Medicaid waivers and Katie Beckett programs for children are unfortunately quite confusing. Not only that, but it is impossible to find information about them. This project is intended to simplify the process as much as possible. We hope to provide a comprehensive resource of all Medicaid waivers and programs for children, including 1915(c) HCBS waivers, 1115 demonstration waivers, TEFRA/Katie Beckett programs, and state-based programs.
We are depending on YOU to help provide us with information about these programs. While the website has been created using governmental websites, particularly medicaid.gov, we depend on inside information from families and professionals in each state for the inside scoop about each program. Please let us know if you see any incorrect information, if you can complete any incomplete sections, or if you have any more details to add.
Katie Beckett leaving the hospital for the first time in her life
If your child with a disability is uninsured, needs additional services, or needs wrap-around Medicaid coverage to help with finances and uncovered services, your child probably needs a Medicaid waiver or program. These programs waive one or more Medicaid rules in order to extend eligibility and/or services to children. For children, the most common rule to be waived is the way income is calculated, meaning the program is based on the child’s income instead of the family’s income. Since most children don’t have any income, these programs allow the vast majority of children to qualify, regardless of how much money their parents make.
Medicaid began as a program for low income families. Over time, Medicaid transitioned to serving primarily children, the elderly, and people with disabilities. Before the 1980s, most children with disabilities were institutionalized, because most families and communities did not have the resources to keep these children in their homes. Ironically, it costs more to keep people in institutions than at home, but traditionally Medicaid only paid for the care of people in institutions.
In order to overcome this institutional bias, two types of Medicaid programs began in the early 1980s. These included a provision of the TEFRA Act of 1982, often called the Katie Beckett or TEFRA option, which gives states the option to extend Medicaid to children with severe disabilities by only counting the income of the child with a disability, and not the income of their parents.
Around the same time, 1915(c) Home and Community Based Services (HCBS) waivers began for people with intellectual and other disabilities. These waivers allowed states to waive three possible Medicaid rules to provide better services for people with disabilities. First, all 1915(c) waivers waive comparability, which means states can offer people with disabilities extra benefits that other Medicaid recipients do not receive. Some waivers also allow states to use institutional deeming rules, meaning they only count the income of the individual with a disability instead of parent or family income. This type of waiver typically allows children who are not low income to access Medicaid. In rare cases, states may also waive geographic requirements, meaning that they only serve people in certain counties or areas.
These programs are important for children because Medicaid typically counts the entire family’s income when determining eligibility until a child turns 18. Because private insurance does not cover many services children with disabilities require, or children with disabilities cannot get insurance, Medicaid waivers and programs allow another pathway to access Medicaid services, including private duty nursing, specialized therapies, and so forth. They may also offer additional services, such as respite, home/vehicle modifications, or training programs.
There are four basic types of Medicaid waivers and programs: TEFRA/Katie Beckett programs, 1915(c) HCBS waivers, 1115 demonstration waivers, and state-based programs. Please note that while not all of these programs are technically government “waivers,” they are commonly called waivers since they waive rules such as counting parent income. Click on the type below to find out more information.