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CILS Can Make or Break Money Follows the PersonBy Janine Bertram Kemp The guiding principles of the George W. Bush administration have been a shock and awe foreign policy and a slash and burn domestic strategy. Yet tucked in the 2006 Budget Reconciliation Act and signed by the President was a 1.75 billion dollar pearl.of great price for people with disabilities. The Money Follows the Person (MFP) Federal Rebalancing Demonstrationcould mean that over the next 5 years, 100,000 people with disabilities will be freed from nursing homes and other institutional prisons to be relocated in their own homes. It also gives states and advocates the opportunity to put the services and systems in place that are essential for people with disabilities to live in the community. There were 37 states that submitted proposals for MFP funding, but as this issue of IT went to press, the names of the states has not been released. (Click here for state awarded grants ). The Centers for Medicare and Medicaid Services (CMS) is expected to award the MFP grants in January 2007. It is probable that all states submitting applications meeting the criteria outlined by CMS will receive some funds. In their Request For Proposals, CMS strongly encouraged states to include plans for systemic supports necessary to community based living; like plans to increase affordable, accessible, integrated housing. Whether MFP transforms the system enough to lead to true deinstitutionalization and choice could depend on independent living centers and others at the local level. The National Council on Independent Living (NCIL) joined ADAPT in leading the charge for MFP. But whether CILS throughout the country will make sure MFP succeeds is still a question. “The key to MFP after it has passed is as it was before. Advocates in the local communities are essential to implementation. People will not get out of institutions by themselves,” states Bob Kafka, National Organizer for ADAPT. Kafka is thought by many to be the top national expert on deinstitutionalization policy. “MFP is the most exciting thing that has happened in a quarter century. There is a potential for unbelievable systems change. But it is going to take grassroots work. As it progresses, people who are still in institutions that have multiple disabilities will have a more difficult time getting out. CIL’s and other grassroots organizations must insure that the supports they need are put in place,” notes Bob. MFP grants run over a five-year period. During that time, supports required for community living need to be systematized. The hope is that by the end of that period, sufficient service systems will be built to completely divert people with disabilities from nursing homes and other institutions. “A scarcity of affordable, accessible, integrated housing is one main factor keeping people with disabilities in institutions. In Pennsylvania there is no available housing, and people with disabilities rather live in homeless shelters than go back to a nursing home,” states Cassie James. James works for Liberty Resources, the Philadelphia CIL, and founded the Pennsylvania Action Coalition for Rights in Housing. She also heads up ADAPT’s Access Across America Campaign. “ADAPT is calling for The Department of Housing and Urban Development (HUD) to tie into Money Follows the Person. We want HUD to provide Section 8 Vouchers for the many thousands of people in institutions who have said they want out,” says Cassie. CMS requires that nursing homes survey inmates and ask if they would prefer to live in the community. It is suspected that many who answer “No,” would choose to live in their own homes, but are afraid to answer “Yes” for fear of reprisals; an institutionalized mindset or belief that services are not sufficient for them to live in the community. “The CIL paradigm needs to change from independent living to interdependent,” notes Kafka. Historically, when CILS were designed, it was thought that peer counseling, some advocacy, information and referral would be sufficient for people with disabilities to live independently. For people to get out of institutions and live in the community; extensive systems change and supports are required. “If CILS don't provide such services, some Area Councils on Aging (AAA) may. If CILS or triple A’s won’t take this challenge; traditional agencies will and we will have a total medical model with limited choice,” continues Bob Kafka. “ADAPT tossed the football and the CILS have to catch and run with it,” explains Bruce Darling, Executive Director of the Rochester CIL. Indeed, New York State CILS and advocates have made an end run. The NY State proposal for MFP includes some creative and hard won infrastructure development. Early in the process, NY CILS, the SILC, and ADAPT were invited to participate in planning the proposal. Everyone explained the significance of support services particularly as they relate to a lack of affordable, accessible, integrated housing. The state came back and wanted to do a housing study. Advocates gave a collective groan, went back to the table, and hammered out a remarkable proposal with 3 key parts. “CILS are always so happy the state is willing to do something for people with disabilities that we agree to do major systems change tasks for nothing…and end up not having the resources to do a decent job,” says Darling. “The 3 parts of our MFP program will give New York State about 60 full time advocates and start the educational process for diversion – so no one has to go into an institution in the first place,” he adds. First, MFP monies will fund a staff position at each center to do nursing home transition for not only those who have said they want out of a nursing home, but for those who may have answered “No” from fear of reprisal or an institutional mind set. That means New York State will have approximately 30 advocates going into nursing homes and arranging services to get each person out and living in their own homes. The second piece involves housing. Each center will receive funding for a full time staff person to develop additional affordable, accessible, integrated housing. That person can work with the state and local public housing authority to get Section 8 vouchers and other waivers as well as develop other public and private housing options. The third and smaller piece involves “diversion” or keeping people out of institutions in the first place. It calls for educational materials to be distributed in hospitals and rehab facilities outlining options for remaining in the community. Because of grassroots input and action, New York State has an MFP proposal with the potential to eliminate the institutional bias and have a future outlook of placing people with disabilities in their own homes. Several other states, including New Mexico, Pennsylvania, Texas, and Kansas have active, grassroots involvement in Money Follows the Person planning. There, people with disabilities are likely to see sweeping changes that mean they will have a real choice. Resources are available. Now is the time for CILS in each state with an MFP grant to insure the real choices and system change needed for its citizens with disabilities. Will they seize this opportunity and come forward? ******* "Janine Bertram Kemp is a writer and long time disability rights activist recently working on Real Choice Systems Change and Money Follows the Person. She is a board member of the National Coalition of Disability Rights and the Disability Rights Center. Janine lives on the west slope of Mt. Hood in Oregon." |
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