Hard, Hard Questions: Residential Placement?

Published January 05, 2009 @ 10:00PM PT

The death (said to be, on his death certificate, due to a seizure) of 16-year-old Jett Travolta has been the main story referred to if you look up autism news since late last week (despite his not being diagnosed with autism). There's been something of a surfeit of speculation about what is, to me as another parent of a disabled child, something that's just very very sad. At 16, Jett Travolta was just a few years older than my son Charlie and all the talk about seizures and medication and about the bathtub where he may or may not have hit his head touches something very close inside me. I don't know what life was like for Jett or his family, but just reading about something like this happening to a disabled child, makes me think about---about some hard questions.

Charlie does not have seizures----that is, we don't yet know if he does. It's been noted that the onset of seizures in autistic adolescents and adults is a "relatively common occurrence, having been reported for about one-quarter of the cases studied." During the past year, Charlie has entered adolescence early and fast, and it's been something very new for all of us to deal with. He's grown several inches and we speculate about growth spurts. Little boyness, in a physical sense, is gone.

Parents whose children are older than Charlie and autistic adults have noted to us that adolescence was not an easy time (understatement). Yesterday morning---Charlie's first day back at school---started slow and became wrenching in a matter of a minute and it was back to holding onto him and we weren't sure he could get on the bus (he did and his school day was good). As I wrote in my primer on advocacy, a few months ago, our school district suggested to us that we ought to consider a "temporary residential placement" for Charlie in the future, and possibly the not so near future. We were shocked---life with Charlie is simply our life---and asked the school district to do more to accommodate Charlie in his classroom. His teacher has been wonderful, attentive, carefully taking note of his learning style and of what motivates him. And things were good, and then came the disruptions of the holidays, and Charlie seeming to grow a little taller every day.

I have been learning more about residential placements, from my readings and have been hearing from some who've been sharing personal experiences, of relatives, of themselves. I keep thinking about all we have done to help him. I keep factoring in the reality of how little speech Charlie has----he could not tell us if something happened to him. I keep thinking of how much life for us is to be the three of us. I keep thinking; I stop thinking and sit down by Charlie, lying on his blue chair and munching some of the crackers he selected at the grocery store this afternoon.

I think about how, from 2.30 pm until he goes to bed, I'm always listening for Charlie's voice.

I think about how glad I am that he's right here with us.

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Comments (17)

Thank you for another great blog entry.
One possible alternative to residential placement is a microboard. Here is a description from www.microboard.org:

A Vela Microboard is formed when a small group (micro) of committed family and friends join together with a person with challenges to create a non-profit society (board). Together this small group of people address the person's planning and support needs in an empowering and customized fashion. A Vela Microboard comes out of the person centered planning philosophy and is therefore created for the sole support of one individual.
Essential Components of a Vela Microboard The process must be focused on the dreams and wishes of the person for whom the board is being created;
All Microboard members must be in a close, voluntary, and committed relationship with the person for whom the board is being created;
These close relationships are the foundation of the board and must be honored above all other activities.

A friend of mine has created a microboard for her young adult child, who was previously in residential placement. The new arrangement has been a big improvement. It also helps to address the worry that keeps me up many a night: Who will be there to care for and love my child if something happens to me?

Please forgive the length of this response, and keep up the great work. All the best, Ellen Nee

Posted by Ellen Claire Nee on 01/06/2009 @ 01:53AM PT
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Kristina,

I agree with you. I had written the same on my blog (moved to www.esteeklar.com) Joy of Autism.

When a real crisis hits like this, which I could not even fathom if this happened with Adam, we realize even more how unbelievably lucky we are to have and love our kids.

Posted by Estee Klar on 01/06/2009 @ 04:16AM PT
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Susan Senator (http://www.susansenator.com/blog) has written quite a bit about her 19-yo son Nat's transition into a group home. I don't agree with every sentiment she's expressed in her writings, but I do think they're worthwhile reading. Their experience is about as far away from "putting a disabled child away" as one can get: Nat visits home regularly, and his family is in constant contact with the group home staff.
In some ways, Nat's transition is similar to "launching" many a son or daughter into a college setting or a first living-and-working situation outside the family home.

(That said, much depends on the way a group home is run, and whether its management and staff are cognizant of, and work to avoid the problems inherent in, the power dynamics of any institutional setting, even a small group home. Amanda Baggs (http://ballastexistenz.autistics.org/) and Dave Hingsburger (http://davehingsburger.blogspot.com) are the best writers I've come across, regarding the power dynamics of institutional settings and the pitfalls and dangers therein. And it's not just institutional settings for people with developmental disabilities: nursing homes and elder care settings, for example, have the same power dynamics and need the same sort of mindfulness in their management in order to do good and not harm.)

