Action Alert
September 21, 2005
NCIL INFORMATIONAL ALERT: Call Congress to Support Grassley-Baucus Emergency Health Care Relief Bill & Oppose Harmful Changes to Medicaid
Earlier this week NCIL joined the American Association of Persons with Disabilities, the National Spinal Cord Injury Association and ADAPT in endorsing S 1716, a bill by Senate Finance Committee Chairman Charles Grassley (R-IA) and Ranking Member Max Baucus (D-MT) to address the need for emergency access to health care for the hundreds of thousands of people dislocated from Alabama, Mississippi and Louisiana by Hurricane Katrina. Co-sponsors are Senators Gordon Smith (R-OR), Thad Cochran (R-MS), Richard Shelby (R-AL), Blanche Lincoln (D-AR), Mark Pryor (D-AR) and Mary Landrieu (D-LA). Below and attached, please find our letter supporting S 1716 and making further recommendations about how best to meet the needs of individuals with disabilities dislocated by Katrina.
What does S 1716 do? Under S 1716 evacuees with incomes up to 100 % of the federal poverty level - up to 200% for pregnant women, children and SSDI recipients - would be able to obtain immediate Medicaid coverage. It includes options for comprehensive mental health services, including home-and-community-based services and would cover 100% of the cost with federal dollars in the states affected by Hurricane Katrina (Louisiana, Mississippi and counties under disaster status in Alabama). The coverage would last for five months, with an option to extend it for another five months. To ensure the fastest possible coverage, normal documentation and eligibility requirements would be waived and other application requirements streamlined and simplified.
We are pleased to report that the bill responds to the intense need for mental health and home- and community-based services among survivors, by waiving current state benefit limits and offering an extended package of mental health services. In some ways, this bill could even be seen as a test run for "Money Follows the Person" legislation.
What about budget reconciliation? In the aftermath of Hurricane Katrina, Congress has delayed the consideration of a possible $10 billion in cuts in funding to Medicaid through the budget reconciliation process until at least mid-October. NCIL would strongly object to reconciliation going forward with any provisions such as increased cost sharing, reduced access to essential health care benefits or reduced procedural protections that would harm beneficiaries and potentially aggravate the institutional bias. NCIL does not oppose change to address the institutional bias, but will resist any reconciliation bill that would balance the budget on the backs of beneficiaries, including people with disabilities.
TAKE ACTION:
Call YOUR Senators and Representative: Call Families USA's toll-free number 1-800-828-0498 to support this bipartisan bill and to voice our concerns with budget reconciliation. The hotline connects to the Capitol switchboard. It is vital that you call your Representative, particularly if he or she serves on the Energy and Commerce Committee, since prospects for S 1716 are uncertain in the House of Representatives.
FOR MORE INFORMATION: E-mail NCIL Health Care-PASS Subcommittee Co-chairs Judy Roy bhamilc@bellsouth.net and Stan Holbrook sholbrook@TRCIL.ORG or Acting NCIL Director of Advocacy and Public Policy Daniel Davis at daniel@ncil.org.
S 1716 Bill Response from NCIL, AAPD, ADAPT & National Spinal Cord Injury Association
September 19, 2006
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
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