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Robert Saylor’s death ruled homicide

19 Feb

A gentleman with Down Syndrome went to the movies recently. When the movie was finished, he decided to stay to see it again. In other words, he did not get out of his seat; he did not buy a new ticket. The theater has security guards. Three of them.  Off duty police who were in police uniforms.  All three were called in to deal with this gentleman who would not get out of his seat.

The gentleman, Robert Saylor, died of asphyxiation.

Yes, for “resisting arrest” the off-duty police used enough force to result in the death of the gentleman. Because he wouldn’t buy an $11 ticket.

More at:

Autopsy finds that Md. man with Down syndrome died of asphyxia while in police custody

Robert Saylor death ruled a homicide

By Matt Carey

NCD Response to the State of the Union Address

18 Feb

The U.S. National Council on Disability (NCD) has issued a response to the State of the Union address presented by President Obama recently. I am presenting it in its entirety below:

In the annual State of the Union address, President Barack Obama addressed several policy areas of importance to the 56 million Americans with disabilities and their families. As the independent federal agency which advises the President and Congress on disability policy, the National Council on Disability (NCD) applauds the significant agenda proposed by the President and recommends the following actions to guarantee full participation and integration in all aspects of society for Americans with disabilities.

The President called for an increase in the minimum wage to $9.00 an hour by stating “in the wealthiest nation on Earth, no one who works full-time should have to live in poverty.”

NCD agrees. In 2010, statistics released by the U.S. Census Bureau revealed that nearly 28 percent of Americans with disabilities aged 18 to 64 live in poverty.

Today, hundreds of thousands of Americans with disabilities earn less than minimum wage under a little-known relic of employment policy that assumed people with disabilities were not capable of meaningful, competitive employment.

As the President said, “America is not a place where chance of birth or circumstance should decide our destiny. And that is why we need to build new ladders of opportunity into the middle class for all who are willing to climb them.”

Twenty three years after the passage of the Americans with Disabilities Act, the time has come for minimum wage to be available to everyone who works, including Americans with disabilities. Over a quarter of a million Americans with disabilities work under the Fair Labor Standards Act 14 (c) program resigning people with disabilities to earning less than minimum wages and the poverty, isolation and segregation that often results.

In our August 2012 Report on Subminimum Wage and Supported Employment, NCD recommended a gradual phase out of the 14 (c) program. The ladders our nation builds to opportunity must be accessible to every American – including those with disabilities. As America works toward increasing minimum wage, implementation of a comprehensive set of supports and targeted investments in integrated employment services to make it possible for people with disabilities to rise to the same heights as other Americans must also be assured.

In addition, the President announced a non-partisan commission to improve voting in America by emphasizing “our most fundamental right as citizens: the right to vote. When any Americans … are denied that right … we are betraying our ideals.” A Fact Sheet on the Voting Commission issued by the White House lists voters with disabilities and “physical barriers” among the issues to be corrected.

NCD appreciates inclusion of the difficulties faced by voters with disabilities as part of the Commission’s work. A Government Accountability Office (GAO) report found as recently as 2008, only 27 percent of polling places were barrier-free. In fact, the Federal Election Commission confirmed that, in violation of state and federal laws, more than 20,000 polling places across the nation are inaccessible, depriving Americans with disabilities of their fundamental right to vote. People with disabilities and senior citizens are particularly disenfranchised by long lines at polling places and by constraints on and, in some places, the discontinuation of early voting.

To address this disparity, NCD has been collecting the experiences of voters with disabilities in the November 2012 General Election from across the nation in coordination with the National Disability Rights Network and EIN SOF Communications. NCD will issue a report on our findings later this year.

NCD urges the Voting Commission to consider the findings of our upcoming report and to include voters with disabilities on their Commission.

The President also stressed the importance of key reforms to realize cost savings in the Medicare program, including the shift from a fee for service payment system to a managed care model designed to pay for performance. NCD understands the importance of shifting to payment models that both manage costs and increase quality for our health care financing infrastructure. However, it is crucial that people with disabilities and seniors retain the ability to have their needs met.

Over the last two years, NCD has conducted a detailed exploration of managed care within Medicaid, issuing comprehensive recommendations on due process safeguards, program design, performance measures and other facets of responsible managed care frameworks that consider the needs of Americans with disabilities without causing adverse consequences on the quality of care we receive. As the Administration considers various measures to enhance health care quality while controlling costs, NCD stands ready to apply this expertise to Medicare reforms.

