S 1716, Disaster Relief Medicaid bill
September 20, 2005

Chairman Charles Grassley
United States Senate
Washington, DC 20510

Re: S 1716, Disaster Relief Medicaid bill

Dear Chairman Grassley:

We want to begin by thanking you and your committee for working very hard in a bipartisan way to address the needs of people in the Gulf States whose lives have been so drastically affected by Hurricane Katrina. Of the various disaster relief options that have been put forth, your proposal is the only one to substantively deal with specific issues and concerns of people with disabilities. We are grateful for your leadership in this regard. Another disaster could be around the corner. We need to address this NOW.

This letter is from several disability organizations – the American Association of People with Disabilities, the National Council on Independent Living, the National Spinal Cord Injury Association, and ADAPT – all consumer-driven organizations with many members in the affected states. According to a poll last week by The Washington Post, The Kaiser Family Foundation, and the Harvard School of Public Health, of the 61% who did not evacuate before the storm, 38% said they were either physically unable to leave or had to care for someone who was physically unable to leave. We recognize that all of America is concerned about the devastation caused by Katrina, but to those of us in the disability community this situation is of crucial importance.

Since many individuals with disabilities depend on Medicaid and/or Medicare for their health and long-term supports, we appreciate several of the provisions in S 1716, the Disaster Relief Medicaid bill. The presumptive eligibility, 100% FMAP coverage, the streamlined access to Medicaid benefits, the extended mental health benefits, and the portability of the coverage are all excellent provisions. However, we do want to point out a few of our concerns:

• Coordination of the services being provided. Katrina exposed the lack of experience of FEMA and the American Red Cross in dealing with the needs of persons with disabilities in disaster situations. We applaud you for recognizing the need for care coordination through special provisions in this bill that provide for care coordination services on top of the state Medicaid plan. We strongly believe it is imperative to involve people with disabilities in this effort.
  
  Recommendation: Create Coordinating Councils in each state to work with the state Medicaid office. This Council would include Medicaid consumers from various populations and disability organizations such as centers for independent living, as well as agencies such as Red Cross, FEMA, and other state entities.
  
  
• Duration of the 100% FMAP. Ending all 100% FMAP payments after five or ten months could become a major disincentive to host states in providing HCBS and other expanding medically necessary services, given they would recognize that they would need to pay their share for those services once DRM ends. In many instances, in fact, it would take states at least a couple of months to identify and bring on HCBS providers and develop other necessary supports. Alternatively, some states might be forced to discontinue or reduce HCBS waivers to both survivors as well as their own residents when DRM ends in order to make up for the funding shortfall.
  
  Recommendation: Give the Secretary of HHS the authority to develop a plan with each state for phasing out the DRM FMAP over a longer period (e.g., 18 to 24 months) if a state can demonstrate that doing so is absolutely essential to the continued health and well-being of a particular group of beneficiaries.
  
  
• Institutionalization. Untold thousands of people with disabilities on Medicaid are needlessly institutionalized in every state of our country. A fifth of all nursing home residents indicate that they want to return home. They and others wait every day for the supports to be developed so that they could move back into their homes and communities. They are waiting for the most basic of American freedoms. An estimated 200,000 people with disabilities living in the community are on "waiting lists" for the Medicaid services they need to keep from going into a nursing home. Their wait for such vital supports should not be made longer due to this disaster. They must not be ignored in the understandable rush to enact relief legislation.
  
  Recommendation: In enacting this legislation, Congress must take deliberate steps to avoid making a bad situation that existed prior to Katrina with regard to a nationwide shortage of Medicaid community living services even worse. One specific way this could be done is to provide states with the funding to meet the most pressing community living needs of their own residents even as they are meeting the needs of hurricane survivors with disabilities. Such money is desperately needed to help people move from nursing homes into the community and assist others to continue to live at home.

In closing, we again want to thank you and your committee for this important legislation, and we support it. However, we do hope that our concerns can also be considered and included, if not in this legislation, perhaps in a companion bill. As Mark Johnson, a disability advocate from Georgia stated: “We understand why people with disabilities were evacuated without their wheelchairs, service animals, and caretakers. In an emergency, you do whatever you have to do to get the most people out in the quickest way possible.” However, now that the immediate crisis of evacuation is past, Chairman Grassley, we ask that you and other members of Congress ensure that the invisible emergency of poverty and disability services many of us face every day is addressed in ways that could make a real change in the quality of life for people with disabilities.

