Monday, April 20, 2009

overwhelmed by entitlements

I just have not been able to write lately. I have sat down so many times to update my blog and everything wants to come out at once-- suddenly the pipelines are blocked. I think my synapses are fried. I had an interview with IHSS (In Home Support Services, part of MediCal, I think? Such a big agency I just have not taken the time yet to learn the system). Any way, they sent over this very lovely young social worker whose job it is to determine whether our family needs additional resources to care for our daughter at home. She began with a question that just froze me:

What is extraordinary about caring for a child like Emma who has Rett Syndrome? 

At first, I could not think of anything, but as she began asking more specific questions, it began to seem like everything. And so much is invisible. I am not complaining here but as I have gone through my days since then, I have noticed how much of my conscious time is committed to monitoring my girl. ANd monitoring those who monitor me, monitoring her. My new thought is this. There are several ways one could find out that do not involve full time case management. Given her genetic test and diagnosis, you could look it up. Or, the best way to get a sense of what Emma needs help with is this experiment: tape your mouth shut, then tape your thumbs together. Now go through your day. For as long as you can. When you want to bang your head and scream, you can stop the experiment. Then remember: she can't. Nor can we. 

Here is what I have figured out: for school, we have to answer yes to as much as we can, otherwise they will consider her mentally retarded and treat her as untrainable. For MediCal and Regional Center, we have to answer no to everything otherwise they will consider her highly functioning and reduce as much support as they can. And everything we say is true.

Here is my current worry list, maybe just to download it will clear my mental agenda: 
  • Emma needs: a new chair, new leg braces, a lift for the van. That means a huge logistical nightmare with Kaiser, MediCAL and Regional Center. If you read my post about the potty chair, you might understand why this drives me literally to tears. 
  • We are traveling by plane this summer to the farm to see family, and I have to arrange wheel chair, changing planes, and getting liquid food supplements through TSA before we go. That is end of June, so I am late getting started. 
  • Emma's trazadone is not working so well, and we need to switch meds. This requires a neurology appointment and careful coordination so we are not switching mid trip (above) should I start now or wait. She is waking up every day at 4AM- I wish we could start now...
  • She needs new clothes. This is a major ordeal. I need to plan a weekend day when I can have a babysitter for her sisters so her dad and I can go with her to the mall-- it takes two now. 
  • I need a lift for the van. 80 lbs is past my limit.'
  • We need to go to the mobility dealer and see what our options are. Crap- our van has like 120,000 miles on it. Do we need a new van too? How are we going to do all this. 
  • we have an appointment for the new chair fitting on May fifth. I have to put in for a day off. Husband too. Oh my gosh, will we have a new chair for the trip? AUGH- we have to rent a full size van -- oh, it won't have a lift. I wonder if she will fit her carseat still. 
  • we need a new ramp in the back yard, it is too steep and she just fell down it. 
  • she needs a ramp and deck around her make a wish tub.. we can't lift her in anymore. 
So it is the little things, feeding, changing, reading, playing, hanging out, watching for seizures, etc. But also the big things. 

And frankly, who has time to answer ten pages of questions about what she can and can't do? From three different case managers at three different agencies. AND-- her doctors and teachers also have to respond to the same inquisition. 

We are so afraid of fraud that we are spending more on fraud prevention than on people with disabilities, I fear.