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.
Medicaid is still at risk and 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. Dedicated funding for Home and Community Based Services (HCBS), paid leave for caregivers, and increasing the Supplemental Security Income (SSI) resource and asset limit 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.
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 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 nearly 30%, yet our field received only a 10.5% COLA over that time period. The proposed 3.2% COLA for 2024-25 is 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. Upholding the COLA will support the increased cost of delivering quality services and sustain supports for the future.
On the federal level, the 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.
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.
The Arc New York, along with thousands of other developmental disabilities providers and advocates across the state and nation will vigilantly defend the Medicaid program from any actions in Albany and Washington that seek to reduce Medicaid funding.
We call on Congress and New York state to:
- Increase the FMAP for New York state by 10 percentage points. This is in line with the proposal advanced through the Better Care Better Jobs Act. (R. 547/S. 100)
- Include the statuary COLA in the NYS enacted budget, which stands at 3.2% for FY25
- Close the historic funding gap between state and non-profit providers by providing an additional and ongoing sustainability investment in the form of a Direct Support Wage Enhancement (DSWE) of $4000 for direct care staff.
- Raise SSI asset limits from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for married couples, indexing both to inflation moving forward. (2767/H.R.5408)
- Reintroduce R.761 (117th Congress), which would end consideration of a spouse’s income and assets and disregard marital status for SSI recipients with intellectual and developmental disabilities. Currently, SSI is reduced by 25% for a married couple, which is termed a “marriage penalty
- Champion Funding for Medicaid HCBS Introduced through the Home and Community-Based Services (HCBS) Relief Act of 2023 (S.3118). This bill would increase funding for people with disabilities to live in their communities. The bill would provide two years of additional Medicaid funds to:
- Improve access to HCBS by increasing direct care worker pay and benefits;
- Decrease the number of people on waiting lists for HCBS (currently over 650,000 nationally); and
- Pay for assistive technologies, staffing, and other costs that facilitate community integration.
We will tirelessly advocate for the Medicaid funding needed to appropriately support people with I/DD in all circumstances, settings, and situations.