Every day, millions of people across the United States rely on long-term services and supports (LTSS) to lead full and independent lives. These supports—ranging from in-home caregiving and personal attendant services to assistive technology and transportation—are not about comfort or convenience. They are about dignity, inclusion, access, and human rights.
Conversations about LTSS often focus narrowly on aging, yet more than half of Medicaid LTSS users are under the age of 65 and live with disabilities. This includes children with developmental disabilities, adults with spinal cord injuries, working professionals managing chronic conditions, and countless others navigating systems not built with them in mind.
As demand for LTSS grows, people with disabilities must be at the center of every conversation—across funding, program design, delivery, and reform—to build a system that is equitable, inclusive, and sustainable.
Funding: Medicaid is the sole pillar of financial support for LTSS
Long-term services and supports are primarily funded through Medicaid, which has strict income and asset limits. As a result, many people with disabilities must remain in poverty to retain life-sustaining services, making it nearly impossible to work full-time, save for the future, or achieve financial security.
Private long-term care insurance is not a practical solution either. High costs, rising premiums, [...]