Why Our Special Needs Child Has Secondary Medicaid

We’ve learned a lot about insurance over the last several years and I just thought I’d share a bit of that side of things. I had NO idea about most of this before Evie was born and I’m guessing that’s true for most the population. And I also know we’re generally hesitant to share this side of things, too. See, Evie has Medicaid as a secondary insurance and well, we don’t want people to think we’re just living off the state. But I didn’t realize how truly necessary Medicaid is to special needs families.

It is pretty much standard for kids with various disabilities to have secondary Medicaid, but every state is VERY different in how that’s done and who qualifies. In Iowa, Evie got a ‘free’ year of Medicaid because she was in the hospital longer than 30 days. When she was still in the NICU, the social worker suggested we start filling out the paperwork to get Evie onto a Waiver program. There are various Waivers available (and each state calls them some different including the Katie Beckett Waiver and here’s the neat backstory on that), but basically they ‘waive’ the income requirement by basing it on Evie’s income rather than our family’s. At first, we weren’t sure we really wanted to apply. I mean, we had good insurance, some money in the bank, a secure job. We should be able to handle this, right? Ha.

Maybe it was foolish, but I thought, “Well, our out of pocket maximum is X and we can come up with that money.” I just didn’t understand how insurance really works. I didn’t understand that that is only for covered services. I didn’t know that didn’t cover home care nursing. I just didn’t know. But we filled out the application anyway and had our free year while Evie was placed on the 10 month waiting list (I believe it’s significantly longer of a wait now) for the Ill and Handicapped Waiver. Those first 5ish months home, her secondary Medicaid picked up well over $10,000 of non-covered services and supplies. And that was BEFORE we started home care nursing.

NICU days

Our primary insurance REALLY is good in the grand scheme of things. It covers a HUGE majority of her costs, but we would have been nickle and dimed to death with copays and coinsurance and non-covered items without Medicaid. Each individual bill doesn’t look like so much, but they add up quickly. So just in the last few weeks, I got several insurance statements for various supplies and services. $112, $1.17, $40.49, $16.02, and 16 other smallish amounts for supplies, labs, scopes, consults, appointments and it totaled up to almost $650. That’s 2 weeks of insurance statements (I get maybe 3-4 each week) for various claims spanning a few months with no major surgeries, hospital stays, and maybe 2 appointments. That’s a slow few months for a kid like Evie. Medicaid picks those up and we can continue spending our money on those items that no insurance covers (like the ridiculously higher electric bill for all of Evie’s equipment. That stuff is NOT energy star rated. Or a reliable vehicle to get Evie to appointments) or the approval process would be so long that it harms Evie (her communication device and walker are just two examples of that). And we can also save our money for the day when (hopefully) Evie is declared ‘too healthy’ to receive any more assistance, but not quite healthy enough to just stop going to the doctor (because that day will never come. It just won’t). And again, private insurance does NOT cover home care nursing. Pretty much NO private insurance does. And when it does and when it’s tied to your employment, you can bet that families start worrying that the company will find a way to fire them just to cut back on that cost. But without home care nursing, families either have to put their child in a facility or give their child sub par care. Or run themselves into the ground until they can’t continue (that was how we decided to spend our first 5 months home with Evie because I didn’t want to admit I needed help).

I share this to explain how insurance all works when you have a child with disabilities, but also so you understand how important Medicaid is to special needs families. Our children aren’t on it because we didn’t have emergency funds or good insurance. They’re on it so their families don’t go bankrupt, so that we stay afloat financially and keep paying our taxes. So families don’t have to give up their children in order to get them the care they need. So children with disabilities can stay living at home instead of in hospitals or nursing homes. In the end, that helps SAVE the state money. There are fewer kids who are wards of the state and fewer families who go bankrupt and stop paying taxes and more kids who have better outcomes and can contribute to their communities in a variety of ways.

If we want to encourage families to keep children with disabilities (both before and after birth), we need to make sure that decision doesn’t financially destroy them. There’s no way to prepare for a medically fragile child. None. You can do everything right and it will simply not be enough. And you could put every spare dime toward medical costs and it won’t even put a dent in the piling debt. All to do the bare minimum of keeping your child alive.

We’re incredibly grateful for the help we’ve received from Evie’s secondary Medicaid. It’s allowed us to focus on Evie, to give her what she needs, to get her the best care available, and to give her and her sister (somewhat) normal childhoods. We’re still thrifty. We’re not ones who like spending money. But we’re glad that when we need to spend money to care for Evie, the money is there and not eaten up just trying to keep her alive.


