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July 2012 Newsletter

From The Board: The Work Goes On…

by Ari Ne’eman

Summer is in full swing and so is the disability rights movement. In response to attacks against the Americans with Disabilities Act, leading national disability organizations have declared a national boycott against hotels with inaccessible pools. Recently, the Senate Health, Education, Labor and Pensions (HELP) Committee held hearings on stopping restraint and seclusion in public schools, a key priority for ASAN and other disability rights groups. Earlier this month, ASAN launched an action alert telling the Department of Health and Human Services to stop using “creative accounting” to monkey around with how autism research dollars are tracked.

All of these issues and many more represent important steps forward in ensuring that our rights as Autistics and individuals with disabilities are respected. The road is long and hard, but we won’t give up until we gain recognition and respect as the equals of any other American. Despite the difficulties posed by this civil rights struggle, more people continue to join the fight. Next month, eighteen Autistic college students will travel to Baltimore to participate in our exciting new Summer Leadership Academy. Participants will receive advocacy and systems change training from national disability rights leaders from both ASAN and allied groups like ADAPT. Afterwards, they will return to their colleges and universities, ready to spread the word about disability rights and help to build more inclusive higher education experiences for all students.

All in all, the movement grows and the work goes on. As a community, we know that we have many challenges to face. As Autistic people and members of the disability community, we face discrimination, prejudice and bigotry in many aspects of our daily life. Still, we know that progress can and is being made. We hope you’ll consider being a part of that progress by becoming an ASAN member, joining a chapter near you, volunteering to help out or making a donation. Every day presents a new opportunity to make a difference.

Impact of Health Care Ruling

by Meg Evans

The U.S. Supreme Court’s recent decision largely upholding the constitutionality of the Affordable Care Act came as a relief to many in the disability community.  The Affordable Care Act makes health care more accessible to people with disabilities by preventing insurers from discriminating against individuals with pre-existing conditions and by expanding the Medicaid program.  The Autistic Self Advocacy Network supported the federal government’s passage of the act in 2010.

Under the Affordable Care Act, insurers may not deny coverage to any person because of his or her medical condition or history.  In addition, insurers must use community rating as the basis for determining premium charges, which effectively ends the practice of charging higher premiums to those with pre-existing conditions.  Prior to the act’s passage, young adults with disabilities often had great difficulty getting into the workforce.  Taking a job with a small business that did not provide health insurance would result in losing Medicaid coverage and being unable to buy health insurance on the open market.  The Supreme Court’s ruling means that disabled workers will no longer find themselves forced to choose between employment and health care.

The court’s decision also means that federal matching funds for new Medicaid state options supporting community living will continue to be available.  This increased funding provides long-term services and supports to enable those currently receiving institutional care to transition into home and community-based settings, while also making it possible for many people to receive the services and supports needed to remain in the community.

Adopting new eligibility criteria to allow people to earn more while remaining on Medicaid will remain an option for the states.  The court concluded that requiring the states to adopt the new criteria, or lose Medicaid funding if they did not, was beyond the scope of the federal government’s authority and encroached upon state powers.  Because increasing the number of Medicaid recipients by adopting the relaxed criteria will allow states to gain additional federal funding, many states may choose to do so, even though the federal government cannot make it mandatory.

Disability and Human Rights Advocates from Around the World Seek to Close the Judge Rotenberg Center

by Shain Neumeier, J.D.

In April of this year, the Judge Rotenberg Center’s use of electric shock and other highly painful and restrictive forms of behavioral modification on autistic people and other people with disabilities gained worldwide attention when a video was released showing one of its former students, Andre McCollins, receiving numerous shocks while tied facedown to a restraint board.  What followed from this was not only a medical malpractice lawsuit against JRC by Andre’s mother, Cheryl McCollins, but also renewed efforts to totally ban its practices and, ultimately, shut it down.  Media coverage and advocacy through demonstrations and social networking websites led to over a quarter of a million people around the world signing petitions to end the use of aversives at JRC.

