What is Katie Beckett Medicaid?

What the name means

Families of children with serious health needs often face a hard problem. The child needs a lot of care, and regular Medicaid is out of reach because the parents earn too much. Katie Beckett Medicaid was created to help with that problem.

Families and states use two names for it. Katie Beckett is the name most families know. TEFRA is short for the Tax Equity and Fiscal Responsibility Act of 1982. That federal law added the option to the Social Security Act. Both names point to the same idea, and states may use either one or pick a name of their own.

The option is in federal law and in a Medicaid rule. A state can choose to cover children who are 18 or younger and who qualify as disabled. The child must also need the level of care that a hospital or nursing facility gives. That care must be given at home instead. This is a state option, so the state decides whether to offer it.

Why a parent's income may not block coverage

Medicaid.gov explains that some programs can use special rules for people who would be eligible only if they lived in an institution. It says this often comes up because of the income and savings of a spouse or parent. That is the problem this option solves for children.

In plain words, the state asks a different question than usual. It asks whether the child would qualify for Medicaid if the child lived in a medical facility. If the child needs that much care and can safely be cared for at home, the state can cover the child at home. A child can qualify even when the family's income is above the usual limits for children.

Our who qualifies for Medicaid guide explains the regular rules. This option is a separate path, so a family told no for regular Medicaid should still ask about it.

What the family needs to show

The federal rule lists what a state must check for each child. Every state works out the details in its own plan, but these are the main points.

• The child must be 18 years old or younger.
• The child has a disability under Social Security's rules for children. Federal law has a test for children under 18. The child needs a medical or mental condition that causes marked and severe limits on daily functioning. It must be expected to last at least 12 months or to result in death.
• The child needs the level of care a hospital, nursing facility or similar facility would give.
• It is appropriate to give that care outside a facility, which means at home.
• The state expects the child's cost of care at home to be no higher than the cost of the care in a facility.

The state weighs each child's case on its own. The rule says the state must explain in its Medicaid plan how it checks the cost of home care against the cost of a facility. The state may ask for medical records, forms from the child's doctors and a description of the daily care the child needs. Before you start gathering papers, check with your state about which ones it wants.

Some states use a waiver instead

States have more than one way to help these families. Some run a home and community-based services waiver for children. A waiver is an approval from the federal government for a state to run a program with special rules. Medicaid.gov says a waiver lets a state serve a certain group. One example it names is technology-dependent children. Special income rules can also apply under a waiver, says Medicaid.gov. They help people who would be eligible only in a facility, often because of a parent's income.

A federal rule backs this up by letting a state cover a group of people who live in the community. These are people who would be eligible for Medicaid if they lived in an institution. Without the waiver services, they would need the level of care of a hospital or nursing facility.

A waiver can have a limit on how many people it serves, and Medicaid.gov says states choose that number. Federal rules also make states report on waiting lists for waiver programs. If your state has a waiting list, ask to be added now and ask what help is available in the meantime.

This page does not name states, because the programs and the rules differ from state to state. Your own state's Medicaid agency is the right place to learn what it offers.

How to ask your state

A phone call is a good first step. Medicaid.gov lists the Medicaid and CHIP office for every state, so pick your state and use the number or website it lists.

1. Ask if your state has a Katie Beckett or TEFRA option, or a waiver for children with disabilities. Find out what the program is called there.
2. Ask what the child must show and which medical papers you need.
3. Ask about the application steps and how long a decision usually takes. Find out if there is a waiting list.
4. Ask how to appeal if the answer is no. Medicaid rules give you the right to ask for a fair hearing, which is a review by someone who did not make the first decision.

Write down the date of each call and who helped you, and keep copies of every form and letter. Our how to apply for Medicaid guide covers the general steps and appeal rights.

What Medicaid can cover for a child

Medicaid.gov lists a full set of checkups and treatment for children, called EPSDT, as a benefit every state must offer. It also lists home health services as a required benefit. Other services are optional for states, such as personal care and private duty nursing. What the child gets depends on the state and the program.

Children also may qualify for dental coverage under Medicaid. Our Medicaid dental coverage guide explains what to expect. While you wait for a decision, a community health center charges by income, and you can search for a cash-pay doctor near you. This page is general information and not medical or legal advice. If you think you are having an emergency, call 911 or go to the nearest emergency room.