Medicaid waitlists for home help are growing, so dementia families should plan for delays before paid care starts. HCBS means Home and Community-Based Services, and KFF counted more than 600,000 people on these lists across 41 states in 2025 in KFF's analysis of waiting lists from 2016 to 2025.
KFF also found the national total rose about 14% from 2024 to 2025. For dementia, delay often means family fills the gap at home. That makes early questions about your state's list and backup care urgent.
Medical information disclaimer: This article is for general educational purposes only and does not provide medical advice, diagnosis, or treatment. Always consult a physician or other qualified health professional about symptoms, medications, tests, or treatment decisions.
Official resources:
- Contact your state Medicaid agency to apply for Medicaid or check waiver status — Select your state to find where to apply and ask about HCBS waiver eligibility and waitlist placement.
- Search the Eldercare Locator for local respite, home care, and caregiver support — Enter a ZIP code or locality to find interim aging services while waiting for a waiver slot.
Table of Contents
- //www.macpac.gov/publication/state-management-of-home-and-community-based-services-waiver-waiting-lists-2/). Slots open only as capped capacity allows, so rising need does not add slots by itself. MACPAC notes waiting families often must cover interim personal care, respite, adult-day services, or nursing-facility placement.
- How long could the wait be?
- Why do state numbers not line up?
- What can you do while you wait?
//www.macpac.gov/publication/state-management-of-home-and-community-based-services-waiver-waiting-lists-2/). Slots open only as capped capacity allows, so rising need does not add slots by itself. MACPAC notes waiting families often must cover interim personal care, respite, adult-day services, or nursing-facility placement.
For dementia, that gap matters early. Supervision needs can rise fast. A capped system rewards early application and backup planning.
How long could the wait be?
KFF found people on the lists waited an average of 32 months overall in 2025, including about 15 months on waivers for older adults and adults with physical disabilities, in KFF's analysis of waiting lists from 2016 to 2025. The shorter average for older-adult waivers still means more than a year. Your state and waiver can differ from the average.
Fifteen months is still a long time with dementia. Memory, safety, and daily-care needs can change during that span. Treat the wait as active caregiving time, not idle time.
Why do state numbers not line up?
Current counts are hard to interpret and compare because states use different screening, eligibility-check, and maintenance practices, the Commonwealth Fund reports in its summary of CMS action on unmet HCBS need. One state may screen early, while another checks eligibility first. List cleanup rules also vary.
CMS finalized the Ensuring Access to Medicaid Services rule in May 2024 to require annual public reporting of waitlist size, average wait time, and list practices starting July 2027. The Commonwealth Fund describes that reporting change as a step toward clearer need. Until then, ask what your state counts.
What can you do while you wait?
Use the waiting period to protect safety and document need. Small records help later calls go faster.
The Alzheimer's Association estimated in 2025 that nearly 12 million Americans gave more than 19 billion hours of unpaid dementia care, valued at over $413 billion. Bring that care log to each call so staff see current need.
- Ask your state Medicaid office how its list works and how to stay active on it.
- Keep a short record of daily help needs, safety events, and family care hours.
- Line up interim help for high-risk gaps, such as daytime supervision, respite, and personal care.
- Revisit the plan when needs rise, and ask about other state or local options.
