SS disability for kids?

[flowerpower]

Someone mentioned that we may be able to apply for Soc. Sec. disability for my son who just had scoliosis surgery. Has anyone ever heard of or done this??

Renee

[Snoopy]

Renee,

Refresh my memory, does your son have other health issues besides the Scoliosis that would lead you towards Disability? The reason I ask is that most people with Scoliosis are not disabled. There are a few adults that are totally unable to work because of complications from their Scoliosis. My daughter had surgery to correct both her Scoliosis and her Kyphosis and is possibly facing a cervical fusion because of Kyphosis. Do I consider her disabled? Partially disabled? ABSOLUTELY NOT!

Mary Lou

[flowerpower]

Hi Mary Lou, no there are no other health issues (so far) aside from the scoliosis. The only reason I brought this up is we are trying to apply for financial aid to help pay some of the medical costs associated with Joe's surgery and the person at the financial aid office asked me if I had tried applying for the SS disability. I was puzzled because I don't consider my son disabled - just restricted from certain things - so I was curious if anyone else has come across this issue. Hope I didn't offend anyone as that certainly wasn't my intent, this whole thing is a constant learning process so I'm just trying to educate myself.

Renee

[Carmell]

Hi Renee,

Not offended at all. However, like any application for disability, the application is usually automatically denied the first time. Then, you appeal and try to convince them the condition qualifies for disability under their language. Scoliosis alone usually is not a qualifying condition because the patient is fully mobile and is able to go to school (for children) and do the things they need to do on a daily basis (personal hygeine, feeing themselves, etc.). For some people, scoliosis is debilitating to the point they can not provide for themselves. That's when a SS disability plan may come into play.

For financial assistance to help pay for the actual surgery, ask the hospital and all docs who will be involved if they have a financial assistance application you can fill out. Some hospitals are non-profit places. These hospitals allow you to apply for assistance to help pay for the costs incurred. The lower you household income, the more assistance you will be eligible for. If you have some insurance, the hospital (and/or docs) may even accept the insurance amount as payment in full. It is a very individual decision. You won't know if they can/will help you until you ask. Good luck and let us know when the surgery is scheduled for.

[Philomena]

Need help in posting a message

I am 52 yrs old and have been trying to post, I guess this was the only way I have figured it out. "GO FIGURE!" I hope this works. I need a response from someone in regards to what type of expectations after surgery to fuse my L1 thru L5 spine. I know I will have a brace and be in the hospital for a week afterwards. I need to know what to expect when I come home and what certain ecquiptment I will need to get up a stair if that is possible. Also will I need a certain type of bed? What will be the post theraputic proceedure? Anyone out there that can help me with any of these questions would be greatly appreciated.

Sincerely,
Philomena

[milwaukeeshake]

Hi Philomena,
After my surgery (I don't know exactly what I had fused, all I know it's all the way up and down my back!), I had a walker and my physical therapist showed me how to use it to help me climb stairs. As for a bed, I just wasn't allowed to use my waterbed. We set up an extra bed in our dining room since I couldn't climb stairs for a week or 2 either. That suited my needs, maybe ask your doctor what he suggests for you
shannon

[Snoopy]

Renee,

I'm sorry I sounded mean, nasty, hateful....after re-reading my own post, I sounded terrible!!! I'm sorry. Handicapped placards/license plates and disability issues are just a few of my pet peeves.

Like Carmell said, it is usually difficult to get approved for disability. My mom is the one person I know of who actually was approved the first time she applied. If there were other health issues with your son (thankfully there isn't) then maybe disability would be an option. I agree with her also that some doctors/hospitals will accept whatever your insurance will pay. If you don't have insurance, you could check into getting coverage for Joe through programs provided just for kids (here in PA it's called CHiP). Also, depending on your income you could check into medical assistance.

Again I'm sorry for sounding so defensive in my post. I apologize if I offended you or added stress to your already stressful life. Let me know if there's anything else I can do to help.

Mary Lou

[Karen Ocker]

Handicap placard???---disability for a child?

The handicap placard came in very handy during recovery from my revision-bcause I got very tired standing/walking the first few months. I stopped using it when I went back to work 6 months after surgery but I DID need it especially when I was driven to PT or the pain doctor.

I returned the placard when it came up for renewal.

Disability for a child is awarded to a child for permanent, long term problems.
My grand nephew is profoundly disabled from being born too early. He gets disability.


Have you tried Shriners for excellent free care?


Karen

[LindaRacine]

I am 52 yrs old and have been trying to post, I guess this was the only way I have figured it out. "GO FIGURE!" I hope this works. I need a response from someone in regards to what type of expectations after surgery to fuse my L1 thru L5 spine. I know I will have a brace and be in the hospital for a week afterwards. I need to know what to expect when I come home and what certain ecquiptment I will need to get up a stair if that is possible. Also will I need a certain type of bed? What will be the post theraputic proceedure? Anyone out there that can help me with any of these questions would be greatly appreciated.

