When I started as a Direct Support Professional (DSP), my world was focused and urgent. Ensuring that the people I supported with intellectual and developmental disabilities (I/DD) were safe and treated with dignity, and showing the world that “my guys” were “us” not “them” was my highest priority.
Back then, I was not thinking about Albany.
Today, as CEO of the Inter Agency Council and a board member of New York Disability Advocates (NYDA), representing thousands of workers and families across New York City, I think about Albany constantly. This year’s state budget will determine whether New Yorkers with I/DD continue to receive the care they rely on or whether life becomes unmanageable for the people and families who depend on us.
New York City has one of the largest and most complex I/DD service systems in the country. Across the five boroughs, nonprofit providers deliver residential supports, day programs, employment support, and myriad other community-based services. For thousands of families, this system is not a luxury but essential to daily life.
Yet the system is being pushed to the brink.
Demand for services is rising. According to data from the Office of People with Developmental Disabilities, New York’s I/DD population has increased by over 10,000 in the past 5 years.
At the same time, the cost of providing care in New York City is rising rapidly.
Inflation in New York City rose 2.9% over the past year, higher than the national average. Providers are paying more for food, transportation, utilities, insurance, and medical supplies. Necessities required to keep programs operating.
According to NYDA survey data, DSP wages have increased by more than 8%, but reimbursement rates have not kept pace. Providers must cover the difference, even as staffing shortages persist and competition for workers intensifies.
This is not sustainable.
Without more support, providers face impossible decisions: reducing programs, leaving shifts uncovered, or stretching staff to the breaking point. In this field, consequences are immediate. When staffing collapses, care is disrupted. When programs close, families lose stability. When services disappear, individuals with I/DD lose independence.
That is why we are urging Albany to include a 2.7% Targeted Inflationary Increase (TII) in this year’s state budget. This adjustment would help providers keep up with rising costs and protect access to essential services.
Funding alone will not solve the crisis. New York’s housing emergency is also a workforce crisis, and the I/DD system is feeling the impact.
A recent study by NYDA and Miami University of Ohio found that nearly half of DSPs experience housing insecurity. They support New Yorkers with significant needs, yet many cannot afford stable housing in the same city where their work is urgently needed.
Median rent prices in New York City rose 5.6% over the past year, and are expected to keep rising. For many DSPs, living near the communities they serve is becoming impossible.
That reality fuels burnout and turnover, weakening the workforce and disrupting care. In the I/DD system, consistency is everything. Individuals rely on routine, trust, and relationships built over time. When workers are forced out, that stability disappears.
Albany can take a meaningful step by establishing a CareForce Affordable Housing Lottery Preference (S.8676) to prioritize DSPs and other essential care workers for affordable housing near their workplaces. This would strengthen workforce retention and improve continuity of care for I/DD families.
As budget negotiations continue, lawmakers should remember: services cannot exist without workers. The workforce cannot remain in New York City if workers cannot afford to live here.
I have seen this system from every angle, from direct support work to executive leadership. The challenges are happening now, in every borough, in homes and programs across the city.
New York’s I/DD system is only as strong as the workforce behind it. This budget is Albany’s chance to strengthen that foundation.
The question is whether lawmakers will act in time.
Wini Schiff is the CEO of the Inter Agency Council of Developmental Disabilities Agencies, Inc. (IAC) and a board member of New York Disabilities Advocates (NYDA).
