Susan's Blog

Monday, January 7, 2013

Approaching Autism Adulthood: What to do first

I was talking to an autism mom the other day while our sons practiced on their Special Olympics basketball team, when I realized I had three other parents waiting to talk to me. Suddenly I’m a wise woman simply because my autistic son is now an adult. We have passed through the Inferno gate of Adult Services but unlike Dante’s, we have not abandoned hope.

But hope was in short supply that Saturday morning. Hot anxiety rose from these parents like steam from a kettle. They rifled through their bags and pockets for something to write on, to take down what I was saying. Every few sentences, one of them would stop me and say, “Wait, what does that mean?’ And every so often, they would stop writing, stare out at the crowded gym and say, “Oh, god, this is so overwhelming. I don’t even know what to do next.”

I could tell her what to do next: everything. Even though her son is around eight, she needed to be planning for his future: job, housing, caregivers. I don’t just mean creating a Special Needs Trust; I mean learning about all the adult services and resources that are available and how to access them.

Just speaking those words makes me go bleary and looking for my bed. But as many autism parents learn early, sleep is something you learn to do without. From the typical sleepless nights of infancy, to the more autism-related sleep disorders that so often develop, to the worry, if you have a child with autism, you think of sleep as a precious gift, not an entitlement.

So I knew these friends of mine would understand it when I told them that in adulthood, there is only one entitlement for our guys: Day Habilitation, also known as DayHab or what it often is, Adult Daycare. The other thing they needed to know is that all roads pretty much lead to Medicaid.

This means you need to know about DayHabs and you need to know about Medicaid. The following is my understanding of Medicaid and how it is used in Massachusetts. Take it with a grain of salt, some of the details are probably incorrect. But if you understand the overall gestalt of what I’m saying, you have mastered the first lesson in Autism Adulthood 101. For the second lesson, you will have to ask specific questions about what you’ve just learned, to adjust my errors, my take on it. So leave that for the second lesson and just learn the first today:

Medicaid dollars are used differently state by state, but by and large they provide services either directly, as in the case of DayHabs which bill to Medicaid as therapeutic programs, or indirectly, as in the case of waivers channeled through the state agencies. In Massachusetts, the waiver money is harder to get, because the state agencies are all competing with one another for this pot of money that goes to the Executive Office of Health and Human Services. Whereas with the DayHabs themselves, the funding is more directly accessed, from program to money source. So families have to choose a DayHab, but they don’t get to choose which office of EOHHS they are assigned to. And they don’t get any say in how much funding their child receives — if any.

We have to assume that getting funding is going to be a battle. For one thing, there is the increase in numbers: while Nat’s peer group with autism numbered 2 in 10,000 just a decade before him, the two decades after him have seen the number increase to around 1 in 100. So, as hard as it was for Nat to get his funding, it is going to be exponentially harder for the up-and-coming families because there are so many more kids in need! For another thing, the budget is tighter. Some in the Federal Government want to cut or reduce the Medicaid program, strained as it already is. This is largely conservative Republicans, who believe that we autism families, veterans, elderly, homeless families, mental health patients — can all do without. I am so worried about that. I don’t see how this would work. I think it means mostly that families would care for their adult children until they died. Then if they have not been able to find or fund caregivers, the adult child is handled by the state — which means costly institutionalizing. Or worse — living on the streets. But some people have had one experience with someone living off the government who didn’t deserve it and that’s enough to sour them on these programs.

Others, largely Democrats, want to raise revenue to keep Medicaid going. I don’t know if taxpayers who don’t understand the plight of the Medicaid-dependent will feel about that. “Take care of your own,” some say. We do. We try. See above, sleepless nights. Broken families, traumatized siblings, depleted bank accounts. (And don’t you accuse me of bad-mouthing people with autism. I am bad-mouthing the difficulty of doing right by them with so little guidance.)

There will have to be compromises on both sides in order to come out with anything the two agree on. And this means there will likely be less for families with autism.

So parents of younger kids have to figure out now what they can do (and can’t do). They have to plan, like we did, for the worst-case scenario of no funding, and of only some funding. They have to understand that they must advocate with the state agencies while realizing that is the tightest place to go. So just like in an IEP, you go in knowing what are your non-negotiables and what you can live without. Nat needed good caregivers so that was our non-negotiable. Then I would take on the DayHab. I would do what I could to make his days worthwhile, but I was determined that he have his own place to live, with roommates and oversight. I had already seen how he fell apart living here, and the toll it took on my family, Ben especially. I knew that we would not live forever, and I wanted him to be with roommates, and we with other families, to have some kind of net underneath him.

What can parents of non-adults with autism do right now?

1) Find out who your Department of Developmental Services liaison is and make them know you and your kid. Google the number, find out, call.

