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Medical debate: Should autism block a man from getting a heart transplant?

15 Aug

Earlier this year a story came out about a child being denied a transplant due to developmental disability. Now we have a story of an autistic adult possibly being denied a heart transplant due to autism. In Medical debate: Should autism block a man from getting a heart transplant? we read:

Twenty-three-year-old Paul Corby has a bad heart and a flawed mind.

The question before doctors now is whether his mental problems – he has a form of autism – are severe enough to make him a bad candidate for a heart transplant.

How characterizing him as having a “flawed mind” is helping, at all, is a good topic for discussion on its own.

Mr. Corby’s mother has started a change.org petition:

My son Paul was denied placement on the heart transplant list because of his mental disability. The doctor was more interested in the fact that he could not name all his medications (he takes 19 at the present time) and the Princess Peach doll he carries for comfort, than the fact that he has never smoked or drank alcohol. Where will the discrimination end?

Paul is a wonderful boy that has taken his mental and physical illness in stride. He has just completed his first novel geared toward preteens. We are now in the process of having it self-published. This is really the only thing that keeps his mind off of his mortality. How do I explain to him why he can’t have a new heart?

Can you help us tell the Transplant Committee they are wrong and he deserves the chance to grow old and watch his two young nephews grow up?

The petition has over 11,000 signatures so far.

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By Matt Carey

Autism Speaks accused of disability discrimination

20 Jul

Michelle Diamond of Disability Scoop has this story: Autism Speaks accused of disability discrimination. The basic story appears to be this:

A single mother, unemployed, applied for a job as a walk director for Autism Speaks. After going through a long interview process she was offered the job. The day before starting she informed Autism Speaks that she needed some accommodation one day a week because of her autistic child– such as a shifted work day or day without pay. Autism Speaks, it is alleged, refused to make an accommodation, so the mother sought and found child care for the day. However, Autism Speaks rescinded the job offer anyway according to the complaint.

Per Disability Scoop:

In her suit, Greggs is seeking compensatory and punitive damages. Nonetheless, she said the legal action is not about money but principle for her. Once a supporter of Autism Speaks, Greggs said she is outraged.

“They say one thing and they do another,” the Upper Marlboro, Md. mom said of the nonprofit. “You can’t say that you’re for helping families with children with autism and then you can’t give me an accommodation.”

When I first heard of this I thought of a previous discussion about Autism Speaks where I noted that at one level it isn’t about who works in every job at Autism Speaks, it’s about getting the job done. That may be a good idea in theory, but examples such as this one, if true, would speak to the need to have members of the community (autistics and parents) throughput the organization.

Disability Scoop has a short quote (one can’t expect a detailed response with pending litigation) from Autism Speaks:

“Autism Speaks is committed to employing parents and other family members of people with autism, as well as individuals on the spectrum,” the organization said.

Again, the full story at Disability Scoop.

By Matt Carey

Chad Jackson starved to death

17 Jul

A recent news story discussed how a mother of autistic adult Chad Jackson was charged with murder. More details are now becoming available. In Autopsy: Adult son with autism starved, we learn that previous to Mr. Jackson starving to death and his doctor had ordered tests performed to determine why he was losing so much wait.

The victim’s doctor told investigators he had ordered blood tests when he became concerned about the amount of weight Chad had lost — but Yodi Jackson never had those tests done.

Yodi Jackson was Chad Jackson’s mother.

–by Matt Carey

Mom charged in death of son with autism

7 Jul

A recent news story, Mom charged in death of son with autism, the discusses how an adult autistic was allegedly murdered by his mother:

She was arraigned the same day on charges of second-degree murder and second-degree felony abuse. Court records reviewed by 24 Hour News 8 indicate she starved her son to death.

The Vulnerable Adult Abuse charge stems from, court records show, Jackson’s “Failure to insure that he (the victim) receive proper nutrition , hydration and or medical care.”

“I just found out. I’m really at awe,” said Jackson’s friend Manda Diskin. “I can’t believe they found enough to charge her with murder.”

The mother’s friend goes on to defend the mother :

“These kids have a lot of ailments that people don’t know,” said Diskin. “Without speaking, they can’t always tell you that they’re in pain. Not having a verbal way to tell someone that you’re hurting. That could happen to anyone with a special needs kid.”

I am having a very hard time understanding that statement. Are we to believe that after 25 years the mother could not tell her son was starving to death because he was non verbal?

Bail in this murder case was set at $10,000. As is common in the United States, the mother was a letter to obtain a bond with 10%.

