A mother has been told by a friend that she should "get on the waiver list." She does not know what the waiver is for, which agency keeps the list, or whether her son, who is fifteen, can be on it. She writes the word on the back of a receipt and puts the receipt in her purse.
Medicaid waivers can pay for the supports that let an adult with a significant disability live and work in the community. They are run by states, they work differently in each, and some have waiting lists, which makes the early questions important. This guide is an orientation to the idea, based on the federal Medicaid agency's page. It gives no state's rules, eligibility tests, or amounts. It is general information, not legal or benefits advice.
What an HCBS waiver is
The Centers for Medicare and Medicaid Services describe home and community-based services waivers as a way for states, within broad federal guidelines, to meet the needs of people who prefer to get long-term care services and supports at home or in the community rather than in an institution. The page says nearly all states and the District of Columbia offer services through waivers, that a state can run as many waivers as it wants, and that about 257 waiver programs were active nationwide as of that page.
Waiver is the right word because the state waives certain usual Medicaid requirements. CMS lists three: statewideness, which lets a state target a waiver to areas where the need is greatest; comparability of services, which lets a state offer services only to certain groups at risk of institutionalization; and the income and resource rules applied in the community, which lets a state provide Medicaid to people who would otherwise be eligible only in an institution.
What every waiver must do
CMS says state waiver programs must:
- show that providing waiver services will not cost more than providing the services in an institution;
- ensure the protection of people's health and welfare;
- set adequate and reasonable provider standards to meet the needs of the target population; and
- ensure that services follow an individualized and person-centered plan of care.
The last point matters for families of students in transition. A person-centered plan is the same idea as the student's own goals, preferences, and strengths in the IEP.
Who can get coverage
CMS says a waiver lets a state tailor services to a particular target group, and that within a group the state may set more criteria, such as age or diagnosis. Its examples of diagnoses include autism, epilepsy, cerebral palsy, traumatic brain injury, and HIV/AIDS. It says eligible individuals must demonstrate the need for a level of care that would meet the state's eligibility requirements for services in an institutional setting. And it says states choose the maximum number of people who will be served under a waiver program.
That last point is one reason waiting lists can exist, and the page does not give any state's numbers.
| Question | Who decides |
|---|---|
| Whether to offer a waiver and for which group | The state |
| Which services are included | The state, within the federal framework |
| Additional criteria such as age or diagnosis | The state |
| The level of care needed | The state's institutional eligibility requirements |
| How many people will be served | The state |
What waivers can cover
CMS says states can offer a variety of services under a waiver, including standard medical services and non-medical services. Examples it lists: case management, which means supports and service coordination, homemaker services, home health aide services, personal care, adult day health services, habilitation, both day and residential, and respite care. It adds that states can propose other types of services that may help divert people from institutions or move them into their own homes and the community.
Which of these a particular waiver offers is the state's choice. A waiver for people with intellectual and developmental disabilities may look different from one for people with physical disabilities.
How waivers connect to transition
For a student in transition, a waiver can matter in the same years as the other pieces on this site: services after school ends, supported employment, and independent living. See supported employment overview for work supports and independent living skills goals for the skills a student may still be building.
Because eligibility and waiting lists vary, families often start asking years before graduation. The Social Security Administration's youth page makes a parallel point about SSI: it tells youth and families to ask about programs, waiting lists, and documents well before the age-18 review. See SSI and transition-age youth.
Asking the right agency
The names of the state agencies differ. A waiver for adults with developmental disabilities may be run by a department of developmental disabilities, a department of human services, or the Medicaid agency itself. Start with the one that is easiest to find and ask where to go. The school's transition coordinator may know the local contact. Under the IDEA rule on IEP teams, to the extent appropriate and with the consent of the parent or the adult student, the school must invite a representative of any participating agency likely to be responsible for providing or paying for transition services. See interagency collaboration.
Keeping track
Write down the date you contacted each agency, who you spoke with, and what you were told. Ask for the application in writing. Keep a copy of anything you submit. If you are placed on a waiting list, ask for confirmation of the date and how to stay on it, since lists may need periodic updates. A one-page summary of your child's needs, strengths, and current supports helps every conversation.
Waiver mix-ups
- Confusing a waiver with regular Medicaid. It is a program built on waived rules for a target group.
- Assuming one national program. Each state runs its own.
- Waiting until graduation to ask. Waiting lists may exist.
- Treating the list as a promise. Being on it does not guarantee a start date.
- Skipping the person-centered plan. It is the heart of the waiver and should reflect the student's wishes.
Terms are in the glossary.