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Judge Rotenberg Center lobbies against seclusion and restraint bill

14 Nov

The Judge Rotenberg Center (JRC) is a special needs school which employs controversial behavior modification techiniques, including electric shock. The JRC has been the focus of much criticism for this practice, which is illegal in many (possibly most) states. Even its home state of Massachusetts has made, and continues to make, efforts to curb this practice.

In Judge Rotenberg Center lobbies D.C. against bill, the Canton Journal (a local newspaper for the JRC) notes that the JRC is lobbying to stop state legislation and federal legislation:

As the Judge Rotenberg Center in Canton gears up to oppose new state regulations that limit the use of controversial shock treatment, the school is also covering its bases in Washington.

So far this year, the Judge Rotenberg Center has paid $16,500 to Malkin & Ross, a New York-based lobbying firm, according to recent lobbying reports filed with the secretary of the Senate.

This lobbying effort includes targeting a seclusion and restraint bill:

A bill filed by Rep. George Miller, D-Calif., now the senior Democrat on the House Education and the Workforce Committee, would ban the use of physical restraint and seclusion in schools. The bill is co-sponsored by 27 Democrats, including Rep. John Tierney, D-Salem, and one Republican.

Seclusion and restraint legislation has been a major focus of autism organizations as diverse as the National Autism Association and the Autistic Self Advocacy Network.

The Miller seclusion and restraint bill, House Resolution 1381, includes language calling for children to have the right to be “Free from physical or mental abuse, aversive behavioral interventions that compromise health and safety…”

(2) Behavioral interventions for children must promote the right of all children to be treated with dignity. All children have the right to be free from physical or mental abuse, aversive behavioral interventions that compromise health and safety, and any physical restraint or seclusion imposed solely for purposes of discipline or convenience.

and specifically call for the prohibition of restraints and aversives that “compromise health and safety”:

(1) School personnel shall be prohibited from imposing on any student the following:

(A) Mechanical restraints.

(B) Chemical restraints.

(C) Physical restraint or physical escort that restricts breathing.

(D) Aversive behavioral interventions that compromise health and safety.

I guess rather than argue that their methods do not “compromise health and safety”, JRC would prefer to quash this bill. Unfortunately, JRC may get their wish. H.R. 1381 appears to be stalled, with no actions taken since it was referred to committee in March.

Autism and SSRI’s: preliminary data but good enough for attorneys

8 Sep

Recently, an article in the Archives of General Psychiatry raised the question of whether SSRI’s (selective seratonin reuptake inhibitors) might increase the risk of autism. The paper, Antidepressant Use During Pregnancy and Childhood Autism Spectrum Disorders, came from the Kaiser Permanente research group.

The study was relatively small, as you can see from the results (20 case children and 50 controls):

Results Prenatal exposure to antidepressant medications was reported for 20 case children (6.7%) and 50 control children (3.3%). In adjusted logistic regression models, we found a 2-fold increased risk of ASD associated with treatment with selective serotonin reuptake inhibitors by the mother during the year before delivery (adjusted odds ratio, 2.2 [95% confidence interval, 1.2-4.3]), with the strongest effect associated with treatment during the first trimester (adjusted odds ratio, 3.8 [95% confidence interval, 1.8-7.8]). No increase in risk was found for mothers with a history of mental health treatment in the absence of prenatal exposure to selective serotonin reuptake inhibitors.

But it indicated the possibility of a higher risk. Here’s the conclusion from the abstract of that paper:

Conclusion Although the number of children exposed prenatally to selective serotonin reuptake inhibitors in this population was low, results suggest that exposure, especially during the first trimester, may modestly increase the risk of ASD. The potential risk associated with exposure must be balanced with the risk to the mother or fetus of untreated mental health disorders. Further studies are needed to replicate and extend these findings.

It is a rather guarded conclusion, with “further studies are needed…”

When CNN covered the story, they interviewed the lead author:

“This is the first study of its kind to look at the association, and the findings have to be interpreted with a lot of caution,” she says. “We can’t detect causality from one study.”

This paper came out July 4th.

Here we are, two months later, and what do I find in a recent google search? A nice big ad for attorney’s looking to build a class action lawsuit. I won’t link to the site, but here are some paragraphs from their page:

New research demonstrates that mothers who take SSRI (selective serotonin reuptake inhibitor) antidepressants while pregnant have a greatly increased risk of having a child with an Autism Spectrum Disorder.

“Greatly increased” risk. No guarded language here. No “further studies”. No “modestly increase”.