On June 2, an advocacy group called Occupy the  Judge Rotenberg Center held a protest in front of the Massachusetts State House and then in front of JRC’s campus in Canton, MA itself in order to urge an end to aversives and the closure of JRC.  Autistic self-advocates, psychiatric survivors and other human rights supporters attended from across the country, bringing the number of participants to over a hundred in spite of the heavy rain.  Speakers at the event in front of the State House included Massachusetts Senator Brian Joyce, who has long sought to ban the use of aversives; Kathryn Whitehead, Executive Director of the Community Alliance for the Ethical Treatment of Youth; Daniel Fisher, of the National Empowerment Center; and ASAN’s own Executive Director, Ari Ne’eman.  A substantial number of the protesters, including those from ASAN, continued on with the demonstration in front of JRC, from which the students had evidently been removed for the day in preparation for the event.

The same day, as local news stations were broadcasting footage of the rally that night, the United Nations declared for a second time that JRC’s use of electric shock and long-term restraints violated international human rights protections against torture.  U.N. Special Rapporteur on Torture Juan Mendez, himself a survivor of torture, called for the United States Senate to investigate, and for the U.S. government as a whole to take action on, this issue.  Possibly in response to this, or possibly because of the two bills up for vote in the U.S. Congress relating to the use of aversives in public schools and private programs, a Senate hearing is being held on this subject in the Health, Education, Labor & Pensions Committee on July 12 in Washington, D.C.  Around the same time, CNN reporter Anderson Cooper revealed through his coverage of the controversy surrounding JRC that two other investigations of the program are also in progress, one by the Department of Justice and the other by the Food and Drug Administration.

Autistic self-advocates and allies also took part in efforts to pass an aversives ban in Massachusetts that would effectively make it impossible for JRC to operate as it does.  On two occasions, former JRC staff member Greg Miller and Cheryl McCollins, along with self-advocates from ASAN including Emily Titon, Kevin Barrett and Shain Neumeier, delivered copies of hundreds of thousands of online petitions from around the world to the Massachusetts State House calling for an end to the shocks.  In particular, on the second visit to the State House on June 20th, the group was specifically advocating for the passage of Senate Budget Amendment #548, which would impose a complete ban on aversives including but not limited to electric shock on people with disabilities in all programs within the state.  A conference committee of six legislators considered this, as well as a compromise amendment that would impose only a prospective ban while allowing current JRC students to continue to be shocked, in deciding whether to approve the state budget.  In order to urge the passage of the complete ban, advocates presented legislative aides, as well as the media, with not only the footage of Andre McCollins being shocked, but also photographs of burn wounds caused by electric shock and copies of the behavioral recording sheets from JRC showing that these methods were being used for mere noncompliance rather than to address dangerous behaviors as JRC has claimed.  Cheryl McCollins and Greg Miller publicly challenged these legislators to try the shock themselves in order to better decide whether they would allow it to continue to be used on children and people with disabilities.

Unfortunately, even with all of the available information, the legislative conference committee failed to pass either the complete ban under Amendment #548 or the partial ban.  While there are bills before the entire Massachusetts legislature that would accomplish the same things that the amendments would have, it is likely that these will also not pass, in large part due to the fact that several key members of the House of Representatives, including Speaker of the House Robert DeLeo, are opposed to restricting or shutting down JRC.  Similarly, in New York, a bill that would have prohibited the state from sending any children to a program in or out of state that used aversives failed to pass before the legislative session ended.  Nonetheless, Governor Andrew Cuomo, who has recently pioneered new efforts in New York to prevent the abuse and neglect of people with disabilities, can single-handedly enact such a prohibition if he should choose to do so.  Because approximately half of JRC’s student body is from New York, the effect of such a prohibition would be significant, and could potentially even shut JRC down.

On August 9, Occupy the Judge Rotenberg Center will be holding a third demonstration, this time at the Capitol in Albany, New York, in order to urge Governor Cuomo to enact the same ban that the state legislature was unable to pass.  Self-advocates and allies are strongly encouraged to attend, and more details on the event will be released as the day draws closer.

Researchers Studying Health and Safety

AASPIRE Research TeamA team of researchers in Oregon and Montana is studying the health and safety experiences of people with developmental disabilities and how their various experiences affect their health. The Oregon research team includes faculty and students from Portland State University and Oregon Health & Science University, leaders from Self Advocates As Leaders (SAAL) and Autistic Self Advocacy Network (ASAN), and additional self-advocates, family members, and disability service providers. The Montana research team includes faculty and students from the University of Montana, people with intellectual and other developmental disabilities, family members, disability service providers, and representatives from Bitterroot People First and Summit Independent Living Center.

