Tuesday, February 3, 2009

Family sells everything they own: the costs of having a special-needs child

Interesting comments on yesterday's post. I realized, after reading what Torina wrote, that I neglected to talk about good changes I've experienced since having Max. That could be a whole other post, but let me just say that my level of patience has reached a new stratosphere, I have learned to appreciate little achievements in life rather than looking toward the big ones, and I have developed a deep appreciation of simple joys, like the grin on Max's face when he clomps around the house in his red Lightening McQueen boots.

So, I haven't been able to stop thinking about the Georgia family in the clip above since I read about them on Terri's Special Children Blog. The Peters have one child with autism and another who has Still's Disease. They are auctioning off everything they own on ebay to raise money to help their kids.

My heart hurt for them.

Brittiny Peters gets teary-eyed at the end but all in all, they seem amazingly clear-minded, even calm, about what they're doing.

Can you even imagine?

There have been times, mainly when Max was young, when Dave and I had to pay for a lot of his therapies and our bank accounts dipped low. We did some things with Max, like hyperbaric oxygen treatment and craniosacral therapy, that our insurance company wouldn't pay for but we said, screw it, we're trying it. Sometimes, they refused to pay us back even for standard occupational, physical or speech therapies. I've had to fight them a lot. Some battles I've won, some I've lost. We're doing OK. Back when Max was first born, my parents told us that if we ever needed financial help, they'd step in. We haven't had to ask, but it was comforting to know we had that cushion, just in case.

Some Mom bloggers welcome contributions. Melanie supplements the cost of ABR therapy for her son by making these adorable, hand-sewn crowns. I got ones for Max and Sabrina, and they are adorable. Photo coming soon!

How have you guys handled the financial needs of your kids? Does your insurance company reimburse for therapies? Any battle stories to share?


  1. We don't have much money, but the one thing I won't scrimp on is trying new things and keeping up with therapies that work -within our budget. My dad is paying for the horseriding that we do and we managed to get some funding for additional speech therapy. We're actually looking into starting some ABR too, but the cost might be the one thing that stops it. In the more immediate future, I am about to buy a pair of Piedro boots - they will probably cost $300 - for a PAIR OF SHOES. It's too much, but worth it if they help my little boy walk!

  2. Oh, here's a battle story for you! The insurance company refused to cover the cost of the MRI that diagnosed Daniel's stroke because they said it wasn't "medically necessary." Kind of odd that I had to have a script from the doctor to get it, isn't it? Fortunately, we got out of the over $6,000 bill by fighting tooth and nail.
    We also use the therasuit, or "suit therapy" with Daniel. It involves traveling to the clinic (we go to an amazing one in Houston) for three weeks while Daniel has intensive PT three hours per day, five days per week. We are so lucky that our insurance company covers 80% of the cost of therapy; the clinic we go to is the only one I know of that accepts insurance upfront. Still, the cost sometimes knocks the wind out of me. It's still expensive, plus that doesn't include lodging for three weeks or travel from MA to TX. Still, it's like you said - to heck with it. If it can help our son (which it has DRAMATICALLY - see the Fox News story about Daniel under "Links" on his page), we're going to get it. We're taking another month - long trip to Houston in April, and yes it is stretching our wallet a bit. But helping our children achieve really is priceless

  3. Oh Ellen, insurance and special needs is definitely a rant I shouldn't get on. It just isn't FAIR. I wish all kids with disabilities could get 100% coverage. As it is, D isn't disabled enough for any supplementation. The year Elise was born, we paid over $24,000 in medical payments and I'm still fighting our insurance company over a couple of bills from that time frame.

    Not only is the monetary drain, it's the emotional/mental drain from the constant insurance battles.

    If you get a moment, I'd like to hear some more about the hyperbaric therapy and what your thoughts are on that. I had a friend email me about it recently.

  4. We adopted all of our kids from foster care so they get medical assistance from the state as part of the adoption assistance. All of our kids have varying degrees of special needs, thus the assistance. HOWEVER, even with the assistance, I still have to fight for nearly everything because MA pays hardly anything , our insurance pays less, and we still get stuck with many bills. It is so time consuming to spend all this time negotiating with the state and the insurance company and doctors offices when we are already sapped from parenting our kids who require more than the "average" kid.

    One thing that has REALLY worked well with Tara's CP and was CHEAP was finding a Gonstead chiropractor. It is a specialized type of chiropracty that works on opening up that closed nerve base at the bottom of the brain stem where things get all backed up with kids who have CP. It costs less very little per visit so our insurance usually covers it without a fight. And it has done amazing things. Our kid used to not be able to walk upright, jump, run, etc. and after several years of Gonstead once a month (only takes 5 minutes) she can do just about anything. Amazing.

  5. I used to be a teacher but became stay at home (aka driver to therapies and doc appts.!) after Ethan's birth. Since my husband is a contractor we can't get a good group policy and therefore our coverage (which is a mortgage payment in size) is pretty lame and doesn't cover the majority of Ethan's visits and therapies. It's tough because I might have to go back to work just for the insurance, but then who will drive him to all these appts. and be his advocate? It scares me. Not to mention the fact that since he was born I have not had more than a 3 or 4 hour stint of sleep during the night. I can't imagine trying to deal on the job with my addled brain!

  6. * Dianne, I am with you: trying new things is worth every cent. Like Johanna says, it's priceless. I've never heard of Piedro boots, need to look those up.

