Autism Understanding & Acceptance 2013, Day 30: Where we are now

So, what is up with Thomas now? He is turning 12 this summer, a fact that is nearly inconceivable to Rob & me. He has been a client of the BACA/under Carl Sundberg’s supervision full-time since November of 2007. We ironed out a part-time situation for Thomas to be in school and receiving ABA services, but the more we saw how he progressed with ABA, the more saw how important it was to withdraw him from school for a while to let him really blossom as much as he could with this “Cadillac of Care”. This did break our hearts a bit to take him out of public schools because we are public school people – we believe in them and support them and have many, many friends & family who teach and/or are public school administrators. God bless them all. But we simply could not ignore how much progress he was making with ABA, and made the decision to go all-out with it until insurance reduced hours or we felt he was truly ready for full inclusion.

That decision was one of the first of many in which we had to set aside what we wanted for him, and instead act on what Thomas needed.

We have just learned in the last week that Thomas’ ABA hours will be cut. Not completely, I am glad to report. As it stands today, as I write at 1:55pm on Tuesday April 30th 2013, his hours will be reduced from 32 down to 20 a week. I am this specific about the timing because we believe we’ve just caught our medical reviewer in a bit of a…um….falsehood when making the determination to reduce his hours. We’ll see what happens now that his primary care doc and the clinic take this information and run with it. We can live with a reduction in hours, and even look forward to Thomas having the opportunity to show us what he can do in the public schools. It will still undoubtedly be in what is referred to as a “self-contained classroom” with as much inclusion time as possible. What we can’t live with, regarding the reduction in hours, is the date that our insurer has randomly chosen to start the reduction: July 1, 2013. I thought the point of reducing ABA hours was to allow him access to the public school education to which he is entitled…so how does it make sense to reduce hours at exactly the time of year when the school doesn’t provide services? So, we appeal, make phone calls, take copious notes, and document, document, document. So it goes. These things come in waves, and it is one of the primary reasons why I am currently employed half-time only.

Speaking of things coming in waves…with the news of a reduction in hours, Thomas is indeed headed back to the public schools. He therefore needs an updated IEP and honestly, we are starting from scratch because he hasn’t had a full IEP in years. We’ll need to iron out what he requires to be able to benefit from a public school education, what they have to offer, and what creative ways we can work together to make this opportunity more than just glorified child care for him (remember my post about his being cute & smiley and very able to entertain himself for long periods of time?) We have confidence in our school district – I personally would not have him anywhere else. We’ve heard wonderful things about his teacher for next year. And my years working at ASK (About Special Kids – www.aboutspecialkids.org) have prepared me well to go into this Case Conference as an equal player. We will be the collaborative parents we always have been, and I do believe we will work something out for him.

And the other wave…in the midst of all this, earlier this month Thomas was finally been targeted for the Family Support Waiver in Indiana. We were put on that waiting list December 14, 2005. What are Medicaid Waivers? In a nutshell, they are the alternative to institutions. Remember Rainman, and where he lived before Charlie took him on their road trip? That’s where individuals with disabilities lived in previous generations. In fact, it used to be that once a child was diagnosed with autism, mothers were told to institutionalize their child and go have another baby to replace that one. Nice.

Coming back to waivers, they provide staffing, services and supports so that individuals with disabilities can live in their homes & communities and live as independently as possible. So this is good news. But it is mixed news for us, because with this recession and the ever-increasing numbers of people diagnosed with autism and other developmental disabilities, the programs have had to be changed drastically. So when we got on the waiting list, the services we were expecting would have allowed for a young adult Thomas to have enough supports to live in an apartment with a roommate and have staffing to help with grocery shopping, transportation, bathing, dressing, etc etc etc for the rest of his life. Now the funding will allow Rob & me to provide some “meaningful day” sorts of supports for him, but the finances will not allow Thomas to live independently. So yes, as of now, he will be living with us until both of us turn 80 or we are both gone from this world. That’s not being dramatic – those are the facts. And with the tide of cutting funding to social programs like Medicaid, this is what happens. Now I know that the recession will end and the waiver programs may change again – they certainly have completely changed once already in Thomas’ lifetime – but that’s where things stand now.

Rob & I have taken many steps already to assure Thomas will have what he needs when we are no longer here. We have never thought that the government would take care of things completely for him. It’s our responsibility and we take it. We know more about special needs trusts, guardianships, letters of intent and wills than we ever thought we’d need to. Those things are all set.

So, there it is – for now.  I have decided two things: one, there will be a bonus post tomorrow – a quick one – and two, I’m opening this up for questions. Private message me if you have a question. I will reply either personally, or if I think it is appropriate to answer as another post, I will do so. See you tomorrow.