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March 2012 Newsletter

From The Board

by Ari Ne’eman

As you’ve most likely noticed by now, ASAN has recently unveiled a new website with a new look. We’re excited to share with you the new image of our organization – just as we’ve grown and developed over the years into a stronger, more powerful mechanism to amplify our community’s voice, we felt it was past time to update our online presence to reflect that. Our new website will better highlight the work we’re doing and serve as an easier way for folks to find out where we stand on the issues, what we’re doing to help empower our people and what you can do to help. Yet, though some things change, others stay the same – we’re still committed to the same values of community inclusion, neurodiversity and disability as part of human diversity that we always have been.

Growth brings with it new and interesting challenges. Many organizations lose focus when they grow larger, moving their energy from advancing their mission to trying to bring in money and grow in size. There’s nothing wrong with working to raise money to keep the lights on, but it is always important to remember that an advocacy organization’s primary emphasis needs to be serving the community. Over the course of the last year and a half, as we’ve transitioned from an all-volunteer organization to one with staff and an office, we’ve always kept in mind how important it is that we stay true to what we believe in, no matter what. We’ve tried to reflect that commitment with the new website – not only can visitors officially join ASAN’s membership, you can also indicate your interest in volunteering, learn about the latest action alerts and advocacy issues or check out our constantly updating list of upcoming chapter meetings and events for something in your area. It is all part of keeping our focus on being transparent and accessible to those we serve – Autistic people and our allies.

Finally, because we’re launching our new look right before April – a month dedicated to autism awareness that is all too often focused primarily on stereotypes and pity-mongering – we’re kicking things off with a bang. In honor of Autism Acceptance Month – an Autistic community answer to unsatisfactory and often offensive “awareness” efforts – we will be running blog posts over the course of the month of April focused on showing what autism acceptance means to Autistic people and our friends, allies and supportive family members. We hope you’ll take some time to check it out. Nothing About Us, Without Us!

 

In France, Autistic Treatment Still Leaves Much to be Desired

by Tracy Garza

What is it going to take to make inclusive education finally available to autistic children in the country of “Liberté, Egalité et Fraternité”?

Almost nine years after a decision by the European Committee of Social Rights stating that “France was found to have failed to fulfill its educational obligations to people with autism under the European Social Charter,” not much appears to have changed. (The original statement by the Council of Europe is available at http://www.autismeurope.org/files/files/aevsfrance.pdf.)

The controversy has reignited more recently thanks to Sophie Roberts’ recent documentary, “Le Mur” (“The Wall”), which exposed the apparent failures of the French psychiatric establishment.

Speaking to the media, Roberts has explained that in France, the most prevalent version of psychoanalysis takes it as a given that autism and other conditions are likely caused by children’s relationship with their mothers, or by the so-called “maternal madness.”

“Many mothers here live in fear of the social services,” Roberts told The New York Times in a recent interview. “If you refuse psychoanalysis for your child, they say: ‘You’re refusing care,’ and they can put the kid in an asylum if they want.” (http://www.nytimes.com/2012/01/20/health/film-about-treatment-of-autism-strongly-criticized-in-france.html)

Autistic self-advocates around the world would like to voice their support for France to move toward more inclusive education and community-based service provision for Autistic adults and children, as well as those with other disabilities.

There may be some reason to hope that things are starting to change. Prime Minister François Fillon announced in early February he had asked for a new plan on autism, known as “Grande cause nationale 2012,” as part of “a collective effort and a national mobilization to change our viewpoint” on autism, according the French daily Le Point. (http://www.lepoint.fr/societe/francois-fillon-annonce-un-nouveau-plan-autisme-09-02-2012-1429192_23.php)

The new plan, Fillon said, “will continue the effort to catch up on the implementation of new structures of care,” according to Le Point. He also criticized the method of “packing,” which had been used in France since the 1980s.

“No one can accept that today in France, to continue having treatments that are not respectful of people’s dignity and rights,” he was quoted as saying.

Le packing, as the name suggests, originated in France, and its use is generally believed to be confined to France and other French-speaking areas.

