Comments on: Institutionalization Wasn’t So Long Ago

By: Regan

Regan — Thu, 20 Nov 2008 08:51:22 +0000

Placement is a set of services, not a "place". If only it was as straightforward as "small setting better than large facility". Death of Developmentally Disabled Man Exemplifies Need for Proper Care Whether in Institutions or Community Based Settings in California Jan 2007 "The Sacramento Bee reported in a front page story on the controversies raised by the death of Donald Santiago, a person with developmental disabilities who for over 40 years lived in a state owned and operated institution (Agnews Developmental Center in San Jose), now slated for closure in mid 2008. Santiago was placed in a community-based state licensed facility [Justin's Home, Union City] in 2005, and passed away December 11, 2006 [of untreated pneumonia]. The article, by Sacramento Bee reporter Clea Benson, reports the conflicts raised by different advocates on how Santiago was placed, and appropriate level of his care - and the appropriate response (or lack of response) to his illness..."

By: What’s in an autism diagnosis?: Changes in DSM-V ahead

What’s in an autism diagnosis?: Changes in DSM-V ahead — Thu, 20 Nov 2008 06:21:38 +0000

[...] about the need for including autistic individuals in schools and communities and not shutting them away in institutions; about my own experience taking care of my son and our search for the right school for him; about a [...]

By: Phil Schwarz

Phil Schwarz — Tue, 18 Nov 2008 06:41:07 +0000

And as for “not so long ago” — try last week:

From: Polyxane Cobb
Sent: Thu, 13 Nov 2008 7:24 am
Subject: JRC [Judge Rotenberg Center] advertising on classical radio station!

Dear Friends,
My son, Ethan, a classical music fan, listens to WCRB-FM every morning. They are the only commercial classical music station in the
greater Boston area. This morning, to my complete horror, they ran an ad from JRC, advertising to parents of young people who are autistic, mentally challenged, refusing to go the school, difficult to handle, etc… that they can provide and loving and safe learning environment
without the use of psychiatric drugs. My screams of dismay blocked out the rest.
I am emailing this to a select group of folks,/ You all have email lists of other advocates and champions, student groups, and legal advocates. I urge you to contact your members and urge them to flood the station with complaints. This is their online CONTACTS page link:

http://www.wcrb.com/page.php?page_id=7288

JRC is not yet listed on their SPONSORS page, but other local companies are — companies with which your members might be doing business. Perhaps they are unaware that they are sharing advertising space with JRC. Perhaps they should also know. This is their SPONSORS page:

http://www.wcrb.com/page.php?page_id=8556

Poly Cobb

By: Regan

Regan — Mon, 17 Nov 2008 21:08:42 +0000

Phil Schwarz,
Thank you.

Tabulating the numbers was quite eye opening.

By: Regan

Regan — Mon, 17 Nov 2008 20:54:35 +0000

I was a highschool freshman when the Willowbrook story broke and it made me disturbed and sick to read about the conditions that children and those with disabilities would be made to live in, with the sick irony of the lovely name of the “state school”.

Look up “Willowbrook State School” on Wikipedia for the rather sordid history of this facility, including using the residents as human guinea pigs to test treatments for hepatitis in the 1960’s.

“…Many of the patients [at Willowbrook] have diseases and defects that will ultimately kill them. Some die of other causes: ten years ago, a measles epidemic swept through the institution and killed 250. Of the 125 patients who died of various causes during 1970, nine choked on their own vomit before attendants could reach them.

Conditions at Willowbrook were not always like this; seven years ago they were even worse…”

Human Warehouse
Time Magazine
Feb. 14, 1972

By: Kristina Chew, PhD

Kristina Chew, PhD — Mon, 17 Nov 2008 06:33:33 +0000

thanks, Bonnie, I haven’t written about Willowbrook yet, need to—-and think we need to remember about these places so the likes of them are not considered “options.”

By: Phil Schwarz

Phil Schwarz — Mon, 17 Nov 2008 06:26:41 +0000

Regan: excellent point.
One part of the “hidden horde” languished and died nameless at institutions like these.

By: Bonnie Sayers

Bonnie Sayers — Mon, 17 Nov 2008 00:04:27 +0000

Have you written about the Geraldo show that will take place on Jan 9th the anniversary of his willowbrook show. It is one hr and ARC is working on getting stories and videos:

http://www.arc-nebraska.org/Geraldo%20Rivera%20Takes%20on%20the%20Waiting%20List%20Crisis!.htm

By: Mrs. C

Mrs. C — Sun, 16 Nov 2008 19:32:32 +0000

I wonder how those who were confined to these “cages” were able to adjust… or if they were able… when the homes worked more with the patients leading a more active life.

I hope things like this never happen to my Woodjie or your Charlie. *sniff*

By: Regan

Regan — Sun, 16 Nov 2008 01:41:33 +0000

I had a comment, with citations and somewhat more data, that the spam filter doesn’t like, but the nutshell version is that the number of under 21’s in large DD institutions has changed thusly,
In 1965–91,592. In 2004–1,771.