Second degree murder charge and out with only $1000.

I am at a loss for words.

Join ASAN Seattle in Protesting the Judge Rotenberg Center at the ABAI Convention!

24 May

The Autistic Self Advocacy Network (ASAN) is organizing a protest against the Judge Rotenberg Center.

On Sunday, May 27th, the Association for Behavior Analysis International (ABAI) is holding their annual convention in the city of Seattle, Washington. As they have many times in the past, ABAI is allowing the Judge Rotenberg Center (JRC) to exhibit at their convention this year.
The Judge Rotenberg Center’s use of contingent electric shock, food deprivation, mechanical restraint and other “aversives” have been called out as abusive on multiple occations. In 2010, their practices were  declared torture by the United Nations, which then asked the US government to intervene.  Recent civil litigation has led to renewed media attention from sources ranging from the Boston Globe to Anderson Cooper’s television shows. The United States Department of Justice has targeted the Judge Rotenberg Center in an ongoing investigation of their abusive practices. For decades, disability rights advocates have worked towards one simple goal: shut the Judge Rotenberg Center down.

Still, ABAI hasn’t gotten the message: the Judge Rotenberg Center’s use of torture in the name of treatment should never be given a platform. ABAI needs to disavow the Judge Rotenberg Center and other facilities which use abusive treatments.

The Autistic Self Advocacy Network’s Seattle chapter is mobilizing to tell ABAI that when it comes to the torture of disabled children and adults, the time has come for them to pick a side, condemn the Judge Rotenberg Center and stop giving them a platform.

When: Sunday, May 27th, 2012 at 12 NOON PDT

Where: Washington Convention & Trade Center Downtown

800 Convention Place, Seattle, WA 98101-2350

RSVP on Facebook

With pending legislation in New York and Massachusetts, we are closer now than ever before to ending the Judge Rotenberg Center’s torture of our people. Please show up to the protest and invite others to attend with you.

Places like the Judge Rotenberg Center count on the world not caring about people with disabilities to survive. They count on on society’s unwillingness to open its eyes and see Americans with disabilities as equal citizens deserving of equal rights. This Sunday, let’s prove how wrong they are. Let’s make sure our voices are heard.

Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://autisticadvocacy.org/

ASAN: URGENT! Ask Your Senators to Support a Ban on Aversives!

21 May

The Autistic Self Advocacy Network has called an urgent action alert to call for the ban of aversives in the state of Massachusetts, home of the Judge Rotenberg Center. Residents of Massachusetts can call their state senators and support legislation that could stop the use of aversives.

Ask Your Senators for a
Ban on Aversives in Massachusetts!

Last Friday, Massachusetts State Senator Brian Joyce filed two amendments to the Senate Ways & Means Budget currently pending in the Massachusetts State Senate. One of these amendments calls for a complete ban of aversives – also called “aversive therapy” – while the other would restrict their use. If passed, this would ban or limit the use of practices like the contingent electric shock used at the Judge Rotenberg Center (JRC).

But it takes more than one senator to get an amendment passed. We urge you to contact your Massachusetts State Senator and ask him or her to sign on to the Joyce amendments banning or restricting the use of aversives. But please hurry, the deadline has been extended to noon (12pm EST) on May 23rd!

You can find your Senator’s phone number or email at http://www.malegislature.gov/People/Senate. Because of the urgent deadline, calling their office will be the most effective way to contact them.

Thank you for your support for the rights and safety of Autistics and other people with disabilities in the great state of Massachusetts.

Nothing About Us, Without Us!

Sincerely,
Autistic Self Advocacy Network
http://autisticadvocacy.org/

ASAN: Urge For the Ban on Aversives in Massachusetts!

18 May

This action alert is from ASAN:

Urge For the Ban on Aversives in Massachusetts!

Tomorrow, May 18th, 2012, Massachusetts State Senator Brian Joyce will be filing two amendments to the Senate Ways & Means Budget currently pending in the Massachusetts State Senate. One of these amendments calls for a complete ban of aversives – also called “aversive therapy” – while the other would restrict their use. If passed, this would ban or limit the use of practices like the contingent electric shock used at the Judge Rotenberg Center (JRC).

But it takes more than one senator to get an amendment passed. We urge you to contact your Massachusetts State Senator and ask him or her to sign on to the Joyce amendments banning or restricting the use of aversives. But please hurry- they have to have signed on by the noon (12pm EST), May 18th deadline!

