Knoxville families share how Katie Beckett Program would help relieve financial stress from medical expenses

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KNOXVILLE, Tenn. (WATE) — Families of children in Tennessee with disabilities or complex medical needs are now close to getting access to a brand new healthcare program. It’s called ‘the Katie Beckett program. It just received federal approval earlier this month.

The program will provide services or financial help for children who don’t qualify for Medicaid due to their parent or guardians’ income. Tennessee was the last state in the country to approve this program, and families who could qualify say it’s long overdue.

Laura Hoffer and Marcel Brouwers’ 7-year-old son lives with several illnesses that he’ll have the rest of his life due to premature birth. Since he was born he has had to have constant visits to doctors, specialists, and therapists; some of them in different states. Getting him the proper treatment and medications would be nearly impossible if not for insurance or some other kind of financial assistance.

“I did total up recently what would we owe each year if we had no insurance if we just had to pay everything out of pocket, I looked at the billing on everything and it was $243,000,” Hoffer said.

The couple’s Tenncare insurance has been uncertain lately. The past few years have been a back and forth of them being covered then kicked off unexpectedly. They say have had to get their son re-diagnosed to prove that he still needed coverage.

“It’s an existential stressor that the shoe might drop at any moment. And we’re fortunate that we’re employed but there are thousands of families around the state who are in less fortunate situations who are probably under the same kind of stress,” Brouwers said.

Kimberly Peterson also knows and understands this stress as well. Her daughter, Tilly, was born with a rare genetic disorder called Joubert Syndrome. It impacts her physically and intellectually. Tilly is unable to walk or stand and requires 24-hour care.

“She’s in diapers. She’s 12 years old. Regular diapers from Target aren’t going to make it. We have to have medical grade diapers. Those are an exclusion in any insurance policy so out of pocket we pay over $200 a month to provide diapers for her,” Peterson said.

For both families, qualifying for the Katie Beckett Program would help to relieve some of the financial stress caused by medical expenses or travel. It would also help to offset costs that insurance doesn’t cover.

“It’s just a very exciting time to think about how the things she so desperately needs will be provided but also how our lives as caregivers will be better equipped to take care of our children that need us so desperately,” Peterson said.

The Tennessee Disability Coalition responded to the approval of this program in a statement:

“As the very last state to implement a Katie Beckett waiver program, approval of the program by CMS in Washington could not have come soon enough. Since the law that allows states to create this type of program was signed by President Reagan in 1982 until approval by CMS on November 2; Tennessee families from Memphis to Mountain City have fought hard for a pathway to health care coverage –and existed in every other state in the Union– for children with complex medical needs, chronic illnesses, and disabilities. A program that wouldn’t force families to make impossible decisions like filing for bankruptcy, or divorce – just to get to get care for their child.

The Tennessee Disability Coalition celebrates this achievement that represents the joint efforts of families, disability organizations, the Tennessee General Assembly and state government. We look forward to the day we can celebrate an active, family-centered Katie Beckett program that makes a meaningful impact across our state.”

Tom Jedlowski, Tennessee Disability Coalition 

Families can apply for the program starting on November 23.

You can find the TennCare Connect site and instructions on how to create an account here:

Filling out the self-referral online is the fastest way to apply for the program.

But if you don’t have a computer, a DIDD case manager can help you complete the
self-referral. To get help, call the DIDD office in your region:

                West Tennessee Regional Office: (866) 372-5709
                Middle Tennessee Regional Office: (800) 654-4839
                East Tennessee Regional Office: (888) 531-9876


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