Justice For All Action Network (JFAAN), lobbies Congress on health care reform in a letter to Pelosi

The disability community has been advocating for over twenty years for the equitable choice to receive support services in their own homes and communities rather than nursing homes or other institutions.  We believe this is a civil rights issue.   Though there has been progress reducing the institutional bias in Medicaid, we hope during this Year of Community Living (July 2009 – July 2010) and as we celebrate the 20^th anniversary of the Americans with Disabilities Act (ADA), this progress can continue.

For this progress to occur we believe the Administration and Congress must work with the states and the disability community in two areas.  One is stronger enforcement of the Supreme Court’s Olmstead decision and the other is protection of Medicaid optional home and community services in healthcare reform legislation.   The recent October 30^th letter from the Centers for Medicare and Medicaid Services (CMS) Regional Office to the State of Missouri,  detailing how they are not complying with the Olmstead decision and the steps CMS wants them to take in order to come into compliance,  is a positive example of what the disability community would like to see continued all over the country.

States are currently reducing home and community services and people with disabilities and their families are being threatened with having to go into an institution because there are few community service options available.  Though we understand the economic realities confronting states, we believe that criteria must be developed and enforced by Department of Health and Human Services –Office of Civil Rights, CMS and the Department of Justice that protects our rights to services in the most integrated setting.   States currently have little guidance on what implementing the Olmstead decision means and we believe many states are currently violating the decision’s language of services in “the most integrated setting.  We believe the Administration should work with the disability community, National Governors Assn and the National Conference of State Legislators to assure the community integration rights of people with disabilities are protected.

The reform of the healthcare delivery system has been one of the highest priorities on the agenda of most national and state disability rights advocacy organizations in the country.  Expanding coverage to the uninsured and those of us with pre-existing conditions are just two of the major benefit of all the proposals that are currently moving forward in Congress.  People with disabilities of all ages have a personal stake in the outcome of the debate on how acute medical and long term services and supports are delivered and paid for though most of the discussions have surrounded doctors, hospitals, durable medical equipment, insurance companies and other payers of healthcare services.

The Congressional proposals use the expansion of Medicaid as the payer for those currently uninsured for those up to 133% of poverty in the Senate bill and 150% of poverty in the House.  This is a logical approach because the legislation builds on a system that is established in every state in the country.  We support the expanding of Medicaid funding for the uninsured with some protections for those currently receiving Medicaid services.

Our concern is how the expansion of Medicaid for the low income uninsured will affect the delivery of Medicaid optional services for people with disabilities at a time that states are currently under extreme budget restraints and are reducing not only Medicaid optional services but also slashing education and other needed human services. Proposals in Congress have states picking up between 5%-23% of the costs of covering the low income uninsured.  Governors have expressed their concerns about  how absorbing  this increase will increase their deficits and may result in massive cuts in education and human services.

The fact that all Medicaid home and community services are optional make them particularly vulnerable to cuts though these community long term care services are less expensive and overwhelmingly preferred over nursing home and other institutional services.  Currently US long term care policy makes it mandatory for states that choose to deliver Medicaid funded services must provide nursing home services.  The rebalancing of the long term care system, moving from funding focused on nursing homes and other institutions to a system giving a real choice for home and community services, has been accelerating over the last decade.  It would be a major irony if one unintended consequence of health care reform legislation was to reverse this rebalancing trend by putting states in the position to make the difficult and wrenching decision to cut home and community services and other optional services.

Though there are proposals to protect  from states cutting out Medicaid optional populations there is nothing in the bills that would prohibit states from cutting Medicaid optional services like home and community 1915 (c) waivers and/or the Personal Care Option.  We ask you to work with us to put in language in the legislation that will protect home and community services and continue the rebalancing of the long term care system that gives people with disabilities of all ages a real choice for services in the most integrated setting.

President Obama declared that the year from July 2009 to July 2010 as the “Year of Community Living”.  On July 26, 2010 the disability community will celebrate the 20^th Anniversary of the Americans with Disabilities Act, ADA.  We hope that strong enforcement of the Olmstead decision and the passage of health care legislation by Congress will promote the values and principles of integration, inclusion and independence that are at the foundation of the ADA and of people with disabilities lives in the community.

If you have any questions, please call or email Andrew Imparato, President and CEO of the American Association of People with Disabilities (mobile: 443-386-2935  or email aimparato@aapd.com) or Bruce Darling, National Organizer for ADAPT (mobile: 585-370-6690 or email bdarling@cdrnys.org).