Comments on: What’s Going to Happen After I’m Gone?

By: Regan

Regan — Fri, 26 Sep 2008 09:00:09 +0000

This story was posted in the Schafer newsletter I thought the concept was interesting but don't have knowledge of how well the model and these communities work in real day-to-day--does anyone have first hand knowledge about L'Arche? Farm cultivates a sense of community Seattle, The News Tribune L'Arche International" Just FYI.

By: Regan

Regan — Fri, 26 Sep 2008 08:57:04 +0000

Kristina,
Sorry about taking so long to read the link, but my thoughts is that it does sum up our experience with the Swiss health system–granted that I still have questions as to what is encompassed in specific content of intervention and supports for those with autism and related disabilities.
Regardless, there was an interesting quote in the article that you pointed me to. From discussions that I had with some Swiss about the social support system, I think that it may be a fair representation of the mindset, or at least parallels that of those we talked to.

“Worth The Cost
“Yet Rappaz looks puzzled when asked about people in the United States who say that it would be intrusive to mandate health insurance.

“I’m not sure that I get you,” she says, cocking her head.

When the question is put another way, she laughs. “Oh, I see. That’s really an American question. You are so used to having this individualistic way of thinking, and that’s why you don’t have these social [safety] nets. You still have this pioneer mentality where everyone has to take care of themselves.”

That’s not how people in Switzerland think about it, she says. That pioneer mentality, “is good for people who have no problems, but there are a bunch of people who … need a social net.

“I’m really happy to give part of my salary to a solidarity system,” she says.”

By: Kristina Chew, PhD

Kristina Chew, PhD — Sun, 10 Aug 2008 21:17:01 +0000

@Regan, The first thing that comes to my mind is the sheer size difference of Switzerland to the US---i think it's been easier in some ways for us to figure out things in New Jersey because it's a relatively small state, vs. California (not that it's not possible). And maybe we'll be in California someday and have to negotiate such a huge state and state government and its agencies. A previous story about Switzerland's heath care system as a potential model for the US's. Some information on health care in Switzerland from the Organisation for Economic Co-operation and Development.

By: Kristina Chew, PhD

Kristina Chew, PhD — Sun, 10 Aug 2008 20:24:07 +0000

@Maureen, I had the same puzzlement about the assumptions of the other family, and questions about how they’d gotten to that point—–surely we need to band together as we share more than we sometimes feel.

By: Regan

Regan — Sun, 10 Aug 2008 19:47:48 +0000

Does anyone have perspective or information on the accuracy of this story?
Having lived in Switzerland, my perspective is that baseline social services and supports are better coordinated than here, but I don’t know the quality in re: specialized services or overall disability rights record.
In Switzerland, An Easier Path For The Disabled
Morning Edition
7/31/08

By: Phil Schwarz

Phil Schwarz — Thu, 07 Aug 2008 05:32:56 +0000

As usual, Harold Doherty arrogates to himself standing he in no way has, to tell other people falsehoods about what I say and mean.

He does this with others he regards as “opposition”, too. With predictable regularity.

He only damages his own credibility by doing so.

By: Maureen

Maureen — Tue, 22 Jul 2008 00:06:24 +0000

What concerns me about the Bauer article is the assumptions she makes about the family down the street. She hasn’t met them so she doesn’t know if living at home is what everyone involved wants–perhaps that young man has been on a waiting list for years for a supported living arrangment, perhaps his family spent years battling their school district for services, perhaps they gave up on SSI or DDD services because after all the redtape and paperwork the services weren’t worth the extra work…

I am concerned that there is this misbelief that it is only difficult to get services if your child is on the spectrum… trust me it is difficult ALL over and we should be working TOGETHER to improve services and supports for ALL children and adults with disabilities regardless of diagnosis, not pointing fingers that we believe that the family down the street has it easier.

By: C. S. Wyatt

C. S. Wyatt — Sun, 20 Jul 2008 22:41:00 +0000

@Doherty, et al…

You are reading this as “black and white” when it is not, and that is not the reading Mr. Schwarz was intending. He was simply indicating that we spend so much energy on “cures” and the ubiquitous vaccine debates that we are not dealing with the “here and now” of autism.

That parents with a diagnosis of Down Syndrome are selecting to terminate does worry someone like myself. It means that parents might someday terminate people like me.

I am often non-verbal. My wife would probably argue (as many others might) that living independently is a stretch for me. It certainly will always help to have reminders of what I should be doing and when.

A simple test for genes can lead to “false positives” or mild cases being eliminated. That’s a lousy thought and a real fear.

By: Kristina Chew, PhD

Kristina Chew, PhD — Sun, 20 Jul 2008 18:11:13 +0000

@Harold L. Doherty,

Glad to know we’re in it all together.

By: Harold L Doherty

Harold L Doherty — Sun, 20 Jul 2008 13:37:50 +0000

Phil Schwartz said:

“Don’t wait until your children age into adulthood to come to this realization. Connect with, and get on the same side as the self-advocates regarding adult-living issues”

Mr Schwartz most parents are all too aware of the adult realities that face their autistic children when they are gone. Neither you, nor Ms Chew have discovered this reality. See the Chicago Sun-Times “Ultimate Autism Reality – Who Will Care For My Autistic Son When I Am Dead?”

http://www.suntimes.com/news/metro/blogentries/index.html?bbPostId=CzDMaRud1QrjpBDjpgmuOeQ59Cz9BpOMRZSZgwBB506ZBLS8bS&bbParentWidgetId=B8wu4iZ7dr873Su

You insist that parents make false and unnecessary choices when you argue that they should not seek cures and treatments. Some parents seek cures, treatments, education, recreational care, residential care, occupational opportunities and a host of other means of helping their children.

When you lecture parents to get on the same side as the self-advocates regarding adult-living issues you are telling them to agree with the articulate high functioning autistics and persons with Aspergers. You are telling them, yet again, to assume that the high functioning persons face the same realities as the persons with severe low functioning autistic disorder. They do not and they do not speak for my son amongst others.

My son is 12 and he is severely autistic. He will not be living an independent life when I am dead. I faced that reality long ago and I am working hard to make changes in the real world to address those realities. Just as I worked hard to ensure that autistic children in New Brunswick received evidence based early intervention from trained service providers, autism trained Teacher Aides and Resource Teachers in our schools, and tertiary care health services for severely autistic children who injure themselves seriously.

Ms Chew is free to place her child’s future well being in the hands of autistic self advocates. Perhaps her son is doing so well that his interests will align with theirs. But for many that will not be true and the interests of the self advocates will not be their interests. Whether your ideology recognizes these facts or not is immaterial. Caring parents will look after their children to the best of their ability and will not “connect” their children to strangers with different realities, interests and agendas.