Many disabled children are raised in households where the income level prohibits the child from qualifying for SSI. Yet, the child still needs significantly more financial support to receive medical services than the family’s private insurance or resources can provide.

Each state administers their program a bit differently. In fact, in many states it is difficult to find out information on this program because it is called by so many different names. Sometimes called home-based waivers, they are generally administered through the same people who administer Medicaid in the state. Early intervention programs can usually provide information on how to access the right agencies in your state, but schools rarely are aware of these programs.

The general procedure to apply for these waivers is:

1. Apply for SSI and be denied. Ask them to send you a letter stating that you have been denied.
2. Ask for an application for a Katie Beckett Waiver by contacting your Social Service office, like your Department of Children’s and Family Services office or find the telephone number for your state’s Medicaid office, and ask them where to call about the Katie Beckett Waiver.
3. Complete the application. Typically, you should provide only information about your child and not about your financial status. Typically, your child’s physician will need to complete paperwork called the DMA-6 or some type of form that states your child’s disability.
4. If you are denied, ask for an appeal. Often they change their decision, and grant the waiver. And here’s the catch: Sometimes, they put your child on a waiting list and years later they are approved. This is because although the system for these waivers has been in place for sometime, each state funds Medicaid at different rates, and very often there are many more eligible recipients for Katie Becket waivers than there are children who actually receive them.

Who is Katie Beckett?

Katie was born in Iowa, and soon after her birth she contracted viral encephalitis and was in a coma. Although she awoke from the coma and eventually even began to breathe on her own again, the government’s rules about medical coverage prevented Katie’s parents from being able to bring her home and care for her there.

So, Katie’s Mama Bear took on the system and home-based or community-based waivers (often called Katie Beckett waivers) were born.

Katie is now a grown young woman with a college degree and is active in children’s health care advocacy projects around the country, like Kids as Self Advocates. Read this story by Katie on her life.

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Medical Home Initiatives by State