As President Obama affirmed, “the responsibility of improving this union remains the task of us all.” NCD looks to continuing its role in developing and promoting robust disability policies in close collaboration with the Administration, Congress and the public.

— Jeff Rosen, Chairperson
On behalf of the National Council on Disability

By Matt Carey

Via Autistic Hoya: Judge Rotenberg Center Survivor’s Letter

10 Feb

The Judge Rotenberg Center (JRC) is a school for autistic students which incorporates aversives into the program for some of their students. These aversives are electric shocks delivered via remote-control to packs the students wear 24/7.

The JRC has been the focus of a great deal of criticism. To put it mildly. JRC has repeatedly described the shocks in relatively mild terms. Autistic Hoya (whose blog I highly recommend) has an article which includes a letter from a JRC survivor. I do not have permission from the author to copy the letter here, so I will send you to her site. With the warning that this is not an easy letter to read:

Judge Rotenberg Center Survivor’s Letter

By Matt Carey

Action Alert: Call today to support The Convention on the Rights of Persons with Disabilities!

27 Nov

The action alert below is from The Arc:

Action Alert: Call today to support The Convention on the Rights of Persons with Disabilities!
Take Action!

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is being brought to the U.S. Senate floor this week. We are nearing a vote, as Senate Majority Leader Harry Reid (D-NV) indicated he will bring the treaty up to begin debate during Executive Session within the next few days.  The Arc has been working with numerous other disability advocacy groups to garner support for ratifying the treaty, which will promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities.  This vote is the culmination of months of advocacy work by advocates like you and we need your help to ensure ratification.

It is important for you to contact your Senators today and let them know that you support CRPD. We need every U.S. Senator to be contacted and to know that the disability community is leading the charge for U.S. ratification of this international disability treaty. Our voice matters.

Get your friends, family, and work colleagues to make calls and use social media today to show support! Click on the “take action” link at the top of the page to get started.

You can find phone and email contact information for your Senators here, and Twitter IDs for your Senators here (Tweet using #CRPD #UNCRPD).

Tell your Senators:

I am a person with a disability (I am a family member/friend/supporter of a person with a disability) and I want to see the Senator vote in support of the CRPD this year!

The CRPD will not cost the Federal Government any additional funds.

The CRPD has been reviewed by both Republican and Democratic Attorneys General and by past Counsel to Presidents.  They confirm that it does not threaten the sovereignty of the U.S. nor does it require any new legislation to comply with the treaty. 

This treaty is good for American business and for the world.  It will allow us to bring our knowledge of making a society accessible to the whole world.

MOST IMPORTANTLY – This treaty is very important to the U.S. disability community! Following U.S. ratification of the treaty, U.S. leadership will help raise accessibility around the world, directly helping Americans with disabilities who live, work, or travel abroad.  

Sample Tweet : @(SenatorID) Vote to support the #CRPD #UNCRPD!  This is a #disability issue and we say vote YES!

Sample Twitpic:

By Matt Carey

Aging with intellectual disability

26 Nov

Care for the developmentally disabled has improved over recent generations and life and expectancy has increased. As a result, issues surrounding old age need more attention. Two studies out recently open the dialogue in two areas: hospice care and retirement options.

Advanced age and end of life concerns present areas often not focused upon by parent advocates with developmentally disabled children. There are many issues which are more immediate and time and energy are limited. But few parents will be present to advocate for their own children at end of life. These are prime examples of where listening to adults with DD and helping them advocate for changes will pay off in a better life for our kids.

Here are the abstracts:

Unique and universal barriers: hospice care for aging adults with intellectual disability.

Friedman SL, Helm DT, Woodman AC.

Abstract As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.

PMID: 23167489 [PubMed – in process]

8. Am J Intellect Dev Disabil. 2012 Nov;117(6):497-508. doi: 10.1352/1944-7558-117-6.497.

Active aging for individuals with intellectual disability: meaningful community participation through employment, retirement, service, and volunteerism.

Fesko SL, Hall AC, Quinlan J, Jockell C.

