Monday, April 28, 2014

Autism Understanding & Acceptance 2014 Day 29: Adult life

I love the questions that have come in.  The most recent question was: Where do you see yourselves in 15-20 years, or even beyond that?  This question in particular warmed my heart because it showed that she is wondering (and I'm sure others of you are too) about what the future holds for a growing young man like T.

Once again, I will answer the question with the easier, matter of fact answer and then delve into the possible realities underneath.

Thomas most likely will be living with us for many years to come.  Rob and I are fine with that; in fact, we cannot imagine life without him.  He will likely stay in the public school system until he turns 22 years old, which is allowed in federal and state special education laws. We hope to keep ABA in his life as long as possible.  As he approaches the time when he'll finish school, Vocational Rehabilitation will be involved in his school day and they will assess his skills and introduce him to different work environments to find a good fit.  (That's how it is supposed to work, anyway.)  He will exit school with a Certificate of Completion, as opposed to a diploma, unless he really stuns us in the next several years.  We try to never say never, but we also try to be realistic.

When he has his Certificate of Completion and is done with school, the Medicaid Waiver services will really come into play for us.  It will be used to create a Person Centered Plan for him, and create "meaningful days".  The hope is that he will have a mix of employment and socialization, volunteer work and outings in the community.  If the waiver we have currently remains unchanged that far into the future, then he will be living with us for the foreseeable future.

If he is able to have a job, we will need to be extra vigilant about his income.  It is likely that because of his developmental disabilities, any income he receives will allow him to remain eligible for Medicaid Disability as his health coverage (he won't be making too much money, in other words).   But if he makes just enough over the income limit, he'd be kicked off Medicaid Disability, his Medicaid Waiver and the Supplemental Security Income (SSI) that he would receive from Social Security, the very programs that provide the services he'd rely on during his adult life.  So we'll need to monitor that very, very carefully.

Those are all the realities, and I've discussed how things should work in the best case scenario.  Now we'll dig a little deeper.

You may recall from my post about Medicaid Waivers that I commented there was "...a lot to say about waivers in our state."  Here's where I'll start saying it, but I'll give some background information first.  There had been a 12 year (minimum) waiting list to receive services.  In reality, that waiting list was stretching longer and longer each year because more people were being put on the list than were being targeted (thank you, explosion of autism diagnoses).  That sort of wait to receive services couldn't be sustained, and if we were to get picky about it, is kind of illegal, but states do it all the time.

Anyway, our state changed the waivers and got the fed's approval, so more federal money poured in, allowing those of us on the waiting list to be given a slot.  The way they did it: give all of us who had no services something, which is better than nothing.  But here's the issue: unless this new waiver is expanded at some point in the future, the budget cap we have now is the only amount we'll ever get.  I won't go into details here, but rest assured, that budget could never allow him to live in an apartment with roommates or live outside of our home, unless (are you ready?): both Rob & I are over 80 years old (so in our case, I'll be 83), or both deceased, or T will have to develop the most serious behavioral issues so that he is a danger to himself or others before we get more assistance from the state.  This is no exaggeration.  I am stating facts as they stand today.

So as you can see, I'm not exaggerating when I say that he will be living with us for quite some time to come.

Okay, that being said, let's take a deep breath.  I do believe that once everyone who has been on these exceptionally long waiting lists have been targeted and are receiving services, the state will expand services...and we won't really be looking at moving him out when I'm 83 and Rob is 80.  I firmly believe this, and am not really expecting him to live with us that long.

But as I look forward, I do see T with us for the foreseeable future -  minimally the next 10 years, probably 15 and maybe longer.  There is both comfort and discomfort with that.  Truth be told, I want him here with us until he is fully into adulthood, but I don't see the wisdom in keeping him with us into his middle age.  Rob and I won't live forever, and how tough would it be to move him out when we're gone, he is 40 or 50, and all he's ever known is life with us?

He needs the dignity of independent living, of an independent life (with Rob & I living VERY close by, mind you), and I'd strongly prefer that we are both around to help him with that transition to as independent a life as he possibly can have.

And as busy and intense as these early years are of his life (early intervention, school, therapies, etc etc etc), he will be an adult MUCH longer than he will be a child.  That part of his life isn't as clear to me, but I've taken the approach of doing the best I know for today, tomorrow and next week - maybe even a few months ahead - and by doing my absolute best now,  the future will take care of itself.

No comments: