Trust is built on action. Gov. Hochul has broken faith with disability advocates across New York State after years of empty promises and the recently enacted budget for Fiscal Year 2025.
As a mother of an adult daughter with intellectual and developmental disabilities (I/DD), I am deeply concerned about the future of New York’s disability services. I always thought that after three generations rallying self-advocates, families and community partners we’d come to a shared understanding with lawmakers about the importance of maintaining the health, independence and inclusion of the disability community.
I no longer believe that.
At this time in history, I’ve seen how rights and funding can erode if concerned citizens do not step forward. Currently, New Yorkers with I/DD have no guarantee that the pressing challenges they face to their health and independence will improve. There’s no urgency to address the years-long waiting list for group homes, the historic staffing crisis disrupting essential care each hour of the day, or the rising inflation rates endangering the long-term sustainability of nonprofit disability services agencies.
Every second and every dollar counts when there are not enough disability services or staff for children or adults with I/DD or delays across New York State. It’s especially troubling when you consider nonprofit agencies provide services to the majority of New Yorkers with I/DD. I can tell you that agencies big and small are experiencing the consequences of razor-thin budgets.
Imagine if the turnover of essential staff within your industry matched the disability sector where 1 in 3 direct care staff leave their jobseach yearresulting in $100 million in turnover costs.
It’s difficult to process the continued disenfranchisement of people offering hands-on support to those with disabilitiesknown in the industry as Direct Support Professionals. Nearly half of these workers face food insecurity and unstable housing conditions due to low pay, according to a recent report by New York Disability Advocates and Miami University.
From personal experience, I can share how distressing and disruptive it can be when talented staff leave not because they aren’t fulfilled by their job, but because they are not paid a living wage. This “satisfaction gap” is real and was present in 85% of the DSPs surveyed in the NYDA study.
What makes this especially frustrating is that on the surface, Gov. Hochul appears to be an ally, from establishing New York State’s Office of the Chief Disability Officer to making bold statements about the “neglect and disinvestment” of New Yorkers with disabilities. However, appearances can be deceiving. To me, the initial 1.5% Cost of Living Adjustment included in the executive budget indicated the governor will do enough to say she did something, but not enough to actually help. It’s faulty to suppose that the 5.4% COLA for Fiscal Year 2023 was sufficient to right-size the sector, especially after a decade without investment.
In response to advocates’ calls for a 3.2% COLA and direct support wage enhancement, the final budget included an investment of 2.84%with 1.7% allocated to wage increases for DSPs and most staff. This budget will help agencies survive, but not provide the necessary funding to ensure people with I/DD can thrive.
I am disappointed and deeply concerned by what this budget foreshadows for New Yorkers who depend on the state for their most basic needsand especially for the most vulnerable for whom this is a matter of life or death.
Saundra Gumerove is president of disability agency AHRC Nassau’s board of directors.
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