What is TEFRA? And How Can it Help My Family?

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When my son was diagnosed with autism at age three, I remember hearing about services available.

I heard about Medicaid. I heard about Social Security.

I remember inquiring and realizing that we over the income limit. Which at the time was fine because I never believed we would actually need services. Or help.

Both my husband and I worked. We had good health insurance through my husband’s employer, Wells Fargo Bank.

We assumed that everything would be covered. We assumed wrong.

Good health insurance often only covers a small portion of what a child needs. And I will go on the record saying that autism and its treatments are still not fully recognized by most health insurance companies. The state is still expected to pay.

This puts working families into a terrible predicament. Families can’t quit their jobs to get help. And they can’t help their kids without jobs.

I remember arguing with a woman on the phone who said Cooper qualified for 20 minutes of speech a week. He was completely nonverbal.

She told me…’well, he doesn’t talk. So what’s the point.’ That was just the start of the uphill battle.

Autism is expensive. Speech, Occupational, Physical, Feeding and ABA Therapy to name just a few of the expenses.

Our family did what many families do…we put the medical debt on a credit card. Before we knew it we were swamped.

As a child gets older, some of the burden goes on the school. Except, school therapist are busy. They seems hundreds of kids.

Most children in school that need OT and Speech receive 15-30 minutes a week. That’s not enough.

In 4K and Kindergarten, Cooper still wasn’t getting the services he needed. And at the time, like most parents, I felt a sense of urgency.

My son needed more. But I also didn’t want to file bankruptcy to pay for it. It’s a tough decision to be in as a parent.

So, I started doing some research. I spoke with other parents who had done this before me.

I learned about Medical Assistance-TEFRA. With this service, parents can pay an out-of-pocket premium for Medicaid coverage. This coverage would cover most, if not all of the services my health insurance would not pay for.

When I started inquiring more I heard a lot of negative things. I heard we would never qualify. I heard the waiting list was years longs. I also heard that the monthly premium was astronomical.

I want you to know that in our case, most of these things were untrue. I firmly believe families are scared away from inquiring about TEFRA.

We were approved for TEFRA when Cooper turned four. We pay monthly for private health insurance and for TEFRA. It’s worth every penny. Because of TEFRA he can attend full-time ABA therapy and receive speech and OT.

Please look into it. Raising a child with autism is very, very expensive. And to make it even more challenging, many of the good autism services are not covered by health insurance.

Want to find out what your state offers? Visit http://www.kidswaivers.org/#states to find out.

Medicaid Waiver

If your child with special needs 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. Medicaid waivers “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 traditional Medicaid rules only pay for the care of people in institutions and not at home.

TEFRA

In order to overcome this institutional bias, two types of Medicaid programs began in about 1982. These included a provision of the TEFRA Act of 1982, often called a 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.

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 allowed any state 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 they have 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, they are voluntary, meaning states can choose whether or not to offer them.

Want to find out what your state offers? Visit http://www.kidswaivers.org/#states to find out.

(Information for this post came from the website Kids’ Waivers.)

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

 

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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1 Comment

  1. Ana Armenta on November 8, 2018 at 3:11 pm

    How long did it take to receive tefra after filling out the application?