Monday, September 21, 2009

Much Has Changed

Think for a moment about what it's like when you move to a new neighborhood.

When you move in, you're the new ones on the block. As far as you know at the moment, everyone else has been there... forever.

Then of course as you get acquainted, you discover that the retired couple over here have been in their house 40 years, this family over there came ten years ago, that house over there has turned over three times in six years, etc. It was fun for us to eventually learn that our home is built on land that used to be an orchard!

I've been feeling a little bit that way about coming into the disabilities-support system. For anyone coming in new, Birth-to-Three is simply there, free appropriate public education is a right not an innovation, etc.

But, as Barbara wrote in the comments on my last post,
We are less than a generation away from closeting children who were recognized early as different to an attitude where the threshold of good parenting is activism.

It was almost as if she'd been in the LEND seminar presentation this past Friday...

We had three speakers. The first, a social worker, has a younger brother with Down Syndrome born in 1959. The second, a nurse, is guardian to a man with multiple disabilities who is (I think) about my age. The third, a family support staffer, has a daughter with Down Syndrome born in 1988.

When the social worker's brother was born, the latest child in a large Chicago family, moms stayed in the hospital for a week or more after the birth. This mom came home as usual a week later, but the baby didn't -- they were keeping him to "help" mom accept the "inevitable" outcome that baby would be institutionalized his whole life. Mom & Dad eventually said NO and brought him home, and later went on to help found the Mongoloid Development Council, which eventually became the National Association for Down Syndrome. Public school education was almost unthinkable; his good fortune was in his parents, and that the recently-elected President Kennedy had some energy and vision around disabilities on account of his sister Rosemary. He eventually got his education at a new Kennedy school in Chicago, though it did mean living away from home.

The nurse entered the life of the man to whom she serves as guardian when he was 22. For much of the first half of his life he lived in an institution, and in foster care. He did not overlap much with P.L. 94-142, the legislation that first mandated public education for people with disabilities (regulations went on the books in 1977, to be implemented by 1980); however, he did catch the wave of the Medicaid waivers that allowed for long-term care supports in the community, such that though he needs round-the-clock care, he lives in an attractive house next to a park, together with three other men who need a similar level of assistance. He has an impressive array of supports, from job coach to transportation to the continuous onsite care.

The family-support staffer gave birth to her daughter in 1988, the middle child of 3, who was diagnosed with Down Syndrome within a day. Within weeks, they had Early Intervention on their doorstep! That early-childhood support was invaluable, and public education was available as well; however, it was assumed that she would go to a separate school. There was a procedure in place, though seldom used, to get a child "mainstreamed" in the regular school: you had to get the teacher to agree, and that's what they set out to do. The woman who agreed to be this girl's kindergarten teacher had such a wonderful experience with her that she moved up to teaching first grade the next year to accompany her student, and then went back for more schooling to become a special educator! The young lady graduated from high school at 21, and has a job at a local brew-pub. However, she still lives at home, though she would surely be capable of living in the community with the right supports; as she transitioned into adult services in 2007, she got a letter informing the family that the waiting list for "residential placement" was ten years. (Gulp.)

Lots of change. Lots of activism, parental and otherwise.

Lots of work yet to do.


jess said...

thank you so much for the reminder of just how far we've come .. makes me hopeful, actually. if we could make such strides in just a few years, imagine where we can get in just a few more.

mama edge said...

So much has changed for the better, but... 10 YEARS?

Can I get on the waiting list NOW?!

JoyMama said...

mama edge - yeah, I was all over the 10-years thing during the question period. The wait list apparently encompassed both elders and younger people with disabilities; the state of Wisconsin, at least, is attempting to deal with it through the Family Care program, which started up in just a few counties and they've been trying to grow (it's tough right now to grow programs, but that's the attempt.) The respondents to my question made it sounds as if Family Care hadn't been taken into account in that 10-year estimate. Also, I don't know how it works in more emergency situations -- I do know that some friends of mine have a son who could not safely continue at home as he became a big strong adult, and they did get him into a residential placement (I need to learn more details). One thing this program is teaching me is: how much I have to learn!!

Telemommie said...

A couple of comments. We have a similar 10 year waiting list in Texas for some adult services and I just put my almost 5 year old on the list. The wonderful people in my school district let me know I needed to do it now.
I have an uncle with Downs Syndrome who was born in 1959. My grandmother didn't even know he had a problem until he was maybe 6 months old. She lost many friends because she refused to institutionalize him. I have a daughter with Autism Specturm Disorder who was born in 2004. I am so inspired by what my grandmother went through and so thankful that I will never have to fight some of the battles that she did.

JoyMama said...

Hi Telemommie - Wow, so Texas has a waiting list that you can get on early. I will have to explore whether anything like that applies in Wisconsin. It's hard -- at this point, we know so little about who Joy is going to be as an adult! (Or about what services will be like by then, for that matter.)

Congratulations to your grandmother for sticking to a tough and wonderful decision. I hope your uncle is still around and doing OK?

Floortime Lite Mama said...

marvelous post !!
SO glad I found your blog !!
Look forward to coming back

JoyMama said...

Hey K,

Good to "meet" you too! Must check out your blog as well... we seem to hang in the same circles! :)