Monday, July 27, 2009

ASAN Represented at White House Ceremony on Disability Rights

An event celebrating the 19th anniversary of the Americans with Disabilities Act (ADA) was held at the White House on July 25, 2009. ASAN President Ari Ne'eman was one of the invited guests. At the event, President Barack Obama announced that he has instructed United Nations Ambassador Susan Rice to sign the UN Convention on the Rights of Persons with Disabilities. The President also signed a proclamation commemorating the ADA and affirming the rights of people with disabilities.

Photos from the celebration and announcement ceremony can be found on the main ASAN website.

Monday, July 20, 2009

Community Choice Act Update

ASAN and many other disability rights organizations advocate the prompt passage of the Community Choice Act, which would eliminate the institutional bias in Medicaid and allow people with disabilities who need long term services and supports to live in the community. The letter below, sent to Secretary Sebelius, describes why this legislation is so urgently needed:

July 10, 2009 VIA Facsimile & E-Mail

The Honorable Kathleen Sebelius
U.S. Department of Health & Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Secretary Sebelius:

Thank you for your leadership this week in bringing the issue of Long Term Services and Supports back into the health care reform discussion by expressing support for including the Community Living Attendant Services and Supports (CLASS) Act in the health care reform legislation currently making its way through the Congress. As leaders of grassroots disability organizations, we write to request a meeting so that we can open up a line of communication with you and your team as health care reform takes center stage.

The disability community has advocated that reforming Long Term Services and Supports (LTSS) is a critical component of any health care reform initiative. As you know, adequate home and community services are not only preferred by seniors and people with disabilities, but also save money by avoiding serious secondary medical conditions, unnecessary trips to the emergency room, hospital stays and doctor visits. With your letter supporting inclusion of the CLASS Act, the administration has taken a first step in addressing this critical issue.

Although the CLASS Act would expand resources available to individuals and families to purchase LTSS to enable them to remain in their own homes in the community, this legislation does not:

eliminate the institutional bias in the Medicaid program which forces Americans with disabilities and older Americans into nursing facilities and other institutions;

meet the needs of seniors and people with disabilities who are already in nursing facilities or other institutions or who are at immediate risk of being forced into such a setting;

address the needs of seniors and people with disabilities who will require LTSS but won’t qualify for the proposed benefit because they are not working;

address the needs of persons who acquire disabilities earlier in life and won't qualify because they cannot secure employment;

provide any actual assistance for five years after it is enacted because people must contribute for five years before they can receive any benefit;

or meet the needs of persons with significant disabilities who would require more assistance that would be provided under this benefit.

That’s why we need the Community Choice Act (S683/HR1670).

The Community Choice Act (CCA) would eliminate the institutional bias in Medicaid and give a real option for seniors and people with disabilities who want to live in the community with LTSS.

It would address the needs of individuals who are at risk of institutional placement and give people who are already in such settings an opportunity to return to community living. CCA would provide immediate relief to Americans who are struggling with this issue, whether they were born with a disability, acquired one later in life, or are helping a family member. CCA provides a safety net for people with the most significant disabilities and allows people with incomes above the Medicaid level to buy into this program. Ultimately, the Community Choice Act brings federal LTSS policy in line with the Supreme Court’s Olmstead v. L.C. decision, giving every American with a disability the right to live in the most integrated setting.

We are writing to urge that the administration express its public support for including the Community Choice Act in the Affordable Health Choices Act. As a Presidential candidate and as a United States Senator, President Obama has expressed his support for and cosponsored the Community Choice Act. This legislation has a broad base of support within the aging and disability communities. In fact, over 80 national aging and disability organizations have endorsed this legislation.

We look forward to working with you to end the institutional bias so that every American is given a real choice in how and where they receive long term services and supports. We respectfully request a meeting with you this month to discuss how we can work together to accomplish our mutual goals.


Bruce E. Darling
Organizer, ADAPT

Andrew J. Imparato
President and CEO, American Association of People with Disabilities

Ari Ne'eman
President, The Autistic Self Advocacy Network

Brenda Battat
Executive Director, Hearing Loss Association of America

Nancy J. Bloch
Chief Executive Officer, National Association of the Deaf

Kelly Buckland
Executive Director, National Council on Independent Living

Daniel B. Fisher, MD, PhD
Steering Committee Member, National Coalition of Mental Health Consumer Survivor Organizations

Chester Finn
President, Self Advocates Becoming Empowered

cc: Henry Claypool, Director, Office on Disability

Saturday, July 11, 2009

Book Review: 22 Things a Woman Must Know if She Loves a Man with Asperger's Syndrome

Author Rudy Simone, in her first foray into the world of self-help books, seeks to address what she perceives as the concerns of women who are in romantic relationships with Autistic men. The cover blurb states that Simone, who gives presentations on autism to various groups, is "drawing on research and personal experiences to inform and advise women with AS partners."

Unfortunately, the book provides very little in the way of citations to peer-reviewed studies and instead relies heavily on stereotypes and unsubstantiated claims from Maxine Aston, who wrote the foreword. Aston asserts, without any valid research to back it up, that being involved in a relationship with an Autistic person causes "Cassandra Affective Deprivation Disorder," to which Aston attributes a variety of ailments from colds to cancer. Aston's claims have been debunked extensively on many Internet sites.

Simone has publicly stated that she is herself on the spectrum, which she learned only recently. When she first began to read about autism, she said in an interview, books by Maxine Aston and Barbara Jacobs were among the first things she found. In light of Simone's lack of a research background that would have enabled her to give their books more critical scrutiny, it is not surprising that like many young Autistics starting a career, Simone was naive and made a poor choice of mentors.

One useful suggestion in 22 Things is that an Autistic person should learn "to trust and respect his own original thinking in many matters." (p. 69) It is to be hoped that Simone will take her own advice in this regard when she pursues future projects. With her friendly, upbeat, and easily understandable communication style, she has the potential to connect well with audiences in both her speaking and writing endeavors.