A New Wheelchair?

My resentment for Sadie's wheelchair has slowly been growing over the last few months.  It's now to the point that even the stupidest little things about it drive me crazy, like the noise it makes as we walk down the street, or it's color.  It's dumb, I know, but it's like a festering wound.

And while that has been happening, I've also been coveting some of my friends' wheelchairs that I've seen pictures of online.  They have pretty colors and the pommel between their child's legs and all sorts of cool stuff.  Cool stuff that wasn't even offered to us as an option.

So then my resentment has grown for the system.  Because wheelchairs that are Sadie's size cost anywhere between $2700-$3500, and when our private insurance will only pay 80%, we have to rely on our secondary insurance (which is the state provided insurance given because Sadie's disabled) to pick up that 20%.  And the only way they'll pick up that 20% is if we go through the wheelchair clinic...whose options are very limited I'm realizing.

Naturally, in these circumstances, I start wondering how we can get Sadie another wheelchair.  I want one that is more supportive, has the pommel, will tilt back if she needs to recline, has a separate base for use indoors, etc.  Will private insurance pay for another one?  Do we have to wait a certain amount of time since the last one we ordered?  (some insurances only let you order medical equipment once a year, or once every 3 years if it's big like a wheelchair)  Will we have to pay the 20%, and if so, how are we going to do that when we're saving up for a van right now?

Then I remembered how successful Sadie's ipad fundraiser was, and I got this grand idea to do another fundraiser for Sadie's wheelchair.  After talking to another mom this weekend, I got all worried that we'd have to pay full price for another wheelchair.  But I figured we could probably raise $3000 for Sadie's new wheelchair.  I told Brian about my grand idea and he wisely advised that I call insurance and see what our situation is before I start asking people for money.

This morning I called insurance, and you know what I found out?

1. We have unlimited benefits for ordered medical equipment.  I specifically asked, "so if we order a wheelchair and a walker in the same year, they'll both be covered?"  She said yes.

2. Sadie has met her deductible this year already, as well as her co-insurance payments (these are the co-payments and 20%s that we have to pay for stuff).

3. Her year goes until Sept 30, and any medical equipment we order before then will be covered 100%.  Again, I asked specifically, "so as long as we order a wheelchair before October 1, you'll pay for it 100%?!"  She said yes, as long as their in-network.  (For an out of newtwork provider, they will provide 40%)

4. The bad news is that we also have a family deductible, which also starts over October 1, and our baby is due October 11...which means we will get to pay all the deductibles/copays to the hospital when we have our birth!!  That's unfortunate timing.

So, I started shopping!!

Then I learned more.  I can't just order a wheelchair.  I learned this when I called my first company.  The guy was really patient with me.  He told me I basically have to go through a middle man.  I'm sure I sounded clueless, so he goes, "I'll just name some and you tell me if any of them ring a bell."  One that he mentioned was United Seating and Mobility (USM).  I told him that's who we went through for her other wheelchair through CRS so that's probably fine.  But when I hung up, I was probably more confused than when I started.

What is a girl to do for answers in this situation?  Who can she call to ask silly questions that she can trust not to make fun of her or get frustrated?  Tami.

I had to call Tami for something else anyway, so I was like, "since I have you on the phone..."  Tami told me to call a guy at USM and tell him which wheelchairs I wanted to see.  Then he'd call those companies and set up times for a rep to come out and bring the equipment and show us their stuff.  We don't go through the wheelchair clinic, we go strictly through USM, who then orders and bills etc.

And USM is an in-network provider.

I called and left the guy a message since he wasn't available.  I've picked out 4 chairs that I want to see. All of them recline.  All of them have a separate stroller base and inside/activity seat base.  All of them turn around in the stroller base so she can either face me or face out (which I think is awesome for those intense sensory experiences like Costco).  Hopefully this USM guy is able to reach these companies' reps and get us in to try this stuff out.

So stay tuned.  Hopefully we will have more wheelchair news soon...and hopefully it'll be good news.

Thanksgiving Day 9

When we were in the NICU with Sadie, even though we had bigger things to worry about, how much all this was going to cost was constantly in the backs of our minds. I hated the idea of getting this huge bill from the hospital, but we didn't even get to keep our child! That just didn't seem fair. We were amazed when we got the bill and it was $150!! Insurance paid just about everything (and then the hospital adjusted accordingly)!

