Just need to vent to a group that might understand...

Do you parents out there ever get tired of having to be proactive with every aspect of this injury? It's coordinating care, research, working with the school, dealing with billing/insurance issues and the constant care or watchful eye for the injured on.

I'm fine with most of this, but dealing with the billing and insurance just put me over the top today. I can't get over the ridiculous amount that we have been billed for some of the services we received and the inconsistency for how things were billed. It's been challenging try to find the right person the the right department that can answer my questions and get issues resolved. Everyone seems to want to pass you off to someone else. Why does this have to be so complicated?

nancy,

I feel your pain. Here in Idaho, the medical establishment refuses to give out valid information. Try to get a price before a procedure or therapy. They don't know their own prices. They send the coded statement to an outside agency for pricing and billing.

One thing I have found, if I research the CPT codes, you can find out what the procedure is specifically. The itemized description is not always understandable. Then, I research the fee structure for that code. There are tables with Medicaid, MediCare, Work Comp, and other rates. From this you can get information to work with the billing agency.

There is a multiplier from the base rate for different geographical areas. You will need to look up your area. Multiply the base rate by this number to get the rate for your area. Some areas are lower than the base rate. Some others, like metropolitan California, are 20% higher.

Major health plans negotiate discounts of up to 40%, mostly 20-30% off the full rate.

Here are some good links:

https://catalog.ama-assn.org/Catalog/cpt/cpt_search.jsp
http://www.asksam.com/ebooks/cpt/
http://www.cms.hhs.gov/PFSLookup/

There are others if you google "ctp codes" and "medicare reimbursement"

As you struggle with this for your loved one, remember that there are many living on the street because they have not had someone to help them in this area. They end up losing their housing, cars, jobs, everything.

I have given up on keeping a good credit rating because I refuse to pay the gouging over-charges. i.e. Doctor charged $2260. medicare reimburses $1330. Blue Cross reimburses $1600. My out of state health plan paid $1880. The doctor has taken me to collection for the $380 balance.

Said he cannot discount his fees to me because he does not have a contract to discount to my out of state health plan. Said his blue Cross contract states that he can only discount to health plans that have a valid contract.

So, you are in good company.

I think I can say, You have all of our sympathies.

I hear you. I'm looking at these bills wondering how anyone without insurance or resources would be able to pay them. I don't want to get into a political debate over health care or insurance companies but the system is needs an overhaul. The rates in our state for private insurance increase on average 20-25% each year and have been for years. It's nuts.

As a Canadian, I can't speak to the complexity of health insurance in the States. However, even here in the land of socialized medicine, we are being driven into ruin trying to cover all the "uninsured services." As brain injury isn't a priority, there are lots of those.

I wonder if the Brain Injury Association of America (BIAA)www.biausa.org might have any useful tips. If not, they are still a wonderful source for other information and support.

Speaking of support, the BIAA has support groups all over the States. There are support groups for patients and caregivers. Reading your posts, I think you really deserve some support in your efforts. You're doing a tough job and it's important not to forget to take care of yourself.

On that score, I wanted to thank you for being there for your daughter. I know it's not easy. We TBI patients are difficult. We can be perpetually ill, short tempered and, frankly, quite different from the person you knew and loved before. As you said, we often lack volition, leaving our caregivers to always be the proactive one who has to lead the charge.

It's frightening being a TBI victim. As Mark said, often unable to support ourselves, ours is a precarious existence. You should pat yourself on the back because most people won't/can't do what you're doing. In the case of my brain injury, over 80% of marriages end in divorce.

You're special.

Cheers

It is easy to get overwhelmed with the "what-ifs" and the communication struggles with doctors, billings, school, etc. It's a whole boat load of new responsibilities you didn't ask for. Then there is the guilt of "what if I told her not to do that" "what if she would have been five minutes earlier in her schedule that day" whatever. And let's face it...you sometimes have a stranger living in the place of your daughter. It's weird and scary and it feels shameful for some reason I can't understand.

It's like supporting a warrior in battle. I envision myself handling the logistics while my daughter does the fighting. Mom's always say things like, "I bet you wish it was you hurting instead of her." Well...no, I don't. Maybe that sounds selfish. I can't even begin to imagine how scary and overwhelming this is to her. I would rather be on the outside, greasing the wheels for her recovery. There is no end to what a mother will do for her child, but in the case of PCS we are fairly limited and that limitation is the biggest frustration of all. Time is the great healer and I can't change time. If the neuro said, "Listen, build a bonfire, do a naked dance and chant in the middle of the street and she will be healed" I would do so gladly. I would be the best bonfire building, naked street chanter anyone ever saw.

When I get overwhelemed I try to think of all the other people out there supporting their little warriors through various battles and I know I'm in good company. Hang in there momma!

Everything you said rings true and I'd be right there in the street with you!

PClearner and nancy

Your both so right, its so hard to be the mom trying to do everything
to help the kids be back to normal. I can totally relate. But in a whole
different way. My son is 18 and he has epilepsy, its a lot like pcs and
its a life sentence too. And in his case its taken many things away.

As far as we can tell at this time he will never drive, he lost reading ability
and now reads at close to a 2nd grade level. He is very bright, and nows
what all he has lost. He wants to be normal, not to feel lost all the time,
not to have the memory losses he has.

He knows that he will need to live in a group home one day probably. And
that he will have to accept lots of differences. But its going to be okay,
because he is going to do whatever he has to do.

He is a very good young man, and he has learned to adapt to the changes he is having to make. Just the way your daughters are having to do.

My older two son's have watched him grow up, and now exactly what he has missed out on. My middle son, took a chance driving even though he knew
he was blacking out in his car. Just because he was afraid to tell me.
He knew it would mean no driving till we got it under control.

Bills are a pain, and in the case of pcs, its me that has been dealing with these bills. But its so hard to know when they are the wrong amounts sometimes. I just have to make sure I stay on top of things.

Donna