Announcement

Collapse
No announcement yet.

SS disability for kids?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Hi,

    I can see I'm not always good at communicating what I really mean. I didn't mean to imply that only indigent people do and should seek treatment from Shriners. In my research and in hearing from many others on this board I know that many of the top doctors for any type of orthopaedic treatment are to be found at Shriners. I considered consulting with Shriners in Los Angeles and also the Haider Spine Center in Riverside (another facility that sometimes assists those in need of surgery for free) but we felt so good and confident with our doctor and Children's Hospital itself, and being able to have the surgery done fairly close to home was an added bonus. But I, myself have recommended Shriners Hospital to people without any regard as to what their financial status may be.

    I sincerely hope I didn't offend anyone, I would never question anyone's choice of doctor or facility. Like Carmell, I understand that we all are making the best choices possible for our children.

    Peace to All,

    Renee

    Comment


    • #17
      Renee,

      I dont' think you offended anyone. Speaking for myself, I was certainly not offended - I just wanted to make sure you knew about all of your options. As I said, you are doing the very important job of being your child's advocate and seeking treatment from a doctor you trust and have confidence in. That is so important.

      Good luck to you
      mariaf305@yahoo.com
      Mom to David, age 17, braced June 2000 to March 2004
      Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

      https://www.facebook.com/groups/ScoliosisTethering/

      http://pediatricspinefoundation.org/

      Comment


      • #18
        Renee,

        I don't think you offended anyone. I think we all agree that we are all here to help one another, but since we are all so different, we sometimes have very different opinions. I know after my outburst on handicapped placards/license plates, I sent an e-mail to a dear friend to apologize and make sure I didn't offend her because that was never my intent.

        I took Jamie to a total of 5 different doctors and one of those was Dr. Betz at the Philly Shriner's. He recommended and agreed to do her surgery. I had her name put on the surgery list, but went to one more doctor at our local Children's Hospital and that's who did her surgery. Why did we go to Shriner's when we are lucky enough to have excellent insurance? Only because of Dr. Betz. Although he ordered an MRI and wanted it done in Philly, I had it done at home and my insurance paid for it. Why should I get a test done at Shriner's when my insurance would pay for it and that would be one more MRI available to someone who really needs the free care. That's how I felt about the MRI. And if we are ever in this situation again, I'd do it the same way--go to the excellent doctors at Shriner's and let my insurance pay for the tests so we get the best of both worlds.

        Mary Lou
        Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

        Comment


        • #19
          Renee,

          Please don't worry! No offense taken from us. Focus your attention on getting the things in order you need to get your young man taken care of. We are all here to support you and give you whatever cyber-support you need. You are doing a great job! Keep up the good work. Asking questions and having discussions are the best way to learn. That's what we are all here for. I learn so much everyday. We'll keep asking and learning so we can continue doing what we feel is best for our children. Right? Right! Hang in there. It will get better, I promise.

          My best!
          Carmell
          mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

          Comment


          • #20
            I've never been offered disablity, but seeing as pregnant women can receive it, I wouldn't have minded the extra cash having to take care of my daughter after surgery .
            I did get an interesting letter in the mail once after my daughter had surgery. It was a questionair asking if we needed extra support at home or school, etc. Most of the questions seemed geared toward families with childern who had server disabilities, so I tossed it.
            Regarding the Ca Children Services, I have my kids on it. We were directed to it because we're on Healthy Families, the Blue Cross plan. From my understanding we qualify because our scoliosis is genetic. Depending on income, it is based on a sliding scale. You might want to check with Blue Cross about appling for it as suplimental insurance.
            I tease my boyfriend that if he ever wants to marry me he's got to have a great PPO plan and money to suppliment the difference. If I ever have another child and pass this on again, I like having my choice of docotrs.
            Em.

            Comment


            • #21
              ecnw,

              Thanks for the info, I will check with Blue Cross about the Healthy Families plan. Did you have to apply (and be turned down) by Medi-Cal first before applying for CA Childrens Services?

