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.