2) Go to and find DayHabs you want to visit. Get aquainted with what they are like.

3) Learn about Medicaid-funded programs like Adult Family Care (AFC)

4) Get your kid on Section 8 (subsidized housing) waiting lists.

5) Do what those parents did with me: find each other and exchange knowledge. Parents are pretty much the only ones out there who will be glad to help you.

6) Acknowledge that you are going to feel overwhelmed by even just one of these items. Feel it, but then dive in a little bit again.

Rinse and Repeat.




Thank you for talking about this. Keep talking, please. Every state has a different scenario of hoops to jump through. Maine is pretty dismal right now. As in an advocate said, “the landscape is pretty bleak.” And yes, it is. There are no dayhab services unless the person is being harmed, harming others and homeless. What a short-sighted set of prerequisites for figuring out whether someone should receive services.

— added by Dixie Redmond on Monday, January 7, 2013 at 3:54 pm

Why did he fall apart living in his own home? My child would fall apart if I sent him off to live with a stranger so I wouldn’t want the housing.

Are there programs if you want the child to have a day job but not live in Section 8 housing? Do you know how that works for families?

— added by curious on Monday, January 7, 2013 at 4:43 pm

We were just not structured enough for him and we did not know how to help him with his increasing anxiety over disorder. I think that our own anxiety about him rubbed off on him and made him more anxious. It was a horrible time.

Families can also apply for Family Support in some states (Massachusetts is one) but it is one of those budget items that is often hit first. That being said, I do know families for whom once their son with autism aged out of school, there was funding for Wraparound services so that they could successfully keep him at home. One of these moms, however, now wants him to live in his own place with support (like Nat) and now that her son is 23 she cannot get him that. Residential support is the hardest to come by here in Massachusetts.

Also, in terms of living with strangers, it isn’t the way it sounds. We play a role in hiring staff, they have training before they are left to manage the guys, and even though they may not be the highest educated of people, they are often excellent caregivers for Nat. And he had practice living away from us by going to a sleep away camp for autism for a week each summer starting at 17. There are ways to prepare a teen for independent living, it need not be traumatic for any of you, or tragic.

— added by Susan Senator on Monday, January 7, 2013 at 6:23 pm

Susan. I’m grateful for this post. I was actually thinking of consulting the Autism Swami Mommy for advice on how to get started in this planning phase for my 13 y/o. The six step checklist is just what I needed today. Thank you.

— added by kathleen on Monday, January 7, 2013 at 8:23 pm

Nice post Susan, I would add that parents of younger kids, in addition to getting to know their DDS case worker, establish a relationship with their State reps and Senators and begin advocating for adult services, make these folks aware of the needs that will be presenting in a few short years. Your Federal Legislators also need to hear from you, PUT A FACE ON AUTISM, let these folks know that you lose sleep worrying about your child’s future. Visit their offices, bring your child with you, so when a vote comes up concerning medicaid and funding you come to their mind. Get involved with AFAM- Advocates for Autism of Massachusetts, this group works to insure that the needs of those with ASD are met. It’s hard when you are fighting with the school for services for ” Advocacy “does not end with a signed IEP. Save the date April 11th and be at the State House for Autism Awareness and Acceptance Day.

— added by Susan Loring on Tuesday, January 8, 2013 at 7:09 am

This is a great post—that first twenty years will fly by! Our son is 28, tests at an IQ of 70 or below (mostly below) was on disability, will never receive Medicaid waiver services unless, as his one-time case worker put it: “You and your husband are dead, and he’s living under a bridge, eating his own poo.” That’s how you get on the waiver in our state!

Son mostly manages to live in his own, in a Sec. 8 apt., gets a small amount of funding for the state that covers someone else to come by once a week to help him with apt., getting groceries for about two hours a week. Gets a lot of support from us, his parents. He works full time, makes barely above minimum wage, but enough to cut off disability payments. It is VERY hard.

Our goal is for him to be as independent as possible. But the choices for him are zero to almost nil…so we are working hard in our city. The housing authority has project vouchers that will allow our kids to leapfrog the 5,000+ waiting list for subsidized housing. We are searching for grants to supply services, are working with a guy who’s got a great computer program that will help in prompting and care giving and now, thanks so much to you, Susan, have the guys from calling on our community college! So, I am fired up…things will be better for the upcoming kids, thanks to the efforts and hard work of parents.

— added by Sue Lowery on Tuesday, January 8, 2013 at 10:46 am

Thanks for this Susan. When my husband looks at me like I’m crazy for planning my nine-year-old’s future I’ll refer him here. Already bookmarked!

— added by kim mccafferty on Wednesday, January 9, 2013 at 11:31 am

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