Susan's Blog

Thursday, May 31, 2012

Might the sky be the limit?

There were times when Nat was growing up where I would become what I call “a little manic.” I used to get this way when I saw sudden lights going on for Nat, that awakening we parents hunger for. I’d see he was getting it, moving to the next level, and I would then flip joyfully into mania. I’d want to sign him up for things. Higher level classroom. Activities for the family previously untried. The sky was the limit.


This was not necessarily bad. This kind of episode of mine would lead to more attempts for Nat at new competencies. Even if things failed, we’d learn something. And hopefully, we’d try again a little later. So there I was, sitting in one session at this conference, and feeling manic; I’m at a conference on disability and transition into adulthood. I’m here on business;  I work for CCCAID, The Community College Consortium for Autism and Intellectual Disabilities. That’s right, folks, COLLEGE for guys with involved forms of ASD, and IDs! My consortium is working on extending the mission of community colleges by offering access — higher education, job training, job connections, and even independent living training.  There are federal programs, funding streams, that can possibly be leveraged for this purpose, to provide real, useful training for guys like Nat. (See for details on where these programs already exist.)


The session I attended before just blew my mind. It was on SSI and Medicaid. Not many people would cry after sitting in an SSI workshop at a conference, but there I was, crying into the phone, talking to Ned (I’m in DC). What was I feeling? That scary tingle of hope.


Sometimes I dread hope because with it comes work. I have to some work now if I’m going to follow through with this feeling. But I’m getting ahead of myself. I have to process what I’ve learned.


The main thing I’ve learned is that people like Nat can indeed work, earn money, and NOT lose their Medicaid benefit! BUT they have to follow the rules. There is still the limit of monthly assets never being more than $2000 at any one time. And of course if your paycheck exceeds $698 a month, you can no longer receive that SSI money. But if you have a disability that severely impacts gainful earning, you can still get Medicaid.


There are various Work Incentive Programs that allow people like Nat to use earnings for any work-related expenses. Even job coaching can be considered a work-related expense! So you can submit your work stubs and receipts to show income and service used, and still earn more than the SSI allotment, as long as you stay within the maximum monthly limit. In addition to this, you can figure out how limited you are in earning full-time and deduct that percentage from your income. So if Nat were to work at 50% capacity, I think this means that 50% of his income does not count towards taxable income. I think. My head is spinning with all I’ve learned, and I need to check on all of this. So please don’t just take my words here as any sort of professional gospell.  Check for yourself.


I guess what I’m feeling is that because Nat is enjoying his new supermarket job  and he’s suddenly earning more than I’ve ever seen on his check (it’s still way under the SSI limit), I have started to wonder if he could start to pay for more job coaching by taking on more hours and thereby stop doing the Day Hab part of his week. If he worked more and earned more, he wouldn’t be penalized because he’d be spending income on more job coaching and remain under the limit.


If he were to start earning so that he made more than $2000 a month, he would lose his $698 a month check, but he could still have Medicaid, as long as he was spending his money on rent, food, and anything related to his special needs. But this means he could have an income that pays for an actual Boston apt rent and he would not need State money anymore!!!!!!!!!!!!!!  I do not have enough energy for more exclamation points, but that is what it would take to express how this makes me feel. Nat could get off some of this state ddependence. Oh My God.


If I have this right. I just don’t know if I do, but I have these speakers’ cards and emails, and so I am going to check it out.  You can, too. Write to  My organization might consider bringing her to an event for CCCAID at North Shore Communiity College in Massachusetts, by the way.


If I can make this happen — and really, it means that Nat would be making this happen — then I just don’t know what. I just don’t know. To me, the sky’s the limit — and yet Nat is still profoundly autistic. Yes he is. Go figure. And remember not to be afraid of hope.


Crying at an SSI conference is totally normal in my world! I love the hope – I love the exclamation points!!!

— added by Suzette on Thursday, May 31, 2012 at 12:28 pm

ODSP cut off here is $5,000 but we’ll be able to get around it using a Henson Trust. I also think they delete wages against the ODSP dollar for dollar… I have fact sheets on it but it’s been a while since I read them and as you know the rules are constantly changing.

The idea of job coaching, independant living etc in a adult setting (like a college) where one is treated as an adult is an excellent idea.

Anything is possible… everyone learns… always. I refuse to believe any different and my boys prove it to be true, every day.

— added by farmwifetwo on Thursday, May 31, 2012 at 2:34 pm

I still have over a decade to go until Justin graduates, but I think of his future often. I am so appreciative of all the parents that have worked so hard to create opportunities for our adult children. Thanks for helping to push things forward, can’t wait to see how this will all benefit Nat!

— added by kim mccafferty on Friday, June 1, 2012 at 2:00 pm