By Ellen Gutmaker & Paul Joslyn | New York Disability Advocates | Published: Apr. 07, 2026, 8:30 a.m.
Exterior view of the New York state Capitol and blooming tulip garden as legislative members work on passing legislation on Monday, May 8, 2017, in Albany, N.Y. (AP Photo/Hans Pennink) SYRSYR
Ellen Gutmaker is the CEO of Arc of Onondaga. Paul Joslyn is the CEO of AccessCNY and a board member of New York Disability Advocates (NYDA).
At 5:30 a.m., before most of Syracuse has even turned on the lights, a Direct Support Professional is scraping ice off her windshield in the dark. Snow is still falling, roads have not yet been plowed, and a travel advisory urges drivers to stay home.
She cannot.
Winter may be coming to an end, but for this workforce, the reality never changes.
A residential program that must be staffed around the clock is waiting for her. The people she supports rely on her shift to begin their day, receive medications, prepare meals and carry on the routines that allow them to live safely in their community. If she does not arrive, there is no backup plan. Care does not pause for a snowstorm.
Across Central New York, this reality does not change with the seasons. When schools close, when offices shut down or when conditions make daily life more difficult, Direct Support Professionals report to residential programs that operate 24 hours a day. They navigate difficult conditions and long hours to ensure individuals with intellectual and developmental disabilities remain safe and supported.
These programs never close.
As leaders of nonprofits serving individuals with intellectual and developmental disabilities and board members of New York Disability Advocates, we see firsthand how fragile this essential system has become. During this year’s state budget process, one priority stands out. Albany must include a 4% targeted inflationary increase to stabilize the nonprofit providers and workforce that sustain these services.
Direct Support Professionals are the backbone of New York’s I/DD system. Highly trained and entrusted with life-sustaining responsibilities, they support individuals with some of the most personal aspects of daily life. They administer medications, assist with meals, provide behavioral support, and help with daily routines from getting dressed in the morning to preparing for bed at night. The work is demanding, deeply personal, and built on trust.
Yet despite the responsibility and intimacy of this work, many Direct Support Professionals struggle to meet their own basic needs.
Over the past several years, providers have absorbed rising costs for groceries, fuel, insurance, utilities and transportation. This winter alone, extreme cold drove record utility usage and sharply higher bills across our region. Direct Support Professionals still had to drive, often in hazardous conditions, because the residential programs they staff operate continuously.
At the same time, state reimbursement rates have not kept pace with inflation.
When funding falls short of real costs, nonprofit providers face impossible choices such as limiting wage growth, reducing benefits or cutting programs. That instability directly affects people with intellectual and developmental disabilities, who depend on consistent routines and trusted relationships with the staff who support them.
Recruiting and retaining Direct Support Professionals for residential programs has become one of the most pressing challenges providers face. When experienced staff leave for higher-paying industries, providers must recruit and train new employees, relationships must be rebuilt and continuity of care is disrupted. Families feel the consequences while individuals lose stability.
This cycle is unsustainable.
A 4% targeted inflationary increase in this year’s final state budget is not an expansion. It is a necessary step to close the widening gap between the cost of delivering services and what the state reimburses providers, and to stabilize a workforce that communities depend on every day.
The I/DD workforce was strained before the pandemic, and the pressures of recent years have deepened those fractures. Providers are struggling to recruit new staff and retain experienced professionals, all while demand for services continues to grow.
Commitment and compassion fuel this work, but they cannot pay rising costs, absorb inflation, or stabilize a care system without meaningful investment from the state.
The state budget is more than a ledger of dollars and cents. It is a statement of who and what we value. If New York believes that people with disabilities deserve safety, dignity and the opportunity to live in their communities, then it must invest in the workforce that makes that possible.
In every season, in every condition, Direct Support Professionals show up.
It is time for Albany to do the same.