And, there is the pain…to the parent…that should be compensated:

Having a child with an Autism Spectrum Disorder can be stressful, both emotionally and financially. An autistic child may require expensive treatments, therapy, and special education. This can put a high emotional and financial toll on a family with an autistic child.

America. Land of the lawsuit.

Letter to Massachusetts DDS Commissioner Urging Elimination of Electric Shock, Other Aversives

19 Jul

The National Council on Disability (NCD) has sent a letter to the Massachusetts Department of Developmental Services Commissioner on electric shocks and other aversives. Massachusetts is the home of the Judge Rotenberg Center which uses electric shocks as a main part of their program.

July 18, 2011

Elin Howe, Commissioner
Department of Developmental Services
500 Harrison Avenue
Boston, Massachusetts 02118

COMMENTS OF THE NATIONAL COUNCIL ON DISABILITY IN SUPPORT OF PROPOSED AMENDMENTS TO REGULATIONS ON BEHAVIOR MODIFICATION AT 115 CMR 5.14[i]

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other Federal agencies regarding laws, policies, practices, and procedures affecting people with disabilities. NCD strongly opposes the use of aversive treatments and accordingly submits these comments.

NCD has a longstanding history of opposing aversive treatments.[ii] As stated in NCD’s 1995 Report Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children,

While it is possible to understand the desperation of these parents, to share their exasperation with ineffective programs and treatments, and to sympathize with them in their frustration to locate appropriate programs, there are limits to what society can permit in the name of treatment. There are those in our society who would advocate for severe physical punishment or even the mutilation of prisoners convicted of what everyone would agree are heinous crimes. Yet these prisoners are afforded protection under the law from this treatment, even though there are those who would claim that such treatment would “teach them a lesson.” Students with severe behavioral disabilities are not criminals, and yet present law allows them to be subjected to procedures which cannot be used on the most hardened criminals, or, in some cases, even on animals.[iii]

NCD applauds the Massachusetts Department of Developmental Services (DDS) for taking steps toward drastically restricting use of aversive punishment, and we urge complete elimination of such methods. The use of electric shock is not a legitimate method of treatment for any person. Such measures – whose use against non-disabled individuals is already recognized as illegal and immoral – are contrary to the letter and the spirit of the Americans with Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act. We urge the Department of Developmental Services to protect both future students and current ones from the use of contingent electric shock and all other such aversive techniques.

In light of the effect on children and youth and with disabilities nationwide, NCD is gravely concerned by the use of aversive treatments at the Judge Rotenberg Center (JRC), in Canton, Massachusetts — the only known school in the United States to provide such treatment. We are aware that students from an estimated 17 other states and the District of Columbia attend JRC and are therefore potential recipients of such aversive treatments.[iv] As such, NCD views this as a significant issue of national importance.

The treatment being provided at JRC is contrary to federal policy and the findings of mental health research. The 2003 President’s New Freedom Commission on Mental Health stated that restraint will be used only as safety interventions of last resort, not as treatment interventions.[v] Similarly, the US Department of Health and Human Services Substance Abuse (HHS) and Mental Health Administration (SAMHSA) has found that seclusion and restraints are detrimental to the recovery of persons with mental illnesses.[vi]

The practices of JRC are equally contrary to the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) which states in part:

“…The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that… meet minimum standards relating to- provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population… and prohibition of the use of such restraint and seclusion as a punishment or as a substitute for a habilitation program…” (emphasis added).[vii]

The objectionable practices at JRC have not only attracted national attention but have also been scrutinized internationally. According to the United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, “. . . the term torture means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted . . . for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with consent or acquiescence of a public official or other person acting in an official capacity.”[viii]

In April 2010, Disability Rights International (formerly Mental Disability Rights International) issued an urgent appeal to the United Nations Special Rapporteur on Torture concerning the practices at JRC.[ix] Subsequently, in June 2010, the United Nations Special Rapporteur on Torture stated that the practices of the Judge Rotenberg Center in Canton, Massachusetts equate to torture and urged the US government to appeal.[x] The US Department of Justice (DOJ) is now investigating these, and other, allegations.[xi]

The regulations proposed by the Department of Developmental Services (DDS) send a strong message that aversive treatment should not be readily provided, but they must go further. It is critical that the DDS address the concerns identified here and supplement its regulations accordingly.

Thank you for considering our comments and recommendations. NCD stands ready to assist you in ways that our collaboration can best benefit students with disabilities and their families while promoting safe learning environments for all students across America. We are available to discuss these matters at your earliest convenience. Please contact me through NCD’s offices at (202) 272-2004.

