Wednesday, June 6, 2012

Feeling better? Good, that means we can smack you around more.

Usually, meetings with our Regional Center worker are helpful and positive. Our worker comes to the house and the two of us plan Queen Teen's year. What activities would she enjoy? What are her current challenges and what kinds of support does she need? What kinds of support do I need to continue caring for her? What do I dream for her future and how can the Regional Center support those dreams? What does she dream of doing when she's grown up and where would she like to live?

But this time, the meeting was far from positive. 

It began in the usual way; we discussed Queen Teen's current issues and her changing medical status and then talked about some of the challenges she's experienced at school. We went over her past I.F.S.P. (individualized family service plan. like an IEP, but broader.) and updated information. I signed permission forms for the Regional Center to be able to talk with Queen Teen's doctors and other service providers. And then, I told him that that Queen Teen was approved for Protective Supervision from In-Home Support Services.

"She was?" he said with raised eyebrows.

"Yes. I applied like you suggested and she was approved," I said.

"Oh. That might be a problem."


"Because there's a new ruling about Protective Supervision that I just found out about this morning. If you are getting Protective Supervision hours, you can't get respite."


"I'm sorry. I just found out about it. You can't have respite and Protective Supervision at the same time. The State considers it a type of respite. I'm sorry."

I felt the air leave my body as I slumped back into my chair. "How is Protective Supervision even remotely the same as respite? I'm working. I'm taking care of her around the clock. We needed more hours because her needs have increased. This isn't respite. Respite is the only time I get a break."

"I know, and I agree. But the State doesn't agree with us. The new ruling states if you have Protective Supervision then you can hire someone else to provide respite."

"Who am I going to hire? I haven't been able to find anyone to watch Queen Teen after school. Who is going to watch her other than our highly trained respite worker?"

"I'm sorry."

"So what the hell is the State of California going to do with all the parents and caregivers who end up having nervous breakdowns because they don't get breaks anymore?"

He said he was sorry again. Then he told me about more cuts to services (which are so annoying and stupid I won't bother going into) and informed me that Queen Teen can never live in a group home because she isn't ambulatory. Her choice is to live with me forever, or in a nursing home. 

Thanks to massive budget cuts, gone are the days of the friendly and supportive I.F.S.P. Instead, the Regional Center is cutting costs by forcing more of the care and support of their clients onto families and other agencies, which are also cutting care. Basically, Queen Teen and I are screwed. As she becomes more medically fragile her daily care and support will land primarily on me. 

What are kids without a mom like me going to do when all of their services are cut?

I was furious and I know our worker was embarrassed; he left as quickly as he could. After pouring myself a glass of Pinot, I went outside into the yard and cried in my vegetable garden. No respite? No support? No days off... ever? I am not lucky enough to have a large and supportive family to help out, nor are many of our friends able to step in and watch Queen Teen for a few hours. I am exhausted, terrified about the future, and overwhelmed by Queen Teen's increasing needs, and now I am totally fucking alone. 

That's how I felt for a few days. Then I did some research, and the more I researched the ruling (which I found on-line) and dug deeper into some of the other cuts our worker talked about, as well as the "never live in a group home" statement, I realized that the Regional Center is being reactionary. Yes, the cuts are bad, and I understand that they are operating on a budget that will barely pay their electrical bill, but walking into my home and telling me everything Queen Teen can't have or will never have is unacceptable. It's called an Individualized Family Service Plan for a reason: individualized. There is no way I'm giving up all the supports this family needs to help Queen Teen thrive without a fight. 

But damn, these last three months have left me bruised and emotionally limping. Do I really have to keep fighting like this for the rest of her life?


Rick said...

yep, its been rough. but we have survived other battles, we will win this one too.

x-ray iris said...

I just want to say - (long pause)
We don't know one another IRL but I admire you very much and I am sending you the best thoughts for ways through your difficulties.