Tuesday, December 22, 2009

What Is It That I Am Supposed To Do Anyway?

I have five, yes really five insurance issues that are working there way through the system for three of our four kids with special needs. These things just make me more nuts every day. At this point there is a communication device that is not going to get paid for (we are on appeal #3), this after thousands of $$$ have already been spent figuring out what is needed. To many days to count were spent figuring things out and an endless stream of paperwork has been filed. The lack of this device is very limiting in what options will be available for Lauren as an adult. When people do not understand her she gets very frustrated, which I do not blame her for doing, but this frustration leads to behavior issues.

Lauren has two wheelchairs which insurance paid for, which are both needed. Her manual chair helps her to work on her upper body strength but she is only able to propel this chair on level surfaces. Using this chair helps with her scoliosis and we have worked for years and years and spent thousands of $$$ in therapy, at school, and at home to get her strength built up. The power chair gives her more over all independence but when she is using it all of the time she loses her strength, what was gained in months of therapy is lost in a matter of two or three weeks. The problem here is that insurance now will only service one chair. We have decided that they will service the power chair so now she is losing all that we have worked so hard to gain. In the end this is going to cost big time in future medical bills.

I also have the eye glasses revolving door going with Paul. If they would just buy the right glasses in the first place it would save them lots and lots of money. Insurance will not pay for the flexible frames so now he is breaking his glasses on a regular basis, lets just say far to many times to keep track of. Needless to say when they are broken and we are waiting for parts to repair them they are not on his face where they need to be. It is kind of funny because now at the glasses place they are saving all of the spare parts and keep them in his file so when they bring the file out pieces are clinking and clattering as they fall all over the floor.

There are two more issues that are just as crazy but I think this is a pretty good description of what I get to deal with every single day.

When I asked a social worker what to do about the concerns for Lauren she simply told me that we were doing a super job with her and there is nothing they will help with even though she qualifies for waiver services. Well its great that we are parenting well but if these kids can not go out into the world and live there own lives eventually then it is all for nothing.

A public heath nurse told me today that we certainly do need the equipment but it is not going to happen until it is to late. Now what the heck does that really mean?

I don`t know any more what it is that they want me to do? Do they want these kids to be productive members of society as there dad and I want for them or do they want them to remain in some sort of state of limbo for the rest of there lives? That certainly seems to be a sad state of affairs as far as I see it. Do they want us to work with the kids to help them gain whatever it is they are able to, if so then they need to help us provide for their needs. I have no interest in spending my time on therapy,or dealing with kids who are not finding therapy very much fun if what they have gained is not going to be used.

One worker told me that we could afford to just handle these medical bills ourselves. Are you kidding me, we have to put food on the table, clothes on their backs, and pay for educating eight kids here. This family has sacrificed a great deal to have these four adopted kids. These kids are unendurable and there needs are so great that even wealthy folks would find these bills to much to handle.

Pretty soon something has to give or this mom is going to go totally bananas here.


  1. I'm sorry to hear all of troubles you're having with insurance. It just isn't right. We fight and fight for what right for our kids. It's not like you are asking for a trip to Florida or something! Life is hard enough without this on top of it. Your kids are lucky to have such a good advocate. And mom too!

  2. I think the insurance companies are just dragging their feet, hoping you'll give up (3 appeals? what's wrong with this scenario?) and either look for the money elsewhere (grants, fundraising, living on mac 'n cheese) or accept the fact your child will never have what they need. This is not right. We have gone into serious debt (credit cards) to cover costs our insurance company deemed inappropriate or negligible. We had to just say, "no more" to many things other people take for granted. We dropped our primary insurance and are relying solely on medicaid in our state while we try to play catch up with the credit cards (I doubt they'll be paid off before the kids turn 18). As far as them being productive members of society - only YOU want that, nobody else really cares. You'll continue to care for them until their 30's and 40's right? That's what they're counting on - it costs them nothing even if it's costing you everything. Do I sound a little cynical? I guess I am just tired of the same ol' hassle - I hate insurance companies.