Navigating insurance/public aid

[kctwinmommy]

We just took the first step in getting our home health care set up. Of course, she just got the trach on Friday, then it was the weekend, so they don't have a lot of info yet. I did talk to the woman at DCSS today though, they're the group that handles these cases. So she's getting what she can started. But she did tell me that it can take quite some time to get it all approved and set up. She also said it will depend on what our insurance will cover first.

I just didn't quite understand that we need to apply for Public Aid. I guess this is just odd to me. I mean, am I applying for it on behalf of my child? Since DH works full-time, makes decent money, I know we'd never qualify for any assistance programs normally. But I'm assuming that this is a different type of aid.

I just have this feeling that it's going to get overwhelming with all this. Trying to set it all up, finding what we want, filing out forms, and then of course, having nurses in my home.

Any advice or tips on the best way to go through all of this? We're in IL, Chicago area, in case it makes a difference. TIA!

[kadiera]

Usually there are medical waivers or other special programs for kids with medical issues.

DH and I are both employed, making considerable money, and Alexander still qualifies to have medicaid as a secondary insurance, along with other benefits.

It took us 5 weeks to get everything set up to go home, but that included a ventilator, which I'm sure complicated matters.

[Garrett]

My husband and I both work too -- our private insurance is good, but Garrett quickly reached the lifetime maximum on the policy. We made sure everything was in order with medical assistance long before the private insurance ran out -- in the meantime, it picked up all our co-pays for appointments and prescriptions, which add up pretty quickly! As we got closer and closer to reaching the lifetime maximum, I didn't feel so stressed because I knew that everything was in order for his medical coverage the best it could be.

[KJKK8437]

I didn't get it either, at first, because DH and I were both working, and we made a nice living together.

But, many of our kiddos on this Board are entitled to Medicaid on a waiver program that is designed to help families of medically complex children get the services they need. For example, in an ideal world, the docs would like trach children to have nursing care in the home. Most insurances do not pay for any where near the amount of nursing care that the docs would want, if they pay for anything, so there are waiver programs that will help you get these services from the state. If you qualify, you will be receiving the full benefits of Medicaid as a secondary insurance for your little one, too. So ... the card would take care of co-pays, deductibles, and whatever your negotiated share of medical expenses is under your insurance plan.

Every state is different on what programs are available, and how easy or hard it is to get into them, so your case manager or social worker will need to help you apply. I think it is safe to say that what you are looking at are special waiver applications on behalf of your child, which would look only to your child's income and their unique medical needs for qualification. This may be on the same form as a standard medicaid application, or it may not.

I also know that in some cases you have to apply using a social security designation of "disability", but I never understood that process, I never got it right, and I never got the right answers from our local office. But, we ended up getting straight on through a waiver program, so I never figured it out.

One of the things I had to tell myself when I was in your shoes is this: Yes, DH and I were making a good living, but the cost of your co-pays and your 10% (or whatever your share is) will be a LOT of money. There are monthly supplies, nursing (if you can get it), medicines, and in the case of lots of these kids, very expensive enteral feeding formulas. Heck, even pediasure isn't cheap. We needed the help to get Alex the care he needed, and we weren't going to be able to get the services we needed without Medicaid.

Now, at the end of the trip, I'm grateful we had the card for as long as we did. I didn't feel good about applying for it or accepting it when it came in, but it helped more than I ever imagined it could. When my doctor said my son needed some medications that the insurance company wouldn't pay for, Medicaid did.

I wish someone had explained this all to me when we started out. I kept thinking I should be able to somehow do it on my own because I thought we could. I kept thinking that there were families that needed it more. While it is true that there are families on this Board who needed it more than we did, my not getting the card didn't help them, but getting the card got my kid the services he needed and the medicines he needed when the doctors said he needed them.

For us, it was a pride thing. I didn't want to admit that we had public assistance. I didn't think we needed it or deserved it. In fact, we did.

I hope this helped.

[kctwinmommy]

Wow! Thanks Karin!! And all of you! This really helps me understand it a little better. And yes, like you said Karin, even though I don't work anymore, and our insurance has covered lots of things up to now, I guess we WILL need more when she comes home.