You can find your Senator’s phone number or email at http://www.malegislature.gov/People/Senate. Because of the urgent deadline, calling their office will be the most effective way to contact them.

Thank you for your support for the rights and safety of Autistics and other people with disabilities in the great state of Massachusetts.

Nothing About Us, Without Us!

Sincerely,
Autistic Self Advocacy Network
http://autisticadvocacy.org

The MA State Senate: Please Stop Painful Electric Shocks on Students at JRC in Massachusetts!

30 Apr

A petition is hosted on Change.org: The MA State Senate: Please Stop Painful Electric Shocks on Students at JRC in Massachusetts! The Judge Rotenberg Center uses electric shocks as part of their program for some of the students in their care. The JRC is not allowed to use these aversives on new students, but still continues with students whose programs included them before the order (see Left Brain/Right Brain story: Judge Rotenberg Center banned from shocking new admissions)

The Change.org petition was created by a former JRC employee.

Hi, my name is Gregory Miller. I used to work at a school in Massachusetts named The Judge Rotenberg Center (JRC) where we used powerfully painful electric shock devices (45 – 91 milliamps, at 66 volts) on students to control their behaviors. These devices are much stronger than police stun guns (1-4 milliamps). Unlike stun guns, the electrodes most commonly used at school are spaced 3 – 4 inches apart so that the electrical volts passing through the flesh create the maximum amount of pain with those amps and volts. The United Nations is aware of JRC, has called these shocks at JRC “torture”, and says that “The prohibition of torture is absolute.” Please see the attached video of a student named Andre getting shocked at JRC, covered by Fox News.

Historically, the JRC has been very careful about what information is allowed to be seen by outsiders. Case in point, the video included in the court case which is reported in the video Mr. Miller references (and embedded below). The JRC fought to keep that video from being used in court (see Left Brain/Right Brain story Judge Rotenberg Center: Teen tied and shocked for hours; mom calls it “torture”).

Here is the news video mentioned above. Be forwarned: it is painful to watch. Nothing like what Andre McCollins had to go through.

Mr. McCollins was strapped down, face down, and repeatedly shocked while screaming repeatedly “no” and “help me”.

You can hear the attorney say, “that was shock number 16 or 17, out of 31 that day”. You can see the JRC attorney explaining that “the treatment plan was followed”. Is that really justification for what went on? Not for me. At about 2:10 into the video, you can see him shocked again while at a workstation. The shocks have been called equivalent to a bee sting by JRC personnel. That doesn’t seem like an accurate description to what happened to Mr. mcCollins.

Judge Rotenberg Center: Teen tied and shocked for hours; mom calls it “torture”

20 Feb

From a tip by Massachusetts Students United Against The Judge Rotenberg Center (A Facebook group) comes this story at Fox News in Boston: Teen tied and shocked for hours; mom calls it “torture”

(FOX 25 / MyFoxBoston.com) – Video of a disabled teen tied down and given painful electric shocks for seven hours should be made public, the youth’s mother said, so everyone can see what she describes as the “torture” her son went through at the controversial school, the only one in Massachusetts that uses pain to treat its clients.

“This is worse than a nightmare,” Cheryl McCollins said about her disabled son, Andre. “It is horrific. And poor Andre, who had to suffer through this, and not know why.”

The ordeal began after Andre hit a staff member. Inside a classroom, as a camera was recording, he was tied to a restraint board, face down, a helmet over his head.

He stayed like that for seven hours without a break, no food, no water, or trips to the bathroom. Each time he screamed or tensed up, he was shocked, 31 times in all. His mother called the next day to check on him.

“I said, ‘Andre.’ I said, ‘Hello.’ And so he said, ‘Help me,'” McCollins said.

“help me”

Andre spent 7 hours strapped to a board, shocked 31 times. As a result he ended up hospitalized. The mother wants the video of the incident made public. JRC wants to keep the video sealed.

The full story is here and Here is the video of the news report from Fox News:

http://www.myfoxboston.com/video/videoplayer.swf?dppversion=11212

Teen tied and shocked for hours; mom calls it “torture”: MyFoxBOSTON.com

Follow up on Redwood City special ed teacher story

16 Feb

Last week I wrote about a news story: Redwood City teacher accused of slapping, kicking special needs students. If you are reading this, I would urge you to read two posts by Shannon Des Roches Rosa. On BlogHer: Alleged Special Ed Abuse and the Court of Public Opinion and on Squidalicious: Fair Witness. Ms. Rosa knows the teacher in question quite well.

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