Over the last 50 years, the system of care and support for those with intellectual and developmental disabilities (I/DD) has made leaps and bounds. As government and advocates work together to build a system that provides people with I/DD the vital supports and services in the least restrictive and most integrated setting, we cannot forget the atrocities and abuses of institutionalized I/DD care that spurred a nationwide movement to create a humane system of support. Forgetting our history will only lead to the neglect of the essential life-affirming system of I/DD care that we have worked to build.
New York’s own Willowbrook stands as a harsh reminder of the haunting and deplorable treatment that people with I/DD were subjected to when our institutions of care fail. At the peak of its attendance, more than 5,000 people with I/DD in Willowbrook were subjected to inhumane neglect, medical experiments, physical and sexual abuse.
Willowbrook’s painful history is always in the minds of the I/DD community, but understandably has faded to the background for many who were not directly affected. Mayoral candidate Eric Adams’ recent comments on the facility’s closure — which he has since acknowledged as a misstep — presents an educational opportunity to remind ourselves of the institution’s painful history so we don’t repeat its mistakes.
To prevent such mistakes, the state must continue to stand by the pledge following the 1975 federal court settlement that resulted in the Willowbrook Consent Decree: Each individual has a “constitutional right to protection from harm.” Following that landmark case, the state showed a commitment to work with the I/DD community by building today’s quality community care and supports for New Yorkers with intellectual and developmental disabilities.
However, over the last decade, the I/DD community has struggled to sustain this vital support system. Similar to the 1971 state budget freeze of Willowbrook, which resulted in 500 employees taken off the payroll, the lack of state funding over the last decade has resulted in a workforce crisis and critical shortage of direct support professionals in the I/DD community.
Further exacerbated by the COVID-19 pandemic, the I/DD care sector has seen significant loss of these individuals, who provide life-preserving services to more than 100,000 New Yorkers with I/DD. Across the state, service providers are facing vacant staffing positions because they do not have the state funding. They need to provide workers with a sustainable living wage. Previously providers were able to maintain salaries at above minimum wage to attract and retain workers. However, with the state-mandated rise in the minimum wage and no commensurate increase to support higher salaries for the people who staff our centers, workers are turning to less stressful, better-paid jobs in the food and retail sectors.
Direct support professionals provide critical, life-preserving services for people with I/DD such as preparing meals, administering medications and helping with mobility and personal care. These essential workers were there throughout the pandemic, putting their own lives at risk to help those who needed them the most. They selflessly provided the high quality of care that must be sustained to live up to the pledge the state made to those with I/DD. Unfortunately, without immediate action to solve this workforce crisis, New York is once again on the path to repeat the mistakes of its past.
While much work has been done since Willowbrook, there is yet much more to do. New York’s I/DD community needs robust investments in programs to fund a living wage to support recruitment and retention, and a long-term funding structure that keeps pace with rising costs.
Willowbrook stands as a stark reminder to all, of the tragic history that those with intellectual and developmental disabilities have faced in the hands of neglectful, institutionalized care. To honor the legacy of those who survived, we must continue to do better. New York’s I/DD community looks forward to working with our elected officials to ensure that our neighbors, friends and family are treated with the dignity and care they are promised.
Constantino is president and CEO of the Cerebral Palsy Associations of New York State. Geizer is CEO of the Arc New York. McAlvanah is president of the New York Disability Advocates and executive director of the InterAgency Council of Developmental Disabilities, Inc.
