Back Into It All in New Jersey

Charlie putting cardboard (to be recycled) into the black car Ngin Ngin's seven great-grandchildren—Charlie is the second youngest—were a big focus at her funeral. Five of them (the youngest is a toddler) all came up to the lectern at the funeral home and read a biography of her life. As I listened to them, I thought of what Charlie might have done had he been there: Jim and/or I would most likely have been standing beside him, and he would not have read. But presence counts for more than a lot.


Charlie just about a week younger than one of his second cousins (my first cousin's cousins). Until the birth of youngest great-grandchild about two years ago, he was the six great-grandchildren. While the three of us only visit California once a year, during Christmas, my relatives seek to include Charlie as much as is possible. In lieu of flowers for Ngin Ngin, my family had put down two organizations to which people could donate money. One was (at my request) the
Friends of Children with Special Needs, which was started by a Chinese American family with an autistic child. Indeed, my mom and dad met with the center's director last week to discuss setting up a fund "in memory of Lee Chew for Charlie Fisher."


I've been fortunate to have met a couple of families with kids like Charlie in California; I've always liked to keep up with services, programs, and the like in my native state. Jim and I have often discussed the possibility of
getting ourselves out to California by the time Charlie is an adult, as Charlie has no siblings and he'll need family around to support him as much as might be possible when he is older.


I'll be honest that our recent experience in finding an appropriate school for Charlie has shaken our sense of how much New Jersey can offer Charlie. Jim and I specifically moved back to Jersey in 2001 so that Charlie could attend an autism program here. Some years and schools have indeed been great—and some not. Jim often reminds me that there's "no geographical cure": Perhaps the lesson to take from the past year of struggle and uncertainty is to remember this phrase, and the importance of
doing things—of teaching—Charlie ourselves.

In light of all this I've been reflecting on recent initiatives about autism in New Jersey. 


New Jersey has the highest autism rate—1 in 94 children being diagnosed with an autism spectrum disorder—in the country, according to 2007 figure from the Centers for Disease Control and Prevention. Almost a year ago, a statewide autism registry was proposed in New Jersey. The registry was one of several initiatives developed by the Governor's Council on Autism and was proposed as an amendment to the state’s birth defects registry (N.J.A.C. 8:20; more details can be found on the Autism New Jersey website), “although autism is a developmental disorder not a birth defect.” According to N.J.S.A. 26:2-187, health care professionals are now required to report those diagnosed with autism at any time from the day they were born through their 21st birthday. 

We just got a registration form for Charlie from his neurologist. It's noted that the registry will provide an "opportunity to identify and access health services which may be available to families, as well as to "provide data for public health research, on both state and federal levels." Registration is mandatory, but families can choose to withhold personal information, such as names and addresses. It's not exactly a secret that Charlie's on the autism spectrum and he's already registered with New Jersey's Department of Developmental Disabilities. We are certainly concerned about what the state intends to do with the information it compiles and will most likely be our usual ask-too-many-questions-selves.

Another new initiative proposed by Governor Jon Corzine is to create an Office of Autism Services within the state's Department of Human Services. Yesterday's Philadelphia Inquirer reports that, while organizations like Autism New Jersey applaud this new development (the governor announced the new Office of Autism Services at Autism NJ's conference last week), other organizations like the ARC of New Jersey praised the new proposal, but expressed concerns about putting so much of a focus on one specific disability:

Thomas Baffuto, executive director of the ARC of New Jersey, praised the panel for raising the right issues but said, "It's very difficult for us when the solution focuses on one segment of the problem."


"Are the needs of an individual with Down syndrome or cerebral palsy different from the needs of an individual with autism?" asked Baffuto, whose organization has served people with intellectual and developmental disabilities, including autism, and their families for 60 years.


"We want folks with autism to get all the services they need, but setting up a separate office like that sets up a two-tiered system," he said.


Baffuto said he was also concerned about the state's limited resources in a difficult fiscal climate.


"There are 8,500 people on the waiting list for services. Why create another bureaucracy?" he said.


…………….


Nationally, "autism is the disability that's getting the focus right now in a lot of sectors," said Barbara Trader, executive director of
TASH, a Washington nonprofit that lobbies for equity and inclusion for people with disabilities. "But the entire disability community needs a lot more services." [my emphasis]


…………


Deborah Cohen, chair of the Adults With Autism Task Force, recalled a parallel in public health with HIV/AIDS. For a while, a lot of research grants and public funding went into that infectious disease, leaving others begging, she said.


That doesn't have to happen with developmental disabilities, she said.


"The task force's final recommendations have to do with aging and educating people," Cohen said. "People with autism don't age any differently than people with any other developmental disabilities."


