The planned 2013 closure of the Vineland Developmental Center — a residential facility for developmentally disabled women in southern New Jersey — is being anticipated with very mixed feelings. Even as disability advocates and families herald the institution’s closure as a sign of progress and a shift to having individuals with developmental disabilities live in community settings, many — including families who had thought their adult children would remains at the Vineland facility for the rest of their lives — would prefer that it remain open. The conflicted responses to Vineland’s closing reflect the ongoing difficulties for meeting the needs of individuals with developmental disabilities, especially in a time of budget cuts.
The 1999 Olmstead decision affirmed the rights of individuals with disabilities to live in community housing; the federal government ruled that it is unconstitutional to segregate individuals with disabilities in institutions. Currently in New Jersey where I live, one-fifth of those with developmental disabilities who receive state funding for housing live in institutions. As an Associated Press story that appears in the Atlanta Journal-Constitution notes, that is “a rate nearly three times the national average and higher than any state except Mississippi.”
Four other New Jersey institutions like the Vineland facility were closed in the 1990s. More than 5,700 people lived at 11 such facilities in 1984; by the end of last year, fewer than 5.700 still were placed at the remaining seven centers. Vineland itself housed over 2000 women in the 1950s, but fewer than 400 now.
Housing someone at a facility like the Vineland one costs an average of $260,000 per year in state and federal funds, including health costs. In contrast, housing someone in a community placement costs an average of $160,000, not counting about $8,400 in Medicaid-provided health care and $3,400 in administrative costs.
One concern about the closing of state facilities and psychiatric hospitals is the loss of state jobs. Someone who has been employed at Vineland as a direct care worker for about 13 years has a salary of $44,000. In contrast, starting salaries for workers in one of the non-profit agencies that staffs group homes in southern New Jersey is $10/hour. With the closure of the Vineland facility, some 1,300 employees could lose their jobs. Families are understandably more than concerned about the care their adult children with disabilities will receive in new environments, and with care workers who do not know them and may not have the same kind of training, support or supervision.
My autistic son Charlie is 14 years old. I think every day about where he will live as an adult and what he will do, especially after my husband and I are no longer here. Charlie has thrived thanks to years of specialized schooling, therapies and expert medical care. He does need 24/7 care, a reality we’ve been very much reminded of as Charlie’s school year ended on Thursday. He starts Extended School Year (summer school) on June 29th; in this block of time, my husband and I are Charlie’s only caregivers. Charlie needs a lot of physical activity to help keep his most difficult behaviors under control so our days are filled with numerous long (over 10 mile) bike rides and long walks, and some long hours at home the rest of the time: Charlie doesn’t read or care to watch movies and finds many public places, from restaurants to stores to public transportation, overwhelming, so his activities are currently somewhat limited.
While we envision Charlie living someday in a group home or other community placement with round-the-clock care workers, there are many concerns. A major one is the staff who will be taking care of him, and who are key to his functioning.
A recent New York Times article highlighted the crisis in care for the mentally ill. Last year, Stephanie Moulton, a 25-year-old counselor at a group home for the mentally ill in Revere, Massachusetts, was brutally killed by one of the residents, 27-year-old Deshawn James Chappell, who is schizophrenic. Moulton was alone at the group home the day she was killed by Chappell, who had a history of violence and was not taking his medication. Her death on January 20 “stunned the mental health care community in Massachusetts,” and occurred just a few days before Gov. Deval Patrick released a budget that “would slash mental health spending for the third year in a row.”
Mental health issues and developmental disabilities are very different conditions. But the concerns about adequate staffing levels and safety for residents and workers in group homes and other community placements are the same. I don’t want my son to live segregated from the community in an institution but he does need a lot of care and has thrived with well-trained, appropriately compensated staff. We need to recognize that cutting corners in the care of those with some of the greatest needs only sets us up for real and terrible tragedies. It’s appalling that those who take care of those who have so many needs are paid so little; reading about Chappell’s troubled history, it is baffling that a single careworker, was at the group home where he was placed. We need to start planning now to provide the best care for individuals with disabilities to live free and dignified lives in the communities they belong to. But we can’t set them up for failure by not providing the level of care they very much need and deserve.
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Photo of a man with developmental disabilities and his family by PBoGS.