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September 2012 Newsletter

Message From the Board: Keep Up the Advocacy!

by Ari Ne’eman

What a summer! As we enter the Fall, we’re excited about a new season of advocacy. Last month, ASAN held our first Autism Campus Inclusion Summer Leadership Academy. It was an exciting experience, bringing seventeen Autistic college students to Baltimore for a week of grassroots advocacy training. Now that they’ve returned and begun to set about the work of building a stronger voice for our community in higher education, we can begin to reflect on what the new season will bring.

It has been an exciting last few weeks. From the response to the Washington Times’ attack on federal hiring efforts for people with disabilities to the important work being done in Washington State to safeguard the Olmstead decision from attack, self-advocates are mobilizing across the country to make sure our voices are heard and our rights are respected. You can play a role too – by joining your local ASAN chapter, becoming an ASAN member or making a donation to help support our work.

Last, but not least, we have begun preparations for our annual Gala at the National Press Club in Washington, DC. With a keynote from Kathy Greenlee, the head of the federal government’s new Administration for Community Living, guests from across the country and a showcase of ASAN’s work over the course of the last year, we are really looking forward to it. The event will be taking place on November 14th, 2012 from 6-9 PM. We hope to see you there!

Update on Local Chapter Protests of Goodwill Industries

by Emily Titon

Goodwill Protest Informational Flyer

After the National Federation for the Blind called for a boycott of Goodwill Industries, the disability community came together on August 25th to protest at Goodwill stores nationwide, with the Autistic Self Advocacy Network taking part in at least three of the 80 or so protests that were held across the country.

The reason for the boycott (and protests) is the fact that Goodwill Industries employs people with disabilities under a Section 14(c) certification under the Fair Labor Standards Act. Section 14(c) authorizations, implemented in 1938, are most often associated with sheltered workshops, and those entities that have them can legally hire people with disabilities to work for wages far below the Federal minimum wage. Goodwill pays as little as 22 cents an hour to these employees.

ASAN joined protests in Sacramento, California, York, Pennsylvania, and Portland, Oregon.

I asked Andee Joyce, the ASAN Portland chapter leader, how she thought their protest was received. She explained that initially, the chapter thought it would be a good idea to protest in what she called a “hippie-crunchy” part of town, but they then got ahold of the local NFB protest organizer, and decided to join forces to increase their numbers and their solidarity.

“Once we told NFB we were joining them,” Andee said, “they were happy to have us, and it was a nice turnout, about 25 or 30 people. We got lots of honks and waves from people who went by… and had some good talks with people about why we were there.  We also managed to snag a copy of Goodwill’s ‘counter-protest’ flyer, which had some gems on it. And we had fun, believe it or not! It was a beautiful day, and there was a lot of laughter and amusement along with the politics.”

The counter-protest flyer disseminated by Goodwill points out that 80% of disabled people don’t have jobs, and that the people who participate in their Section 14(c) programs either sign up themselves or are signed up by their guardians; there is no compulsory participation. It claims that the programs provide work experience, increase social skills building opportunities, and improve self-esteem.

It also points out that people enrolled in their Section 14(c) programs all receive Social Security Income and get medical coverage through Medicare or Medicaid.

Katie Miller, one of the ASAN York chapter leaders, had the following to say about the protest she helped lead: “ASAN York had 3 people attend, including Luke and I as leaders. We would have liked to have more turn-out, but the small number actually worked well… It made us friendly and more approachable than a large group would be… We just stood there, quietly talking amongst ourselves and holding our signs out, and when someone walked by or looked at us with interest, we engaged them in conversation and gave them the flier…The people we engaged with were very supportive, surprised and shocked, and some even asked what they could do.”

One thing people who wish to see this end can do is ask their Congresspeople to support HR 3086, currently in committee. The National Federation for the Blind has released a fact sheet explaining why we need to end these unfair practices that benefit corporations and CEO’s – and, contradictory to Goodwill’s flyer, actually at the expense of the self-determination, independence, productivity, self esteem, and community engagement of the disabled. It details how 3086 would phase out and eventually eliminate subminimum wage practices and put an end to Section 14(c).

Section 14(c) was originally only to be used “to the extent necessary to prevent curtailment of opportunities” for employment of people with disabilities. In practice, however, part of the thinking behind the Section 14(c) authorizations was the now outdated belief that a disabled person cannot do the same amount of work in the same amount of time as a non-disabled worker. This has resulted in sheltered workshops becoming glorified day programs, and big moneymakers for the CEOs of the programs, including Goodwill Industries (the CEOs often earn incomes in the six figure range).

This is an outgrowth and relic of a system of belief that espoused segregation and routine institutionalization, when people with disabilities were assumed to not be ever capable of learning job skills on the same level as their non-disabled peers – let alone live independently of caretakers, and that it was best for everyone if they were kept away from the non-disabled community.

Today, we know differently. We know that although a person does not speak, he or she is most likely capable of communication; given an AAC device, he or she can communicate, and write. All people with disabilities, with proper supports and accommodations and job coaching if needed, can hold many if not most jobs in the community that a non-disabled person could hold.

