Monday, January 16, 2012

Not just disabled, also broke.

I owe you a big write up of how I was filled with dread going in to Amy's annual planning meeting, and how great it went, and great this year looked, but that is being overshadowed right now.

 I won't dance around it -- the last eight months with Amy have taken a major toll on our finances, and we can't keep doing it.

When my mom died, my aunt alerted us that Amy was likely eligble for survivorship benefits.  We jumped through hoops, made countless phone calls, paid for express birth certificates.  Dad travelled to Amy to attend her SSI phone appointment with her.

She was approved, and there was light at then end of the tunnel.  Of the tiny amount of money my mom ever had, she spent so much of it on Amy -- cell phone, cable, clothes, hair cuts, medical copays, keeping up the wheelchair van, insuring the van, bus rides, special rec and other social activities -- and the survivorship benefit was going to let Amy maintain that standard of living with the help of my mom.

I felt such intense relief.

Today, I learned that the law in Illinois says that her home will be getting the surviorship beneift, since medicaid pays for the CILA.

Amy is allowed to keep fifty dollars a month total, from both her regular SSI and her survivorship benefit, and from that she is expected to pay all her expenses beyond the basic room and board and physical care that the house agency provides.  That covers her cell phone (which is a necessity given that her house will only allow her to use the house phone for 15 minutes a day, and because she can't open her bedroom door herself, and so routinely has to call the landline in her house to say HEY, I'm locked in my room and can't get out).

This just doesn't make any sense to me.  Without the funds, Amy can't do most of the things we discussed in her planning meeting -- special rec activities and socialization, attending more events like Speak Up Speak Out.  She is relegated to sitting in her room waiting out the days.

We could keep giving her the money at the expense of ourselves.  We'd like to have kids... we'd like to pay our student loans off... we'd like to stay up on our credit card.  By taking these funds away from Amy, the state is creating a negative dynamic between Amy and her sisters who will struggle to compensate.  Do I resent that I have to choose between good financial decisions for myself and taking care of Amy?  Oh yes.  Thanks, Illinois, you low-ranking piece of crap.

 I'm a work, and I am FREAKING OUT.  I'm hoping by writing this, I'll manage to pull the tears back in and carry on.  Right.


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