Dakotah doesn’t qualify for SSI (disability checks) because I “make too much” – that’s a real joke since I live less than paycheck to paycheck. As I said previously, she’s been on the Medwaiver waiting list for 9 years. I go to Tallahassee every March with her for Developmental Disabilities Awareness Day at the Capital and talk to Senators and Legislators. Senator Nan Rich is furious every year that we see her and tell her that Dakotah is still on the waiting list. She always has her aide call the Agency for Persons with Disabilities. Somehow they miraculously find some money to buy her a one-time order of diapers. My insurance doesn’t cover diapers and they don’t cover respite. I have to pay someone to watch Dakotah (difficult when I don’t even have money to pay bills – a real catch 22) so I can go to class and that’s if I can find someone that is able to care for her or willing to care for her. It’s so hard Angela but I can’t give up – I’m not a quitter.
I don’t receive child support for her. I don’t receive any nursing or respite care. I do think that my insurance will be covering a nurse to help me with her during her recovery but this won’t last long and I have to be in the home at all times so I’m not able to leave and go back to work. People see her in her wheelchair and think that she gets it all when in reality she gets nothing – well, except for stares from others.
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