Susan's Blog

Tuesday, February 18, 2014

Autism Mommy Swami: Planning Ahead for Housing

Dear Autism Mommy Swami:

How do you get started on finding a place for your adult child to live? How do you begin to feel comfortable that he will be treated well? Is this covered by Medicaid? My son is only 11 but I know we will have to be making these decision and am wondering how early we have to start looking.

Is your son still taking medication for anger issues?  Is this a life-long issue?

Thank you,

Thinking Ahead Mom

Dear Thinking Ahead Mom:

1) Regarding an adult child’s housing, your best bet is to apply to your Department of Developmental Services now and see if you can get him in the system for funding. This is usually called Waiver Funding. So if your child is eligible for DDS prior to 22, he stands a better chance of getting the funds for housing and staff post 22. Call the DDS about support services now, even though he’s still at home.
2) Start saving money, whatever you can put away, for some sort of housing for him, but do not put it in his name. Consult a Special Needs Attorney to find out the best, legal way to save for a special needs child.
3) Be sure he is on SSI the moment he turns 18. Qualifying for SSI at 18 I believe will then qualify him for Medicaid, which does have programs that support people like my son, but it is different in every state.  But the first step is go for SSI when he is 18.
4) As soon as he is 18, get him on the waiting list for Section 8 housing. You can apply for that in your town’s Housing Authority. There’s the national list and there are also local lists. Section 8 is a Federal program that offers vouchers for affordable housing (very very low income). It is a very long waiting list but he should be on it starting at 18.

As far as medication, Nat no longer has anger issues. We are bringing him down from Risperadone, weaning him from it. By age 18 he had learned how to express his frustrations, and he also understood more about the world. 11 was a tough age for Nat. Things got better once we had him start Special Olympics, though. It was a good way to socialize him.

I don’t think it is helpful for us to think anything will last forever in our guys! They grow and develop and learn. Stay optimistic!

Hope this helps!Love,



They do continue to develop and learn, long after school age passes, sometimes that’s the best time. Getting through adolescence with all of the ensuing hormone swings also helps. Never say never for anyone:)

— added by Michele on Tuesday, February 18, 2014 at 7:04 pm

Thank you, dear! 🙂

— added by Susan Senator on Tuesday, February 18, 2014 at 7:38 pm

Justin turns 11 this spring, and I’m just beginning to educate myself about housing. Thanks for this, will be using your advice down the road!

— added by kim mccafferty on Wednesday, February 19, 2014 at 2:40 pm

I strongly urge you to speak with other parents – states are continually exploring new funding mechanisms, and we have seen several instances of parents joining to buy a house 9or condo, or whatever) and then securing any supports after the physical site is purchased… several advantages: you are not stuck waiting for the next huge allocation of funds needed for a new residence, you get to know who your son will be living with, your son has the advantage of “associational support” from the other parents, and, overall, you get a LOT more control over the process.

Along those lines, btw, if you haven’t contact your local Parent-to-Parent group, do so. You need the information they’re privy to –

In the meantime, put your child on EVERY waiting list – if something opens up before you, or he, is ready you can always turn it down.

— added by VMGillen on Friday, February 21, 2014 at 1:11 pm

Terrific advice, thank you!!

— added by Susan Senator on Friday, February 21, 2014 at 2:23 pm

Here’s my two cents: you will probably need help and guidance with Medicaid and SSi if you are going to file for these benefits. Don’t believe it when you’re told to “go down and sign him (her) up for Medicaid.” Gosh, I wish it was that easy and it took me MONTHS to get these benefits for my son. I called a rep from our local mental health center who helped me with all of it but (she actually did most of the work). I was finally successful but it did’t happen overnight, at least that was my experience. And, the sooner you do everything the better.

— added by Sharon jones on Friday, February 28, 2014 at 12:29 am