Sincerely,
Philomena

Please respond to this post here:

http://www.scoliosis.org/forum/showthread.php?t=3205

[flowerpower]

Carmell,

Thank you for the info. At our last appt. prior to my son's surgery on 12/19/05, the dr. did say their office does occasionally offer financial assistance and/or write off some of the costs of the surgery but we have to take these other steps first. So I applied to Ca Childrens Services, who said I first need to apply with Medi-Cal, who asked if I had applied to Soc. Sec. for disability - fun, fun, fun Meanwhile, the medical bills are piling up while I try to navigate the wonderful world of health insurance. We do have a PPO plan but I am astonished at the things they say they won't cover, Joe's blood donation, anesthesia services, things like that; and yet Blue Cross just made yet another substantial increase to our medical coverage! Any advice and suggestions on haggling with the insurance people is welcome, I am pretty new to all this.


MaryLou,

No apology necessary though you did scare me! (lol) I did feel funny about asking, and like I said, I certainly didn't mean to offend anyone by my question I'm just trying to gather info so I know in which direction to go. I wouldn't want to take S.S. disability assistance away from someone who really needs it. Anyway, now that my heart rate is down (LOL) you are a very nice lady, you have helped me before - and I totally understand your position on this issue. Oh, and I'm sorry that your daughter may need a cervical fusion in the future, I pray she won't have to endure another surgery. That is an issue in the back of my mind as Joe is not done with growth yet.

Karen,

Yes, we did consider going to Shriners but instead stayed with our current dr. b/c we really liked him & had full confidence in him, and while this is really creating a financial hardship for us I just felt there are kids out there who need their services more than us.

Take Care,

Renee

[Snoopy]

Karen,

Thank you for being honest and turning your placard in when you no longer needed it. With a newphew who is disabled, I'm sure you understand my frustration with placard issues. My mom is disabled and it annoys me to no end to have her park in the middle of a parking lot and have to walk because some rude person is parked in handicapped and doesn't have a placard or license plate. Know what I mean?

Renee,

Part of my gut reaction to your original post was that you were thinking your son would be disabled after surgery. I didn't want you thinking that. I'm sorry you are having so many inusurance issues. Why is it that in this great country of ours, we pay outrageous amounts of money for health insurance, but sometimes we have to fight just to get necessary things covered? Thank you for you prayers for Jamie. If she needs more surgery, we'll deal with it then, but for now, we are just trying to enjoy life without surgical restrictions. However, with a case on her foot and about 6 inches of snow on the ground, it tends to be challenging.

Again, I apologize if I offended/scared anyone.

Mary Lou

[mariaf]

Renee,

Your sentiments about letting those who need Shriners services the most receive them are very thoughtful and considerate of you. Please know , however, that, should the financial burden become too much for your family, you would not be taking services away another child. No Shriners Hospital ever turns any child away - Fortunately, they have enough doctors and resources to treat all the kids who need them. I can understand that you are very comfortable with your current doctor - It's so important to trust one's doctor completely. But, like I said, if you find yourself needing to go another route, as Karen mentioned, Shriners Hospitals offer excellent care at no cost.

Best of luck to you and your son,

[flowerpower]

Maria,

Thank you for you kind words. I am not ruling them out, believe me - I have a 13 yr. old (thankfully no sign of scoli yet) and a 7 yr. old so, should this issue come up again with us I will most definitely apply and seek a consult with them.

Have a good day

Renee

[Carmell]

Hi again, Renee,

I know how hard it is to do all the necessary paperwork to PROVE that you need financial assistance to pay for a MAJOR surgical procedure. And yes, the fact that there are so many out-of-pocket expenses (above and beyond any deductables, co-pays, etc.) add up fast! I hope you get this all sorted out soon so you don't have these expenses hanging over your head. Hopefully the CA Child Services (or whatever it is) helps out.

I have a permanent disabled license plate on my car. The ONLY time I use it is when Braydon is with me, and he's post-op. Walking is an effort after major back surgery (every 6 months) and with only 47% lung function, endurance isn't his forte either. I try to be VERY consciencious about using the disability plates. I know that those who abuse the system make it hard for those who need it. We are tax payers, and this is my "insurance" that I've paid into for so many years. Sometimes I need that benefit. I don't feel at all guilty for doing so. I don't think anyone should.

This goes along with thinking the Shriners organization/hospitals help the indigent people rather than those with insurance. Shriners has some docs who are leading the pack (so to speak) when it comes to certain treatments for scoliosis and other bone conditions in children. Shriners hospital is available for anyone to have access to the best care possible for their child. Like all specialists, one may not be the right for a specific situation. That's the job of the parent to make sure their child is getting the right care, at the right time, by the right specialist. We have a Shriners hospital very near our Children's Hospital. I have visited patients there many times. For Braydon's care, the right specialists have been at the Children's Hospital. Now, the Shriners docs are approved to provide the same type of surgery Braydon has for so many of their patients who need this care. So good to have an expansive knowledge of the various treatment options, and specialists who know which to recommend to the parents.

I know we all are seeking the best care possible for our children. We wouldn't post on boards like this if we didn't care very deeply about what's best for our children. It's okay to have different opinions and to have different treatment methods. Scoliosis in young children and its accompanying conditions are unique and require unique care and treatment. I know everyone will continue to keep pushing forward and helping their child(ren) receive the best care. Keep up the great work everyone!

[mariaf]

Carmell,

As usual, I couldn't have said it any better

Especially regarding the fact that we, the parents, are our children's most important advocates and MUST be proactive all the time, not be afraid to question doctors or their methods or insurance companies or anybody else when we feel it's necessary and NEVER stop searching for the best possible answers and treatments for our child's specific situtation.

I've seen so much courage and determination from parents on this forum - It really is an inspiration.

take care,