Medicaid funding is the backbone of services to people with developmental disabilities across the nation, and particularly in New York State. Medicaid comprises approximately 90 percent of the funding to The Arc New York and other developmental disabilities providers in our state. Cuts to Medicaid funding would prove devastating to the families we support and services we provide.  

The Medicaid program assists people with intellectual and other developmental disabilities to live full lives in the community, experience a high quality of life, and achieve economic security and personal independence to the extent possible for the person.  

However, Medicaid supports remain at constant risk. Advocates across the nation and state are working tirelessly to keep people with intellectual and developmental disabilities (I/DD) at the forefront of policy decisions. Any effort to change or otherwise reform the Medicaid program must take into account the impact of such change upon people with intellectual and other developmental disabilities, in order to prevent unintended harmful consequence. 

Medicaid provides: 

• Home and community-based services (HCBS) that help 4.5 million people with disabilities live, learn, work, and participate in their communities. 

• Early intervention for young children, school-based therapies, and equipment and technologies often excluded by private insurance. 

• Job skills training, placement, and coaching that enable people with disabilities to find meaningful, integrated employment opportunities. 

• $1 of every $6 spent on health care in the U.S., making it the nation’s largest single source of health coverage. 

• Support for schools, hospitals, and local economies. 

Yet Medicaid is already stretched thin: 

• 711,000 people nationally are waiting for HCBS, 73% of which are people with intellectual and developmental disabilities. 

• 40% turnover among care workers due to low reimbursement rates leaves families without critical support, which negative impacts their careers and finances. 

• 25+ million Americans lost Medicaid coverage after pandemic protections ended, often due to paperwork issues—not ineligibility. 

The Stakes for the Disability Community 

Medicaid is the cornerstone of daily life for over 10 million children and adults with disabilities, funding 77% of essential services for people with intellectual and developmental disabilities. Without it: 

• Many would lose their independence, forced into nursing homes or institutions. 

• States would face severe constraints on eligibility and funding, leaving families across the country without options for vital services. 

The 2025 federal budget reconciliation will decide Medicaid’s future. Proposed changes to current supports could deepen waiting lists, worsen the care workforce crisis, and destabilize our health care system. Reducing federal funding for Medicaid could also cost states billions annually, leading to an unprecedented rise in uninsured rates and health inequities.  

Federal Medicaid Assistance Percentage (FMAP) for New York state remains at 50%, which is the minimum for any state. This is despite New York taxpayers sending more to the federal government than it receives. In order to provide vital supports and services, HCBS must be appropriately funded via a permanent increase to the FMAP and certainly not a reduction to the FMAP floor. 

Defending dedicated funding for HCBS, providing paid leave for caregivers, and increasing the Supplemental Security Income (SSI) resource and asset limits continues to be part of our federal priorities. As the need for HCBS continues to grow, the funding and increased investments is more important now than ever.  

New York State Focus 

Every day, New Yorkers with I/DD rely on not-for-profit HCBS providers in the voluntary sector for programs and supports to lead a fuller, more inclusive life. A trained and dedicated workforce, along with consistent financial investments, are needed to provide these services, which are funded through the 1915c Medicaid waiver. If programs are unable to operate due to insufficient funding, these still needed services will become the responsibility of state agencies, at a higher cost to taxpayers. 

For decades, New York state has not made adequate and consistent investments to sustain the programs and services people with I/DD rely on. Our field has received very few cost-of-living adjustments (COLA) to keep up with inflation and rising costs in the last decade. The annual COLA is intended to increase budgets appropriately to adjust for these factors. In the past decade, inflation rose 30%, yet our field received only a 13.4% COLA rate increase over that time period. The proposed 7.8% rate increase for 2025-26 is partially derived from NYS statute, which states the annual COLA will be calculated based on the Consumer Price Index (CPI-U) from July of the previous year, which stands at 2.9%. The additional percentage requested constiutues what has been witheld over the past three years. 4.5% + 0.4% + 2.9 = (7.8%). Investing in an overall rate increase will support the increased cost of delivering quality services and sustain supports for the future. 

Simply put, it is absolutely critical that we secure adequate government funding to invest in our workforce and our programs to provide supports for the people we serve. Without this, our programs could be reduced or eliminated due to lack of staffing, and many years of progress toward community integration, choice, and deinstitutionalization will be lost.