Respectfully,

Ari Ne’eman
Policy and Program Evaluation Committee Chair
National Council on Disability

[i] With thanks to NCD Council Member Marylyn Howe and NCD Staff Robyn Powell for their invaluable support and assistance in research and drafting.

[ii] National Council on Disability, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves (2002), available at http://www.ncd.gov/publications/2000/Jan202000; National Council on Disability, Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children (1995), available at http://www.ncd.gov/publications/1995/09051995.

[iii] Id.

[iv] CNN, New York Education Officials Ban Shock Therapy (2006), available at http://articles.cnn.com/2006-06-21/politics/shock.therapy.school_1_shock-therapy-electric-shock-geds?_s=PM:EDUCATION.

[v] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at http://www.disabilityrightsintl.org/wordpress/wp-content/uploads/USReportandUrgentAppeal.pdf.

[vi] Id.

[vii] 42 U.S.C. § 15009(a)(3)(B)(i-iii) (2000).

[viii] UN General Assembly, Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Article 1(1), 10 December 1984, United Nations, Treaty Series, vol. 1465, p. 85, available at http://www.unhcr.org/refworld/docid/3ae6b3a94.html.

[ix] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at http://www.disabilityrightsintl.org/wordpress/wp-content/uploads/USReportandUrgentAppeal.pdf.

[x] ABC News/Nightline, UN Calls Treatment at Mass. School ‘Torture’ (2010), available at http://abcnews.go.com/Nightline/shock-therapy-massachussetts-school/story?id=11047334.

[xi] US Department of Justice, Assistant Attorney General for the Civil Rights Division Thomas E. Perez Speaks at the National Council on Independent Living Annual Conference (2010), available at http://www.justice.gov/crt/opa/pr/speeches/2010/crt-speech-100719.html.

Disabled Children: A Legal Handbook

13 Jun

This for UK parents only but if you are such – its free for PDF download from here

ACTION ALERT: What Does Community Mean To You? Let Medicaid Know!

11 Jun

Here is an action alert from the Autistic Self Advocacy Network (ASAN)

What does community mean to you? For some people, this question doesn’t mean much but for the hundreds of thousands of Americans receiving Medicaid Home and Community Based Services (HCBS), the meaning of community has huge implications. Last year, the State of Missouri attempted to use Medicaid dollars allocated to serving individuals with disabilities in the community for the construction of group homes on the grounds of an institution. The Center for Medicare and Medicaid Services (CMS) quite rightly refused to allow Missouri to use Medicaid HCBS funding for this plan, as the purpose of the HCBS program is to help people avoid institutionalization, not to support settings that further segregate people from their communities.

Now our friends at CMS are trying to put in place strong minimum standards for HCBS settings, to prevent what almost happened in Missouri from occurring in the future. CMS has proposed regulations which would prevent HCBS dollars going to institutional facilities, settings which are on the grounds of an institution, settings which are segregated on the basis of disability and settings which have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep. This is an unprecedented opportunity for the disability community to support a real minimum standard for community living.

We need your help to make these standards a reality. CMS’ proposed rulemaking (available here) is only open for comments for four more days (it closes this Tuesday, June 14th at 5 PM) and we know that the usual suspects in the institution and nursing home industry have already written in opposing any standards for how HCBS dollars are used. We need people to write in to tell CMS that community living does not occur on the grounds of an institution and doesn’t include arbitrary restrictions on the rights of people with disabilities.

Here’s what you can do:

1. Write in to CMS and tell them that you SUPPORT the proposed rulemaking by going to: http://www.regulations.gov/#!submitComment;D=CMS-2009-0071-0302

2. Don’t hesitate to add in your thoughts about what Community should mean and make suggestions about things that CMS could add to their proposed rulemaking. If you’re looking for ideas, don’t hesitate to use ASAN’s comments as an example. You can feel free to use our language if it makes it easier. Our comments are available here: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=153

3. Send a copy of this advocacy alert to your friends and colleagues encouraging them to write in too – the more people who write in – be they people with disabilities, parents, professionals or just supportive allies – the stronger our position will be. Help us get the word out!

Remember to write in by THIS TUESDAY June 14th at 5 PM. This is a critical opportunity to have our voices heard and we shouldn’t let it pass us by. Remember, Nothing About Us, Without Us!

Regards,
The Autistic Self Advocacy Network

Panorama captures torture and abuse in UK care homes

1 Jun

I try and watch programmes about special needs issues if I can. It helps to stay abreast of the latest issues in the wider special needs community.

However, last nights Panorma I had already decided I simply couldn’t watch.

In one scene in the programme, a male support worker seems to goad a female patient to throw herself out of a second-floor window. He says: “Go on, do it now I’m here. I’d love to see you try it: you will go flying. … When you hit the floor, do you reckon you will make a thud or a splat?”