Will more people seek out an autism diagnosis for a child precisely because such might entail more, better, easier, readier, access to services and programs? Would it make more sense—be a better advocacy and political strategy—for advocates for autistic individuals to join with advocates from the "entire disability community"?

I'll admit to feeling a pull toward the latter strategy. If more resources are going to be directed towards the "autism community" (though, as I learned while blogging at Autism Vox and at Change.org, this "community" is not as easy to define as might be thought), I want them to be directed to specific services and programs for autistic persons, rather than for abstract notions of "research" or "awareness." People constantly invoke the phrase that "if you've met one autistic individuals, you've met one autistic individual"—ok, so let's direct advocacy efforts towards actual people's needs, rather than to the (again) abstract and amorphous notions of research, etc..

Worrying about how to get Charlie's individual needs met is one reason that Jim and I have directed so much of our energy and efforts to finding a small school for Charlie; an educational setting that would be as individualized as possible to his learning needs. Placing him in an autism center that has a quite large population of autistic students and is in a (literally) large space fills us with many qualms, and the latest autism initiatives don't lessen these.

Cardboard for recycling (loaded with help from Charlie) I know I've been focusing my blogging on Charlie's particular school situation and Jim's and my efforts to advocate on his behalf with our school district. Ultimately, this latest effort seems to be one that Jim and I have thrown ourselves into ever since Charlie was diagnosed with autism in 1999. It's never been easy getting Charlie what he needs, let alone figuring this out. And much as I hope that they'll be a place someday for Charlie in California, I've been reminding myself yet again (and been informed by parents of children older than Charlie), the struggle continues and gets harder.

To which I say (after an excellent, if rainy grey and cold Sunday) back home with my boys (they still road bikes and Charlie helped us load up the black car with cardboard for recycling) fine, fine. I'm getting so much practice fighting the good fight, may as well keep honing my skills and expanding on what I've learned. I know I've written it a lot but, once again: Onward.

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Comments
14 Responses to “Back Into It All in New Jersey”
  1. Dwight F says:

    Wow. Reading this post it is so palpable, all the things running through your mind. It’s not just “Charlie” thoughts, everything.
    Onward. But it is easy to get lost in the push Onward. To have our own lives, and we deserve and need that too, swamped by the pursuit of care for our children. I’ve had those days, those weeks. Occasionally those months.
    Please promise me you’ll make time for yourself, to give yourself the room to process all this information and emotion. It isn’t just autistic people that accumulate “busy thoughts”, as we refer to them with G, during periods of great stress. 🙂
    P.S. I respectfully suggest concerns about the direction of The Community should sit somewhere well down the priority list at this point. The Community better damn well be able to survive a week or two without your focus on it or the rest of us would be revealed as slackers. 😉

  2. emma says:

    Wow, a mantatory autism registry I don’t even know where to start with that.
    And separate offices for autism to me just seems to segregate the autistic community more rather than serve it. Too many generalisations can end up being made, limiting the services provided. Services should always be based on the needs of the individual not the diagnosis, but there is no need for me to tell you that.
    I read the following here
    http://www.disabilityscoop.com/2009/10/04/autism-1-in-91/5633/
    “Of parents who said their child had been diagnosed with autism, half indicated their child’s condition was “mild” while one third called it “moderate.” The remaining parents indicated that their child had a “severe” case.
    In about 38 percent of cases parents reported that their child no longer had the diagnosis”
    I’m trying to work out what the “38% no longer had the diagnosis” means, but also this would also invalidate any autsim registry, no?
    Glad to hear the weekend went ok.

  3. Dwight F says:

    Of course if I’ve read you wrong, disregard my post.
    I’ve been busy doing some late work on a project, and just popped over to your blog before retiring to bed. So maybe I’m the one that needs the rest, and I’m just projecting? :O

  4. autismvox says:

    @Dwight F, very glad to read your words (both times)—main concern is Charlie’s situation of course but can’t help thinking about how “other stuff” impinge on things for him, in ways that we suspect and can’t know.
    @Emma, The letter I got from Charlie’s neurologist says that one can choose not to fill out the form so maybe they are retracting about how “mandatory” it is (but I want to reread the letter once again carefully). I’m thinking that an office “only” for autism is _not_ the way to go—it’s more of a way to fragment groups.

  5. emma says:

    By fragmenting groups there impact would be lessened – am I becoming a little paranoid?

  6. farmwifetwo says:

    38% Emma would be like my eldest. As long as his short term recall/memory issues are taken into account he doesn’t require the dx. It is actually mild NLD not mild ASD.
    But w/ poor fine motor and severe claustrophobia w/ the continued ASD dx we get OT to address these. W/out the dx we do not.
    My Family Support Worker (Community living – disability people) says that she’s been told the same more than once lately “I wish my kid had autism” b/c they are refusing service – like OT – for those with the dx (or other dx’s like Down’s, Cerebral palsey etc) not for all who may need it – like those with ADHD.

