Susan's Blog

Thursday, February 17, 2011

The Transition Learning Curve

I’ve begun Part II of Nat’s Transition to Adulthood:  the Day Program.  November 15 is right around the corner, so that is my goal date for having his entire Transition setting set up.  He will leave school that day and move out of his school residence soon after.  This is a lot to contend with emotionally and pragmatically, for Nat and for my family.  That’s why I’m writing these blog posts:  to tell all of you out there to get going as early as possible in your research and in your emotional process.  You look at your little guy now and think, “Oh, God, I can’t imagine him grown up.  What will that be like?  What will his peers be like?  Will they be like a bunch of lost souls shuffling around from van to mall everyday?”

I will get to that.  The only lost souls are those who are not feeling happy and purposeful in their lives.  That includes you.  I hope you are not a lost soul.  But more about that later.  I suggest you approach this the way your autistic child approaches learning any new skill:  break it down into baby steps.  Think about your modus operandi, how you operate, how you achieve things, and go with your own model.  Maybe you like to do things methodically, one appointment after another.  Maybe you do things in bursts, like me:  one appointment or maybe ten, and then none for months.  Whatever works.

First you have to learn about who you are dealing with. I would try to understand the key players, the names of the departments and organizations involved. How do you learn this?  You go to a workshop.  Pick one workshop for this year, one Transition to Adulthood workshop.  Write down your questions.  Ask a few of them, but not all.  Keep in mind that as you dip back into this stuff, it will clear up, concept-by-concept.   There are Federal Programs and there are State Programs.  Federal are for everyone, State differ.  Who is your State point person?  Cultivate a relationship with a friendly introduction via email or phone.

Next you learn about the programs themselves, what they offer. SSI, SSDI, Section 8, Developmental Services, DayHab, Residential Supports. Don’t worry yet about how to get into them.  Just learn their function. I tried to figure out all of Section 8 in one fell swoop:  forget that.  These days I’ve been touring centers in the Greater Boston area that offer a program M-F, 9-3.  These are typically Medicaid-funded (Federal $) therapeutic programs, i.e., no employment/earning component.  These are called “DayHabs.”  The centers vary in quality and goals; some do highly individualized curricula and others have more of a general schedule with a choice or two. They go out into the community (it should be much more than malls, and if it is malls, then be sure your guy is learning money skills and dealing-with-the-public skills).  Visit the program.  Tour it and get a good feel for it and the clients it serves.  Are they engaged?  Happy?  Watching TV?  Can you imagine your guy there?

Imagine your guy there:  he is part you, part the child he is now.  So you think about how you would feel there, but not using your deep and complex social knowledge.  Think about what he likes to do, and if you can’t name a concrete activity, (mostly Nat likes to be active, with people but not talking to them), figure out when he is happiest.  Does this place match that?

(Be prepared for developmentally disabled adults.  They are not as good-looking as kids with DDs.  Think about it this way:  no adult is as beautiful as a child.  We age and uglify.  Sorry.  But don’t look at these people as lost souls, broken, pitiful, sad.  An unusual face is just that:  an arrangement of features that you don’t see everyday.  It means nothing.  A voice that speaks in grunts or not at all is still fully human, FULLY human, with an inner life, even if that inner life is pictures swirling around his mind, or beautiful sounds.  I don’t freakin’ know!  I’m just saying, get past what they look like.  It’s just a body.  We can’t all be magazine people.)

Many of these centers (also known as Vendors, or Service Providers) also have Day Programs, which are not DayHab, or therapeutic only.  Day Programs often have a volunteer or employment option, but you need to find a way to pay for it.

Next you find out how to pay for it.  You need to find out if a program is an entitlement, or Medicaid/Federal money, or if it is something you have to push for with your Developmental Services point person (see above).  You need to find out how to set up your savings so that they can help your adult child someday but not get in the way of his funding.  I still don’t really understand this one, but I have a lawyer who does.  You are looking to set up a Special Needs Trust.

