-Willi syndrome. In Florida, there are approximately 35,000 people served by this program. Some of the people are in group homes funded by the program, and others are able to stay in their family homes with personal care providers who come in to bathe, change, and help care for their needs that the family can't physically handle. The waiver also provides meaningful day activity (education and work opportunities) so that a person isn't literally lying in bed for three years with only a television for company (as in the case of one of my students). Medical needs (such as doctors, dentists, and therapists) are also funded by the waiver.

Friday, without any warning, every service lost 15% of their funding. Personal care workers who earn only a little over minimum wage, lost 15% of their paycheck. Group homes, mostly mom and pop establishments, lost 15% of their funding. Transportation companies (the only way many of our wheelchair-bound citizens can get anywhere) lost 15% of their funds - an almost certain death sentence to the companies in these times of rising fuel costs! In fact, many agencies and services are racing around trying to figure out how to keep their doors open. Because as much as those of us in the field would like to think that we are doing our jobs out of a love for the disabled population, the truth is that all of us have bills and expenses that we have to meet. And without a livable paycheck, we can't keep caring for the people we've been caring for.

Governor Scott's decision to balance the state budget on the backs of the disabled is going to have horrible consequences, but the public won't know because the disabled don't have the voice to be heard. And it's terrible and awful, because someone should know what we're doing to them.

VG lives at home with his mother and father. His father is disabled (back injury, and his mother supports the family driving a bus for the school district. VG is blind and deaf as well as developmentally disabled. His mother relies on a personal caregiver to come in every morning to help VG get up, get dressed, and eat breakfast. VG can't manage these tasks on his own, and his father can't physically handle helping him since VG isn't able to keep his balance when walking. Without the personal caregiver and the ADT day program that VG attends, his mother will have to give up her job to stay home and take care of him. Which means that she will need to get public assistance, since there won't be a paycheck coming in to the house.

GA is 70 years old, with a developmental disability and cerebral palsy. He's been in a wheelchair all of his life. For the past 10 years he's lived in a group home. The owner of the group home is a nurse, so for the first time in his life GA is able to enjoy life without pressure sores or gastric episodes. He has been getting regular physical therapy, so his muscles are loosening up enough that he can hold a marker and color pictures. He's also been receiving speech therapy, and even strangers are able to understand his words now. He loves the social aspect of going to day program. With the cuts, his group home may have to close. And I don't know what is going to be left open for him to go to.

I could go on and on and on. I'm worried for my guys. I'm worried for the field. I'm worried that nobody is going to care that isn't in the field or that doesn't have a child with a disability.

And I'm worried that because I'm no longer there, I won't be able to make a difference.

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