Abstract As individuals with intellectual and developmental disabilities become more engaged in community employment, it will be critical to consider how their employment experience changes as they age. Similar to other seniors, individuals will need to consider whether they want to maintain their employment, reduce their work commitment, or retire completely. If they do choose to retire, what activities will they choose to engage in, and what service or supports might be necessary? This article considers the issues faced by all aging workers in regard to retirement planning and active aging as well as specific strategies for individuals with intellectual and developmental disabilities to remain active and engaged. Recommendations for service options, policy consideration, and future research are also discussed.

PMID: 23167488 [PubMed – in process]
9. Am J Intellect Dev Disabil. 2012 Nov;117(6):455-63. doi: 10.1352/1944-7558-117.6.455

Autism Hearing? Let yourself be heard

21 Nov

It has been reported that a hearing of the Committee On Oversight & Government Reform will held on autism on November 29th:

The panel, chaired by Rep. Darrell Issa (D-Calif.), has invited witnesses from the National Institutes of Health and the Centers for Disease Control and Prevention, as well as Autism Speaks and other advocacy groups.

Autism Speaks appears to be confirming this meeting is being set up.

There hasn’t been such a hearing in many years (think a decade). The previous hearings were held by Congressman Dan Burton, who was a major proponent of the idea that vaccines were causing an epidemic of autism. Congressman Burton is retiring, and the focus of the meeting is likely not going to be as strongly vaccine oriented in the past, but that will likely be a discussion point. From what I’ve been able to gather, so far the meeting will include no Autistic representatives nor Autistic-run organizations.

Should the meeting happen (it isn’t on the calendar for the Committee yet), wouldn’t you like the opportunity to have your views heard? One can fax the Committee, but they are not under an obligation to include public comments. I say this not to dissuade you from sending a comment, but, instead, to encourage you to ask strongly that your comments be included.

I have set up a website which will allow you to easily send a fax to the committee. Follow this link and you will have a form which you can fill out and send your message. The form is very basic (here is a screenshot). The message you send will be emailed to you and emailed to a fax server which will send it to the committee’s fax number. (alternatively, you can fax them directly at (202) 225-3974).

In my opinion, U.S. Autism policy affects communities the whole world over. As such, I would encourage international readers of Left Brain/Right Brain to submit comments as well. Consider making it clear that you are from outside the U.S..

Privacy issues: the site sends two emails. One to the email address you give and the other to a server which will send the faxes. I have access to the logs on that server and, for some time, I can read the faxes sent. But I don’t.

You are free to chose your talking points. Here are some of mine:

1) We need focus on improving the quality of life of Autistics
2) While not all Autistics can self-advocate, if we are going to have autism organizations represented, we need to have Autistic-run organizations represented.
3) Autism is a very broad spectrum, all with challenges of some sort. The government’s response needs to be broad (read-larger than it is now) in order to encompass all the needs of these communities.
4) The vaccine-epidemic hypothesis has been very damaging to the autism communities. Please don’t allow this meeting to be a way around the science in order to keep that idea alive.
5) There are faux therapies in common use for autism. Many are harmless. Some are dangerous and based on incredibly poor science. We need to get accurate information out about these practices.

The fax is very basic. Here is a copy of one I sent earlier this week. I redacted my phone number and email address, but those will be included in the fax you send (note that those are voluntary fields. In other words, you can leave the phone number and city/state boxes blank).

Again, take a moment or take longer and put together a comment for the Committee. Follow this link and fill out the form and send a fax.

ARC: Action Alert: Call Today and Help Protect Federal Disability Programs

20 Sep

Last year the United States legislature avoided tough decisions by putting automatic spending cuts into the budget. The phrase “kick the can down the road” was common in the press in discussing the budget negotiations which were ongoing and now we are “down the road”: those cuts are slated to start in 2013. After the elections, I’ll point out. Discretionary programs will see substantial cuts unless the law is changed. Discretionary programs include special education and services for the disabled.

The ARC has put out an action alert to gather support to change the law to reduce those cuts:

Call Today: Help Protect Federal Disability Programs Take Action!
Today is Non-Defense Discretionary (NDD) Call Day

Take Action!


While The Arc has been successful so far in its advocacy to prevent cuts to the Medicaid program, many other essential programs are facing severe reductions. The federal discretionary programs that people with disabilities rely upon to live in the community (early intervention, special education, supported employment, housing, transportation, and more) are slated for unprecedented cuts starting in 2013.

