Without a Crystal Ball

Our Journey through Chronic Illness & Autism

I could have been sleeping, but I was not asleep. Instead I was tossing and turning thinking about what the GOP lead Congress and Senators what to do to Health Care in the United States. All I have heard in the past few months is how dismantling the Affordable Care Act would help millions of people. There have been many proposals about how the system will work, but none of it seems to be in favor of people with disabilities. There has been speculation about dismantling Medicaid, and there have been rumors that the amount of federal funding to states for waivers and grants would be slashed. I can’t figure out why the GOP lead Congress and Senate is hell bent on driving the vulnerable and financially weak in to further despair and poverty.

As a mother of a child who is disabled, I am terrified about what is to come for healthcare, medicaid, and services for the vulnerable. Children and adults with disabilities rely on government funded programs to survive. It isn’t because they are leaches on society, but it is because most of them cannot work due to serious health conditions or physical disabilities that prohibit them. These are people that would love to contribute to society but cannot because their bodies or minds won’t allow it. The unemployment rate for people with disabilities is twice that of the national average. In 2015, according to this survey, only 17.5% of people with disabilities were employed. When I think of my son’s future, I see an 82.5% chance that he will never have a job. These statistics are what keep me up at night in fear. If he will be unable to work, he will need some form of assistance to have access to health care and to live. When he is an adult, what happens to him if there is no Medicaid?

My family currently benefits from the Medicaid program. My husband has a full time job at a large organization. I left my job a year ago to take care of our son. My son has a number of serious health issues, and he sees more than a dozen doctors. My husband’s employer offers wonderful insurance, and we have been lucky that they have approved many of my son’s claims. However, they do not cover all of his needs. We needed to find supplemental insurance to cover what they denied each year. When my son was two years old, he was approved for a program through the state of Minnesota for supplemental medicaid. Our family pays a monthly fee to the state for the insurance, and the medicaid will cover what his private insurance denies. Presently we rely on his Medicaid to cover his formula for his G-tube, his habilitative therapy, and much of the medical equipment he needs to improve his quality of life. If we did not have Medicaid, we would be paying 100% of the cost for whatever is denied by our private insurance.  This would amount to thousands of dollars every single month, and we would be bankrupt.

Medicaid is a life saver for our family because we know that every month our son will be fed, he will be able to go to therapy, and he will have access to his state waiver. Waivers are an additional benefit of Medicaid that many families across the country access to care for their loved ones. My son’s waiver enables me to be paid to be his Personal Care Assistant, but not all states offer this option. His needs far exceed what a typical child would need. Either I have to work and pay for a private PCA or nurse, or the waiver allows me to be paid to care for him. This has been a life saver for our family. I was able to quit my corporate position, and I was able to earn a small income to stay home with him. Please know that the amount of these waivers is no where near a corporate level job, but it does provide enough relief to our family so he can be cared for, get to his appointments, and have his life organized. As he gets older, his waiver will help pay for lifts for our stairs, wheel chairs, and modifications to our home to make it more accessible.

While we have access to these benefits now, I worry about the proposed changes the GOP want to make to Medicaid. I worry about what will happen to my son when he is an adult, and what type of programs he will have access to. If employers won’t hire him, someone needs to step in to help him. My husband and I can certainly provide him a place to live, but once he reaches 26, we can longer pay for his insurance. He will need his own insurance. The only option he has as a person with a disability is government funded insurance. My son would die without the medications he gets each month. His medications cost thousands of dollars out of pocket, and if he is unemployed, he will never be able to afford them.

Medicaid isn’t a program that people use to “suck off the system”. Medicaid is a lifeline for the most vulnerable to have access to health care and services. I lose sleep at night wondering how legislatures in Washington can be so naive to how expensive it is to care for a child or adult with a disability. I think about how disability and disease is the one thing that NO ONE is immune to, and any person at any time can become permanently disabled. If we dismantle Medicaid, what kind of message are we sending to families and people with disabilities? Are we telling them that they no longer matter? Are we telling them that they will have to go in to poverty and bankrupt? Are we telling them they no longer deserve medication and to live? Furthermore, what happens to all the people that become disabled in the future? Who is going to care for these people? Who is going to pay for their insurance? Or is the greed of a few billionaires in Washington more important than the health and well being of millions? Will we become like other countries around the world where the disabled become disposable, homeless and die from lack of services?

I ask all of you reading this to forward this blog, spread it wide, contact your senators and congressmen and women and tell them you are not in favor of any cuts to medicaid. Let them know that greed should not trump human decency. Remind these men and women that no one is immune to disease or disability. Tell them that as a nation we are responsible to help others that cannot help themselves. We cannot fail people with disabilities and their families. We cannot allow greed to destroy the lives of millions. We must stand together and demand better for all families.




11 thoughts on “The Real Fear of Losing Medicaid – One Mother’s Perspective

  1. Susan Goodman says:


    Please send me your e-mail address


  2. Jo Ann Kazor says:

    Adults with a disability can stay on their parents past age 26, depending on the plan. Until that parent retires and goes on Medicare. Of course, that may be gone under the GOP, too. I am the parent of an adult with a disability.


    1. Thank you for sharing that information! I’m really worried about lifetime caps and that they made add them back. We’d be at a max already


  3. Pat Evans says:

    I am a parent of a son wth disabilities! We live in Texas and the horrible gov we have just cancelled phy. therapy for young children. Our son is an adult and goes to a day program that gets Medicaid funding. I am expecting that they will close down!!! Our doctors will not abandon him because I ask about that and thank God we live here! Our son cannot speak due to a dr who botched the delivery. He does take several meds but we might be able to afford the meds. I also get 1600 a month to care for him but that too could be cut! Personally I would like to move to another country. We live in Texas so Mexico is close by! They have health care for all and there are many beautiful cities that are safe. There is also Canada but living in all that cold is not that wonderful!


  4. Nancy LeBlanc says:

    In Louisiana, you or anyone in the house cannot be paid to be the person’s aide. I can be my friend’s son’s aide and she can be my daughter’s aide, but not our own. My adult son who lives in our house cannot be his sister’s aide unless he moves out.


    1. Angel says:

      Wow, I live in Louisiana and was wondering why friends in other states could get paid to care for their child, but my friend was caring for a 25 year old daughter and her father in law and could not get help for either.
      Louisiana was always hurt under the law.

      My dr said that when it went into effect, 40,000 prople were eligible for Medicaid (due to health, income, or other reason).
      On that day, over 20,000 doctors decided to stop taking the plan.

      I was finally ably to get a family member in the plan after fighting for years. Only to find out that she could not get a doctor. No longer taking patients. So she is still going to charity.


  5. Hi Katie,
    A few of us at MomsRising saw your post and thought it’d be great to be in touch with you. Could you shoot me an email if you’d like to be in touch?
    Thanks so much!


  6. I am glad I saw this article so that I can share this Mother’s story. I was in and out of hospital with brittle diabetes since 3 years old and my Mom never left my side. We were fortunate that my Mom had a good paying job with “cadillac” health insurance. I want every child to have all of the support that I did. It was a rude awakening when I aged out of my Mom’s health insurance. I live with stress every day about how I’m going to make ends meet. Kids pick up on things. When the family is struggling, they take things on emotionally that we might not even realize. Thanks for sharing this. Keep up the good work.


    1. I am so sorry you live with that fear! Just know there are many of us fighting for you every day!


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