Joint Letter from Disability Self-Advocacy Organizations

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July 10, 2009 VIA Facsimile & E-Mail

The Honorable Kathleen Sebelius
Secretary
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.


Sincerely,


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

COuld you please clarify this?

Is this about the CAP workers/

No, both the CLASS Act and the Community Choice Act (CCA) are about Long Term Services & Supports - basically, keeping people with disabilities in the community instead of forcing people to go into institutions to get support and services. The difference between the CLASS Act and the Community Choice Act is that the CLASS Act only applies to people who acquire disabilities later in life after working a certain amount of time, whereas CCA is for all people who meet a certain level of support needs. Thus, CLASS Act wouldn't help Autistic people or people with other disabilities present from birth, whereas CCA would be immensely helpful in increasing support for Autistic people who are currently in institutions to move to the community and be safely supported to live as independently as possible.