In another scene, a second male support worker is seen to act as a Nazi camp commandant, repeatedly slapping a patient across the face with a pair of leather gloves and saying: “Nein, nein, nein!”

Staff, sometimes with qualified nurses watching, used forms of restraint that an expert described as closer to martial arts rather than any approved technique. A female patient is seen pinned beneath a chair for more than 30 minutes with one support worker sitting in the chair and keeping his foot on her wrist, while a second worker kneels on her legs.

Source.

The patients in this case are mentally ill people, people with learning difficulties and people with autism.

What I did watch – for awhile – was the Twitter stream of people reacting to the programme but when it became clear that the programme was just as awful as I thought it might be I simply had to turn that off too.

Maybe you’re stronger than me. If so, theres an example of the sort of thing Panorama captured here.

Whether you watch it or don’t, pass it on to others to watch. Maybe those who aren’t aware will realise that for those of us with friends and relatives with special needs, this issue is of paramount importance.

AutismOne: Don’t snark on me…we’ve got security and police!

28 May

Remember Jamie Bernstein? Her site, hug me, I’m vaccinated, should give you an idea of her stance. She’s the woman who took a picture with Andrew Wakefield at his big rally last year, and slipped him a note that said

Dear Andrew Wakefield,

I know that you truly believe that what you are doing is helping people and that the ends justify the means, but I just want you to know that the things you are doing –- the actions you have taken in the past have hurt people –- killed people. Your work has scared and manipulated parents into not vaccinating their children, putting them and their entire community at risk, all in the name of safety. Children have died because of you. I just want to make sure that you fully understand that.

Sincerely,
Jamie

It turns out that Ms. Bernstein attended AutismOne this year. AutismOne is a parent conference that promotes, amongst other things, the vaccine-injury model of autism. Last year they gave Andrew Wakefield an award–after he was struck off the register in the UK for ethics violations. This year they are hosting talks by Mark and David Geier, the father-son team that has recently run afoul of the medical authorities in their home state of Maryland. To be clear, the Geiers are frequent annual speakers at AutismOne.

Ms. Bernstein was live tweeting the conference. Yes, she has a viewpoint different than the conference organizers. And, she was with Ken Reibel, a journalist who was ejected a few years back for asking a question of Terry Poling (mother of Hannah Poling).

The response by AutismOne?

It apparently takes 3 security guards and 4 police officers to kick me out. Did I mention I did nothing wrong? #antivaxcon

Yep. 3 security guards and 4 police officers.

Why did they stop there? She is obviously a very imposing figure. She’s the one on the left:

OK, they hooked me. I decided to check out the live stream. I joined 39 other people watching Mark Blaxill tell us the same old mercury story.

The hotel security had no comment, but forwarded me to the Lombard police. Lombard police would not comment either.

The message is clear: don’t show up to AutismOne if you aren’t on board with their message. They will not ask you to leave, they will call in the police.

Matthew Israel avoids prison – just

25 May

According to the Boston Globe, Matthew Israel will step down from the Judge Rotenberg Center as part of a package to avoid doing jail time.

The founder of the controversial Judge Rotenberg Educational Center is scheduled to face criminal charges in Dedham today arising from a night in 2007 when two special needs teenagers at the center were wrongfully administered dozens of electrical shocks…In a deal reached with the state attorney general’s office, Matthew Israel, 77, is expected to be spared prison time in return for stepping down from the Canton-based center that he founded 40 years ago and accepting a five-year probationary term…The charges against Israel are believed to be related to the destruction of some of the center’s digital surveillance tapes that would have showed what occurred the night of Aug. 26, 2007

Shame. If anyone deserves jail time its Matthew Israel.

Autism vs Symptoms of Autism Part II

25 May

If this is the case it is rather hard to see what we are arguing about. With all the semantic ingenuity in the world children on the autistic spectrum are surely autistic and so are children who have autistic behaviour.

So states John Stone on Age of Autism.

Its meant to point out to us the linguistic convolutions some people go to in order to seperate people who have autism and people who display autistic symptoms. We’re meant to roll our eyes on this stupidity.

But I can’t. Because its not stupid. Because there _is_ a difference between having enough of the symptoms to qualify for a diagnosis of autism and _not_ having enough of the symptoms of autism to qualify for a diagnosis of autism. In one scenario a person has autism as medically defined. In the other scenario, they don’t.