As described by the Neuroskeptic blog, “this alleged therapy consists of wrapping the patient (wearing only underclothes or naked in the case of young children) several times a week during weeks or months in towels soaked in cold water. The individual is wrapped with blankets to help the body warm up in a process lasting 45 minutes, during which time the child or adolescent is accompanied by two to four staff persons.” (http://neuroskeptic.blogspot.com/2011/01/packing-autistic-kids-french-scandal.html) This “therapy” can continue for months, or even years.

Critics have described “packing” as being inhuman, degrading, and bordering on torture – on top of there being no scientific evidence of any effectiveness.

“It is a kind of aggression against somebody who cannot respond or defend themselves,” a shocked French psychiatrist told The Lancet medical journal, asking to remain nameless. She said the parents could be placed in a difficult position, because demand for places for Autistic children at day hospitals or therapy centers in France often outstrips supply. “They may be afraid that by saying no, and opposing the doctor’s recommendations, they will jeopardize their child’s place,” she told The Lancet. (http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(07)61322-1/fulltext#)

As of mid-March, the only concrete advance was an announcement by the Higher Health Authority (HAS) and the National Agency for the Evaluation and Quality of Hospital, Social and Health-Social Services (ANSEM) opposing the use of packing. It remained unclear whether the government had any specific plans to monitor or punish those who continued using the practice on French children.

Whether or not Prime Minister Fillon’s promises turn out to be the start of more appropriate intervention for Autistic children in France still remains to be seen. In the meantime, it can only be hoped that pressure from the international community continues to press for more humane and appropriate care.

 

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French Government Responds to Torture Charges

Editorial addition by Meg Evans

On February 23, Disability Rights International charged that many publicly run French psychiatric hospitals were committing acts of torture by subjecting Autistic children and others to “packing,” which consists of wrapping a naked or near-naked child in cold wet sheets so tightly that the child cannot move, and which has no scientific basis whatsoever as a form of therapy.

The French government responded in early March by stating that it opposed the use of packing. Two health care agencies cited ethical concerns and lack of effectiveness data as grounds for ending the practice.  To ensure that all facilities fully comply with the agencies’ directive, monitoring and enforcement regulations will need to be implemented.

 

Call for Stories: Seclusion and Restraint

by Emily Titon

TASH, a leading national advocacy organization for people with disabilities, has been working very hard to end the abusive practices of seclusion and restraint. One of the biggest stumbling blocks to ending the use of these practices is the all-too-common misconception that restraint and seclusion are the only solutions for some children and adults – those who self-harm or are thought to be at risk of harming others. People with this misconception may insist, “What alternatives are there? And the people learn from it.”

To combat this dangerous belief, TASH is looking for first-person accounts of seclusion and restraint by those who have been secluded or restrained. It is our belief and experience that people, exposed to the truth by those who have lived it, do quickly come to realize that seclusion and restraint are harmful and that the only things people learn are passivity, compliance, not to speak out against injustices they see done to others, and that “might makes right.”

Particularly compelling elements for people hearing these accounts are the reason you were restrained or secluded, how it made you feel at the time, what effect it had on you, what if anything did you learn from it and, of course, your answer to the questions, “Did it help? Was there another way that people could have gotten through to you? And what were you feeling or trying to communicate by the act or incident that led to your restraint or seclusion?”

If you would be willing to share your story for this effort, please contact Kym Grosso, who is leading this project. She can be reached at kym.grosso@gmail.com.

Thank you for your participation – together, we can and will end the use of seclusion, aversives, and restraint in our schools, residential facilities, and service provision!

 

Disability Discrimination in Employment

by Spencer Hunley

According to the U.S. Equal Employment Opportunity Commission, of the roughly 100,000 discrimination claims filed in 2011, 25,742 were based on disability status, the highest number reported since the Americans with Disabilities Act went into effect in 1992. Over the past six years, such claims by people with disabilities have grown, doubling since 2005, when annual claims reached just under 15,000.