A decision about one's autistic child moving to a living situation outside the family home is a huge one, and needs to be undertaken for the right reasons and with the right goals and outcomes in mind. Most children -- autistic or nonautistic -- are going to survive their parents, and eventually will need to grow into a living situation other than the family home as currently constituted. Helping them attain the skills and resources they'll need to make that eventual situation optimal needs to be a major strategic part of whatever we do for them as parents.

Posted by Phil Schwarz on 01/06/2009 @ 05:45AM PT
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@Ellen Nee: the Vela Microboard idea is a great one and needs more attention and exposure -- thanks for posting about it! Vela (http://www.microboard.org/) is local to British Columbia, Canada, but briefly Googling "vela microboard" I see that there are parallel organizations in Australia and Northern Ireland. I'm sure there are similar organizations in other parts of North America than BC, too. I see that there's a history and explanations of the workings of (at least one formulation of) microboards at http://www.communityworks.info/articles/microboard.htm, as well.

There do seem to be replications of Vela among other organizations showing up in the Google search -- one in Tennessee, one in Texas...

Kristina and Dora, may I suggest creating a primer topic on microboards, and encouraging readers to send you pointers to microboard resources?

Posted by Phil Schwarz on 01/06/2009 @ 06:00AM PT
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I like the Microboard idea. I'd never heard of it before. Thanks for the information!

Posted by Siliconmom . on 01/06/2009 @ 09:09AM PT
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Over here, currently the most popular form of housing, for all functioning levels (using this term for lack of a better and because people will understand what I mean), is projects set up by autistic people themselves, their parents, or both:

You can get funding to build a building (can take any form, like apartments or houses, or one big home with a shared living room, etc.), a team of people helps you figure out every aspect (if a new building needs to be made, it can be built according to specifications, people help you with that, with finances, everything). Like, they can make sure it's close to shops but in a quiet neighbourhood, the rooms/apartments will be silent (not allowing much noise in from outside). Any care that is needed can be arranged to be in the same building or next door, for example. It's paid for through a PGB. People are found to live in the houses (or whatever) (usually people that sort of match up in age and otherwise).

I have considered living in one of these projects, but so far there have been a few things that keep me from it:
1)A lot of them (that I would fit in with) are nowhere near here and I have no desire to live somewhere on the other side of the country.
2)They are not built for couples, they sort of assume that if you can't live independently, you won't be living with a partner (big flaw), or that your partner can somehow take on every duty that staff would usually take on (no matter their own full-time job and such, not to mention the fact that it's pretty bad for your relationship). Or that you can somehow find a suitable house/apartment magically if you have a partner.

There are a lot of benefits, like it won't cost you much, since there is funding available for this. You can stay there for the rest of your life if you want. You can decide how care/staff is arranged (just need to get your hands on a PGB, not always easy). It can take many forms, for different people's preferences.

I'm sure I explained this in an unclear way and that I forgot lots of things.... but maybe someone else will have explained it better and you can google it...

Posted by Norah vd Stel on 01/06/2009 @ 11:58AM PT
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I'm in the odd position of being both on the spectrum and working with Developmentally Delayed in residential home settings. I work the over night shift, (as I could never manage the socialization required in day shifts .) I became friends with another "aspie" at another house with the company and these three elements have given me a "unique" perspective on residential placements.

Without going into great detail, I have never observed abuse of any residents but indifference, dehumanizing and manipulative attitudes, hiring unqualified staff and poor money management appear to be the norm . The trend in my area is to staff with persons from Liberia that many residents have difficulty understanding due to accents. I have observed many staff spending the majority of their shift on their cell phones or watching TV with little interaction with the residents and less apparent compassion for their needs. You can't pay some one to care, only to follow the min. requirements of the body .

Another "trend" appears to be spreading the more violent and difficult residents among the houses which often results in the higher functioning being under stimulated(outings are geared for the lower ends of functioning) or abused by other residents . House managers are often spread to thin,( to cover unpredictable staffing issues) and staffing itself is high turn-over . Most houses are set-up to save money by requiring all residents to be involved with 7am-3pm, "day programs" which is often little more then setting them in a room with a plastic bag of screws to count .

I know all placements are not this bad, but it is often difficult to tell from a parents visit when staff are all on "best behavior" mod. Some parents are so desperate to find some placement(waiting lists for years), that they may self-delude to over look problem areas.