Far from John Stones ‘semantic ingenuity’, what we are in fact talking about is ‘semantic precision’. Lots of people display some of the symptoms of autism yet simply don’t have enough to get a diagnosis. This phenomenom has even got a name: Broader Autism Phenotype. In a paper from as long ago as 1997, the authors states:

Studies of families ascertained through a single autistic proband suggest that the genetic liability for autism may be expressed in nonautistic relatives in a phenotype that is milder but qualitatively similar to the defining features of autism.

Note the use of the word qualitatively there. In that, people with enough symptoms have autism share qualities with those who don’t.

Autism has a long and painful history of being sculpted into a set of beliefs that reflect the position of the believer rather than the objective truth of the matter. The thing is, we _have_ an objective (if medical) truth on the matter, its set down in the DSM or the ICD, pick your poison. John Stone is merely the latest in a long line of people who want autistic people to be ambiguous enough to reflect their beliefs. However, by its very definition, you cannot _be_ autistic (again medically speaking) if you don’t meet the criteria, or even _enough_ of the criteria.

I see nothing of semantic igenuity in this. Stone is, of course, attempting to whip up support for the latest terrible study – this one legal – that claims to have found 83 people compensated for autism via vaccine injury. When you apply John Stone et al’s loose, ambiguous definition of what autism medically is then they’re quite right. Thing is, I suspect I, John Stone and various others could all show _some_ symptoms of autism. Much trickier is to display _enough_ symptoms of autism to be diagnosed as autistic. Something I think about 1% of these 83 were. In other words, no different in amount than the rest of any other population.

PACE study confirms autism prevalence

11 May

The legal study published by anti-vaxxers and law students yesterday claims that 80 cases show definite autism. If we accept that as true (which I don’t, but there we go) this is an autism prevalence amongst the population of claimants of just over 3%. As we all know, a recent study puts the Korean prevalence as just under 3%. Close enough on behalf of the legal claims, when we allow for their dodgy definitions to be a match.

Or maybe we can be a little more exact. As Kim Wombles noted yesterday, 39 cases confirmed beyond parental anecdote equals a prevalence of 1.5%. Half a percentage over the UK official prevalence.

So what does this mean? It basically means that all things being equal, whichever prevalence figures you like to use (Korean or UK), this law study shows that amongst the population of claimants, there are no more autistic people than one would expect.

But surely, what we should be looking at is if vaccines caused autism in these cases?

OK, lets do that (thanks to Sullivan for spotting these):

From the paper:

[R]espondent’s report. . .suggests vaguely. . .that Kenny’s problems ‘can be attributed in part to other causes such as a family history of epilepsy, autism and tonsillar hypotrophy. . .Dr. Spiro did not even purport to know what did cause Kenny’s seizure disorder;? his basic point was that in his view the DTP did not cause it.”

From the case notes:

In this regard, respondent’s report (filed September 7, 1990) suggests vaguely (p. 5) that Kenny’s problems “can be attributed in part to other causes such as a family history [*18] of epilepsy, autism and tonsillar hypotrophy.” But in the attached expert report, upon which respondent based that assertion, Dr. Spiro candidly admitted (p. 2) that he can only “speculate” as to such possibilities. And certainly at the hearing, Dr. Spiro did not even purport to know what did cause Kenny’s seizure disorder; his basic point was that in his view the DTP did not cause it.

While Dr. Kaufhold notes Dr. Schmidt’s initial impression of infantile autism, she does not list autism among her impressions, but rather says Travis is significantly developmentally delayed to a degree not yet ascertained. Other medical personnel appear to use the term “autism” or “autistic” synonymously with “aphasia” or the absence of the ability
to speak. See, e.g., Pet. Ex. 7 at 148; Pet. Ex. 7 at 208; Pet. Ex. 7 at 393.

Here is an interesting statement:

While Dr. Schultz believes that Travis suffers from some autistic-like features, he does not now nor has he ever believed that Travis suffers from true autism.

In this case, Dr. Schultz is the doctor of the petitioner: Travis Underwood. Travis is child 7 in the PACE table. Here is how Holland et al. quoted that decision:

“In addition, respondent noted that Travis’ medical records indicate that he suffered from mental retardation and autism. These conditions, according to respondent, are not related to the residual seizure disorder.”

Dr. Schultz also said:

Moreover, Dr. Schultz testified that Travis is distinguishable from children with true autism because he (1) seeks affection; (2) makes eye contact; (3) doesn’t require sameness in routine as usually found with autistic children; and (4) doesn’t engage in twirling, flinging and other self-stimulatory behaviors to the same degree as autistic children.

So, next time someone tells you ‘autistic-like’ features or ‘features of autism’ are the same things as autism, tell them to look at the cases in question.

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