Tuesday, May 29, 2012

Leave the disabled alone

Once again, disabled children are being used to balance the California Budget problems. This article ran in the SF Chronicle yesterday describing the elimination of therapy for kids like Maggie. http://www.sfgate.com/cgi-bin/article.cgi?f=%2Fc%2Fa%2F2012%2F05%2F27%2FMNVJ1ONAEA.DTL

 Maggie will actually not be affected by these cuts as she is now over 18 and she qualifies on her lack of any financial means. But Maggie would certainly not be where she is today if she had not received this therapy. For many many years she received both physical and occupational therapy twice a week. That has been reduced in recent years - not really because Maggie's lack of need, but because she is aging. (They point to various things to justify cutting back, but everyone knows that's just sort of how it goes in this program.)  Even with the fewer appointments, though, I cannot deny that Maggie continues to benefit and improve because of the therapy, equipment and support she receives - and has received for 18 years -  from California Children's Services (CCS)

When Maggie was little, her OT, Lidia started working with her on making choices. Eventually that let to using switch toys. Maggie could do some things well and others not so well. I didn't realize it at the time, but Lidia was providing Maggie the building blocks to use her dynavox, which she does through a complicated use of switches.  Other OTs continued this work and helped make the switches work for Maggie and her vision issues and her left handed dominance and everything else. The Physical therapists started with a child who could not ride comfortably in a car for more than a few blocks. They ordered equipment that would help, they worked her body and helped her learn to help herself as much as she possibly could. That child who could not be in a carseat for more than a block or so now sits comfortably in a customized wheelchair, (designed and paid for by CCS) most of the waking hours of the day. Recently she added a walker to her regimen and works with all her might to make that thing go where she wants it to..

I do not know where she would be today if she did not have this support for all these years and I worry tremendously both about the Maggie's who are born today and their mothers who won't get this support.

Because I don't know what else to do, I fired off a letter to the editor of the Chronicle trying to explain why this is so important and how devastating these cuts will be. They are short sighted. Providing therapy to children will prevent a lot of higher and more frequent costs down the line. More important than the money, though, is the improvement in the lives of these children. Maggie is an extreme example because she has extreme disabilities. For many children whose bodies are less compromised, the differences are even more obvious and dramatic. For some it's the difference between walking an life in a wheelchair.

Someone needs to put a price on that.

Just got word the Chronicle will print my letter to the editor. If it does any good, I am delighted. My problem is they only allow 200 words and I need about 2000


  1. I hate that this is happening, but I am heartened that your words are getting out there. You reach and educate so many people through your blog (like me! I don't even remember how I got here, maybe through Rolling Around in my Head?) and even more with your letters to the editor. Maggie is a very impressive (and beautiful--loved the prom pics) woman, and she clearly gets it from you. Thank you for making a difference.

  2. I'm so grateful for your clear, strong voice -- keep writing those letters!


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