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.

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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

Celebrate in triplicate

Maggie’s birthday is in a couple of weeks. Birthdays are often difficult for parents of disabled children because it is like a flashing billboard reminding us of how different our kids are from their non-disabled peers. That is not so much the case with me anymore, but it was for several years. I still dislike her birthday time, for other reasons. In Maggie’s world birthdays mean more than gifts and celebrations, it is time to check in with all the service providers to renew, update tweak or even discontinue services. And Happy Birthday to you too.


This started yesterday with our visit to the doctor at California Children’s Services (CCS). This one is actually semiannual. The physical and occupational therapists give their report on Maggie’s progress toward her goals, set new goals for the next six months and recommend the frequency of service. The PT recommended cutting her therapy in half. I think that is a crock, but I did not fight it. The budget is in tatters in California and I am not sure what benefit she would get from someone who does not want to work with her.

I can accept the fiscal realities. Everybody is feeling the pinch, and Maggie is no different. What I will NOT stand for, however, is having reports contain inappropriate or incorrect information to justify cutting services. Maggie’s web of services is so complicated that a wrong piece of information at point A can be plugged in at point B and screw up more pressing services. The PT gave me his draft report and I had him change it to be accurate. If he can justify cutting services with correct information, I would not fight him. I do not agree with it, but I have to choose my battles.

Monday is Maggie’s IEP, (Individual Education Program) meeting. This is the school district’s mandated annual meeting to address Maggie’s educational needs and what services the school district will offer to meet those. For some parents this is a very contentious meeting. That has never been my experience and I do not expect it will be this time either. There may be some cuts here and there because the San Francisco Schools are B R O K E, but I am more interested in the program as a whole. There are no transitions this year, so I expect it will be fine.

After the school district, I have to meet with Golden Gate Regional Center (GGRC) for Maggie’s annual review there. I cannot remember the name of that document IPP – Individual program plan, I think. This addresses Maggie’s needs that are not school or therapy related. This agency has been reimbursing me for the nursing for the past couple of years. I do not anticipate any changes there either, but I do not think I will rest easy until I know that is the case. The budget crises looms large, but California is going to have to pay for Maggie one way or the other. It is cheaper and better for the state (and for Maggie) to stay at home than to live in an institution, so I doubt her care will be affected.

Because Maggie’s disabilities are so extreme, I do not have the same angst over these meetings that other parents have. Maggie’s needs are obvious and the services are in place. I do have to be vigilant that the reports are correct, though because undoing a mistake is very difficult. Agency B will rely upon incorrect or understated information about her medical needs from Agency A and the services adjusted accordingly. If it results in being offered a service we do not need, that’s easy; but more often it puts me in a position to fight to keep something she DOES need.

As you can imagine, all of this really kills the mood to celebrate her birthday. The real celebration comes when all this is complete.

This year, just for good measure, I am having my shoulder surgery the day before her birthday. I should be a barrel of laughs for Maggie.