By Mary Jo Butler
In New York State, individuals with developmental disabilities and their families are paying a heavy price for the governor’s refusal to authorize the funding necessary for their well-being.
Years of underfunding have resulted in thousands of people currently being without supportive housing and day treatment programs. Neither is New York providing the funding necessary to attract and keep the direct care staff who are so crucial in the lives of our loved ones. Our state’s history provides a glaring example of the dangers of underfunded programs.
In the 1970s New York State institutionalized many people with developmental disabilities. The most notorious was Willowbrook, where people were kept in overcrowded, unsanitary conditions and were liable to be beaten and chained and treated as guinea pigs in scientific experiments.
When Willowbrook opened, it was seen as a progressive and enlightened program. But it became overcrowded. While Willowbrook grew, its funding did not. Willowbrook could not meet the needs of the residents or properly train the staff who worked with them. The result was mass mistreatment of a population of people unable to defend themselves. In 1972 a young reporter, Geraldo Rivera, exposed the horrors of Willowbrook and shocked the entire nation.
Under the scrutiny of a conscience-stricken populace, the state overhauled its entire system. Necessary funding was provided to implement reforms. Supportive services for individuals were community-based and were delivered in a timely manner with a minimum of red tape. There were housing options and day programs available for those who needed them. Service providers were easily accessible and families’ wishes and concerns were heard and responded to in a timely manner. The state had truly improved the quality of life for its citizens with developmental disabilities.
In 2008 we experienced an economic collapse. Many people had to make sacrifices, but abdicating responsibility to people with developmental disabilities is not an acceptable cost-saving measure. Yet, since 2008, the state has been in the process of dismantling the service delivery system that so many people labored to establish over the years. Due to the lack of adequate financial support in the state budget since 2008, there are no longer enough day treatment openings and available housing options. And the absence of an adequate pay scale for staff results in a serious shortage of qualified workers.
Today individuals are faced with the lack of housing, day programs and direct care providers. Because they are scattered throughout the state, the urgency of their need is not as visible as it was at the time of Willowbrook. But the causes are similar. Lack of financial support is overwhelming the system and the result is mass mistreatment of vulnerable people. Will we end up with our 21st century version of Willowbrook?
Mary Jo Butler, of Buffalo, is a member of the Developmental Disabilities Alliance of Western New York Family Committee and the parent of a 28-year-old with a developmental disability.