By Sandi Rosenbaum, Special Education Advocate

The announcement on March 27, 2025 from HHS unveiling its “Transformation to Make America Healthy Again” indicated that President Trump’s proposed budget for the fiscal year beginning June 1, 2025 would close critical agencies serving people with disabilities, including the Administration for Community Living (ACL) and the Substance Abuse and Mental Health Services Administration (SAMHSA).

HHS’s initiative is part of Federal cuts to Medicaid proposed at $880BB over the next 10 years. Cuts of this magnitude, together with the proposed reorganization, threaten vital services for people with disabilities. Nationwide, services for older adults and people with disabilities represent over 52% of total Medicaid expenditures, making it nearly impossible to effectuate large reductions in spending without impacting services to these individuals.

However, the extent of the impact on New Yorkers remains unclear. The budget adopted by the New York State Legislature in late April nominally maintained Medicaid services and spending. However, these programs all rely on Federal matching funds whose extent was still unknown. Thus, New York may have to cut services, or restrict approvals for new or increased services, if it cannot find other state monies from which to fund a Federal shortfall, and no provision has been made public regarding the allocation of such contingent cuts.

Elimination of ACL Could Restrict Medicaid Waiver Services

The Administration for Community Living (ACL), proposed to be reorganized out of existence by dividing up its responsibilities among other agencies, administers programs associated with Medicaid’s Health and Community Based Services (HCBS). Originally, Medicaid supported only institutional care, such as nursing homes and state hospitals and institutions for people with disabilities. People who wanted to keep their loved ones at home, such as an elderly parent staying in their own home or a child with developmental disabilities and/or medically complex care needs, or in a nearby supervised community residence rather than isolated in a state hospital, did not receive any support for these choices or funding for appropriate care.

HCBS waiver services, granted and administered in New York through the Department of Health, the Office for People with Developmental Disabilities and the Office for Mental Health, were developed to permit qualifying individuals to waive their right to institutional placement in order to receive Medicaid services to remain in their homes. These waiver services include not only care and habilitative services at home (including adaptive modifications such as bathroom grab bars, stair climbers, and wheelchair-adapted vans) but also day programs for adults beyond school age, as well as supported employment services for appropriate candidates.

Unlike many states, New York does not cap enrollment in HCBS waiver programs, which can cause years-long waits to access these supports. However, waiver enrollment does not guarantee access to services, so that New Yorkers deemed eligible for these services may not be able to find a provider with capacity to deliver them.

Advocacy Groups Voice Serious Concerns

Advocacy groups have expressed serious concerns that the demise of ACL could have critical impact on vulnerable New Yorkers. For example, the group Justice in Aging has noted that older adults and people with disabilities will lose the ability to choose where and how they want to live and fully participate in their communities. Many could be forced into institutions when they need help with activities of daily living such as bathing, dressing, and eating. Families who are struggling to care for loved ones will have nowhere to turn for the training, respite, and support they need, notes the group. The National Association of Councils on Developmental Disabilities has also voiced serious concerns. They note that the ACL has not only empowered individuals with disabilities to fully participate in society, but ensured that communities have the benefit of hearing the valuable voices and all-important perspectives of people with disabilities

Meanwhile, SAMHSA, a critical source of mental health supports, would be absorbed into a new AHA “Administration for a Healthy America” to “increase operational efficiency and assure programs are carried out because it will break down artificial divisions between similar programs.” However, mental health advocacy groups decried the move, as it would jeopardize successful programs and imperil years of progress. They stated, “As a country, we must ensure the functions of HHS and its agencies are able to continue their missions unimpeded to support the mental health of our communities as well as to focus on addressing chronic disease with a strong emphasis on prevention and early intervention.”

There are still many unknowns regarding the future of long-term community Medicaid supports for people with disabilities. Contact an attorney to learn what you can do to protect your loved ones from an uncertain future. Also, you may wish to reach out to your elected representatives.