  7. Dwight F says:

    >> By fragmenting groups there impact would be lessened – am I becoming a little paranoid?
    No, just pragmatic. If there is enough comminatily in goals then together is better.
    >> As long as his short term recall/memory issues are taken into account he doesn’t require the dx.
    Which is to say the dx is roughly as valid as it ever was, right? Setting aside if it every was the “most correct” dx name 😉 it is a flag that there is that extraordinary stuff to be addressed.
    Because that is the purpose of the diagnosis, right? Shorthand for letting others know there is some level of need for the three A’s. Aid, Accomidation, Acceptance. As long as the need for these three A’s are there, it makes sense to keep them.
    I suspect that people might be in a hurry to get rid of the dx. I am uncomfortable with characterizing G as being “disabled” largely because of the baggage society lumps in with that. Although you could argue about whether there is enough of any of them, the mix of Aid is out of wack with Accomidation, and both tend to get dwarfed the level of Acceptance. What is possible in spite of the disability, sometimes because of what inherently comes as part of the disability.
    P.S. I see this as a common issue for all disabilities…except maybe wearing glasses.

  8. Dwight F says:

    >> By fragmenting groups there impact would be lessened – am I becoming a little paranoid?
    No, just pragmatic. If there is enough comminatily in goals then together is better.
    >> As long as his short term recall/memory issues are taken into account he doesn’t require the dx.
    Which is to say the dx is roughly as valid as it ever was, right? Setting aside if it every was the “most correct” dx name 😉 it is a flag that there is that extraordinary stuff to be addressed.
    Because that is the purpose of the diagnosis, right? Shorthand for letting others know there is some level of need for the three A’s. Aid, Accomidation, Acceptance. As long as the need for these three A’s are there, it makes sense to keep them.
    I suspect that people might be in a hurry to get rid of the dx. I am uncomfortable with characterizing G as being “disabled” largely because of the baggage society lumps in with that. Although you could argue about whether there is enough of any of them, the mix of Aid is out of wack with Accomidation, and both tend to get dwarfed the level of Acceptance. What is possible in spite of the disability, sometimes because of what inherently comes as part of the disability.
    P.S. I see this as a common issue for all disabilities…except maybe wearing glasses.

  9. Dwight F says:

    — Now in English!
    Although you could argue about whether there is enough of any of them, especially in specific cases, Aid tends to overshadow the need for Accomidation, and both tend to dwarf the level of Acceptance.

  10. autismvox says:

    Am contemplating your formula…..

  11. Anonymous says:

    So much to respond to and I’ve been away, but it’s good to catch up with you and Charlie and Jim and hooray about the acceptance!
    I did just want to interject that MA created an Autism Division that overlaps with DDS (formerly known as DMR) and far from giving extra resources to kids with ASD, it has become an unfunded backwater. We got amusing simultaneous letters rejecting us from DMR (measured IQ too high despite severe adaptive skill deficits) but accepting us for the Autism Division, and then telling us to call a local agency who then told us they had nothing to offer but their website. Something like 90 kids in all of MA are served by the Autism waiver program which provides home ABA. It’s a joke. Beware Greeks bearing gifts.

  12. autismvox says:

    90 kids in _all_ of MA? And only for ABA—is it known how old these children are? I gather that there’s a desire in NJ to have “one central body” that would consolidate information and be able (it’s theorized) to better disseminate it. That’s the theory!

  13. Bill says:

    I’d be interested to hear what level of detail NJ is going down to with the autism registry. I was at the Autism NJ conference on Sunday and sort of ‘drank the Kool-Aid’ when the state rep at the booth began touting the benefits of having a well counted autism population. But without the details of the individual’s needs and some pretty specific geographic/demographics (stuff that can only be had if you go from the anonymous to ‘public’ mode), it’s hard to see how this database will will equate to better, more targeted services.
    Until we can get to what the individual kids, teenagers and adults need from their state and local governments, we’ll just have a very accurate number…and continued inaccurate and inadequate services for them.
    Keep your chin up and your gloves on, many more rounds to go…

  14. mamacate says:

    Oops, 80 kids. In all of MA. And I misspoke–it’s not just ABA–other types of services can be funded…for these 80 kids. And all under 9.
    http://bit.ly/360DPj
    And I found it all on that same agency’s website! Usually they just send me emails about fundraisers, though they do have a–largely unvetted–resource directory as well. Guess that Autism Division eligibility turned out handy after all! (Oops, my cranky’s showing, isn’t it?)

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