Check with families before evicting retarded residents
By EDWARD CARRAWAY
Published February 5, 2007
The names and numbers are familiar: 2164 W First St., 5820 Buckingham Road, 3255 Hemingway Blvd., 3700 Williams Drive, 100 Bayou Drive and 1621 NE Waldo Road.
These are the addresses of people's homes - hundreds of people. They all happen to be planned communities, homes to people with similar interests and needs. Some are retirement communities, and some are upscale living centers located by the water and golf courses.
The people whose homes are at those addresses also are Floridians who have profound mental retardation, have multiple physical disabilities, are medically fragile and/or experience significant behavioral challenges.
Like Florida seniors and others who embrace planned communities, residents of Florida's residential campuses for people with profound mental retardation - Gulf Coast Fort Myers, Sunland (Marianna) and Tachachale (Gainesville) - have safe and comfortable accommodations, with ample opportunity to socialize with peers and neighbors. They receive compassionate life-sustaining support from specialists and direct care staffers, some of whom have worked with residents for decades.
Unlike planned communities for other constituencies, residential communities for people with mental retardation are under attack. From the beginning of these residents' lives, their families have waged monumental battles to obtain even minimum care to relieve the around-the-clock challenge of caring for children who never leave babyhood. Once services are secured for these vulnerable children, then the lifelong challenge to maintain good, attentive caregivers in acceptable service settings begins. These families should not also be burdened with concern about how their child will be served once they've passed on.
Yet, the threat to their loved one's homes is real.
Advocates opposing congregate care are so serious that they filed a federal lawsuit to force "community integration." The result was the 2005 closure of Community of Landmark in North Miami and the closure of Gulf Coast Center in 2010. Families of the affected residents were not consulted before or during the lawsuit; they learned about the closures reading the newspaper. Already, individuals have been transferred from residential campuses against their families' wishes, contrary to federal law.
In stark contrast, families embrace a "one size does not fit all" motto, pointing to choice and need as paramount. For some people with mental retardation, a small neighborhood setting, with minimal supports is the better option. For others, onsite specialized services such as dental, medical, therapy, work programs, religious services and recreation, are needed.
Families are justifiably concerned about alternatives to residential campus living. In the fall, Florida newspapers reported the state was pulling the license of a group home provider. The articles detailed concerns such as rodent feces, badly soiled pillowcases, black mold and dead roaches - problems that develop over time, leading to real questions about the state's monitoring of its 1,262 community providers still in business. What does the state really know about the people being "cared for" in the community?
Feeling strongly that their opinion about where their fragile family members receive services should be paramount, families of campus residents have secured the introduction of two state bills aimed at taking the decision about whether a facility should close from a single state agency and moving it to the Florida Cabinet, comprised of four elected officials, including the governor. Senate Bill 402 (sponsored by Sen. Mike Fasano) and House Bill 127 (sponsored by Rep. Peter Nehr) require notice and hearings, and propose the creation of a "Family Advisory Council" to be sure families from here forward have a recognized place at the table and a legitimate voice in the process.
Families of residential campus residents are perplexed as to why state legislation is needed to ensure they are consulted before their loved ones with mental retardation are evicted from their homes but are equally determined to be successful. These families have faced and met their challenges for decades, all to pursue the best interests of the family members that need their love and advocacy. Together we will succeed; we must.
Edward Carraway is the president of Supporters for Residential Choices for the Developmentally Disabled/DSI Supporters, an all-volunteer, statewide nonprofit advocacy organization. He can be reached at DSIsupportersInc@aol.com.