Other studies have found that people with developmental disabilities are more likely to be in unsafe situations than people without disabilities. However, this is the first study that is directly surveying people with developmental disabilities about various aspects of personal safety and their health.

The research team designed a survey about health and safety that is understandable to people with many kinds of disabilities, such as autism, intellectual disability, epilepsy, and cerebral palsy. Then they designed a computer program that makes the survey accessible by speaking the questions out loud, giving definitions for complicated words, or showing a sign language interpreter asking the questions.

About 400 adults with developmental disabilities in Oregon and Montana are taking the survey. The results will be available to other researchers, disability leaders, and health care providers within the next year. Sherri Osburn, an Oregon researcher from SAAL, says she hopes the survey is understandable and what we learn will benefit people with disabilities. Rosemary Hughes, one of the Montana researchers, sums up the “Nothing About Us Us” approach of the study this way, “Our partners from the developmental disabilities community are directly involved in all parts of this study. They have helped make sure that their peers can understand the words and questions in the survey.” For more information, please contact Mary Oschwald at oschwald@pdx.edu or (503) 725-9602, or Marsha Katz at mrkatz@ruralinstitute.umt.edu or (406) 243-2151.

Election Day is Tuesday, November 6th – Will You Be Allowed to Vote?

The election is coming up! Make sure you are registered to vote, and make sure your vote will count!

In many states, there are new rules that require you to bring a photo ID to the polls. If you do not have identification with your photograph that comes from the government, you may not be allowed to vote. Many people in our community do not drive, and so we do not have drivers’ licenses (the most common form of photo ID).

This new requirement is being challenged in court. Nonetheless, the rules may still be in place in many states when the election arrives.

Here are the states where we expect voters will be asked for a form of government issued photo ID in the next election: Alabama, Florida, Georgia, Indiana, Kansas, Mississippi, Pennsylvania, and Tennessee.

If you live in one of these states, and you need information on how to register to vote, OR whether you willl have the right form of identification to vote, here are our options:

  1. Call 1-800-OUR-VOTE (1-800-687-8683) – they can give you information on how to register to vote, where to vote, and what kind of ID you needOR
  2. Call ASAN’s own Melody Latimer – 1-202-630-7477 or email: mlatimer@autisticadvocacy.org

If you do not have government ID with your photograph on it, and you live in Alabama, Florida, Georgia, Indiana, Kansas, Mississippi, Pennsylvania, and Tennesse – tell Melody!

We want to help, and we want to make sure you can vote.

Advocacy and News Updates

Autism Speaks is Sued for Discrimination

In early May 2012, Simone Greggs ready to start a job with Autism Speaks asked for a job accommodation. Her Autistic teenager went to a school that ended early on Wednesdays. Ms. Greggs, a single mother, asked to adjust her Wednesday schedule to allow her to pick her son up. This request was denied, but that day, she found childcare.

However, the next day, Ms. Greggs had the job rescinded during a conference call with several executives and human resources personnel. According to the complaint,  they stated “that they were rescinding the employment offer because they did not want to make any accommodations for the care of her Autistic child.” Read more.

Keeping All Students Safe Act Hearing

On July 12, the Senate Health, Education, Labor and Pensions committee convened a hearing on preventing restraint and seclusion. 19 states currently have no policies, laws or guidelines in place on the use of restraints in schools. In 2010, the Government Accountability Office (GAO) found that students with disabilities were subjected to restraint even in nonviolent situations and often without the consent of their parents. Furthermore, the GAO report showed that students with disabilities were at a much higher risk of being restrained than their typical peers.

The Autistic Self Advocacy Network calls for the swift passage of S.2020 and HR.1381. Too long have the abuses of restraints, seclusion and aversives been allowed in our schools. The Keeping All Students Safe Act would prevent school personnel from using, seclusion, mechanical or chemical restraints, aversive behavioral interventions that compromise student health and safety, and physical restraint. Physical restraints would be allowed in cases of physically threatening situations.

Artist Corner

On A Spectrum

by Vorya Yarow

No dog for him –
He loved it too much
All he wanted was to be with it
It was not fair to his father and mother and little brother
No girl next door –
he was getting too attached
No mirrors –
he was too fond of that little boy in it
And now his shadow –
the last remaining friend
How do you rid him of it?
His loving parents would like to know –
For his own good.

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