The numbers alone are troubling. Even with the 20th anniversary of the ADA coming up, equality in employment for those with disabilities is still a dream. As Autistics, most of us are aware that the job market can be a nightmare. Samantha Crane, an attorney and former clerk for a federal judge who currently works for a disability non-profit, offers insight for those of us on the spectrum who are looking for employment. Some fear that they are not covered by the ADA since their disability is “invisible,” or not easily detectable by social interactions or on sight alone. Crane stated that this is not the case in a recent online interview: “Autism generally will be protected under the ADA since it generally limits at least some major life activity, such as interacting with others, speaking, communicating, learning, or caring for oneself,” she wrote. “Even if you are not currently substantially limited in some major life activity, you might be protected under the ADA if you would be limited if you weren’t on medication, using assistive technology, receiving supports, or following a particular routine. You may also be protected if an employer wrongly believes you have an impairment when you don’t.”

Crane also listed clearly a few key points about the ADA and employment:

Under the ADA, an employer may not:

  • Ask job applicants whether they have a disability or medical condition during the course of the job application process. Employers can sometimes ask this sort of question after they have already offered someone a job.
  • Take adverse action against a person with a disability, solely based on the person’s disability or perceived disability. Adverse action includes failing to hire, firing, or failing to promote the person, as well as curtailing job responsibilities and subjecting the person to harassment.
  • Refuse to provide a reasonable accommodation to a qualified person with a disability. What counts as a reasonable accommodation requires a case-by-case determination but may include modification of work hours, permitting the person to use a service animal, providing instructions in writing, or providing the employee a desk in a quiet part of the office. You must tell the employer that you have a disability in order to be entitled to a reasonable accommodation.

If you have a job, or are trying to acquire employment through some sort of agency, you don’t have to settle for less than minimum wage. Crane wrote, “People also have the right to work for fair wages. Although federal law currently still permits some employers to hire workers with disabilities at sub-minimum wages, you still have the right to insist on integrated employment at fair pay. This is an especially important issue for people getting job-seeking services from a vocational rehabilitation agency or similar service organization, as some of these have been known to take the ’easy way out’ by referring people with developmental and/or intellectual disabilities to ’sheltered workshops’ that pay below minimum wage, instead of helping to support them in integrated employment.”

So what do you do if you feel that bias or discrimination has been used against you in an employment situation? Crane advises, “If you feel that you have been discriminated against, you can file a charge with the EEOC. There are often time limits for filing charges – either 120 days or 300 days depending on your state. The EEOC has instructions for filing charges on its website (http://www.eeoc.gov/facts/howtofil.html). It’s best to seek the advice of a lawyer if possible, but keep in mind that many lawyers will not represent you unless you can pay them up-front or if you lost a very large amount of money as a result of the discrimination. Sometimes the state Protection and Advocacy organization can also help people with employment discrimination claims.”

 

Recent News

Update on the Loud Hands Project

The fundraising period for Loud Hands Project ended on March 15, with over $15,000 raised to support the transmedia publishing and creative effort spearheaded by Julia Bascom. The LHP’s first project will be to publish “Loud Hands: Autistic People, Speaking,” the first and foundational anthology of essays by Autistic people on neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience. Future projects include a video on the Autistic community and the conversation about eugenics and preventing autism, the development of the Loud Hands Project website, a DVD about the history of the Autistic community, and the creation of a scholarship fund for Autistic self-advocates to attend Autistic and disability rights related conferences and events. Submissions for the Loud Hands anthology must be submitted to Julia Bascom at jbascom@autisticadvocacy.org. View [link: http://theloudhandsproject.tumblr.com/submissionsguidelines ] the submission guidelines.

Autistic Self Advocate Recognized as “Super Teen”

Andrew Collins, a high school student in Portsmouth, Rhode Island, has been selected as a Super Teen 2012 based on his outstanding leadership and advocacy. As the co-leader of ASAN’s new Rhode Island chapter, he works to promote greater understanding and acceptance of autism and other disabilities.
He has a particular interest in educational policy and improving the special education system.  In addition to his advocacy work with ASAN, he is also a member of the Learning Disability Association of America and is involved with his school’s Youth Action Committee.

Applications Open: Autism Campus Inclusion Summer Institute

The ACI Summer Institute is a week-long training for Autistic college students. The training is meant to prepare students to engage in self-advocacy and pro-neurodiversity activism and systems change on their college campuses. Any Autistic student in the United States with at least one more year remaining in college is eligible to attend. Thanks to our sponsors, we are offering this institute at no cost to the students chosen for the program, including travel accommodations, room and board. The institute will take place August 12 – August 17 in Baltimore, MD. Applications are due by March 30, 2012. Applications, including responses to the essay questions and a resume [link: http://www.autisticadvocacy.org/documents/ACIApplication.doc ]  must be sent to Melody Latimer at mlatimer@autisticadvocacy.org.

