The first time someone told me about the Katie Beckett Medicaid Deeming Waiver, I was very confused. It's a mouthful of a title that doesn't lend itself at all to understanding what it's all about. If you're trying to decode what in the world this 'Katie Beckett' thing is, or if you're just curious what your special needs friend keeps talking about, read on for an overview of some helpful basics about the program, its history, and how it can be helpful.
A Brief History
The United States has a government-funded healthcare program called Medicaid. Generally, you have to have income under a certain limit in order to qualify. Prior to 1982, the only way parents were able to waive the income requirement was if their child was hospitalized for thirty days or more. Parents with children with a high level of care would hospitalize their children, even if they could be cared for at home less expensively, in order to trigger the thirty-day requirement and allow their children to qualify for Medicaid.
In 1982, the Reagan Administration caught wind of this pattern and decided to change the options so that children could be cared for at home. They passed an act (TEFRA) that included a provision allowing parents to apply for a waiver for children with a high level of care so that the child could be on Medicaid. The provision was named after the banner child for this legislation, Katie Beckett. You'll hear folks refer to all of this by different names like Katie Beckett, TEFRA, or Deeming Waiver, but they're talking about the same thing.
What That Means for You
If you have a child that has special needs or is medically fragile, the Katie Beckett Medicaid program could be very helpful to you. Private insurance covers many services, of course, but there are always limits, especially for things like physical, occupational, and speech therapy. In addition, your private insurance may have a high deductible or a low maximum annual benefit. Medicaid provides a secondary insurance coverage to help you where your private insurance hits its limit.
If you qualify for Medicaid based on your income, go that route; it is much easier.* For many folks, including me, our income puts us out of range for Medicaid approval, so we had to seek approval based on our level of care need alone, which is exactly what the Katie Beckett program was designed to do.
It's a Huge Undertaking
As a fair warning, the application process for Medicaid under the Katie Beckett program is very time-consuming and difficult. I would estimate my husband and I spent a combined 40 hours on our application over about two months. The application documents themselves are confusing, to be sure, but there are only a few pages of those. By far the largest time drain is proving you have a legitimate need for the level of care you're seeking. Our application was 280 pages total, and 95% of that was documentation of our daughter's disorder diagnosis, evaluations, doctor visits, medical history, and doctor recommendations. Gathering all of those items takes time. Each provider's office has a different procedure for obtaining the records, and some involve waiting multiple weeks for processing or picking up copies in person.
If it's such a huge undertaking to apply, why bother? If you are approved, the financial support of being able to fund the medical and/or therapeutic care for your child is an enormous relief. When we were approved, I can tell you my husband and I both felt hope for the first time that we might financially survive our daughter's diagnosis. In addition to Medicaid itself, if you are approved, you can apply for additional resources in Georgia like HIPP, which helps you pay your monthly insurance premiums. If you are denied Medicaid, there are also options through private programs designed to help families with needs that are not approved.
Would I Qualify?
If you're considering taking on this application for Medicaid through the Katie Beckett program, it's helpful to know if you have a shot at qualifying. Remember that the basic idea of this program is that children with a high level of care need will have the support to be cared for at home instead of in an institutional setting. If your child has a good long-term prognosis but currently requires daily medical care for issues with feeding, breathing, intestinal function, etc., they are a good candidate for this program. If your child has a diagnosis of a disorder and they meet the requirements of test scores on a psychological assessment, they are a good candidate for this program. Note that an autism diagnosis alone may not be enough to gain approval, and applicants with life-threatening illnesses are not likely to be approved.
*Update: At the time of writing this post originally, a child could qualify for Katie Beckett if they had a prescription of care for 5 or more therapies per week. That is no longer the case. The updated requirements for the Katie Beckett waiver have changed to focus on test scores. To read more about the scores required on testing to qualify for Katie Beckett, read the details on this page: How to Qualify.*
How I Decided to Apply
When I first learned about the basics of the Katie Beckett program, I wasn't sure if we would qualify. Our daughter's diagnosis requires a high frequency of therapy, but that's the main medical expense at this time. Our speech therapist, occcupational therapist, and neurologist all encouraged me to apply. There was one specialist who discouraged me from applying, which made the decision more difficult for me. I certainly didn't want to go through all of that effort if there wasn't a chance we would be approved. Remember, though, that it's not just the most severe cases that are approved; the case workers seem to weigh how rare a diagnosis is, if the long-term prognosis is good, and if the treatments are effective. And if you are denied, you can apply for other programs designed for those who didn't qualify.
You'll Need Help
This process will take a lot of time, energy, and patience. I leaned heavily on friends and family members to help. My husband worked with me on the application, and grandparents stayed with kids while I made runs to provider offices to pick up documents. I had a thousand questions that I needed help answering, and the social worker at our neurologist's office was a great resource. Sheila Carter of Cam and Madi's Promise was invaluable. The Parent 2 Parent archived webinar on Katie Beckett applications was a godsend.* Find a social worker or advocate in your state to help you find answers to the questions that will certainly come. Take time to explain to key support people in your life that you will need their help in order to complete this application.
This process is not for the faint of heart. It's government money being handed out, so of course they have a lot of filters for who is approved to receive it. If you feel confident you have a shot at being approved, it's worth it to apply. Read more about first steps in my post about getting started. And check out my full, step-by-step application guide here.
Above all, gather your courage, embrace the learning curve, and dive in.
*Please note that Medicaid benefits and processes vary by state. I live in Georgia, so the links I include may be specific to my state. Please find requirements for your state by searching online.*