34 thoughts on “Why Our Special Needs Child Has Secondary Medicaid

  1. I found your article exactly what I am going through. We live in Florida. It’s a total nightmare with secondary insurance. If we lose our social security we lose her Medicaid. No Medicaid means no medical daycare and no therapies bc our primary insurance will not cover it. If baby does not go to medical daycare then I can not work. Wish there is someone out there that can help us get through this. My baby has Down syndrome. We just need the secondary insurance. I have to work to help my husband pay bills.

    1. I am in Florida too and dealing with the SAME issues. My daughter has a virtual laundry list of issues and I am a single parent with two other children. If I loose her SSI I loose everything. Not just insurance, I mean my house, my job, everything.

  2. Sadly, wait until your child becomes an adult and you try to deal with housing, roommates, independent living vs group homes (think scene from One Flew Over the Cuckoo’s Nest), personal care assistance, or housing and caring for your now adult child for the rest of your life.

    1. that is why in Louisiana we are trying to build a village that will help with this. It will have housing and assistance to help families deal with all this and the child/adult will be able to live a somewhat independent life and mom and dad aren’t as stressed.

      1. Christy, Could you share information with me on what their doing in your state to help special needs children and families? We live in West Virginia.
        Thank you

  3. I read your story about insurance, and the ups and downs as far as havinsurance has been for you and how necessary it is to have Medicaid for a Special Needs Child. I am Legally Blind myself and you would be surprised how little assistance I have gotten to either get to work or live. Anyhow, I have cared for Special Needs Adults as my career for several years. Their condition was far worse than my own. They lived in a residential setting, and over the years, they have been moved to area’s of the state where money will cover them to even survive. Never ever feel that you are taking more than you should from anyone when it comes to your daughter. Research everything and don’t be afraid to ask any questions even if you’re asking more than once. You just want to be a good and fair mommie.

  4. I am sorry it is not standard. We have BEGGED for state aid for 10 years and have been repeatedly refused. But everyone thinks we get all this help and rarely come to our aid when we need it.

      1. First off I really appreciate this post. It brings a lot of light to this issue, and I plan to share it on my Facebook timeline. So brave.

        However, I do agree with the comment above that it’s not standard that pretty much every state has a waiver program. After 15 months of trying in Missouri we could not get our son with down syndrome and a tracheostomy on medicaid due to our income. They do have a waiver program but we would have only qualified through a special exception to the rules and we would have had to exaggerate his need. First our son was stuck in the PICU for months longer than he needed to be. Then my husband had to drop out of school and quit his job to take care of our son. We eventually moved to a better state. Three months after the move we are still waiting to get on medicaid, but I think we are pretty close. I know there are states out there that are worse than what we have experienced. I didn’t know Iowa was so good, we maybe could have just moved there, we were in Northern, MO. That’s the other really challenging thing, it is very difficult to understand what the requirements are for waivers in various states. Unless they have a TEFRA/Katie Beckett waiver, it’s very had to know if you’d be covered without talking to people who have been through it first hand with a similar diagnosis.

    1. I am in the same situation where I live. A single mother of three. My 14 year old has severe spastic quad cp. If it were not for the assistance of my now 81 year old mother I would not be able to work to support my other two children as we have been denied secondary Medicaid even after fighting for years. I have no in home nursing, respite, nothing.

  5. I love your article. Something I have always struggled with is the fact that we like to do extra things beyond our kids’ disabilities. I always feel a sense of guilt over the fact that we can “afford” to take a family vacation but still rely on our secondary Medicaid to cover expenses that insurance doesn’t cover.

  6. Thank you so much for sharing and clearing some misconceptions up about families with special needs children getting state funded insurance, I had a severely special needs child and at one point lost all insurance for him, he still received all the services, meds, equipment and treatment during that time but I ended up deep in debt to the tune of 3 million dollars, currently forced to file bankruptcy We got the issues fixed and my son got Medicaid even tho I myself worked and didn’t receive any other assistance people still looked down on me for having Medicaid for my terminal special needs child. So hats off to you for caring for your angel at home and educating people on the facts of insurance and the struggles of having special needs children.

  7. Here in Louisiana the waiver waiting list for us was ten years. Let that sink in. Early Steps provided some assistance until our special needs son was three, but between three and ten we spent way more on medical expenses than our home mortgage. We have no savings. The things I have come to understand . . . Thanks for your post.