Sincerely,
American Association of People with Disabilities
ADAPT
National Council on Independent Living
National Spinal Cord Injury Association

---

Chairman Max Baucus
United States Senate
Washington, DC 20510

Re: S 1716, Disaster Relief Medicaid bill

Dear Chairman Baucus:

We want to begin by thanking you and your committee for working very hard in a bipartisan way to address the needs of people in the Gulf States whose lives have been so drastically affected by Hurricane Katrina. Of the various disaster relief options that have been put forth, your proposal is the only one to substantively deal with specific issues and concerns of people with disabilities. We are grateful for your leadership in this regard. Another disaster could be around the corner. We need to address this NOW.

This letter is from several disability organizations – the American Association of People with Disabilities, the National Council on Independent Living, the National Spinal Cord Injury Association, and ADAPT – all consumer-driven organizations with many members in the affected states. According to a poll last week by The Washington Post, The Kaiser Family Foundation, and the Harvard School of Public Health, of the 61% who did not evacuate before the storm, 38% said they were either physically unable to leave or had to care for someone who was physically unable to leave. We recognize that all of America is concerned about the devastation caused by Katrina, but to those of us in the disability community this situation is of crucial importance.

Since many individuals with disabilities depend on Medicaid and/or Medicare for their health and long-term supports, we appreciate several of the provisions in S 1716, the Disaster Relief Medicaid bill. The presumptive eligibility, 100% FMAP coverage, the streamlined access to Medicaid benefits, the extended mental health benefits, and the portability of the coverage are all excellent provisions. However, we do want to point out a few of our concerns:

• Coordination of the services being provided. Katrina exposed the lack of experience of FEMA and the American Red Cross in dealing with the needs of persons with disabilities in disaster situations. We applaud you for recognizing the need for care coordination through special provisions in this bill that provide for care coordination services on top of the state Medicaid plan. We strongly believe it is imperative to involve people with disabilities in this effort.
  
  Recommendation: Create Coordinating Councils in each state to work with the state Medicaid office. This Council would include Medicaid consumers from various populations and disability organizations such as centers for independent living, as well as agencies such as Red Cross, FEMA, and other state entities.
  
  
• Duration of the 100% FMAP. Ending all 100% FMAP payments after five or ten months could become a major disincentive to host states in providing HCBS and other expanding medically necessary services, given they would recognize that they would need to pay their share for those services once DRM ends. In many instances, in fact, it would take states at least a couple of months to identify and bring on HCBS providers and develop other necessary supports. Alternatively, some states might be forced to discontinue or reduce HCBS waivers to both survivors as well as their own residents when DRM ends in order to make up for the funding shortfall.
  
  Recommendation: Give the Secretary of HHS the authority to develop a plan with each state for phasing out the DRM FMAP over a longer period (e.g., 18 to 24 months) if a state can demonstrate that doing so is absolutely essential to the continued health and well-being of a particular group of beneficiaries.
  
  
• Institutionalization. Untold thousands of people with disabilities on Medicaid are needlessly institutionalized in every state of our country. A fifth of all nursing home residents indicate that they want to return home. They and others wait every day for the supports to be developed so that they could move back into their homes and communities. They are waiting for the most basic of American freedoms. An estimated 200,000 people with disabilities living in the community are on "waiting lists" for the Medicaid services they need to keep from going into a nursing home. Their wait for such vital supports should not be made longer due to this disaster. They must not be ignored in the understandable rush to enact relief legislation.
  
  Recommendation: In enacting this legislation, Congress must take deliberate steps to avoid making a bad situation that existed prior to Katrina with regard to a nationwide shortage of Medicaid community living services even worse. One specific way this could be done is to provide states with the funding to meet the most pressing community living needs of their own residents even as they are meeting the needs of hurricane survivors with disabilities. Such money is desperately needed to help people move from nursing homes into the community and assist others to continue to live at home.

In closing, we again want to thank you and your committee for this important legislation, and we support it. However, we do hope that our concerns can also be considered and included, if not in this legislation, perhaps in a companion bill. As Mark Johnson, a disability advocate from Georgia stated: “We understand why people with disabilities were evacuated without their wheelchairs, service animals, and caretakers. In an emergency, you do whatever you have to do to get the most people out in the quickest way possible.” However, now that the immediate crisis of evacuation is past, Chairman Baucus, we ask that you and other members of Congress ensure that the invisible emergency of poverty and disability services many of us face every day is addressed in ways that could make a real change in the quality of life for people with disabilities.

Sincerely,
American Association of People with Disabilities
ADAPT
National Council on Independent Living
National Spinal Cord Injury Association