Developmentally disabled New Yorkers are being left behind by Gov. Hochul
Almost five years ago, an organization-operated group home designed for six young adults with intellectual and developmental disabilities (IDD) planned to open in Westchester County, N.Y. Despite group homes shutting down and waitlists growing, this new home was a rare success story, providing a safe and supportive environment for these individuals to flourish. It brought hope to aging parents concerned about their children’s future living arrangements.
Despite facing strong opposition from the affluent community, and overcoming the challenges to open, the house encountered another hurdle: the shortage of Direct Support Professionals (DSPs), the caregivers who offer essential support to individuals with developmental disabilities. The severe lack of these trained caregivers across the state meant the house couldn’t open fully staffed. Even today, it struggles to accommodate all six residents.
DSPs, part of the national Direct Care Worker sector, play a crucial role in supporting individuals in various settings. They assist with daily living skills, organize recreational and educational activities, handle shopping and cooking, administer medications, manage behaviors, and more. This job is demanding yet fulfilling, but many professionals are leaving due to low wages that are insufficient to sustain themselves.
The budget for New York State’s 2024-25 fiscal year fails to address this issue, effectively reducing pay for DSPs. Despite being the backbone of the developmental disability care economy, many DSPs, especially women of color, receive a starting wage of $16.13 per hour. Advocates pushed for a 3.2% cost of living adjustment (COLA) and a $4,000 wage enhancement for DSPs, but the budget only includes a 2.8% COLA, falling short of inflation coverage and omitting the wage enhancement.
The Governor is aware of the challenges. The chronic lack of state funding has led to non-profit provider agencies, serving 85% of needed developmental disability services in the state, struggling to offer competitive wages to attract and retain staff. This has resulted in a 31% turnover rate and nearly 20,000 vacant positions statewide, costing non-profits over $100 million annually.
It’s easy for those without personal connections to individuals with developmental disabilities to overlook their challenges. However, more children are being diagnosed with these conditions, including autism spectrum disorder. The prevalence of diagnosed developmental disabilities affects around 1 in 35 children nationwide.
Almost forty years ago, Willowbrook State School closed after being exposed for neglect and abuse against children and adults with disabilities. Today, the conditions are ripe for a return to such distressing institutional practices.
Even though the legislative session ended on June 6, Gov. Hochul can call legislators back to Albany for special sessions. There is still an opportunity to prioritize the needs of this vulnerable population. Addressing the DSP issue is just the beginning of advocating for a community that has historically been neglected. Gov. Hochul must take action now.
Roberta Bernstein is the Editor of The Boost, a news site covering developmental disabilities. Heather Ash Burroughs is the Director of Advocacy at AutismUp and co-leader of the New York Alliance for Developmental Disabilities (NYADD)