The days of sheltered workshops need to end so that we all can have self-determination, self esteem, independence, and be contributing members of our communities to the fullest extent possible – meaning equal pay for equal work, so that disabled people no longer need to depend on government assistance and can have the sense of pride and accomplishment that comes with having a career, and envisioning a future for themselves just as their non-disabled peers do.

Everybody deserves to have that sense of pride and accomplishment. Everybody deserves the right to be a full citizen of this country. Ending Section 14(c) has to be one of our preeminent goals, and spreading the word about the boycott of Goodwill Industries is one way to get the word out and generate the outrage and shock that creates change and forward motion.

The Unseen Threat to Our Civil Rights

by Lydia Brown

Imagine going to the polls on Election Day and asking for a ballot so you can participate in America’s democracy like everyone else. You are excited and anticipating your choices when you tell the poll official your name and wait to be directed to a booth. But before you can so much as move past the table, the poll official says, “Sorry, but you can’t vote.” Shocked and dismayed, you stare at the official and demand to know why. The official shakes his head and says, “You’re obviously mentally disabled, so you’re not competent to vote, and I can’t let you cast a ballot here.”

This is not fiction, nor is it uncommon. This scene is reality for thousands of disabled voters across the country who live in states with laws or constitutional provisions that unlawfully restrict citizens from voting if they have mental health disabilities, intellectual disabilities, or developmental disabilities—and even for those whose states may not have such laws, but where local polling officials illegally make determinations of competence and prevent certain people from casting ballots. In direct violation of numerous federal laws, disabled people frequently face barriers to voting based on wrongful presumptions of incompetence, automatic revocation of voting rights under guardianship orders, and stigmatizing and exclusionary language in state constitutions.

Both the Americans with Disabilities Act and the Help America Vote Act require all public entities to provide reasonable accommodations to the voting process wherever necessary and to make the voting process accessible to all voters, yet polling officials frequently refuse to provide appropriate and reasonable accommodations for disabled voters either at the polls or at an alternate location. Furthermore, the Americans with Disabilities Act explicitly prohibits any laws or practices that categorically bar people from voting solely on the basis of being under guardianship or living in an institution or group home of any kind. Nevertheless, fifteen states and the District of Columbia have laws that categorically prohibit people under guardianship or determined mentally incompetent from voting, while nine states use the discriminatory and stigmatizing terms “idiots” and “insane persons” to describe who is prohibited from voting.

There are further violations of the federal Voting Rights Act (VRA) when states or local officials impose competency requirements or pre-voting examinations on disabled voters that are not also imposed on every other voter. Under the VRA, any competency test for voting must be given to every potential voter, and no one group of people may be subjected to such a test where it is not mandatory for everyone else; however, it is not uncommon for local officials or even institutional staff at nursing homes, psychiatric hospitals, or group homes to demand that disabled voters take competency exams that set standards to which non-disabled voters are not held prior to being permitted to vote.

One of the most significant barriers to full voting rights for disabled people is the result of the relatively common practice of guardianship. In the fifteen states barring voting by people under guardianship or otherwise adjudicated “mentally incompetent,” being placed under a guardianship order automatically rescinds one’s right to vote unless the guardianship order is later modified to retain the person’s right to vote. Most parents or caretakers seeking guardianship in order to provide support for medical choices, financial affairs, or daily living activities are unaware of the unseen threat to civil rights in guardianship. Furthermore, even when a disabled person does require intensive assistance and support with medical choices, financial affairs, or daily living activities, those support needs do not reflect the person’s capacity to understand the importance of voting, to select between choices or candidates, or to participate in civic affairs writ large. Yet the unseen threat to our civil rights has recently grown and may inhibit disabled citizens from voting in even greater numbers.

Amid much discussion at the national and state levels about new legislatives initiatives creating photo identification requirements for voters and their potential consequences, the public discourse has largely ignored the increasing plight of disabled Americans who want to vote. The financial burdens created by these new laws would make obtaining the required photo identification, or even the documents necessary to obtain photo identification, financially inaccessible for the many disabled Americans who are receiving Social Security Supplemental Income, working at minimum or sub-minimum wage jobs, or who are unemployed.

It is imperative that disabled people, allies, and policymakers understand the legal and social frameworks that continue to perpetuate mass disenfranchisement for thousands of disabled citizens across America. This is necessary in order to change laws and policies to align with federal voting rights and disability rights policies and to address the attitudes and stigma that enable further civil rights violations of the disabled.

France Considers New Autism Guidelines

by Allison Shefcyk

The French National Health Authority (HAS) has released new autism guidelines to assist parents and caregivers in selecting appropriate services for autistic individuals. These recommendations may help bring positive changes for the country’s autism community, particularly for children and teens.

In France, most psychiatrists are trained in psychoanalysis rather than in behavioral intervention therapies. As a result, autistic people are trapped in a system that seems to reflect the attitudes of the 1960s rather than those of the 21st century. Professionals continue to view autism as a form of psychosis caused by cold, unresponsive mothers. Intervention therefore is focused on talk therapy and family relationships as opposed to behavioral and educational approaches.