I don't have a solution but "residence" should always be a last choice.

Posted by Denise junk on 01/06/2009 @ 01:35PM PT
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Thank you, Ellen, to opening my eyes to the possibilities of mircoboards. Very interesting and exciting!

Posted by Karen D on 01/06/2009 @ 04:48PM PT
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Kristina, when they tell you that you should consider an in-placement, that is their code for "your child's issues are hurting our NCLB and funding chances." It has nothing to do with what is best for Charlie, and everything to do with making life easier (and cheaper) for them.

Never assume that any government body, school, or what have you, knows what's better for your son than you do. Odds are they have nincompoops working for them, your child will be dumped in front of a TV for a large portion of the day, and you will never know it. Except for when he pitches a fit every time you leave.....

By the same token, do start looking into transition now. Don't wait until last minute, because you want to know what you are up against WAY ahead of time so you can fend off their arrows.

Posted by Moi Bloggg on 01/06/2009 @ 05:05PM PT
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First, I can't say how much I appreciated reading every response here. I am going to be reading each several times over. Thank you, Ellen, for the information about microboards---thank you!
Jim and I have been very unsettled for these past months. Charlie has been doing better and his teacher in particular has really reached out. But concerns remain and will most likely continue.

@Moi Bloggg, yes, that is the message we got----"we just want the winners," or those without any "serious" behavior problems. Point about transition taken---can you suggest any general links? I think I will be writing about this.

@Phil, thank you, yes, I have been following Susan's blog postings about Nat. He is a bit older than Charlie and the setting suggested is not a group home. It is-----I was speechless when I heard this---Bancroft, in south Jersey----I think you all know what happened there.
Or maybe I should post about it.
Denise, I have been worried about just such concerns regarding staff. I have noted (due to a recent experience seeking care for my in-laws) that many of same things in careworkers, whether in assisted living facilities, or, too, in the careworker(s) who live in my in-laws' house.
There will be more on this topic.

Posted by Kristina Chew on 01/06/2009 @ 07:00PM PT
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@Kristina: Bancroft? WT*F*?! *Run*, don't walk...

Posted by Phil Schwarz on 01/06/2009 @ 09:13PM PT
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@Moi Blogg - Even if a child is in an out of district private placement they are still factored into NCLB if the school is paying for the placement. They will actually ship kids in residential placements back to their home schools to take standardized tests. NCLB is a joke, though.

Posted by Erin Monk on 01/07/2009 @ 01:00AM PT
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Do I have links, Kristina? ;) I don't know if these links will come out in html, or if you have to cut and paste.... You will need info, 14 is not that far away..... Here are soome for a Start...

http://www.wrightslaw.com/info/trans.index.htm

http://www.wrightslaw.com/info/trans.legal.bateman.htm

http://www.transitionmap.org/

http://www.fetaweb.com/03/iep.transition.age14.htm

http://www3.allaroundphilly.com/DLN/specialneeds/cciu.html

http://www.autismallianceofchestercounty.org/
(look at their links page)

http://www.dsf.health.state.pa.us/health/cwp/view.asp?q=243876

http://ncset.org/searchsite.asp?search=transition&action=Search+NCSET&thebutton=Search
(there are a lot of links on this site...)

Also, check with your local special needs agency (I don't know what it's called in NJ, it's the Intermediate Unit here in PA) - they should have a list of what is available as far as anything government, should you ever want or need it.

AND you should start to attend seminars - I have already done that in our IU here, as well as through PATTAN. It's helped me weed out pretty much everything, I don't want any of it.

If Bug were more severe, I might consider a group apartment - they have them short-term, so the kids can try living in situation, with IU autism support team monitors.

Posted by Moi Bloggg on 01/07/2009 @ 05:44AM PT
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@Nicole - They don't do that here in PA. Ugh!!!

Posted by Moi Bloggg on 01/07/2009 @ 05:44AM PT
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Oh, and here's the PaTTAN link.

http://www.pattan.k12.pa.us/teachlead/SecondaryTransition.aspx

Posted by Moi Bloggg on 01/07/2009 @ 07:11AM PT
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One more thing....

Penn Autism Network's conference this year is on Community Integration, including facilitation of transition. :)

http://www.med.upenn.edu/pan/

Posted by Moi Bloggg on 01/07/2009 @ 07:18AM PT
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@Phil, it's more like, we galloped and didn't look back.

Posted by Kristina Chew on 01/07/2009 @ 07:44AM PT
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.