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NEWS & LETTERS, June - July 2008
Special needs under capitalism
As the single mother of a totally dependent 18-year-old with special needs, I am constantly challenged to find quality care and programs to help her in a world which seems to value her less as a person because of her disabilities. Caregivers are only paid between $9.57 and $12.00 per hour to help me care for her. There are few people willing to do this kind of work for that kind of pay, and because of that, we have had 10 different workers this past year. The Union, while advocating for the caregivers, pays the least and has the worst health insurance plan.
Now that she has graduated high school, my daughter can go into a vocational program until she is 21. They try and set the young adults up with a job of some kind, but they don't get paid for their work! They say it's more for the "experience" and for learning to get along with other people and dealing with work deadlines, etc. It will be very hard to find a job my daughter can do, but why is the work she might do not valued enough to compensate her for it? The attitude is that she should be grateful for the work and not complain about not getting paid.
What really worries me is the lack of programs for my daughter once she turns 21 and can no longer attend the vocational programs. There are very few programs out there that address the needs of a 21 year old with special needs. The ones we have been able to find are only two days a week. In order to get her to and from these programs, I would have to quit my job. Or put her on a bus by herself to get her there, which is not an option. It is assumed that most people with special needs will find a job of some kind, or even go to college. My daughter is unable to do either of those things, so she will probably spend most of her time on the computer on YouTube, or watching TV. Even the summer camps that we count on so heavily every year don't take young adults over the age of 21. It makes me angry that this society cares so little for those with more limited capabilities once they reach this age.
What scares me and other parents of kids with special needs, is what happens to them if something happens to us. I worry about this constantly. I have a friend who will take my daughter if something happens to me prematurely, but what if she decides she can't? What happens if my daughter outlives me? There are adult family homes in the state I live in, but many of them will not take adults as dependent as my daughter is. And it's unclear if Medicaid will pay for these homes. My fear is that she will end up in a nursing home that will not take good care of her. Will they bother to get to know her and what she likes and doesn't like? Will they allow her to have her headphones and play the music that means so much to her? Will they change her diapers when needed and get her out of bed? Or will she be just left alone, without any companionship and proper care?
These are my worst fears.
--Suzanne K.
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