Susan's Blog

Friday, January 8, 2016

Don’t Lean In, Reach Up

Tolstoy did not say, “All happy parents are alike. All unhappy parents are unhappy in their own way.” But if he had known the autism parents I know, he might have.  I believe that this unhappiness is not a bad thing, either, because it is the energy that fuels the changes in their situation — and then, the creativity. I have not done a formal study of this, I’m not a social scientist, but I have written a book and interviewed many autism parents. And I have observed, by and large, that it is the desperate autism parent that can be the most effective autism parent. Of course this is likely true for any disability. The Down Syndrome families, the CP families, they are no shrinking violets. But autism is the disability I know, and that is the disability I write about.

Let me reframe a bit by changing the designation “unhappy.” Disability does not equal unhappy, no way. But there are many autism families and autistics themselves who want something different, who want productive lives. The model available to guys like my son Nat, who is autistic and communicates outwardly only sometimes — he doesn’t care for that kind of activity, he prefers his own thoughts as well as direct physical movement — the day time models are largely adult babysitting. This is because the funding comes from Medicaid, who is like your sweet generous grandma, chock full of desire to give and help, but limited by her anachronistic knowledge of the world. My Grandma Esther Senator Gross, God bless her, with her ubiquitous huge white leather gold studded purse, full of her good silverware (“it shouldn’t get stolen when I’m away”), chocolate candies as big as a fist, tissues, and rolls salvaged from the Early Bird special would give you the shirt from her bag. Stuff that doesn’t really fit with your life so far, but you are still grateful. Without Grandma’s special treats, you’d have nothing but your entitlements from your parents; in my dad’s words, “You are entitled to three meals a day, college, and a wedding.” Dad was the Federal Government in my family. Once the wedding was over and paid for, I was supposedly on my own. Luckily my Dad is an ultra-liberal institution and he believes in supporting many of my endeavors in one way or another. (If you’re not reading this with a smile, you’re doing it wrong.)

Medicaid, however, began as medical insurance, but now is being used for all sorts of programs that do not fit under that category. And yet these programs are bound by Medicaid’s rules: its funds must be used for therapeutic purposes. So Long Term Support Services like Day Habilitations, are an entitlement for those who qualify for SSI (Supplemental Support Income) If a state does not have Medicaid Home and Community Based Waivers available, (and most do, but the funding is very tight), states must offer some kind of non-institutional setting for people with longterm disabilities like autism. But these non-Waiver settings are often not so great. They will say they are therapeutic, but this may consist of a group sitting around a table doing puzzles together (“social skill-building), sitting on a physio ball (gross motor exercise) or coloring (“small motor development”).

So: to generalize in non-expert layperson terms, it is hard to get Waiver money, which pays for job coaches and self-determined, creative day programs with nice small staff-to-client ratios. So if you don’t get Waiver money at age 22, and you don’t have a job you can keep after you graduate, you will likely go to a day hab (not a Waiver-based day program). What we want is more Waiver money, or for day habs to be offer more options for our guys, higher level pursuits. Why can’t Medicaid day hab (non Waiver) money be used to pay for continuing education or job supports of some sort? Or simply job-training of some sort? But what I hear, they cannot because of the Medicaid “rules.”

My knowledge ends here, but that may be enough. It is likely enough just to fuel your interest as an autism parent. If you think your school system has provided sub-par educational supports for your child — and that’s with an actual federal law mandating such — then you will feel kicked in the face when you go and visit day habs in your area (if you don’t get Waiver money).

The autism family whose guy has gone through Early Intervention, Pre-K- 12, through 22, will not be satisfied with the offerings in adulthood. The modern middle class general population autism parent who has discovered supported art, drama, math tutors, private specialists and therapies, social groups, Special Olympics, Challenger T Ball, Surfers Healing, etc., or some combination, or even one of these auxillary activities will want their guy to go to college, or take music classes, or work in an office, a store, a bakery, a car wash, a hospital — you name it, our guys will likely be able to do it with training, support, and rachmunis, (Yiddish, which to me means, from the Definithing website: “That which causes one to correct a wrong that is causing grief or pain to another.”) Compassion, doing the right thing. NOT PITY. Just — getting your act together and being a good person, Goddamitt.

The only way it is going to happen is when the great wave of autism families and autistics themselves question the authorities and say, “Hmm. There has to be something more. Let me ask my lawyer…” Just like you did during the school years. Or better yet, call your state rep or state senator and tell them that another Senator told you to reach higher.  You deserve more than a wrapped roll from the Early Bird Special.




Great blog! I had never thought about this issue from the perspective you just showed me. My son is older, 31, never had all the early intervention and so at 22, when he wasn’t getting very much more than he got before, it was not the rude awakening our up and coming parents of adults are going to face. This could cause a tsunami of pressure on legislature to change! Something to look forward to.

— added by Sue Lowery on Friday, January 8, 2016 at 11:37 am

With two 12 year old boys who are pretty severely impacted by autism – this.. this is my dream. For us to ask for more and to get it. I actually love the school programs and the home therapists we have in our lives. But I sometimes wonder what we are building up to. What’s next??? My particular brand of autism coping has been to just keep my nose down and focus on the problems of today. But, 22 is coming. I gotta step up.

— added by Suzette on Friday, January 8, 2016 at 8:30 pm

My severely autistic son has already informed me he wishes to go to College like “Steve” Blues Clues. The College program (there is one at a few of them for Dev students) says he must have full verbal skills.

He has the academics and will definitely have them by 21… verbal I can’t be certain. But… he will go… I’ll leave it to them to prove me he doesn’t qualify.

There’s nothing here for adult programs. All the “jobs” are being taken away because “that’s mean and they should be paid full wages”… they were greenhouses where they made enough money selling plants at Xmas and the spring, for some activities and to keep it running and they didn’t work long hours. Something to do, somewhere to go, people to see… safe. So, now they want “daycare”… not going to happen.

I have no idea what we’re going to do post 21…

— added by farmwifetwo on Saturday, January 9, 2016 at 8:17 am

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