Getting Medical Assistance (Medicaid) for your Disabled Child


The number one question I receive as an Autism mom is what benefits do I get for my son and how did I obtain them. Cooper receives Medical Assistance through the state. This is also known as Medicaid. I will gladly tell you what I know about the program. He also receives a few other services but I will save those for a different post.

First, you need to find out what your state offers for benefits. Please understand that every state is different.

Here is the link to the Federal Medical Assistance (Medicaid) Benefits Guide: Look at your state specifically to see income requirements. For the sake of this post I will tell you what Minnesota offers.

The High Cost of Having a Child with a Disability

My son is covered under private health insurance through my employer and has secondary Medical Assistance. We did this because Cooper’s medical care totaled well over $200,000 last year. Medical Assistance pays for the things that my private health insurance does not. Medical Assistance also pays 100% of Cooper’s co-pays and deductibles. Fun fact: We reach the family max of pocket deductible for our health insurance by January 3rd. Cooper’s services are that expensive.

Remember, not all Autism therapies are covered under typical health insurance. They can limit the amount of Speech Therapy and Occupational Therapy your child receives. My kid is completely nonverbal and I believe my health insurance covered one session a week. Ridiculous.

Also, private health insurance typically does not cover diapers, necessary over-the-counter prescriptions, many therapies, transportation, strollers, etc. Medical Assistance DOES cover these things. (Here is a full list of services covered by Medical Assistance.) Medical Assistance picks up when your private health insurance ends. We would have to file for bankruptcy if it wasn’t for Medical Assistance. That is a fact. It is a necessity for Cooper’s care.

Also, I have been researching and fighting for services for Cooper for three long years. The first question I am always asked when trying to obtain a new benefit or service is….Is the child on Medical Assistance or Medical Assistance-TEFRA? That seems to be the tell all indicator if you will qualify for any service or benefit.

Medical Assistance and Minnesota

People who live in Minnesota may qualify for Medical Assistance. You must meet program rules including income limits. How much income you can have and qualify for coverage depends on:

  • Your household size,
  • Age,
  • Pregnancy or disability status, and
  • The health care program you qualify for

Autism is a qualifying disability. So, the next step is to look at the income guidelines. I am a single mom. I am not rich. I have two kids. I have a completely normal, average paying job and my family is still WELL over the income guidelines.  Which is ridiculous but that’s the law. Don’t be scared when you look at the income requirements. There are other options if you can’t qualify for straight Medical Assistance.

In order to qualify, you must have an annual household income (before taxes) that is below the following amounts:

Household Size* Maximum Income Level (Per Year)
1 $15,800
2 $21,307
3 $26,813
4 $32,319
5 $37,825
6 $43,331
7 $48,851
8 $54,384

Over the Income Guidelines?

Don’t freak out. Because so many families are over the income guidelines but still cannot afford the high price of having a child with a disability the federal government created TEFRA. It is short for the Tax Equity and Fiscal Responsibility Act.

The TEFRA option allows Medical Assistance (MA) eligibility for children with disabilities whose parents have too much income to qualify for MA or other Minnesota Health Care Programs or who qualify but the cost would be too high.

The goal of Medical Assistance-TEFRA is to keep children in the home as long as possible. The government recognizes that many kids with disabilities need nursing care. They need 24 hour assistance. They need medical supplies. They have behaviors that parents can’t handle. With TEFRA, a family can hire care to come into the home to help with all of this. AND, it is typically cheaper than putting a child into a medical facility.

  • To qualify, a child must meet all of the following:

    • Live with at least one parent
    • Be under age 19
    • Be certified disabled by the Social Security Administration (SSA) or the State Medical Review Team (SMRT)
    • Need a certain level of care to stay at home that is similar to the level of care provided in a hospital, nursing home or intermediate care facility for people with developmental disabilities (SMRT makes the level-of-care determination)
    • Have home care costs that are less than the cost for care in a medical facility

What Does TEFRA Cost?

To access TEFRA parents may have to pay a parental fee. The amount of the fee is based on the parents’ income. You can estimate your parental fee online or using this paper worksheet (PDF). The exact amount is calculated based on your income and other information you provide.

Children do not have copays.

Because of the high costs of having a child with a disability many families choose the paid TEFRA option. It may cost $500 a month but it is well worth it if you are paying $5,000 a month in care.

I hope this post helps you on your journey to get financial assistance for your disabled child. Remember, knowing is half the battle. I wouldn’t have known about Medical Assistnce if Cooper’s Outpatient Autism program didn’t require it for attendance. And even then I had to camp out at the Benefits Office to get help. I want to go on the record saying I am thankful for every bit of help we get for our son. But….it has been a nightmare. We’ve had to fight for ever benefit tooth and nail. None of it has been easy. I wish you luck friends. Don’t give up. Help is out there.


That Time I Camped Out at the Benefit’s Office

There have been so many times on my Autism Parent journey that I’ve been forced to act crazy. I have reached more dead ends with insurance companies, county and state benefits and Medical Assistance than I can count. This can make a parent feel helpless and desperate. I just want to help my kid. It’s that simple. And I feel like I have be erratic at times to get anyone to just listen and help me. So here is one of my favorite stories that happened out of desperation and actually worked! Enjoy. Happy Saint Patrick’s Day! #autism #specialneedsparent

Posted by Finding Cooper’s Voice on Friday, March 17, 2017

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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. Adri on April 20, 2017 at 10:19 am

    Thank you for sharing your journey! As parents of a child with a disability we must be resourceful AND fearless advocates for our little ones

  2. Maggie on July 2, 2017 at 4:46 pm

    Thank you so much for explaining this!! I was having a difficult time finding info about secondary Medicaid and its requirements. I didn’t even know it was a possibility until some of my friends with children sharing the same dx as my son mentioned having it for their child.

    My son has HLHS, which Social Security considers a disability, but we don’t qualify due to income, and kids with HLHS vary widely in their level of disability. Based on what you’ve said, we couldn’t qualify for secondary Medicaid at this time, but there was a year he was in the hospital for more than 30 days at a stretch and I wish we had known about it at that time…but this was 9 yrs ago and maybe the rules were different then!

  3. lahny on July 25, 2017 at 8:23 am

    Hi Kate,
    I remember in one of your candid videos you mentioned that Medicaid/TEFRA helped pay for safety improvement in your home. (recessed lighting, front yard fencing) Can you help in providing any details or process you went through in getting this approval?

    Thank you-
    Autism Mom of Rylan

  4. Tim Yaotome on March 19, 2019 at 7:41 pm

    I felt surprised when you shared how you spent $200,000 last year in order to medicate your son for his autism. In my opinion, parents who about to apply for private medical benefits should hire a lawyer to examine each contract first. That way, they can be ensured that they are making most of the money they got from Social Security and other institutions.