Hi, Sally. We have Medical Assistance for Nicole. When Francine posted about the assistance in PA, I checked into it too. It is different here, as is every state I imagine, but it is quite possible that there's some type of assisance that you too might be able to get for Michael. Basically, it is Medicaid, but with an income waiver. That means we get all the benefits of Medicaid, but don't have the same income criteria. The only financial criteria is that Nicole has less than $1,000 in assets (no problem!). We did have to include our financial info. on the lengthy application, but there is a waiver that disregards it in the qualification process. I'm really not sure how they determined eligibility specifically. I didn't even know who to call about it. Thankfully, when I asked Nicole's Early Intervention PT / Svc Coordinator about it, she was able to act as a liasion for us. She got me the application and then submitted it after I completed it. The organization that it falls under here is the DMR (Dept. of Mental Retardation). However, the child doesn't not have to be MR to take advantage ot it. We've had it for about 9 months now and it has saved us so much money already. Basically, it has covered the therapy co-pays for Nicole and co-pays for in-state dr. visits. I believe that any benefits paid are limited to drs / therapists, etc. within the state as well as those that accept Medicaid. We also use it as a secondary insurance for prescription co-pays for Nicole (not a big deal though since she's only needed meds post-op pretty much, but every little bit helps). I believe that our coverage will also pay for 100% of therapy visits when the insurance benefits are exhausted, but we haven't gotten to that point yet b/c last year we were able to get our insurance co. to approve extended therapy visits and we have a different insur. co this year so we haven't hit our max. visits yet.
I don't know if the medical assistance that might be available in your state will cover out of state surgery and the application might take a while to get processed. I would still look into it though b/c regardless of what they approve for surgery, it will still help you -- esp. with all the post-op therapy that Michael will need. BTW, our coverage was approved for one year, so I will soon findout what renewing entails. I don't see why she wouldn't be approved this year too. Also, I've been told that this assistance only covers children until they're around 5+ y.o. and at that point we will have to try other alternatives.
As far as getting the surgery covered by your insurance, regardless of Medical Assistance, I would also very actively pursue this. Talk to George at TCH and see what he says and if he's ever dealt with your insurance co. before. Also, call your insurance co. and request to get in touch with a case manager so that you can establish a relationship with one individual there (who will also be more knowledgeable and qualified than a rep. who you'd first speak to when you call there). Compile lots of info. on the Mod Quad and the benefits of the surgery. If TCH is out of network, then the insurance co. might want you to at least seek an opinion from an in-network dr. If they require that, then you will NEED to go and at least let the dr. examine Michael and give an opinion. Try to findout how the dr. feels about TCH and see if you think the dr. might be able to give you a referral there. Being that you live in MD, they might want you to go to Johns Hopkins. I know that there's a dr. there with BP experience (Dr. Belzberg?). I don't know how much BP experience he has and esp. with the Mod Quad type procedure in particular though. I think it's always good to get at least 2 opinions so you might want to go ahead and schedule to see him anyway.
If you findout that you're going to have to go to an appeal process with your insurance co. then it might not happen before you go. That leaves you in a difficult situation b/c if you go ahead with the surgery before getting approval, then they might never pay for it b/c you did it w/o approval. However, if timing isn't too critical and you can postpone surgery if necessary in order to hopefully get it covered, that's something to think about too. Only you all can make that decision if you're willing to take that financial risk. We postponed surgery and eventually got it approved, but had we gone I'm quite sure it wouldn't have been covered. This was primary surgery and I still (and always) will feel badly about it and wonder how much of an impact those 7 weeks had on Nicole's recovery. At the same time, I don't work and we would've had to sell our house to pay for the surgery and knowing that there would likely be future surgeries (and there have been -- 3 to be exact), we didn't think that was wise. It took a lot of tears and prayers to come up with a decision.
I will leave you with a couple more tips. Contact your state dept. of insurance if you think you're going to have problems in dealing with your insurance co. I never got timely calls back from ours, but maybe you'll do better. Also, contact your state attny general's office and ask to speak with the individual / area that handles insurance problems. Our asst attny gen'l was VERY helpful to us and was EXTREMELY instrumental in helping us to get the surgery approved finally -- after a hearing. I got advice from a friend 2 days prior to our hearing and while the asst A.G. couldn't make the hearing on such short notice, he participated via teleconference; plus in the meantime, he'd contacted the in-network dr. and the insur. co. Sometimes I think the insur. co's are more cooperative just by knowing that the A.G.'s office is involved. Health insurance co's haven't gotten a lot of good press these past few years.
Well, sorry this is so long. I hope some of this info. helps. Feel free to email me if you'd like. It's good that you're doing this now and not waiting until the last minute. Try not to get too stressed and have confidence that it'll likely workout well one way or another. Take care. Keep us updated please.
-Tina (
rosesmom315@juno.com) :0)