Ben is a junior in high school, an accomplished artist, both in graphic arts and in pottery. He loves to hate the frustrations of bowling without bumpers, he adores his iPad 4--especially its movie feature, and this year he fell in love with Despicable Me I and II and the Minions that go with it.
What was hard about the process, apart from the tiresome felling running a metaphorical marathon in chilled molasses, were the meetings that involved Ben. On four different occasions we met with persons from the county long-term disability intake people (IMAGINE!), the court visitor, and the social security administration, essentially to establish what Ben CANNOT do, I understand the deficit model is a vehicle for establishing needs and subsequent services, but I regret Ben having to listen to a long line of questioning which one of necessity must answer as if it were the worst day of Ben's life in order to establish a life-time service level that will adequately meet his needs, even on the worst day of his life.
Looking back, I should have brought ear buds and iPad (with movie + games) to the four intake interviews, so he would not have to sit and listen to litany after litany of what he cannot adequately do. I caught up to that fact at the last interview with the court visitor.
At each interview, he was required to be present, and since they were in close succession during the fall, I had a significant amount of emotional fall out to deal with from Ben after each process.
Ben is generally "happy" exactly in the sense that we, the public, like to think about Down syndrome happiness. However, that general 'happiness' is surface and good social skills combined. It is difficult to have Down syndrome and know you are different, and to hear the deficit model applied to who you are and what you can do and how you are when you are at your very worst behavior, at your least competent moment, and to hear it over and over again in 2 to 3 hour long meetings, discussed every time by your mom and two or three other professionals, some of whom you know from school can be crushing.
That being lamented, we succeeded in securing long term care Medicaid services for Ben, both in terms of respite care after school and also in terms of day programs for the summer and for when Ben is done with school. Many triumphs came out of the August - December seemingly endless process of wading through state and federal services for Ben long term. Ben was a Level 6 (the highest in the state) in terms of his needs assessment, and he is awarded $36,000 of respite, day program, and behavioral health services per year towards meeting his needs.
Instead of me spending out of pocket cash to secure after school services for Ben so I can finish up at work, he will now be in Out and About as soon as their waiting list dwindles down, and that group takes persons with intellectual disabilities 'out and about' in the afternoons after school, to swimming, art, theatre, and bowling.
He will also be in FRIENDS OF BROOMFIELD during the summer for a 9-3 day program where he can take Access-a-Ride (public bus for special needs) to the day program, so he will get a sense of independence in going on his own and coming home on his own.
At any rate, the end of a long semester, and I have a significant part of the year of turning 18 moving in the right direction.
I look to 2015 to
1. finalize his SSI and actually getting that income for him
2. getting a court date and finishing my case to get guardianship for him
3. getting off the waitlist for Out and About and having those neat afternoon experiences for him after school
4. getting a comprehensive eval of Ben and the autistic spectrum issues.
Merry Christmas :)
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