Nearly five years ago, a nonprofit-run group home with room for six young adults with intellectual and developmental disabilities (IDD) made plans to open in Westchester County, N.Y. With group homes closing and waitlists growing, the new house, a place where these individuals could thrive in a safe and supportive environment, was the rare success story. It was also a beacon of hope for aging parents desperately worried about where their children would live out their lives.
Despite fierce opposition from the well-to-do community, often tinged with nimby-ism, the house was cleared to open. But it then faced an even more challenging issue: the hiring of Direct Support Professionals (DSPs), the people who deliver essential support to those with developmental disabilities. A severe statewide shortage of these trained caregivers — which has reached crisis proportions and affects countless individuals — meant the house did not open fully staffed. To this day it still can’t accommodate all six residents.
DSPs, who are part of the national Direct Care Worker sector, provide crucial support for individuals in a variety of settings. They assist with daily living skills, oversee recreational and educational activities, shop, cook, administer medications, manage behaviors and much more. It’s a difficult, extremely rewarding job staffed by dedicated professionals, but many are dropping out and potential new ones opting out because it doesn’t pay a living wage.
The New York State 2024-25 fiscal year budget fails to change this. In fact, it effectively gives DSPs a pay cut.
Despite being the backbone of the developmental disability care economy, many DSPs, who often work double and triple overtime to make ends meet and who are disproportionately represented by women of color, receive a meager starting wage of $16.13 per hour. Advocates, allies, and a handful of vocal legislators fought for the budget to include a 3.2% cost of living adjustment (COLA) for DSPs — knowing most if not all of it would go to nonprofit agency costs — as well as for a critical $4,000 wage enhancement to go directly to DSPs’ annual earnings. Instead, the budget allots a 2.8% COLA, which doesn’t even cover inflation, and omits the wage enhancement.
The Governor knows the numbers. Chronic shortages in state funding have led to nonprofit provider agencies, which serve 85% of needed developmental disability services in the state, being unable to offer the competitive wages needed to recruit and retain staff. This has resulted in a 31% turnover rate and nearly 20,000 unfilled positions statewide. Turnover costs for non-profit providers have risen to more than $100 million annually.
There’s a tendency for those without a personal connection to people with developmental disabilities to overlook the challenges faced by this population. This is a mistake. Increasing numbers of children are being diagnosed with these issues, including those diagnosed with autism spectrum disorder, according to the CDC. The prevalence of any diagnosed developmental disability now affects approximately 1 in 35 children nationwide.
Nearly four decades ago, the state closed the Willowbrook State School, a notorious snake pit of neglect and abuse for children and adults with disabilities that, most importantly, robbed them of their dignity and human rights. Today, the conditions are ripe for a return to such harrowing institutional warehousing.
While the New York legislative session is over June 6, legislators can be called back to Albany by Gov. Hochul for special legislative sessions. There is still time to course-correct and prioritize the needs of this vulnerable population. The DSP issue is just the tip of the iceberg for a community whose needs have historically been put on the back burner or ignored. Gov. Hochul must act now.
Roberta Bernstein, is Editor of The Boost, a developmental disability news site; Heather Ash Burroughs is Director of Advocacy at AutismUp and co-lead for the New York Alliance for Developmental Disabilities (NYADD)
