Time for a Real Change: Disability Groups Send Recommendations to Obama

Filed Under (Activism) by Estee on 16-01-2009

ASAN, The Autistic Self Advocacy Network is involved in helping make changes. Read the letter below and become involved. Disability policy around the world effects us all:

Disability Groups Send Recommendations to Obama

Dear President-elect Obama,

Congratulations on capturing the hearts, minds, and hopes of our nation! As grassroots, community-based, consumer-controlled disability organizations, which collectively represent over 50 million Americans with the full spectrum of disabilities, we look forward to working with you and your administration to make cost-effective policy changes to enhance the lives of and restore the civil liberties Americans with disabilities.

Attached you will find nine summaries of the top policy issues facing Americans with disabilities. Taking action on your commitment and these policy measures will not only benefit citizens with disabilities, our nation’s wounded warriors, and the ever-growing aging population, it will benefit all Americans and save our government millions of dollars as individuals with disabilities become full participants in society.

They include:

· Employment: Reversing the persistently high percentages of people with disabilities who are not working but are ready, willing and able to work;

· Education: Increasing access and opportunities for physical activity, and improving quality;

· Health Care: Improving access and decreasing disparities and inequities;

· Home and Community-based Services (HCBS): Promoting effective community-based services as alternatives to costly nursing homes and other institutions and increase the FMAP to states;

· Disability Research: Promoting a quality of life and participation-based research agenda;

· Civil Rights: Reinvigorating civil rights enforcement, extending access requirements to new technologies, and continuing to restore protections stripped away by hostile courts;

· Human Rights: Protecting human rights of individuals with disabilities at home and abroad;

· Emergency Preparedness, Response and Recovery Needs: Planning, coordinating, and providing resources to support people with disabilities before, during, and after a crisis; and

· Genetic Science and Technology: Promoting ethical use of new technologies.

Like you, we stand and sit on the shoulders of so many who have come before us. As our nation approaches the 20th anniversary of the Americans with Disabilities Act in 2010, we embrace the disability rights principle, “Nothing About Us, Without Us.” For too long others claimed the need to speak for us, but no other group – professionals or relatives – speak for us.

Additionally, we urge you to embrace the fundamental principles for sustainable change, which are essential elements to building healthy, resilient, empowered communities. As you move forward with deliberate speed and consideration, we urge your administration to:

· Provide oversight of federal agency public policy, regulatory, and enforcement actions, and collaborate with consumer and community-based disability organizations as partners to better serve the ever-expanding population of more than 50 million Americans with disabilities;

· Hire qualified professionals with disabilities, who have expertise in policy areas, throughout the administration, including a Special Assistant to the President on Disability Policy;

· Include individuals with disabilities in policy formation in all areas addressed by the administration, and integrate representatives of our community on all advisory boards of all major agencies;

· Provide services that serve people with disabilities across the life span, from cradle to grave, and all those with increased needs for health care, health promotion, and long-term services and community-based supports;

· Incorporate consumer-directed services and include consumers in policy development;

· Embrace the disability experience as part of culturally competent policy and diversity at all levels of planning, policy formulation, implementation, and evaluation; and

· Focus on “universal design” as a cost-effective innovative way to enhance the quality of life and level of participation of all Americans in community life and incorporate it into infrastructure changes in the economic stimulus package so we upgrade the infrastructure for all to use;

Thank you for your support of the need for the federal government to be “diligent about making sure the states enforce the rights affirmed by the Olmstead decision.” Enabling people with disabilities to live independently in their own homes and communities, rather than being forced into costly Medicaid-funded nursing homes and other institutions will ensure civil liberties, enhance the quality of life and full participation of all Americans by creating stronger, sustainable communities of inclusion and acceptance to honor the 10th Anniversary of the Olmstead decision.

As a community of individuals with disabilities, we ask for nothing more than what other Americans expect and already have. We seek inclusion. We seek a voice for the disability rights message in the change you create. As you create more jobs for Americans, include jobs for Americans with disabilities. As you improve education for America’s students, include students with disabilities. As you improve the healthcare system, include the healthcare needs of individuals with disabilities. As you restore civil rights to Americans, include the civil rights of individuals with disabilities. To paraphrase your now immortal words, – We are not a nation of disabled and non-disabled Americans. We are the United States of America.

We stand ready to work with you and look forward to an opportunity to discuss our priorities with you personally in the coming months.


American Association of People with Disabilities (AAPD)

Access Living

American Disabled for Attendant Programs Today (ADAPT)

Autistic Self Advocacy Network

Boston Center for Independent Living (BCIL)

California Foundation for Independent Living Centers (CFILC)

Disability Rights Education and Defense Fund (DREDF)

Generations Ahead

Little People of America

Metro-West Center for Independent Living (MWCIL)

National Association of the Deaf (NAD)

National Coalition for Disability Rights (NCDR)

National Coalition of Mental Health Consumer Survivor Organizations

National Council on Independent Living (NCIL)

National Empowerment Center

National Federation of the Blind (NFB)

Self Advocates Becoming Empowered (SABE)

Special Olympics

Texas State Independent Living Council (TX SILC)

World Institute on Disability (WID)

For Policy Recommendations on each policy visit the websites of the organizations listed above.

—Ari Ne’eman
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036


Post a comment

You must be logged in to post a comment.


About Me


I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.