Welcome to Kids' Waivers!
Kids' Waivers is a compilation of information about Medicaid waivers, Katie Beckett or TEFRA programs, and other programs for children with disabilities or medical needs. This website is the product of years of ongoing research on these programs. To learn more about specific programs, you can compare states and obtain basic information using our sortable full list of programs. We also have more detailed pages for each state, which can be accessed by clickable map or text links. Please note that Kids' Waivers does not operate any of these waiver programs, and we cannot place your child in a program, verify your child's application, or verify any details about your child's current program. We can only point you toward the programs that are available in your state.
This website is an ever-changing project. We update all listings annually in the fall, but due to interim state changes and a lag in time before updates are available from the federal government, some information may be outdated. For example, the most currently available information for waiting lists is from 2021. The most recent update information can be found at the bottom of this page.
Note about Pandemic Appendix K amendments: during the pandemic, states were able to modify their waivers temporarily using what is called an Appendix K amendment. States also had the option to make other pandemic-related changes using 1135 waivers and other mechanisms. Because these changes are temporary, they have not been included in the information provided on each waiver. You may see what changes were made in your state by viewing the following information:
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About this Project
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, coordinated by Complex Child Magazine, is intended to simplify the process as much as possible. Our first goal was to create a full list of current Medicaid waivers and other programs for children with disabilities. We then created separate pages for each state that provide additional information and links for each program. 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.
What is a Waiver?
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 waiver is based on the child's income instead of the family's income.
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 his/her 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 the entire 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 most of them waive parent income. Click on the type below to find out more information.
The TEFRA or Katie Beckett option began in 1982 and is named after Katie Beckett, a little girl who used a ventilator and lived her first three years in the hospital. Despite having two working parents and insurance, her insurance would not cover the home nursing services she required to live at home, even though they were cheaper than hospital care. And if she left the hospital, she would no longer be eligible for Medicaid. Then-president Ronald Reagan granted an exception that allowed Katie to move home and still receive Medicaid coverage, including private duty nursing. This exception was codified in the Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982. It allows any state the option to extend Medicaid to a child with a significant disability.
All TEFRA programs have the same eligibility criteria. Children must have a disability under Social Service Administration rules that would require placement in a hospital, nursing facility, or intermediate care facility. Children are eligible from birth until age 18. In theory, the TEFRA option should be approved for children regardless of the type of disability, but historically it has been used primarily for children with physical disabilities, medical technology, or other complex medical needs.
The main advantage of the TEFRA option is that states who elect to offer this option must serve all eligible children who apply. There cannot be a waiting list. The TEFRA option is based only on the child's income and resources.
The primary disadvantage of the TEFRA option is that it just extends regular Medicaid state plan services to children. States cannot offer any additional services, such as respite or home/vehicle modifications. In addition, TEFRA/Katie Beckett programs are voluntary, meaning states can choose whether or not to offer them.
Most waivers currently in use are 1915(c) HCBS waivers. These are individual federal-state partnerships targeted to specific disability populations that provide both Medicaid coverage and additional services. All provide services beyond regular Medicaid to help people with disabilities live in the community. Since every program is different, it is difficult to generalize.
The typical populations targeted by 1915(c) waivers include the following: Aged, Physical Disabilities, Other (usually medical) Disabilities, Medically Fragile and/or Technology Dependent, Brain/Spinal Cord Injuries, HIV/AIDS, Autism, Developmental Disabilities, Intellectual Disabilities, and Serious Emotional Disturbance or Mental Illness. States often serve these populations in different ways. For example, a child with autism may be served by an autism waiver in one state, a developmental disabilities waiver in another, and an intellectual disabilities waiver in a third. Similarly, a child with cerebral palsy or epilepsy could be served by a physical disabilities waiver, a medically fragile waiver, or a developmental disabilities waiver.
Some of these waivers waive parental income when determining eligibility; others do not. Parental income may be waived in three typical ways: by using institutional deeming rules that typically only count the child's income; by using TEFRA rules for children up to age 19; or by creating a special designated population.
1915(c) waivers can have up to three levels of care: Hospital, Nursing Facility (NF), or Intermediate Care Facility (ICF). Typically, individuals can only receive the amount of services appropriate for their level of care. For example, a child on a ventilator or a child with severe mental illness would have to live in a hospital if he or she did not live at home, so these children are designated as requiring a hospital level of care. Children with physical disabilities typically receive a nursing facility level of care, while children with autism or developmental disabilities receive an intermediate care facility level of care. Typically, individuals cannot receive services that would cost more than their care would in the appropriate type of institution.
The main advantage of 1915(c) waivers is that they provide extra services to help people with disabilities live at home, such as respite, home or vehicle modifications, training, specialized medical equipment, personal support, and behavioral services.
The primary disadvantage of 1915(c) waivers is that they are not entitlements, which means they can have waiting lists. Many programs have waiting lists that are more than three years long before services are granted.
States have the option to create unique programs to meet the needs of people with disabilities, or replace their Medicaid program entirely, called 1115 demonstration waivers. In some states, people with disabilities are served through these programs instead of the more traditional types of waivers. Some of these programs are very small and work almost identically to a TEFRA or 1915(c) waiver (such as in Arkansas); others reform an entire state's Medicaid delivery system (such as in Arizona or New Jersey). Since each program is unique, it is difficult to generalize about them. This option is only used to provide home and community based services in a small number of states.
The main advantage of a well-designed 1115 waiver is that it can streamline the process of eligibility and services by combining programs together to serve multiple populations.
The primary disadvantage of an 1115 waiver is that it allows states to waive certain other Medicaid rules, meaning there are less protections for individuals in these programs. 1115 waivers may restrict services or eligibility.
Some states have created their own programs, typically to mimic the TEFRA option. Some of these programs expand eligibility further; others restrict it somewhat. Some provide full access to Medicaid, while others only provide certain services. This type of program is not used in most states, with Pennsylvania's PH-95 program the largest one, though several other states have TEFRA-like state-based program.
Some states use other waiver authorities to offer home and community based services through the regular state Medicaid plan for children already enrolled in Medicaid. These include the following:
- 1915(i): Allows for home and community based services of all kinds, including respite, home/vehicle modifications, and in-home supports, to anyone who qualifies and is already enrolled in Medicaid. While the state can restrict the program to individuals of certain ages or with particular diagnoses, there cannot be waiting lists. An example is the 1915(i) program in Idaho, which provides access to Medicaid for children through a Katie Beckett/TEFRA program and then offers them home and community based services through the state plan.
- 1915(j): Allows for those already enrolled in Medicaid to access personal care services that they self-direct. This authority also allows states to pay parents of minors for providing personal care services. An example is the IHSS program in California.
- 1915(k): Allows for states to provide personal assistance and other in-home support through the regular state plan for those already enrolled in Medicaid without waiting lists. Numerous states offer this option.
We are beginning the 2022 update. In addition to checking over and updating current information, we will attempt to add more information about paid caregiving as we obtain it. This is a great time to send us information and corrections about changes in your state. We expect the update to be completed around 1/1/2023.