The Katie Beckett Medicaid Waiver is a program that allows children with significant disabilities or complex medical needs to receive Medicaid services in their homes, even if their parents' income would typically disqualify them from Medicaid eligibility.
In this article, we explore the history of the waiver, how it was created in response to one family's advocacy, and the significant impact it has had on families across the country. We’ll also discuss eligibility requirements, services covered under the program, and how to apply.
The Katie Beckett Medicaid Program (KB) was created in 1982 under the Tax Equity and Fiscal Responsibility Act (TEFRA). This program allows states to disregard family income for certain disabled children. It provides benefits to disabled children 18 years of age or younger who qualify under §1614 of the Social Security Act and live at home instead of in an institution. Eligibility is based on the level of care the child needs, not based on medical diagnosis.
When Katie Beckett was five months old, she got sick with viral encephalitis, which made her need a ventilator for 12 hours a day. Her parents' health insurance ran out, so Medicaid paid for her care, but only in the hospital.
Even though her doctors said she could live at home with the right help, Medicaid's rules at that time meant the ventilator could only be paid for in the hospital, even though it cost a lot more than caring for Katie at home. If she left the hospital, her parent's income and resources would have been considered, and Katie would have lost Medicaid.
In 1981, Katie's mother, Julie, brought the case to Congress and then-President Ronald Reagan's attention. Just before Christmas, the eligibility rules were waived so that Katie could go home. In 1982, the Tax Equity and Fiscal Responsibility Act included the "Katie Beckett Option," allowing all states to cover in-home treatment for children with disabilities who needed institutional-level care, regardless of parental income or resources, as long as the cost of care at home was not greater than in an institution.
Despite needing home care for breathing problems her whole life, Katie graduated from college with a degree in English and creative writing and worked on a novel. She held jobs and worked with her mom to support the rights of people with disabilities. Katie passed away in 2012 at the age of 34, but her mom continued to be a strong advocate for families of children with disabilities.
To qualify, a child must be under 19 and have a disability requiring an institutional level of care, like an intermediate or nursing facility. Additionally, to qualify for the waiver, only the child's income and assets are considered, not their parents', in most states.
Unlike Home and Community-Based Services (HCBS) waiver programs, states cannot limit the number of participants in the program, so there are no waiting lists.
Note: TEFRA and Katie Beckett are terms often used interchangeably. Katie Beckett is the child whose advocacy led to the creation of TEFRA options, and some states brand their TEFRA programs under her name.
Under TEFRA, children with disabilities who meet specific medical and financial criteria can receive Medicaid services while living at home instead of in an institutional setting. The services offered under TEFRA vary by state but typically include the following:
While services can vary from state to state, these are typical examples of the types of support that TEFRA programs provide. For more detailed information, visit your state's TEFRA program site (linked above).
The application process for the Katie Beckett Waiver depends on your state but generally involves several steps. Obtain the necessary application forms from your state's Medicaid agency—online, by mail, or in person.
Carefully review the forms and provide accurate and complete information. You will need medical records, disability paperwork, proof of income, proof of citizenship or legal residency, and contact information.
Once the application is completed, submit it to the Medicaid agency. You may be able to apply online, by mail, or in person.
After applying, follow up with the Medicaid agency to confirm they have received all necessary information and make an eligibility decision. You may also ask about the expected processing time.
In some cases, you may be asked to attend an interview with a Medicaid representative or eligibility specialist. This interview may be conducted in person or by phone. Be ready to answer questions about your child's special health care needs, the required care level, and your family's financial eligibility.
The Medicaid agency will review your Katie Beckett Program application and supporting medical condition documentation to determine eligibility. The processing time is different for each application, and it may take several weeks or even months to receive a decision.
If your application is denied, you can appeal the finding. The appeal process varies by state, so it is important to familiarize yourself with the specific procedures in your area.
The Katie Beckett Waiver has had a life-changing impact on many children with long-term disabilities and their family caregivers. By allowing children to receive the medical care they need at home, the waiver has helped to improve their quality of life and strengthen family bonds.
