Sunday, April 3, 2011

The care our kids will get when they're adults

So, that meeting I'd mentioned to you back in January about planning for the future for children with special needs, the one I needed my big-girl panties for, got postponed because of snow. The rescheduled meeting took place the week my dad died and I went—because I thought it was important, and I figured I couldn't feel any more upset than I already was.

I was wrong.

The deputy commissioner of our state's Division of Developmental Disabilities spoke about the long wait list for community services for adults; some had been waiting for a decade. Community services means day programs, residential placement, therapy, behavioral support, and job coaching, among other services. The wait list in my state keeps growing. A person can make it off the list asap only in case of emergency (say, if an elderly parent caring for him or her dies). "I don't believe in my lifetime we will ever fully fund the waiting list," the deputy said.

The problem is rampant around the U.S., made worse by the financial crisis. Last week, Disability Scoop reported on a federal class action lawsuit filed on behalf of 19,000 Florida residents with disabilities who for years have been on their state's wait list for community services.

That search for services is the theme of a documentary I recently screened, Autism: Coming of Age, sponsored by the Massachusetts Mutual Life Insurance Company. Thought-provoking, insightful, troubling yet hopeful, it follows three families of adults with autism, all men, and the challenges (and triumphs) they've had getting services.

In the next 10 to 15 years, some 800,000 children with autism will age out of their school systems; they will need resources from the federal and state governments, but they may not get them. "I worry about the scarcity of government resources for people who have autism in their adulthood," says Fred Misilo in the film, a special needs attorney and the former deputy commissioner for the Massachusetts Department of Developmental Disabilities.

States, the film explains, tend to fall into two categories: The kind that make IQ a cut-off for services in adulthood, and the kind that go more by developmental disabilities (IQ is still a criteria but not as central). The particular problem with autism is that not everyone with autism has an intellectual disability, so while a person may definitely need support, he or she still may not qualify.

About to run screaming from your computer?

Stay calm. Back away from your panic button. This may seem bleak, but there is hope, no matter what your child's disability.

An elderly lady at the meeting I attended who seemed to be a staffer (she didn't identify herself) and who'd clearly seen a lot stood up in front of the audience and stared kindly at what must have been a sea of horrified faces. "Do NOT be discouraged," she said. "Forget the waiting list!" And then she spoke about combining resources, such as Social Security money and Medicaid money, or getting together with other families to buy a condo and present it to HUD for funding. "You have to piece it together to build as much support as you can," she said.

Also hope-inspiring is "person-centric planning," which allows people with disabilities to use Medicaid funding to live and work in their communities (rather than going into an institutionalized setting). It's all about personalized care, and takes into account what's key for the person to be successful an what natural supports exist in his life. One of the adults in the film, Tomas, who is nonverbal, lives in a two-bedroom apartment with a non-disabled roommate who gets free housing in exchange for looking after him at night. Tomas lives near his mom and grandparents, as he wants to, and spends weekends with them.

More and more states are looking at person-centric planning as an option, though it will take years for them to implement it. It's a seismic change in the current system and in who has control (clients and families will have more say in what happens), and new and different resources will be necessary to make it happen.

But to those of us with young children, there is hope. For now, the best thing to do is consider estate planning—setting up a will with provisions for your child and considering the possibility of a special needs trust (also known as a supplemental needs trust) down the road.

Autism: Coming of Age is being showed on PBS stations around the country for the rest of the year; check your local PBS listings, or get airing updates on MassMutual's Facebook page.

I can give away my preview copy of the film; if you'd like it, mention it below and I will pick one person at random to send it to (if your email is not visible on your blog, be sure to leave it).

Note: In honor of Autism Awareness Month (April), PBS NewsHour is airing a six-part series on autism, "Autism Today," beginning April 18.

This just in: Another good documentary airing on PBS, courtesy of my friend Margie: Autistic-Like: Graham's Story, about one dad's search to find help for his son. It's also airing on PBS in April and May.



  1. Also worth mentioning that a special needs trust will prevent you/your kids from blowing the asset test, so they can remain eligible for SSDI/etc. It is VERY low ($2k last I checked). Employer provided life insurance alone would put you over the line.

  2. Today's Parade Magazine (also at cover story was about transitioning adults with autism out of the public schools. Some worthy facts and ideas in that article.

  3. Thank you for this post. I've been thinking a lot about planning for my son's future. You have given a lot of great resources...and hope!

  4. A girl I know down here found super-cheap rent living with a quadraplegic who likes having someone around in case he gets in a bind. I really have no idea what the future holds for Charlie and at this point I have trouble even picturing it. Maybe when he's a little older, I'll have a better idea of what he'll need. Right now, we fully intend for him to stay with us long-term, but that might not be what he wants.