This has led to a dire situation for autistic people in France. Diagnosis usually occurs much later for French autistics than for their peers in the UK and Europe. Only 20% of autistic children in France attend mainstream schools, while the rest are either kept at home or in special medical centers. As a result, they are far less likely than their British peers to attend college or to have access to employment.

The HAS recommendations represent three major focus shifts for French autistics, their families and professionals. The first is the adoption of an educational model of intervention as opposed to a purely medical one. This step is particularly important, because it will compliment a 2005 law that grants autistic children the right to attend mainstream schools.

The roles of both the parents and autistic individuals in deciding care options are emphasized as well. The recognition of the autistic person’s rights, dignity and personality are specifically encouraged.

Finally, therapies and interventions are evaluated according to the quality of scientific studies. For instance, HAS recommends ABA because the technique is backed by strong scientific evidence thanks to unbiased evaluation through random sample testing. Institutional psychotherapy and psychoanalysis are not rated as highly due to a lack of consensus among experts regarding their efficacy. Although the guidelines will not eliminate pseudoscientific therapies, they will provide a guide to finding effective interventions and avoiding ineffective ones.

Although the HAS recommendations are promising, services for the autism population in France still has a long way to go. Mainstream school enrollment for autistic students has been increasing since 2005, but it is still not on par with other European countries. Adults meanwhile still live in institutionalized settings and have limited access to employment. HAS will hopefully provide autistic people, their families and professionals a better roadmap to navigating educational and medical options, which is a step in the right direction for France.

Advocacy and News Updates

National Disability Leadership Alliance Meets with Health and Human Services to Discuss Organ Transplant Policies

Last week, representatives of the National Disability Leadership Alliance (NDLA) met with senior staff at the HHS Division on Transplantation to discuss organ procurement and transplantation policies and how they impact people with disabilities of all kinds. NDLA, a national coalition of organizations run by and for people with disabilities, was represented by ASAN President Ari Ne’eman, National Council on Independent Living (NCIL) Kelly Buckland and Not Dead Yet President Diane Coleman. Among the issues discussed were ensuring meaningful consent in organ procurement efforts and addressing discrimination against people with disabilities in accessing organ transplants. ASAN staff raised the recent cases of Amelia Rivera and Paul Corby, youth with developmental disabilities denied access to transplant waiting lists, and urged HHS to issue strong and unequivocal legal guidance to prevent such acts of discrimination.

ASAN Issues Response to Recent Washington Times Editorial

On August 22nd, 2012, The Washington Times published an editorial entitled “Holder’s ‘Severe Mental Deficiency” that attacked the Schedule A affirmative action hiring authority of the federal government with misinformation and ableist language. In response, ASAN released a public statement and published a document entitled “Frequently Asked Questions about Federal Disability Hiring Efforts” in order to combat the dangerous and stigmatizing misinformation from The Washington Times. In our FAQ, we have explained the difference between the Schedule A hiring authority, which only allows the hiring of qualified disabled candidates, and the anonymous Standard Form 256, which is used to collect statistics on disabled federal employees hired either competitively or under an affirmative action hiring authority, as well as addressed other common misconceptions and mischaracterizations.

Resources on Voting Rights for People with Disabilities

The website for the Judge David L. Bazelon Center for Mental Health Law offers a page with various policy documents regarding voting rights for people with mental and cognitive disabilities.

Study Shows Bullies Prey on Autistic Youth

The New York Times reports that a recent study shows that school bullies tend to prey on autistic children and adolescents.

Little Known About How to Support Teens and Adults on the Autism Spectrum

Disability Scoop reports that a recent literature review suggests that, while a great deal of resources are spent on understanding and supporting autistic children, little is known about how to best support teens and adults on the autism spectrum.

The AbleGamers Foundation Releases Illustrated Guide to Designing Video Games for Disabled People

The AbleGamers Foundation is a 501(c)(3) public charity that runs AbleGamers.com, which provides news and reviews on the accessibility of mainstream video game titles, as well as consultation on assistive technology. The organization has launched a fully illustrated guide to designing video games for the disabled community. The document, called Includification, is available online here.

Upcoming Webinar on the Family Medical Leave Act (FMLA) and Americans with Disabilities Act Amendments Act (ADAAA)

According to an informational alert prepared by Fifth Freedom, courtesy of Disability.gov and AskEarn.org, on September 27 from 2:00 pm t0 3:00 pm, AskEarn.org will hold a webinar to explain the connection between the Family Medical Leave Act (FMLA) and Americans with Disabilities Act Amendments Act (ADAAA). It will highlight the responsibilities of employers, managers, and employees in navigating the legal issues regarding medical leave and accommodations requests. Case studies and best practices for managing the challenges will be discussed. You can register for the webinar here. For further information, contact AskEarn.org.

Upcoming Event: AutCom Annual Conference

The Autism National Committee will be holding its 2012 annual conference in Baltimore, Maryland, on October 5-6. For more information and to register, visit the conference webpage.

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