Last year’s Budget Control Act (BCA) will require non-defense discretionary programs to be cut dramatically, unless Congress changes the law. First, they will be cut by about 6% over a decade through the BCA’s spending caps. Then they are scheduled to be cut by an additional 8 % through the BCA’s across-the-board cuts (known as “sequestration”) starting in early 2013. The individual programs we care most about could possibly be cut by even greater amounts or eliminated entirely!

Examples of individual programs that could be cut are:

IDEA State Grant that assists the states in meeting the costs of providing special education and related services to children with disabilities.

DD Act Projects of National Significance (PNS) that enhance the independence, productivity, inclusion, and integration of people with developmental disabilities.

CDC National Center on Birth Defects and Developmental Disabilities that sponsors research and interventions to help children with disabilities to develop and reach their full potential, and promotes health and well-being among people of all ages with disabilities.

Section 811 Supportive Housing for People with Disabilities that creates affordable, accessible housing for low-income non-elderly people with the most serious disabilities to help them live independently in the community.

Take Action

Please call your Members of Congress and remind them of the importance of these critical programs. Click on the Take Action link above to get your Members’ office phone numbers.

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

21 Aug

The concepts of neurodiversity are not complex and yet are often misunderstood and misrepresented. Respect is not a difficult concept. The need for research to respect those who are the focus is not difficult.  Respect includes aknowleging that disability does not disenfranchise a person from her human rights. Respect means including the views and opinions of those involved in the research, even if they are intellectually disabled.

Consider this recent study:

“We want respect”: adults with intellectual and developmental disabilities address respect in research.

Abstract Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

For emphasis: ” . Findings are consistent with disability rights’ ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity.”

Call it “human rights and dignity” and it isn’t a controversial concept. It may not be always followed but it isn’t controversial. Call it “neurodiversity” and somehow it’s a big deal.

One of the misconceptions I’ve read is that neurodiversity is a topic for so-called “high functioning” autistics. Many comments have come through this site calling my child “high functioning” because of the views expressed here. (Those commenters assumed incorrectly).  Here’a something to consider: the study noted above not only focuses on people with intellectual disability, it makes no mention of autism in the abstract.   The study did not even come through in my daily email of pubmed autism abstracts.

How Americans would slim down public education

12 Aug

With economic troubles in the U.S. and worldwide continuing for years, schools are facing tough decisions.  A recent survey, How Americans would slim down public education, in the U.S. taps into the public’s support for education in general and also for special education. 

With budget shortfalls predicted for schools (at least in the area I know best: California) people are thinking of how to react in case of budget shortfalls.  There is no support for increasing taxes to support schools, instead “dramatically changing how [schools] do business”:

End Business as Usual
Which would be the best approach for your district to take if it was facing a serious budget deficit?

48% Cut costs by dramatically changing how it does business.

26% Change as little as possible; wait for times to get better

11% Rely on tax increases

7%  Something else

8%  Don’t know

Which begs the question of how dramatic changes might affect special education.  While there is broad support for special education, there is a strong sentiment that there are children in special ed who do not belong:

When it comes to budget cuts, special education is not immune as far as most Americans are concerned. That’s not to say the commitment of Americans to educate children with special needs is waning—it’s not. But they have concerns about the growth, cost, and effectiveness of serving these kids well.

The overwhelming majority of the public, 83 percent, believes that “the public schools have a moral obligation to educate kids with special needs and learning disabilities, even if it’s more difficult and expensive to do so.”

76 percent believe that “too many students are being mislabeled as having special needs when they just have behavior problems or weren’t taught well in the first place.”

71 percent believe that special education programs should be “evaluated according to whether they help students learn—when students don’t learn, the programs should be replaced

The public is split on supporting the law’s provisions that cost should not be a factor in deciding a special education placement:

According to federal law, districts are required to provide special education services, but they are not allowed to consider the costs of those services. Do you think districts should be allowed to weigh costs when considering which special education services to choose, or do you think the law should be left as is?

44 Districts should be allowed to weigh costs when considering which special education services to choose

47 The law should be left as is

9 [Vol.] Don’t know

There is a lot more discussion in the report on ways schools could (e.g. cut pay, change retirement) and should not (e.g. lay off faculty) reduce costs. More can be found in the report.

Most people think that their schools are an asset to thrir community , but also that the schools have been hit hard by the recession and (77%) that the financial problems will last a long time.

By Matt Carey

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 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!

Autistic Self Advocacy Network