The next couple of months were like a lesson in insurance 101. Really, they should have someone come explain to you how all this works when you're in the hospital with your child. I mean, they have the chaplain come, the social worker come, the lady from hospice come...why not an insurance counselor? Anyway, I had to learn really quickly what an EOB (explanation of benefits) and what they mean (nothing). But I think the hardest thing for me was figuring out who was Sadie's primary insurance and who was secondary...apparently since Brian's birthday comes first in the year (even though I was born before him), he's primary. So confusing. Luckily, my mom worked in insurance for a lot of years, so she was a good resource!

But I got a lot of it figured out. I've learned what questions to ask, what to argue about, and what to just not pay.

Now Sadie has something called Long Term Care. This is basically a branch of our state assisted insurance program that covers everything our private insurance doesn't because they recognize that Sadie's condition is long term and that $30 copays add up over time and that she's going to need extra equipment! The greatest thing about Long Term Care though is that I no longer have to worry. I never get a bill, and if I do, I know I just need to make a phone call and I won't have to pay for it. Long Term Care pays for Sadie's feeding materials (ie. formula, tubes, buttons, syringes, bags for the pump, thickener, etc) and they send someone to our house with a delivery each month!! They paid for our chillout chair. And they provide the respite care we get.

Finally, Sadie was enrolled in something called Child Rehab Services (CRS). I really don't understand CRS. On one hand it seems like a net to catch families who don't know how to navigate the system or properly care for their child. But on the other hand it seems like another branch of state provided insurance/services that Sadie gets for free. We visited the wheelchair clinic through CRS, and even though the wheelchair (which is around $3000) has to be submitted to our private insurance for approval (and even then they'll only pay 80% probably), they didn't wait to order it because no matter what our private insurance will or will not pay, CRS will cover the rest. We WILL get a wheelchair and we WILL get it for free. So nice.

So, today I am thankful for insurance and that we have such amazing benefits both privately and through the state. I don't know what we'd do without it... anything relating to special needs always costs 3 times more than it needs to!!

Now if we could only find a way to speed up the process!!

Chillout Chair Victory!!

When Sadie was really little, we learned that the only way to calm her was to provide some serious vestibular input, she needed to MOVE! The bouncy chair worked perfectly for this, and we were not afraid to use it all day and take it with us everywhere we went. But then it broke. So, we replaced it. Then that one broke...and so did the next 3 after that. We finally decided that Sadie was too heavy for the bouncy chair, and we sadly had to give it up. That was a scary time for us, we didn't know how else to calm her down. We could bounce her on the yoga ball, but that was a lot of work, and you couldn't do much else while you were bouncing. We were afraid we were in for a lot of screaming, until one day Sadie and I went to PT and there was a chillout chair. It looked comfortable, and I'm always looking for something to sit Sadie in that will fully support her, so we tried it out. Then we learned that it rocks. A couple of weeks later we were bringing it home to try it out for a few weeks until we could get our own. (the one we have is like the picture, except instead of wheels, the bottom is rounded so you can rock rock rock) The problem was that they cost close to $1000. Welcome to the world of Special Needs, where everything cost so darn much because they know that insurance will pay for it!

The problem is that it takes a long time to go through the process of insurance approving it, ordering it, shipping it, etc. So, sometime in the middle of April we started that process. First, our Occupational Therapist had to write a letter to Dr. Wendy explaining why Sadie needed this chair and how she would benefit from it. Then Dr. Wendy had to write a prescription for this chair. Finally, it is submitted to our private insurance as well as Sadie state health plan for long term care. And somewhere in there, a company called Preferred Home Care got involved. They are like a broker between us and the insurance company. The insurance company won't deal with us directly, so they go through Preferred, who then takes care of the ordering and delivering of whatever item it is we're getting. Once all that was taken care of and we properly crossed our t's and dotted our i's, then we waited.

And waited.

And waited some more.

Finally we got a letter stating that the insurance company believed it to be in Sadie's best interest to take an extra two weeks to see if they couldn't find a cheaper alternative that would still meet Sadie's needs. In the letter there was a fax number where we could send additional information pertaining to the case. I was a little upset. I felt like if I could just bring them to my house for an hour, or send a video, they'd understand and be rushing to sign the approval...but that's not the way it works.

Instead, I typed up a letter clearly giving my reasons why Sadie needs this specific chair and no other one will work (we looked already for an alternative that we could purchase and not have to deal with the insurance company!). Then I sent a copy of that letter to Dr. Wendy and Jessice, the OT, and asked them to craft something similar to also send to the insurance company. I also called Jason at Preferred Home Care and explained to him the situation and he called the insurance company to explain further why this chair was required. He encouraged me to build a strong case, one they can't ignore, so I did.

And it worked, because I got the call last Friday from Jason telling me the Chillout Chair had been approved!!

One more victory for Sadie.