Akila does not qualify for any services like Medical Assistance or PCA's. We had looked into TEFRA, which is a parent pay sliding fee scale for kids with disabilities several years ago, but it was way too expensive. We recently figured out that must have been when we were using our tax return from a year when I had more employment. It now is much more affordable.
I spent a few weeks on the application, which is no joke. You practically need a college degree to fill it out. I got it off in the mail last week and I am sure it will take months to get finalized. I am very hopeful that we will qualify for some PCA services once she gets on MA. I know there has been significant cuts in that program recently. Our Pediatrician thinks that with the Level 1 behaviors, it should be no problem and she is on board to help with paperwork.
But after last week, I can't wait any longer. I have hired one of my old students (Ruth) to come over tonight to help with Akila. Last night is when Michael's string of late nights at work starts and I need help. I can't tell you how relieved I already feel at 8:00 am knowing that I will have help tonight. Ruth has babysat over the last several years and is familiar with us all, so it will be really nice to have her over to help.
Yesterday, Akila basically spent the entire day picking her skin. I went to an honor roll ceremony at school in the afternoon (the other 3 kids all made the honor roll). Akila sat by me, and picked on her arms the entire time. I connected briefly with her aide at the end of the day and she said Akila was distracted and picking her skin all day. I dropped her off at Juli's house before dance. She picked her skin the entire 40 minutes at Juli's house, and then off and on throughout dance class. She always gets in modes where she is more obsessive about her skin picking.
Monday night, we went straight from the after school program to a basketball game in Burnsville for Imani and Hezekiah. Akila spent the first part of the game by the opposing teams bench, as she is always intrigued by the other team, and usually cheers them on even. Lovely. Well, when she came back by us, she had a cell phone. She does not have a cell phone. So I got to walk up and down the aisle asking if it was any one's. It wasn't. I turned it on and recognized some of the names in the phone as kids in Akila's school.
She of course threw quite a fit in the gym in the middle of the game and I had to take her into the hall. It took quite awhile to settle her down. The phone got back to the rightful owner the next day. Then on Tuesday, she came home wearing some tennis shoes that were not hers. Her stealing is so cyclical, like most of her behaviors. I just emailed her teacher and special ed teacher and asked them to deal with her about the thefts. We need to get on top of it before it gets too out of control.
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4 comments:
I hope you get your PCA. I never thought of applying for one. I will have to look into it!
The changes to the PCA program limit the time given for behavior to 30 minutes each for a total of 90 minutes per day if the child qualifies in all 3 levels. If the child does not have ADL deficits (activities of daily living) that is all the PCA time they will receive if you are applying for straight PCA and not a waiver program. We are switching our kids' services to a CADI waiver instead of straight PCA but we are still losing a lot of PCA time.
And I agree 100% about the paperwork involved. I consider myself a fairly intelligent and capable person but it overwhelmed me and took me months to complete.
Good luck! Some PCA time is better than none at all! ~Kari
talk to me if you get on MA and get approved for PCA services. last year, the state of MN had a program where you can use yourself as the agency instead of going through a middle man where they give you your own allowance to hire your own PCA and it is a better deal (but we couldn't do that b/c we had not adopted at that point. - I can try to look up the info for you - i might have the contact info any way.)
What is it with the skin picking?? My daughter does that, too, and it's very unsightly and disturbing to her classmates. If it's not her arms till they bleed, it's her cuticles till they bleed or her pierced ears. I've finally convinced her to play with her hair instead. Teachers complain about that, too, but I figure it's the lesser of two evils. Is it an OCD thing? Or a desire for the pain sensation? I get the fidget thing - I do it, too, but I don't make myself bleed. Sigh.. just one more fun thing.
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