The more I read, it sounds like K is different than a lot of kids on here. It makes me feel so bad. I mean, when she goes home, she'll still be ambulatory, she can talk and eat regularly once she gets the hang of that, she'll have a in-home teacher come once/day, and while it's still a big change, we're not anticipating a lot of the other things I see kids needing here. She's very close to being off the vent, feedings have gotten more into a routine, things are moving along.

But, I know we're going to need supplies, nursing care, and other things along the way. So I guess I need to suck it up and just take my share now. Hell, I know there are parents out there who really abuse the system, so I shouldn't feel bad. I'm not abusing it, I'm using what the state offers to care for my child.

Thanks again! It does put me at ease a little bit. And at least we're getting the paperwork rolling along as soon as we could!

[LKN]

Definitely let the social workers at the hospital help you apply for a medicaid waiver. Each state is different. Our state was awful, and though we were placed on the waiver list, our son was so high up on the list that he never got a waiver. We had to pay out of pocket an extraordinary amount of money, and we have very good private insurance. It is quite a terrible burden if you aren't able to get medicaid, too.

[kctwinmommy]

Originally Posted by LKN

Definitely let the social workers at the hospital help you apply for a medicaid waiver. Each state is different. Our state was awful, and though we were placed on the waiver list, our son was so high up on the list that he never got a waiver. We had to pay out of pocket an extraordinary amount of money, and we have very good private insurance. It is quite a terrible burden if you aren't able to get medicaid, too.

OMG! I couldn't imagine that! Our insurance has been good on a lot of things, it's still an HMO, and it's still an insurance company. And while my DH supports us just fine, we're not talking into the 6 figures, so it's not that we're doing great, we just do good, keeping things moving.

It's nice to have other people to bounce all this off of too! Thanks so much!

[faywrayy]

Cindy, definitely apply for the waiver as everyone said. Our situation was extraordinary and we never applied for the waiver and ended up not needing it -- BUT we didn't realize all that at first. In retrospect, things could have goen very badly and we wouldn't have been able to provide even a tenth of what Kate needed on our own. Fortunately, my dh makes a decent living (I like how you phrased it, "not into the 6 figures, but enough to keep things moving" - that's us precisely!) but not nearly enough to accomodate for the hospitalizations, tests and meds she needed. His insurance was exceptional. kate was hospitalized numerous times, several surgeries, lots of tests and meds and the standard trach equipment, plus nursing and the only thing we EVER paid for were co pays. In the big picture, the $1200 or so we shelled a year for co pays (and meds -- again excellent plan) was nothing compared to what it could have been and that would have been devastating to our family of 6.

Get the waiver!!

[Ainsley's Mom]

....And often the insurance runs out for the nursing and that is the most expensive cost and could quickly ruin a families' finances. If it turns out you don't think she needs much nursing down the road (at her age she might not) then you just don't use it. But it's nice to have the waiver in place as back up in case you run into difficulty with insurance paying.

I was told that a child with a trach getting onto the waiver does not mean another child will not get on the waiver. It really doesn't work that way. And if you have private insurance as primary it is really going to cost Medicaid very little. Your insurance will be paying the bulk of the costs.

[kctwinmommy]

Originally Posted by Ainsley's Mom

....And often the insurance runs out for the nursing and that is the most expensive cost and could quickly ruin a families' finances. If it turns out you don't think she needs much nursing down the road (at her age she might not) then you just don't use it. But it's nice to have the waiver in place as back up in case you run into difficulty with insurance paying.

I was told that a child with a trach getting onto the waiver does not mean another child will not get on the waiver. It really doesn't work that way. And if you have private insurance as primary it is really going to cost Medicaid very little. Your insurance will be paying the bulk of the costs.

Thanks! I'm starting to see that! And you're right, having something as a backup is a great thing. I mean, I know some people hate an HMO, but we've really been lucky. I haven't had to fight them for really anything. And we've had such minimal co-pays. But it could be needed at one point!