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

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.