Why Waiting Lists Exist

Unlike standard Medicaid benefits (which are entitlements — meaning anyone who qualifies must be served), HCBS waiver programs are capped. States receive federal approval to serve a specific number of people under each waiver. When all slots are filled, new applicants are placed on a waiting list.

This cap exists because waivers are designed to be cost-neutral compared to institutional care. States must demonstrate that the waiver program costs no more than nursing home care would for the same population. Unlimited enrollment would undermine this cost-neutrality requirement.

How Long Are Waiting Lists?

Waiting list lengths vary enormously by state and by waiver program. Some states have relatively short waits — a few months for certain programs. Others have waiting lists measured in years. States like Texas, Florida, and Georgia have historically had some of the longest waiting lists for developmental disability waiver programs, with some individuals waiting a decade or more.

Waiting list lengths also vary by population. Developmental disability waivers tend to have the longest waits because the need is lifelong and the population is large. Aged and disabled waivers may have shorter waits in some states.

How to Get on a Waiting List

The most important thing to know about waiting lists is this: apply as soon as possible, even if you don't need services right now. Your position on the list is typically based on your application date, so every day you wait to apply is a day lost.

• Contact your state's Medicaid agency or the agency that administers the specific waiver
• Ask specifically about HCBS waiver programs for your population (aged/disabled, developmental disabilities, etc.)
• Submit a formal application to be placed on the waiting list
• Keep your contact information updated — people are removed from lists if they can't be reached
• Ask about priority criteria — some states move people up the list based on urgency

What to Do While You Wait

Being on a waiting list doesn't mean you have no options. Several alternatives may be available while you wait for a waiver slot:

• Standard Medicaid State Plan personal care services — if your state offers them, these are an entitlement with no waiting list
• Area Agency on Aging services — many provide home care, meals, and support services funded through the Older Americans Act
• Private pay home care — costly but available immediately
• Family caregiving — with or without pay through other programs
• Veterans benefits — if the person needing care is a veteran, VA programs may help
• Nonprofit and community organizations — some provide free or low-cost home care assistance

Advocating for Change

Waiting lists for Medicaid waiver programs are a policy issue, not just an administrative one. Many disability and aging advocacy organizations work to increase waiver funding and reduce waiting lists. Contacting your state legislators about waiver funding is one way to advocate for change.