Who is Katie Beckett?

Katie Beckett gave her name and a “face” to the Medicaid waiver program that has allowed thousands of children like her to move out of hospitals and into their communities. Since Katie Beckett became the recipient of the waiver that bears her name, more than half a million children have been able to leave the hospital and receive treatment at home.

When Katie came down with encephalitis, she became eligible for Medicaid benefits. However, Medicaid would only pay for the expensive treatment if she stayed in the hospital. As Medicaid guidelines stood in the early 1980s and prior, if Katie lived at home, she would lose her Medicaid eligibility. Her parents’ income and assets would be counted against her. In order for Katie to receive the care she needed in order to live, she had to remain in the hospital, where she would retain her eligibility for Medicaid.

Katie lived in the hospital for three and a half years, all the while her mom lobbied senators, congressmen, and President Reagan, to change the Medicaid regulations to allow patients like Katie to live at home and keep their Medicaid benefits.

In 1981, President Ronald Reagan heard about her situation and changed the rule so she could go home. As Reagan noted, it cost significantly less — about one-sixth as much Katie to receive the care at home, instead of in a hospital. The Katie Beckett Program became and from then on, as long as a child with special needs who requires a medically equipped facility (hospital, clinic, institution) level of care, can receive that care at home.

A child is otherwise eligible for Medicaid, they can qualify for coverage based only on their own income and assets. The child’s parents’ income will not disqualify the child. However, the cost of the Medicaid beneficiary’s home care cannot exceed the cost of the care if in a medically equipped facility level of care setting.

Katie Beckett wasn’t supposed to live past the age of 10.

Katie lived, graduated from college and lived independently in Cedar Rapids, Iowa, until she stopped breathing on May 18, 2012, at the age of 34.

Read more about when Katie Beckett finally gets to go home from this article from People.com.

Who Katie Beckett is to Us?

Katie Beckett is one of our heroes.

Because of her, Kyson is able to receive services and the care that he needs. You see, prior to his ASD diagnosis, I had no clue that the Katie Beckett Program actually existed. During the second time of Kyson getting his assessment, I had asked the doctor what all these services were going to cost and his reply,

“Don’t worry because Medicaid will cover our service.”

I was confused, we didn’t have Medicaid! Why would the doctor assume we did, didn’t he check the charts on our insurance before meeting us? Even our care provider never mentioned “Katie Beckett” nor did the doctor who gave Kyson his first diagnosis mentioned the program or name.

I’m reluctant to say this out loud, but honestly, if it wasn’t for the Katie Beckett Program, I don’t think I would have ever been able or would have wanted to start therapy for Kyson. What terrified me, the Speech Pathologist asking that Kyson visit him once every week for a 15-minute session. Like anyone would,

“How much would this cost?”

“Give and take if your insurance covers a portion, you’re looking at $150.00 per session.”

I nodded, smiled politely and that ended the appointment. I went home and looked up ways to help him get services if it was even possible to get assistance. With my husband and myself working full-time, I knew our household income was way over the limit to qualify for Medicaid and my final thought was. The Federal poverty level for a household of 4 was $25,750.  You can find the 2019 Federal poverty level here.

The Process

A friend told me that I should be able to get him qualified for Katie Beckett. Again, no straight answer of what that actually meant I researched and quickly found the information I needed. Finding the information was easy, it was all the stuff in between that took a whole lot of patience.

I don’t know if every state, the set up is the same but in mine, there are Katie Beckett Program consultants in each county. You contact the consultant and they go over with you how the program works. After the conversation, they mail you an application. Fill the application out, send it back in and wait for a phone call to set up a meeting for an assessment/consult.  The consultant will visit you in your home with your child and go over 100 different forms (exaggeration on the 100, but it felt like forever). After the visit, you wait.

Two weeks after we received a letter stating the application was received and being reviewed. We didn’t hear anything after that until 4 months later. Kyson was eligible!

Conclusion

It’s completely embarrassing for me to admit that even after starting the application for the Katie Beckett Program, it didn’t take me until a year later to find out who “Katie Beckett” was.

Parents, there’s no such thing as a dumb question so please ask, ask, ask until you get your answers. Yes, the power of the internet makes everyone turn to Google, but for resources that you could really benefit from, the best thing to do is pick up the phone. It’s always better to speak to an actual person then trying to discover things through websites. One year ago, there wasn’t even an application to apply online and now that I just checked, there is!

Thank you, Katie Beckett, for giving a parent like me a chance to provide and give my son his chance to thrive. This is my personal “Thank you!” and if Kyson could, he would say it too, for your bravery. From the both of us, socially awkward mom and son team, we have been able to blog this journey of our Unusual Path.

-Anna MV