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Part of the Series Financial Planning for Families with DisabilitiesSupplemental Security Income
Special Needs Trust
Other Sources of Income
Healthcare and Long Term Care
The Katie Beckett Waiver, sometimes also called the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), is a type of Medicaid Waiver. It provides people under the age of 19 with serious conditions with institutional-level care at home.
The Katie Beckett Waiver is a Medicaid waiver for children under the age of 19 who have complex medical needs or long-term disabilities. According to the team at the ABLE National Resource Center, "It enables children to receive care in a home setting rather than in an institution.”
The Katie Beckett Waiver—available in 24 states—is valuable for families affected by disability for a number of reasons. One is that financial eligibility for the waiver is assessed only against the child’s income and assets, not their parents’. Unlike Home and Community-Based Services (HCBS) waiver programs, states cannot limit the number of “Katie Beckett” participants, so there are no waiting lists.
The Katie Beckett Waiver has been in place since the 1980s and since then it has helped more than half a million children. However, this waiver is granted on a state-by-state basis, so differences in availability, eligibility guidelines, and services can be confusing. In this guide, we’ll define the Katie Beckett Waiver, and explain how to apply for it. However, families may still find it helpful to consult a special needs attorney in order to evaluate their options.
Mary Katherine Beckett was born in 1978 in Cedar Rapids, Iowa. She spent some time in the hospital during her earliest years. Then, in 1981, doctors agreed that she could be cared for at home. The problem was that Medicaid would only pay for institutional care. Not only did Katie and her family feel that caring for her at home would be better for her, but the institutional care cost almost six times as much as supportive home care.
The situation was clearly far from ideal and Katie’s mother managed to convince President Ronald Reagan of this. In 1982, Congress passed the Katie Beckett Waiver, permitting states to provide Medicaid funds for the home-based care of children and young adults with severe disabilities, based on their income alone.
Since then, the Katie Beckett Waiver has been enacted in some form in 24 states. This waiver allows many people under the age of 19 who have serious conditions related to their disabilities to stay at home, rather than be placed in an institutional setting.
There are many advantages to home care. Most importantly, it can keep families intact, enabling a child with special needs to live alongside loved ones who are usually far more attuned to their individual needs than institutional caregivers can be. Therapists and other professionals who serve them often develop close, long-lasting relationships with the entire family, contributing to a tight circle of support.
The Katie Beckett program is for children under age 19 who have disabilities or complex medical needs. It enables children to receive care in a home setting rather than an institution.
The Katie Beckett program is for children (those under age 19) who have disabilities or complex medical needs. It’s especially valuable for children who are not eligible for Medicaid because of their parents’ income or assets, because eligibility for the waiver only takes into account the income and assets of the child. This program helps pay for pediatric home care nursing that private insurance does not cover.
Here are the general eligibility requirements for the Katie Beckett Waiver. A person must:
Currently, the Katie Beckett Waiver is active in some form in 24 states. However, since the waiver is run by states, eligibility and application processes will vary depending on where you live. You can go to Kids Waivers and search for your state, to see if your state has this waiver.
If your state has a Katie Beckett Waiver, you’ll need to speak with a Katie Beckett social worker to discuss what types of care and services are available and if you qualify for them. Your social worker can also walk you through the application process. Typically, an eligibility decision is made within 90 days.
Even if your state doesn’t offer the Katie Beckett Waiver, it is likely it may have another Medicaid-funded program that can help provide needed services in the home.
If your child qualifies for the Katie Beckett program, they are eligible for a full range of services covered by Medicaid. You can start using these services right away—there is no waiting period.
Here are some examples of the types of care this waiver will cover:
Coverage varies a little by state, as does the definition of “institutional-level” care, so check your state’s program for more specific information.
Sometimes, yes. Get in touch with your state’s Social Service office, Department of Family and Children Services, or Department of Developmental Disabilities to find out if this is the case in your state.
It doesn’t matter for your eligibility for the Katie Beckett Waiver. Your private insurance provider will get your bills first and Medicaid will pick up the costs your insurance won’t cover. Medicaid can pay for deductibles, co-pays, additional therapy visits, and even non-covered services like diapers, personal care, and transportation to doctor visits.
Around age 18, it’s recommended that families apply for Supplemental Security Income (SSI). If approved, your child will receive a small cash benefit as well as full Medicaid benefits.
The Katie Beckett Waiver is a Medicaid waiver that can pay for at-home care for children who would otherwise need to be placed in an institution. Katie Beckett waivers are administered by states, so you should check with your home state if this waiver applies to you. Even if your state doesn’t offer the Katie Beckett Waiver, it may have another Medicaid-funded program that can help provide needed services in the home.