    * Johanna: It is absolutely and utterly INSANE that they refused to cover the cost of the MRI!!!! We've used a therasuit too. I will go check out that Fox video of Daniel. I did not realize that, on top of being adorable, he is a TV start to boot.

    * Shannon: Hyperbaric therapy is something we tried in the first year of Max's life because we were trying EVERYTHING. Essentially, it's supposed to "spark" dormant areas of the brain. Dave and I had to go into a glass tube with Max cuddled up tight next to us and lie there for 45 minutes. Kind of claustrophobic. But, we did it. I have no idea whether or not it helped Max, in all honesty. Dave and I used to joke that maybe it made US smarter, too!

    * Torina, I am amazed by you and the kids you have adopted. I have never heard of Gonstead, another thing I will look into. Maybe you can do a whole post for me on it, sometime?

    * Hetha, it is a Catch-22. If you do go back to work, especially to get better insurance, then you have to hire a caregiver who drives to transport Ethan. Our longtime babysitter learned to drive for our kids. We were lucky it all worked out!

  7. ugh, insurance! Before I quit my job I worked for a sister company of a well known insurance company and we had well over 6,000 dollars in expenses they didn't cover while he was at the hospital.
    Most of our therapies are through EI and those are at no cost, thank goodness. We have medicaid now and I applied for disability for the months we're having a hard time with (we send in our checks every month to see if we're eligible). They've covered every doctors visit and splints and such, until recently.
    They're is a lot of funding out there and I've talked to several of my therapists about getting this high-low base that we were denied. It's such a long and drawn out process to sift through our options, but we have to try. I know I'm going to have pay for things out of pocket so I try to save where I can.
    I could ask MrB's parents but I'd rather wait until we REALLY need something for him. I'm sure my parents would step in to if I'd ask

    I'm actually a little freaked out this year because MrB is suppose to earn more this year, and that means we'll need to get our own insurance, but I don't know who would provide the best coverage!

  8. We are very lucky to get state supplemental insurance. With just our regular insurance, it was like two extra car payments just to pay the copays. I am so grateful that we now have the supplemental! Without it, we would have to downsize our house or some other drastic means to keep afloat.

    I do feel for that family!

  9. We max our private ins. and they are unlimited for PT which is great but do not cover OT and Speech so that is out of pocket. We are still paying for seeing Ramon for Medek as that 2 1/2 week of therapy including accomodations is almost over 5 digits and is not covered at all. I try to be creative with how we use her funds for relief and am using it to pay for her riding. We live comfortably but have lost the ability to finish our home renovations that we had planned when we bought our older home.
    We have had family give us money instead of gifts and use it to pay for her therapy. We will be seeing Ramon soon and I am going to see if a service club can give some money to her to help pay for her Medek. We as parents have different priorities for our children and we will use whatever means we can to help them succeed.

  10. I blogged about the Gonstead Technique a while back: http://busyintersection.blogspot.com/2008/09/cerebral-palsy-and-gonstead-technique.html

    The only thing I would suggest is to have your kid listen to headphones while they are getting cracked (if you decide to give it a go). The noise is scary for kids.

  11. See, this is one reason why Jeremy will be in the miltary forever. It's been a while since I crunched numbers so it's undoubtedly more now, but the last time I totalled up all of Connor's medical bills the total was something like 1,200,000 dollars. That's right: ONE MILLION two hundred thousand dollars worth of medical bills in the last two years and ten months. Because of Jer's military insurance, we've had to pay around 40 dollars of that total. If we didn't have Tricare (the military's insurance) we would be bankrupt many, many times over by now. I know a lot of families have had bad experiences with Tricare, but thus far they've been fantastic for us. Good thing Jer likes his job: he won't be quitting unless we win the lottery, and then it'd better be a really big jackpot. At the rate we're going, a paltry 5 or 6 million wouldn't cut it.

  12. It's amazing how we are all managing to cope. And, Jess, that is mind-boggling. I am so glad you are so incredibly well-covered. Amazing medical benefits is the least our military men and women deserve.

  13. I WANT to be able to do a lot of things. Unfortunately, even with insurance, our out of pocket expenses have already killed our bank account. I WANT to do tons of things, but can't.

    My heart goes out to that family. I hope they get the help they need soon!

  14. I can relate to financial struggles. Luckily I have a good job with decent health insurance so that has helped a ton. Since Jude has up to 6 seizures a day he cannot stay in daycare. We also did not want to leave him with relatives until we had them a little under control. SO therefore, Mike had to quit his job and stay home. So we are a family of 4 living on my salary which is tight. Luckily we have had some donations, and family members that send us a little here and there. We also auctioned off my husbands tickets to the last Cowboys game, we have a garage sale coming up, and we changed our phone plans, etc. I guess you just learn to adjust to your new living situation and earnings. One thing that hurt us is that my pregnancy was so difficult we had met our max pay out on our insurance, and had about $7000 in med bills to pay. We thought we had gotten lucky and wouldn't have to pay for the birth, etc. Welp the health insurance renewed 9/1, and I had him 9/2. So that now makes us a FAMILY plan and we now have a 10k out of pocket. GRRR! I hate health insurance....yeah I am an insurance agent, BUT I DON'T SELL HEALTH! We did just get interviewed by the state of Tx for MDCP which is the medically dependant children program. That will help a TON. Anyway, I have now blogged on your blog.


Thanks for sharing!

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