Fireside Chat With The Autism Mom: Life After The Autism Waiver
My son, Evan, is 21. We were out of the country immediately after his graduation from high school which was an incredible experience. I have to tell you, Israel is DA BOMB for autism services. There are services for babies, little kids, big kids and adults. TONS OF SERVICES! So many services that they apologize to you for not being able to get your kid into a group home (if they so choose) for 6 months to a year.
SERIOUSLY??? In the US, you're lucky to have a multi-year wait much less the blink of an eye that is a year. We really appreciated the services there but...all good things much come to an end and we returned last March for various reasons.
I got Evan back into therapy again at the John Merck Center here in Pittsburgh that specializes in autism spectrum disorders and their treatment. Then I got him back with his case management service that helps provide various services he needs.
Unfortunately, the state cannot provide adequate services to everyone who needs them. You know the drill...there are other children more severe than your child, yada yada yada. So we got limited funding which would get him a community aide for a few hours a week and at least get him out of the house and into the community. This was especially important since I was having seizures (and still am) and lost my license last September.
We live in a pretty happening area but you need wheels to MAKE it happen. It's kind of disappointing to me to miss out on it all (although since I am agoraphobic it's really not as bad as I make it sound - I'm all "big dog on the porch" though, to talk about it!)
Evan feels so isolated because in Israel we were in Jerusalem and it was like paradise. He figured out the bus system and with his monthly bus card, he could go anywhere the buses or light rail went, including school which made him so much more independent. He knew the bus system so well, when stranded at the mall by a visiting friend, he called and told me he had it covered and walked in the door 20 minutes later. He could shop on his own, buy iced coffee (an Israeli treat and very unlike the US version) and generally do the weekly shopping if asked and given the credit card.
He was Mr. Jerusalem and absolutely blossomed there - including becoming fluent in Hebrew!
But now we're home and there aren't any buses and so he does feel kind of trapped. Well, I was informed by our case manager that some full waiver slots were coming open. What that would mean is that Evan would have $30k to use for aides, supported work situations, camps, programs and other goodies we can't even begin to imagine. When we had the original money for the aide for a few hours a week, we couldn't even find an organization that could provide a local aide or even an aide close to Evan's age.
We had used the services before Israel and basically he would go out for dinner and an evening at Barnes and Noble with a kid who probably couldn't get a better job. That discouraged us this time too since we wanted someone local to keep him in touch with his new community but also someone closer to his own age (they sent a grandma once) who could be more of a buddy and not so obviously an aide.
Once I heard full waiver slots were open, I started my campaign to get them for my son. I called everyone I could think of, including the county social worker who would hold the determination conference, and begged. I talked about my epilepsy and how my inability to drive really limited Evan's life. I knew he was on the list but I didn't know if he'd make the cut. After all, they were reviewing ALL the individuals, some older and some younger, and some with greater need. It was a crapshoot whether we'd get funding or not but I made sure I brought his case before the right people and fought the good fight.
And...he was the first to receive waiver funding this year. What this means is that he has this funding for life. FOR LIFE! Unless we move, of course, which I don't think we would even consider unless we went back to Israel but I don't see that happening except for vacations.
He has 25 hours a week of aides who come to take him out, play basketball and do artwork with him. It's overwhelming actually to go from zero to 100 mph in such a short time period but I can see, while he is tired and a bit overwhelmed, he is happy. He gets to go to baseball practice and play on another league he wanted to join. The girls who are his aides are his age and they play basketball and catch and color with him when he wants to. They take him shopping with them and out to lunch. He is 5th on a waiting list now for supported employment. His psychiatrist and I think this is a great option right now as he prepares for regular employment (if he wants...but its his choice.)
Right now his days are filled which is exactly what I wanted for him. And my heart is filled for him. His world has opened and it's his for the taking. He arranges what he and his aides will do, he makes calls to schedule things and actually used the internet to find the local library's address the other day so he could go there.
I am so proud of him and glad that people listened to me with compassion for him. That's what we need more of. I thank those people who made this possible. I actually called and thanked the county social worker who I doubt gets much thanks for the hard decisions she has to make. But we thank her for the difficult job she does every day. It isn't easy who gets services and who doesn't.
And every time I see the smile on my kid's face after his aides are gone for the day, I thank her even more.
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