Building a disability coalition a council priority
Health care providers, institutions, and organizations often
separate different disability groups into distinct "silos"
and these groups tend to operate autonomously, despite overlapping
experience and many shared concerns.
But forget diagnosis, say some experts, services should be based on functional need. "What does this person need to live as independently as possible?"
With this in mind, the Council's Systems Advocacy Committee has begun work to help organize a coalition of advocacy groups that can work on issues that concern all people with disabilities and is prepared to offer a grant of $5,000 to any organization willing to assume a leadership role.
Among those attending the first meeting last month were representatives from Advocates in Action, PARI Independent Living Center, Ocean State Center for Independent Living (OSCIL), The Brain Injury Association of Rhode Island, Ocean State Community Resources, PAL, RIPIN, The Fogarty Center, and others.
Issues vital to all these groups including those related to health care, jobs, transportation, and housing are on the agenda of work groups currently determining how Rhode Island's new Global Medicaid Waiver will be implemented. Under this new waiver, the federal government will relax its Medicaid rules to allow Rhode Island to spend federal Medicaid money on a broader range of services through streamlined administrative processes that would not have been possible without the federal approval.
Federal rules governing how Medicaid money can be spent do not ordinarily allow for the health care innovations. According to the Department of Human Services, the Global Waiver will facilitate increased consumer responsibility and choice, more emphasis on prevention and wellness, greater reliance on home and community based care as opposed to institutional care, and simplified administration of the Medicaid dollars.
While advocacy organizations are participating in the Global Waiver workgroups, people with disabilities are not well represented, according to some observers who feel that a coalition of people with disabilities that represented the views of the thousands of Rhode Islanders who benefit from Medicaid services would listened to.
Work toward the formation of a coalition will continue in December.