Call for Resumes: Summer Internships with Freddie Mac

Our first interns are on their way with great support from their managers and human resources at Freddie Mac. The pilot program on employment between Freddie Mac and the Autistic Self Advocacy Network is continuing to create two additional intern positions for Autistic adults for summer 2012. Applicants must be available to work in the Washington DC metro area. Internships will begin in May, and are paid positions including a small housing stipend. For descriptions of the Portfolio Analytics Internship and Image File Processor Internship click here [link: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=179 ] Applicants who meet the qualifications must send a resume to resumes@autisticadvocacy.org.

Call for Resumes: Serve as a Federal Grant Reviewer

Following our Symposium on Ethical, Legal, and Social Implications of Autism Research at Harvard Law School, several key federal funders have offered to work with ASAN to identify Autistic adults and people with other disabilities interested in serving on forthcoming federal grant review panels in order to ensure that self-advocates are represented in grantmaking. Generally, individuals who serve on grant review panels participate in the review of grants pro bono, although sometimes a federal agency may provide a small honorarium (usually $500 or lower) to reimburse participants’ time. Reviewer opportunities are not employment positions. Most grant reviews adopt some combination of online communication, phone communication, and in-person discussion for the grant review process. The grant review process usually takes place over a time frame that may vary from several hours to multiple weeks or even months depending on the size of the grant and the agency’s logistics. Interested self-advocates should send resumes, including any areas of expertise, to info@autisticadvocacy.org with the subject line “GRANT REVIEW.”

Studying Abroad Proves Rewarding  Experience

Tulsa University student Kathleen Coleman spent a semester in Barcelona, Spain, and enjoyed her study abroad so much that she now hopes to live and work in Barcelona one day. She was featured in an article by the National Clearinghouse on Disability and Exchange/Mobility International USA, in which she spoke of the independence and confidence that she gained from her experience of living in another culture.

Although learning her way around the city was a challenge, she became comfortable with Barcelona’s public transportation. Her host mother was considerate of her needs as an Autistic student and helped her to feel safe. When asked in the interview what she would have done differently, she said that she would have discussed her disability with the other students in the program so as to promote greater understanding.

Advocacy Updates

Call for Stories: ASAN Investigating Emplower Use of Personality Tests

We are currently investigating employers’ use of personality tests to screen job applicants as part of applications for employment and the broader hiring process. These tests may unfairly remove qualified Autistic applicants and those with other hidden disabilities through the use of subjective questions unrelated to job performance. If you live in the United States and have recently been turned down for a job that used personality tests as part of the application process, please contact Samantha Crane at samanthacrane@quinnemanuel.com and Melody Latimer at mlatimer@autisticadvocacy.org. Please include the name of the employer, the approximate date on which you applied for the job and any additional information you feel may be relevant.

Personal Testimony on Abusive Restraint and Seclusion

The Kansas legislature is considering a bill that would protect students from abuse by restricting schools’ use of restraint and seclusion, requiring that parents be notified of such use, and training school employees. Disability advocates organized an event in support of the proposed legislation, which received local news coverage.

Autistic teenager Trey Morgan, who spoke at the event, described having been sat on by one of his teachers and frequently put in seclusion, which left him feeling “horrible” and “not human.” He said that the legislation, which would replace voluntary guidelines, is needed to make teachers responsible for their actions.

Managed Care Recommendations Released

The National Council on Disability has released recommendations for managed care in Medicare and Medicaid programs that serve people with disabilities. NCD cautions that when states seek to reduce their costs by implementing managed care programs, their focus should be on improving efficiency and accountability, while not reducing the quality or availability of care.

With respect to long-term services and supports, NCD points out that when determining whether services are cost effective, it may be necessary to look beyond the term of the managed care contract. Although services and supports may not immediately result in cost savings, they can significantly reduce public expenditures in future years by assisting recipients to gain employment and to plan for the future.

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