Andrew J. Imparato is the President and CEO of the American Association of People with Disabilities. For the full text of this letter, see http://jfactivist.typepad.com/jfactivist/ada_restoration/ .
I write on behalf of a coalition of national, consumer-led disability organizations to share some of our collective policy priorities for your new Administration. Many disability organizations have been and will be sharing more specific recommendations that reflect their organizational priorities, but we wanted to work together on a joint document to highlight the areas that are of common interest and concern.
As you work to fine-tune and implement your Plan to Empower Americans with Disabilities , we urge you to do so in partnership with organizations that are run by people with disabilities and that have strong grassroots constituencies. In our experience, disability policy (and public policy in general) works better when it comes from the constituencies that are its intended beneficiaries.
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 your administration to make cost-effective policy changes to enhance the lives and restore the civil liberties of Americans with disabilities.
Reverse the persistently high percentages of people with disabilities who are not working but are ready, willing, and able to work. Seventy percent of people with significant disabilities are unemployed. In 2006, the average annual household income for Americans without disabilities was $65,400, compared with $36,300 for Americans with disabilities. Work disincentives, Supreme Court rulings, and under-funded job training and career development programs, all interfere with the acquisition of skills necessary to obtain, maintain, and advance in employment opportunities.
In the Individuals with Disabilities Education Act (IDEA), Congress promised to cover 40% of the "excess cost" of state special education expenditures, but covers less than half of that. The US Supreme Court limited IDEA rights of children with disabilities by placing the burden of proof in disability rights cases on parents, and eliminating expert fee reimbursement to parents whose special education lawsuits are successful.
The Secretary of Education should develop model standards for bullying prevention for schools and districts to adopt as part of a DOE-led nation-wide effort to reduce the prevalence of bullying, harassment, and violence against students with disabilities.
Improve access to health care and decrease disparities and inequities. The Institute of Medicine reports that persons with disabilities comprise the largest and most important health care consumer group with an estimated 49.7 million members in 2000.
One in three people with disabilities report delaying care, skipping medication, or going without needed equipment due to cost or coverage that limits or prevents their access to critical tools and interventions that enable independence and self-determination. We need to ensure that comprehensive health care reform provides meaningful access to health care, including mental health care, and adequate coverage to meet the needs of people with disabilities.
Home and Community-based Services
Promote effective home- and community-based services (HCBS) as alternatives to costly nursing homes and other institutions and increase the Federal Medical Assistance Percentage to states. The fact that some people with disabilities must live in institutions in order to receive needed services which could feasibly be provided at home has been declared "discrimination" by the Supreme Court's decision in Olmstead v. L. C. (1999) , The problem is that Medicaid pays for institutional care, but not HCBS. [Congress needs to] shift Medicaid and Medicare funding to home and community-based services to promote community living.
Specifically, let's pass Senator Harkin's Community Choice Act, to require states to offer community-based supports for Medicaid-eligible consumers so they may choose to live in their own homes, as a cost-effective alternative to institutional care. This will change the focus of these programs to independent living and participation. We also need to pass the Community Living Attendant Services and Supports Act (CLASS) to promote independence.
There is not enough accessible, affordable, integrated housing for individuals with disabilities, and individuals with disabilities are often isolated because of the lack of adequate transportation. The Secretary of HUD should develop a plan to end homelessness and provide adequate, safe, affordable housing for people with disabilities, and increase the number of Section 8 housing vouchers. Congress should increase investment in public transportation in rural areas where people with disabilities are often isolated and unable to participate in society or meet their needs of daily living.
Promote a quality of life and participation-based research agenda. Federally funded disability research focuses disproportionately on basic scientific research to discover the cause of "disabling conditions," while ignoring the impact of disabilities on quality of life and participation for individuals affected by the particular condition or disability.
A quality of life and participation-based research agenda will provide evidence on the most effective methods of delivering services in housing, transportation, education, prevention, wellness, health care, recreation, and other community services that empower individuals with disabilities, and enhance and promote transition and independent living.
Reinvigorate civil rights enforcement, extend access requirements to new technologies, and continue to restore protections stripped away by hostile courts. Over the last decade, US Supreme Court decisions, amendments to certain disability rights legislation, and changes in federal regulations have undermined the right to equal protection under the law for Americans with disabilities.
In January 2008, Senator Kennedy and Representative Lewis introduced the Civil Rights Act of 2008 to restore civil rights protections that courts have limited. [Congress should] mandate that virtual or online businesses using the Internet are "places of public accommodations" [and thus are covered by civil rights and accessibility laws].
Protect human rights of individuals with disabilities at home and abroad. The United Nations adopted the Convention on the Rights of Peoples with Disabilities  on December 13, 2006. Forty-two nations ratified the Convention and 136 nations have signed it, indicating their intent to ratify. The Convention addresses the rights of people with disabilities to self-determination, physical and programmatic access, personal mobility, health, education, employment, habilitation and rehabilitation, participation in political life, and equality and non-discrimination.
During his campaign, Barack Obama indicated that his administration would support US ratification. The President should sign the UN Convention on the Rights of Peoples with Disabilities and work with Congress to ratify it. Law enforcement agencies currently required to keep surveillance data on hate crimes should be required to collect specific data on the disabilities of hate crime victims, and technical assistance should be provided to the public and law enforcement agencies to encourage reporting.
Emergency Preparedness, Response, and Recovery Needs
Plan, coordinate, and provide resources to support people with disabilities before, during, and after a crisis. Up to one-third of individuals affected by emergencies or disasters, have functional needs related to a disability or chronic condition that affects their safety, health, and independence. The policies, practices, and programs of local, state, and federal agencies charged with emergency management fail to adequately address the needs of individuals with disabilities. The President should establish an Office on Disability in FEMA with adequate authority and resources.
Genetic Science and Technology
Promote ethical use of new technologies. Society is rapidly increasing its use of genetic technologies, including prenatal genetic testing and screening, trait selection, stem cell therapy, and personalized medicine. Individuals increasingly face complex decisions about how to use genetic technologies.
The general public's understanding of what it means to have a disability or raise a child with a disability is limited. Physicians, genetic counselors, personalized genomics companies, friends, family, and the media may offer limited information which often provides a medical prognosis without the context of life experiences of people with disabilities.
The President should seek appropriate funding to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act, with leadership from national consumer-controlled disability organizations to gather information about living with intellectual, developmental, physical, visual, auditory, sensory, and mental health disabilities, and distribute this information in accessible formats and multiple languages. The President should implement the Genetic Information Nondiscrimination Act (GINA) with leadership from consumer-controlled disability organizations that have expertise in living with genetic conditions.
Nothing About Us, Without Us
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 -- speaks for us.
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.
It will also 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 health care system, include the
health care 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.