An Ordinary Mom's Musings

My son uses Medicaid.

There. I said it.

As a sometimes Republican, there is a bit of shame attached to saying that. Frequently in this nation, we think only lazy losers use government programs like this. For the record, people who use Medicaid are not lazy losers.

There are a lot of conversations about insurance going on right now and I want to be part of the conversation.

I want people to know and understand why we use Medicaid. I want them to know what it does for us and many others, why it is important for our society to have a safety net for families. My hope is that by doing so, people can make… Click To Tweet

Hang on, this is going to be a long post…

You are a pregnant Mom, anxiously expecting the birth of your child. Maybe it’s your first. Maybe it’s your fifth. But something goes wrong with the delivery. Maybe it’s a birth defect. Maybe there were complications in the delivery. It doesn’t matter. All you know is that you now have a medically fragile or complex baby and you are on the hook for thousands of dollars. You may have really good jobs and insurance.

It doesn’t matter.

Prior to the Affordable Care Act, insurance companies had max yearly and lifetime amounts they would payout. Not only did you have to pay your copays and deductibles but everything over that yearly amount. And trust me, with a medically fragile child, you’ve reached that amount. Currently, there is a cap called the catastrophic max. Insurance companies must pay 100% after you have reached that cap amount for what you have paid is reached for the year. For us, it’s $10,000.

Do you have $10,000 lying around to pay at the drop of a hat? Some of my friends reach their max by the end of January every year, and since you have a medically fragile or complicated child, that is a reoccurring cost of $10,000 every year. We are just getting started.

This isn’t my family’s story. But it is the story of several of my friends.

Medicaid in this instance is issued retroactively at birth to help cover all those bills. We were in a sense lucky and didn’t have a major diagnosis (other than asthma) or major problems with his diagnosis’ until my son reached 5.

Now maybe you have a good job, that extra $10,000 a year means you have to tighten your belt a bit but it’s no big deal. Great!

Here’s the thing though. That $10,000?

It’s just the beginning.

Many families with medically complex children or significant special needs require that one parent is a stay at home parent. I know many parents that keep trying to make a two-parent household with both parents working work. It is hard. They often lose their jobs due to never being able to be at work.

There are doctor appointments, upon doctors’ appointments. Therapies multiple times a week, research for new treatments, home medical care, fighting with the insurance company, calls from the school because your medically compromised child is sick again. Or your behaviorally challenged child has just been expelled again due to their disability.

Speaking of school, don’t forget the hours of meeting with them. Fighting them to get the education your child deserves and is legally entitled to, but somehow the school authorities seem to have amnesia. It is a full-time job just handling the school!

 I take my hat off for any parent who is dealing with a special needs child and all it entails and still put in a 40 hour or more workweeks. Read more. . . Click To Tweet

I couldn’t do it.

This cuts into the earnings a family can bring in, thus adding to the financial burden and the stress a family goes through.

If that isn’t enough, there are all those things your child medically needs that insurance won’t pay for. Lots of medical equipment and therapies insurance companies often refuse to reimburse or pay for.

But it’s medically necessary you say.

It doesn’t matter.

In our case, our primary insurance limits physical therapy (PT), occupational therapy (OT), and speech therapy to a combined 50 visits a year. My son has done multiple visits a week for each therapy at various times over the last 5 years. If we only had our primary insurance, he would only get therapy a couple of months a year. Or we would have to choose just one therapy and do it once a week.

How do you choose between helping your child to speak and helping them learn how to walk or function in this world? That is a horrific choice for a parent to make. Medicaid picks up the cost of the extra visits making it possible for him to do all three therapies all year long.

Another thing our son has required that has made a HUGE difference in all of our lives is having a service dog. Almost no insurance companies in the U.S. will pay for a service dog. The cheapest dog well-trained dog from a respectable trainer is generally about $10,000 but I’ve seen them as high as $40,000. These dogs provide life-saving help as well as aiding the person to live a more independent life. Medicaid does not pay for service dogs either. I am bringing this up to illustrate other medical issues that come up.

Some people say, “Well, disabled people aren’t going to amount to much anyway so let’s just not get them therapy or the medical equipment they need. They are a drain on the economy.”

Here’s the thing, study after study has shown that in the long run, paying for the therapies when they are young actually cuts down on costs over the life of the person.

They are better able to care for themselves and therefore need less help. In some instances, they are able to overcome their disabilities and become a contributing member of society. Isn’t making them self-sufficient a better plan than making them more dependent?

Medicaid also provides through their waiver program opportunities for families to have another caretaker to come in and take over for a bit. It is physically, mentally and spiritually draining to be “on” all the time 24/7 for your child or otherwise disabled family member.

You love them dearly and fiercely, but love alone will not be enough to sustain you through what is often compared to battle.

We’re battling to keep them alive, battling keeping their behaviors in check so that they can remain at home rather than in an institution. With our kids, you can’t just call a babysitter down the street. We have to use trained professionals who don’t get paid nearly enough and are hard to find.

Respite care which Medicaid provides enables us to go to our own doctors' visits so we can take care of ourselves. It makes a date with our spouse possible so we can take care of our marriage, special time with siblings who often… Click To Tweet

Medicaid is not perfect. It is a federally sponsored state-run program. Each State’s benefits and management is a little bit different. All state’s Medicaid plans are approved by the Federal Government to ensure they cover the minimum benefits. The states are then subsidized for part of their cost at varying levels.

I spent quite a bit of time our last year living in Alaska, and even afterward identifying potential savings and ways to make Medicaid better for Alaskans as the state needed to cut money from the budget.

As consumers, we wanted smart cuts. We didn’t want across the board cuts. Or cuts to programs that people actually needed and were saving the state money. For those who are consumers of this and other government programs, I would invite you to become part of the solutions. Help states make the process better. Help them save smart.

Medicaid is not perfect. There probably are better solutions out there. But I haven’t heard of any that will provide the safety net families so desperately need so that they can care for their loved ones at home.