  8. I too live in Louisiana but my daughter was disabled in her 20’s; by God’s grace I was able to add her back on to my health insurance coverage. We’ve also managed to get her approved for Social Security disability which was approved after 5 weeks. With Rachael, she is eligible for some Medicare coverage after she’s been officially disabled for 2 years. Thank you for bringing to light the difficulties we all encounter with ensuring our disabled children, regardless of age.

  9. If anyone lives in GA, I would appreciate your help. My daughter and son-in-law work all the time except when they have to take off work when their medically fragile son is sick – my grandson.
    I had hoped to complete all of the necessary paperwork but was told by the Social Security office that it must be a custodial parent that must go to their office so we are once again at a standstill. My grandson is getting no financial support but he’s had a heart transplant (lots of meds and illnesses), autism and a suspected genetic disorder. He needs so much therapy and my daughter’s family needs so much financial support. Any suggestions would be greatly appreciated. Thanks,
    A worried grandmother in Savannah, GA.

      1. Wow……to save my children from applying in person, I could do everything by phone. Unfortunately, I haven’t found that to be true in GA BUT. Social Security should be standard through the US so maybe I’ll try that approach. Thanks for the suggestion.

  10. Here is all I have to say about this issue: I’m happy to see my tax dollar support these beautiful children! I’d much rather see it spent on helping your children then supporting some able bodied free-loader who is just too lazy to get a job or who just came to America for a hand out! God bless all your beautiful babies!

  11. Interesting post and I completely relate. In our state Medicaid comes with SS so when the family is over income we loose it all. So stressful being right at the threshold.

  12. In Utah, apply for the Travis C Waiver for Technology Dependant Children. It covers children who have a vent, tracheotomy, cpap, bipap, or central line. I do not know how many children are on the waiting list, just that more spots were add in the past year. I think a new waiver was passed this year through the legislature to help children that are not as high tech as those previously mentioned.

  13. My daughter was on the waiver waiting list for 11 years. Before that, though, she had 18 surgeries, several wheelchairs, therapies, doctor visits, braces and medications. That is why, now that it has been 10 years since her last surgery and 6 years since she started Medicaid for the secondary insurance, we still have a second mortgage. Now we are looking at a $40,000 vehicle so that she can drive herself to community college (Voc Rehab won’t help until she is a senior in college). No amount of GoFundMe accounts are going to help us reach that goal while we are still in major debt.

  14. Exactly. When I look at my EOB’s for my son’s care or supplies, I’m grateful for our secondary Medicaid.
    Prayers and well-wishes to Evie, from one Trach mom to another! (Alsofrom Iowa)!

  15. Now…take this and multiply it times 3. This was our predicament for many, many years, until my twins entered kindergarten and I went to work for the state. All three were NICU graduated and had CP as a result, which qualified me for the position I took. Because I don’t our income was too high, the girls didn’t qualify for SSI. When I learned an p I the waivers, I immediately applied. It took over a year to get approval, so that we could have Medicaid as secondary insurance.

    I spent 10 years in the position, teaching other families how to apply.

  16. Thank you for putting your story out there! Our son is now 15 but born 17 ounces and has special needs and health issues. Hubby has a good job and good insurance but we’d be bankrupt without Medicaid! God Bless you sweet baby.

  17. Thank you for sharing. I have been telling our story for years and testifying to committees at our state capital, but their eyes just glaze over and they talk about “where will the money come from.” My son was not suppose to live past birth and was born with kidney failure (out of state, there are no doctors in our state who can care for him – as a child, there is now as an adult). We are in Montana. When he was born, we both worked, but I had to quit my job to care for him since he was in the hospital for almost 2 months after birth, then what employer wants someone who has to leave on a moments notice to take their child out of state for medical care? My husband’s income was low enough for our son to qualify for SSI so he got Medicaid, but that meant my husband had to stay working near minimum wage in a job he hated. We finally learned of the waiver and found someone who knew what we were talking about in the Medicaid office (we are in Montana and here it’s written for the elderly). They asked questions like “can he stop for himself, can he cook for himself.” He was 5 at the time and he also has autism. He was barely verbal! Finally he was approved and got services right away (now there is a wait of several years). Once he started dialysis he got Medicare in addition to private insurance and Medicaid. His dialysis (done at home every night) was $500 a day!!! He was also tube fed. He was able to keep the waiver until age 18 when he qualified for SSI based on his income. He is now on the waiting list for the developmental disability waiver (some services are only paid for by that waiver – he is developmentally disabled and now post transplant 20 years!! YAY). That waiting list is about 13 years long. All due to funding. Our son would not be alive today without Medicaid. Doctors wanted to give up on him when he was 3 weeks old. We moved him to a different state. If he had been in state care, he would have been left to die.

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