  5. Thanks for sharing. This is very helpful and has given me an idea as I have also been thinking of my kid's future.

  6. Ellen, I'd be interesed in seeing that film, for sure! This is such a frightening topic for so many of us to think about. We tend to bury our head in the sand and assume we will, magically, live forever. *sigh*

  7. I think the big mistake that some parents make is the assumption that their child can/will always live with them. To the best of my knowledge, folks with developmental type disabilities (e.g. autism) have a typical life expectancy. Simply put - not going to happen! (And I'm 45 years older than my son!)

    I'm not making plans for my son (8 /w austim). I am however doing my best to pay attention to what is available TODAY. What are the different options? I get lots of information by talking to other parents while Luke is in therapy.

    I figure that once he is in high school I will have a much better idea of what type of assistance he might need as an adult. Hopefully I'm not being naive.

    Thanks for the post.

  8. thanks for the post - i hope to watch the program.
    I cannot even imagine T-man's future, but as of now, he will remain with us. I kind of block out the future because you can never predict what will happen, BUT it is good to at least be somewhat prepared. Now I just have to start believing and doing that latter statement.
    thanks Ellen.

  9. This is just such a difficult thing to accept and yet it is the same in Britain, my 12 year old is already on the waiting list for adult services in our area to be accessed when she is 19. The idea of banding together and doing something is interesting. Here I am not sure if they would allow that because everything has to sanctioned and staffed by trained/qualified staff and under the control of the local council.

    Thank you for writing this, the information will be invaluable to so many.


  10. We had a small trust set up when our sons were born, and then paid to append/convert to a special needs trust a few years ago. I do the review of the trust/wills/potential guardians every couple of years and that's when I try and see what changes have happened (my state and the U.S.).

    Has anyone considered moving out of the country? A parent at school is considering going back to Canada sooner than later, but I was thinking western Europe as another option for our entire family. Every state I've looked it during the past few years is grim, grim, grim.


  11. krlr: Yes, thanks for noting that, an important reason to do a special needs trust.

    Barbara: Thx for referring me to Parade, that was a really great piece, especially for them. Perhaps the best piece I've ever read there.

    Janet: I don't assume Max will always live with us. Maybe he won't want to (!), maybe he will do better in some sort of group setting, I don't know. Like Luke, he is just 8. Like you, I just keep gathering information. Hopefully, in a decade, the services situation will improve.

    Christina, wow. That is something I have never considered; we've been OK so far here, between the services Max gets at school, the therapies insurance cover, and paying for some stuff on our own. But when Max ages out of the school system, we'll have to see what the state of things are.

  12. Took a second job to put money into a SNT. So far, so good....

  13. I find what the parents of The Specials were able to do inspiring and I'm glad a documentary is coming out about how they did it:

  14. Thank you for sharing this is good information to have.

  15. I need to get my big girl panties on...but I don't wanna!!! *fetal position*

  16. Update:Because of viewer demand for "Autism: Coming of Age", the film can be shown to groups and organizations by special request. Please e-mail for full details if you are interested.

  17. I live in Belgium (the country right above France, underneath the Netherlands and next to Germany).

    I live in a house next to disabled adults. They live with 6 disabled people in one (plain, normal) house and take care of themselves. Some of them have trouble going to the bathroom on their own, others have trouble feeding themselves, some can't read.
    But the main thing is: they live alone (with eachother), have a normal job (one works at the post office as a stamp-person; another works for a car company, putting together parts; another one works as a gardener; ...).

    There is one person constantly "able to be present" from a neighbouring shelter for the physically and mentally handicapped). There are shifts, so there is always someone "able to be there", just in case they need them. One person checks in every week to clean, make sure they eat properly, check for health problems, make sure they payed their bills, etc. One day each week of which she cleans for half of it.

    They have lived there for over 6 years now, without any trouble and they fit in just like everyone else. Sure, you can see from the way one woman (Rose) walks and averts her eyes when she meets someone that she has a disability, or the way Robby talks incessantly about robots when he runs into you, that he isn't completely "normal".
    But they have a life just as I do; they work, play, laugh, socialize, and even party (easter, christmas, ...).

    And they pay for their own rent and care. Their parents visit regularly, but take turns so they don't end up with six parents on the same day: their sons and daughters don't nééd it either! Two parents still see it as a way to develop their "child" (who is actually twenty-something) and are really proud he can take care of himself in the morning, take the bus to work, work, go back home, stop on the way to pick up some bread for the others, etc. Most of them can also take into account that there are unexpected things that can happen. For example, last month the city started working on the road and tore down a piece of the neighbours front garden and ours, "because it is theirs". While my dad got into a fit and didn't know what to do, the neighbours just picked up the pieces of their garden, said they always wanted to redecorate and planted a few flowers together the same day. Another moment of which we could all learn: making the best of what you have.

    They are able to make a contribution to society. And in the end, isn't that something everyone wants to do?


Thanks for sharing!

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