Susan's Blog

Sunday, January 9, 2011

Turning 22: What I’ve Learned So Far

I am eventually going to de-mystify Turning 22, for me and for anyone else who’s reading.  I’ve been giving a lot of talks this year and maybe it’s my own energy around the subject, but I’m finding that the parents in the audience want to hear about post 22 more than anything else.  My talk has thus begun to shift towards Nat’s later years, towards new topics such as “the dignity of risk,” and “letting my autistic child move out,” and “fostering a connection with my adult autistic son.”  Where my main topics used to be things like “Pre-diagnosis confusion and loneliness,” and “Finding the right school program,” and “Sibling relationships,” I am adding in so much more about Nat as he is now, or as he’s been in the last 5 years.

I’ve had more hope and excitement in the last 5 years than in all of Nat’s childhood years.  That’s because I’ve seen more growth since age 15 or 16 than I used to see.  I will never know why it happened that way:  was it because I was so panicked in the early years that I stressed him out too much?  Or was it that he was not progressing quickly enough that panicked me?  What was real and what was my perception, my filter?

More and more frequently, I feel positive about Nat, counter to what I maybe should be feeling.  I feel good for two reasons:  the Big Picture, and also the fact that I’m conquering my ignorance about Turning-22.

When I look at the Post-22 programs, funding, regulations, and limitations our country and my state offer, I could conceivably be very worried and pessimistic.  But I’m not.  I feel, for the most part, proud that our country has so many programs, as limited and as poorly funded as they are.  We are still a great society, a country that tries to take care of its citizens, though sometimes not as efficiently or as thoroughly as it ought.

The problem, as I see it, is that the information about the programs is buried in many different places, like the way a paranoid old miser hides his money:  some under the mattress, some sewn into his coat hem, some in a safe.  All of the different programs and revenue streams for developmentally disabled adults are shrouded in dusty old office buildings, or ten clicks away from the original link, or embedded in text that would make a 1040 form read like an Archie comic.

This is what I want to talk about, what I do talk about, to anyone in my circle, to anyone who’ll listen.  I don’t want to get all Chicken Little on your ass and scare you about Post 22; rather, I want to make you clear-minded.  The other reason I mentioned about feeling positive about Nat as an autistic adult is that I am beginning to understand The System. I’m getting it.  So now I want to talk about it systematically, so that everyone after me will have steps to follow, but the trouble is, this didn’t happen for me in steps.  It happened in bursts, in gusts of clarity and energy.  Whenever I had the time or attention span to listen to the gurus I’d identified, I listened with my eyes wide open.  I repeated facts and asked the same question over and over again until I understood.  I made myself look stupid and pain-in-the-assish, but I finally get it.

Here’s a few things I know, FYI:

1) Apply for your kid’s SSI as soon as he’s 18.  That way he’ll start receiving a fairly substantial regular check that you can use for his expenses (therapy, gym equipment, tutor, summer camp).  And more importantly, he will be eligible for Medicaid.  BTW, don’t try to apply for SSI online; go in person to your local office.

2) Medicaid is not just an amazing insurance program that pays for a lot of your child’s care that ordinary insurance will not.  Medicaid is also the way to get him a day program post-22.  In Massachusetts and many other states (I believe), Medicaid funds the DayHabs, the 9-3 program your child can go to M-F.  It is up to you to explore various DayHabs to find the best (they are not all alike).  You can start exploring DayHabs whenever you are ready.  You find them through service providers, or sometimes they’re called vendors.  Your Department of Developmental Services (DDS) should have a list.

3) Find out your child’s Priority rating with the DDS, if he is even eligible for this scanty funding.

-In Massachusetts, it is through DDS that your child would receive Residential Support, e.g., the staff to support him while he is not in DayHab.

-Sometimes the DDS has money to fund certain Day Programs that are not DayHabs.  Day Programs might have work as a component, and they are highly desirable, but the funding is scarce.  Still, if you find a Day Program you like, push for it with the DDS.

4) If your child is not DDS eligible but gets Medicaid, see if he can qualify for Adult Foster Care funding (AFC).  This provides a stipend for a live-in caregiver.  Not enough for full-time, but if he lives with another peer with similar needs, perhaps they can pool their AFC money and have enough for one caregiver to share.

5) Apply, in your child’s name, to the Section 8 waiting list.  It is approximately 10 years to wait, but before you know it, that time will pass.  There are some centralized lists that basically all use the one application so you don’t have to apply to hundreds of Housing Authorities (Housing Authorities administer the Section 8 program).  My next book will explain Section 8 but basically, once you have a mobile Section 8 voucher, you can look for Section 8 housing and you only have to pay 30% of your income towards rent.

-Project-based Section 8’s are a good deal.  They are not assigned to a person like the mobile vouchers; they are assigned to a property intended for Section 8 eligible tenants.