About guilt:  try not to go there.  Even if you have resources to support your child, you don’t want to get into a situation of depending solely on that, especially when you are gone.  You have to think of your adult child as an independent adult — that is his right, it is about his dignity.  These programs help him become an independent adult, as much as possible.  We are so lucky that our society attempts to support those who cannot do it all on their own.  We are a society that spends tons on building roads and highways and bridges.  We are a society that subsidizes farmers and to some degree, big corporations with tax breaks.  Everyone gets help and benefits from our government to some degree.  Why shouldn’t your guy?  Why is one considered a handout and having our roads built for us considered a given?  Think about it.  I wish we could all chip in and get along.

I have listed for you the big steps.  You break them down.  Do one thing at a time.  Start a notebook.  Save business cards and telephone numbers.  Build your network.

Above all, give yourself a break, take your time, but still:  do it.


Thank you for continuing to write about this Susan, for demystifying things. Sometimes we’re just trying to get through the day with the boys, and to have such huge obstacles as finding residential care and “valid” employment broken down into steps is a huge help!

— added by kim mccafferty on Thursday, February 17, 2011 at 10:34 am

For us it took 2 years of research, getting funding, putting plans in action. It certainly is a lot to contend with.

— added by Casdok on Thursday, February 17, 2011 at 11:22 am

Here it’s called a Henson Trust Ours is done in the will. The outside one will not be completed until just before his 18th birthday. Otherwise the taxes are at the upper level. After 18 they are taxed at their actual value. Mine’s 9.

Right now I’m more worried about middle school – yes I know he’s in Gr 4 🙂 – but I too, with all those thoughts have started writing lists about the “who, what, where etc” of what’s available here.

— added by farmwifetwo on Thursday, February 17, 2011 at 11:34 am

Hi Susan. Excellent article! Your comments on accepting appearances made me chuckle. I know I have uglified a bit, and who freakin’ knows what’s going on in my head!

— added by Jonathan Richardson on Thursday, February 17, 2011 at 12:59 pm

These posts are such an amazing resource. I recommend your books to families I work with all the time, and am now passing the link to your blog along as well. Thank you so much for providing this information!!

— added by bec on Friday, February 18, 2011 at 10:30 am

You make a good point about faces. Those of us who are socially motivated try to arrange our features so as to appear confident, attractive, hip. it’s when the mask slips that you get a glimpse of the real person inside. My husband cued me in to watching people behind the wheel alone in the car, when they’re physically intent on driving but psychically elsewhere, mulling over their thoughts. Check it out sometime. The disparity between how a person presents him-/herself in social situations and when they think they’re unobserved is striking and sometimes deeply poignant.
If only the “disabled” were physically beautiful there’d be a flood of funding raining down on them. Unfortunately, we’re frightened by those who appear unlovely. It’s very sad and shallow of society at large.

— added by Sunni on Friday, February 18, 2011 at 10:56 am

Wonderful post Susan. And when you are looking around at programs. look for an open, loving atmosphere. Ask to meet families of other people who are part of the program.
There are individuals who are not as lucky as Nat, meaning they have court appointed attorneys as guardians. They need their housemates and and their staff to be their families, as well as their caregivers. It is possible. The world of adult services is still new to me, after 3 years, but I continue to be so impressed by how caring and generous so many of our staff are. One of the men our program cares for passed away a week ago, after an illness. He had been with the program for many many years. The out pouring of love and devotion not only he, but also his family received could only be possible if people felt a familial connection. The family requested that his funeral and wake be private, and specified that private included all of his “agency” family as well. I walked into the wake last night are saw the celebration of a wonderful life by all who loved him. Family and “staff” sharing years and years of stories, both funny and otherwise. Today at the mass, staff members brought all of this individual’s housemates, dressed in suits and ties, some with 2 staff per person, to be sure that they could be a part of their friend’s goodbye. We brought several people from his day program as well. It was a farewell full of love and devotion. Every single person said goodbye to their friend with such love and respect. People who have such difficulty behaviorally at times, lived up to the high expectations. We are so proud of all of them and so sad for the loss of our friend. But if success is measured by the impact one life has on those of so many, then this man’s success in life is immeasurable.

— added by michele on Friday, February 18, 2011 at 6:49 pm

I <3 Jonathan's comment!

— added by Brenda (mamabegood) on Friday, February 18, 2011 at 8:05 pm

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