6) Network with parents you know who are in the same boat.  Cultivating your child’s community is as important as securing funding.  If you have a committed group, you can accomplish a lot.  Make friends with the parents in your kid’s class; take him to Special Olympics events to find peers for him and parents for you.  Go to support groups to find kindred spirits.  Think of this as if you are an old fashioned parent trying to find the right spouse for your child.  You will be going into business with these people and you need to be able to work with them and depend on them.

I will also talk in later posts/my next book about how to come up with the kind of living arrangement you think your child would like — either with his help, or if he can’t give you that kind of information, how to figure it out for yourself.  Also, how to find people to staff, train, and run the Residence.

But not tonight.  I have a headache, and as Nat told me earlier, “Mommy lie down.”  So, later.


[…] This post was mentioned on Twitter by Alltop Autism, Susan. Susan said: I'm beginning to de-mystify #Turning22. #autism #adulthood […]

Susan, you are amazing! Haven’t commented much lately but I’ve been getting so much our of your postings. This list is a fantastic resource and I will save it for later on down the road.

You touch so many people’s lives and I hope that you and your family have a wonderful 2011!

— added by Suzette on Monday, January 10, 2011 at 1:02 am

My FSW (Community Living) told me that once I got the school stuff settled it was smooth sailing to 18… and then it started again. True to a point… I know the “rules” now and can make demands and have expectations. Doesn’t mean it’s perfect, but atleast I know my and my children’s rights.

I still have about 4yrs (I figure by age 15) before the elder gets there, and the younger is a couple of years behind to start understanding the post 21 mess. I do know I have to apply for ODSP at 18 and since the little one receives ACSD, and as long as he can sign his name (which he can), it’ll flip relatively easily. I know I have to get the trust built before then and get myself on it as trustee (Henson). I need to join Community Living and understand the board, the residences etc.

It never truly ends does it?? Not complaining…. better than not knowing and expecting someone else to do it.

— added by farmwifetwo on Monday, January 10, 2011 at 7:40 am

Farmwifetwo: what do all those acronymns stand for? What state do you live in? Thanks in advance

— added by SS on Monday, January 10, 2011 at 9:37 am

Got a ways to go until 18 or 21, but this one is bookmarked. Thank you!

— added by kim mccafferty on Monday, January 10, 2011 at 11:09 am

Thanks for the info. I keep hearing SSI horror stories, how it takes up to four years to actually get it going and that if I want my son to receive SSI I had better start working on it now (he turned 14 on December 31st). I was fortunate in that I met a parent through networking who has a son who is 32 with autism and she’s been through all this before so she mentors me on what little is available and how to get it when my son turns 18. Matthew tells me not to worry, he will be okay and has his sights set on a job at Taco Bell when he turns 16.

— added by Sharon Jones on Monday, January 10, 2011 at 12:28 pm

One other point, that I found out recently is funding for adult children who live with their families. If you decide to keep your child at home (regardless of day services), you can receive funding through an agency to help support his needs at home (rec, personal care, independent living skills etc.) and you can get paid through the agency. The adult child’s guardian can’t receive the funding but if one parent gives up guardianship, that parent can be paid. This helps a lot of families tremendously, if their choice is to have their adult child live at home.

— added by Michele on Monday, January 10, 2011 at 5:16 pm

Yes, Michele! That is AFC: Adult Family Care!! It is funded through Medicaid.

— added by Susan Senator on Monday, January 10, 2011 at 5:17 pm

Wow Susan, you are such a generous resource. Thank you. Suzanne

— added by Autism Mom Rising on Monday, January 10, 2011 at 10:11 pm

Thank you for writing about this. Even though my guys are only six, I wonder a lot about the post-22 years. My main plan so far is to move to a state with better services in general.

It’s very encouraging to hear about your more positive feelings in the last five years. I also feel more encouraged as time goes on, but I think a lot of it for me is a new perspective. In the first years, I was hoping against hope that they would suddenly turn “high-functioning”. Now I can honestly feel really proud when they do something like put their arms in their shirt sleeves independently. Whatever it is, it’s a relief to feel more positive!

— added by Alice on Thursday, January 13, 2011 at 11:47 am

Why is it that parents that have guardianship cannot be paid as “adult family care” providers? What does guardianship have to do with it?

— added by Jan on Tuesday, September 3, 2013 at 12:51 am

That is a great question. I don’t know why. They should be able to be paid without giving up guardianship.

— added by Susan Senator on Tuesday, September 3, 2013 at 6:52 am

Our school district is making us use a dayhab at 19 rather than 22. I want him in school till 22. Do I have a leg to stand on??? Lease respond!!

— added by Sarah Meunier on Monday, March 31, 2014 at 4:00 pm

Oh, Sarah, I’m sorry, I don’t know! I think sometimes a parent has to fight for the “until-22” if the school feels differently. Does the school feel your child is too “high-functioning” to stay 3 more years? Can you appeal to your state Dept of Education?

— added by Susan Senator on Monday, March 31, 2014 at 4:02 pm