              Renee

              Comment


              • #22
                Originally posted by Philomena
                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
                Hi Philomena. I was in the hosp for 8 days. I had 2 surgeries 2 days apart.
                I had to wear a brace 23 hours out of 24 for 6 months. Sleeping in it was hard but after I got used to it it wasn't to bad. I did not need any special equipment when I came home. Some people do and some don't. I did have a reacher which I used quite a lot. In case I dropped something. It came in handy. My husband cleaned my incision and changed my dressings daily.
                He stayed home with me 2 days then he went back to work. I was by myself but I just took it easy. My Dr and PT both told me to do a lot of walking and I did. It was tough at first but got easier after a while. I have had 2 more surgeries since then, but I am alot straighter and almost pain free. If you need someone to chat with just let me know. You never said when you were having your surgery. I wish you the best of luck...........Mattie

                Comment


                • #23
                  Hi Renee

                  I lurk on this board and havent been around in awhile - had spoken to you months ago. I now see all this stuff about CCS and Disability,etc... and questions you had regarding CA Childrens Serv (CCS) so thought I would chime in being I am from CA also and just recently got CCS for Cole. I did not have to apply for the Healthy Families plan first, I know a bit aobut it and I dont think financially I qualify plus Cole has a PPO ins thru his dad (my ex). But like you said even tho PPO there are still a ton of medical bills to be paid. It is outrageous! and alot of stuff that the PPO Ins wont pay like a CT Scan at our Ortho's Hosp (CHLA) but then when they found I had CCS, they just billed them for the balance after our Ins paid some. I pay nothing!

                  I wish I would have applied for it right after my divorce a few yrs ago but dumb me forgot all about it until this past summer so applied. When Cole was a baby and I was still married we applied but financially we did not qualify but now with less income I do. I had to pay a yrly fee based on income and next summer I will have to reapply. CCS pays for anything connected to Cole's Scoliosis diagnosis after the Ins pays there portion and I am not liable to pay any of it! I love it!!! I dont understand why they asked you to file for other ins or Healthy Families first. I will ck out all my paperwork and research on it and let you know more on how I went aobu it in the beginniing if you would like. Just let me know. I have a whole file folder on them and everything connected to it. For Cole's most recent surgery CCS even paid for our hotel cost across from the hospital and got me Hosp meal vouchers. This helped so much as I am really on a limited budget being a single mom. I hope this info helps. The only problem is if you apply and get apprvd for CCS now (AFTER JOE HAD HIS SURGERY) they WILL NOT GO RETRO BACK to cover any of that surgery cost only any upcoming surgeries. So I am still paying payments to the Hosp for Cole's surgeries in Oct 2004 and May 2005 but the last one in Jan 2006 is what they helped cover. that is why i was so upset with myself for not applying sooner-still owe 1400.00 for those two surgeries! sucks!!!

                  Ok I babbled way to much!! LOL!!
                  STacey
                  So Cal

                  Comment


                  • #24
                    Originally posted by Carmell
                    Renee,

                    Please don't worry! No offense taken from us. Focus your attention on getting the things in order you need to get your young man taken care of. We are all here to support you and give you whatever cyber-support you need. You are doing a great job! Keep up the good work. Asking questions and having discussions are the best way to learn. That's what we are all here for. I learn so much everyday. We'll keep asking and learning so we can continue doing what we feel is best for our children. Right? Right! Hang in there. It will get better, I promise.

                    My best!
                    Carmell - I have visited your site some amazing pictures and stories. Give my best to your family. Hope everyone stays healthy now. I believe your family has benn through enough to last a life time. Good Luck to you and your family. My best ..........Mattie

                    Comment


                    • #25
                      Stacey,

                      Nice to hear from you, I was thinking of you a couple of weeks ago, wondering how you and Cole are doing.

                      Yeah, I don't know why I have to go through all these other steps before applying to CCS. Maybe San Diego County does things differently Anything else you can tell me about the application process would definitely be helpful.

                      Are you sure that CCS will not go retro even if you apply within a certain time period? Someone, either at dr. office or CCS office told me I could apply 3 mos. back from date off application - now I'm really confused. Guess I will find out though, huh? I haven't even had time to look into this, last Monday my 7 yr. old came down with the flu, and by Friday he still could not even keep water down and our ped. had him admitted to our local hosp. for dehydration. So I was at the hospital with him amost the whole time from Fri. afternoon til Sunday, which by the way, do you think I could get this covered also??? My head is spinning right now.....

                      Anyway, I would be grateful for any info or advice you have to offer, I could really use the help!

                      Take Care (and stay healthy!)

                      Renee

                      Comment


                      • #26
                        Hi Renee

                        I have been so busy lately no time to look up the info for you but just wanted to post a quick note saying I will be cking my stuff out further for you as soon as can-hopefully this wkend.

                        How is Joe doing?? Cole is good, just turned 12 yrs old and we are having a Bday party this Sunday at my house so preparing for that.

                        Stacey

                        Comment


                        • #27
                          oh I forgot I was gonna answer your question on CCS going retro for past surgeries. No they definitely will not, I have no idea why you were told different info at different places. I was told by other friends who had CCS that they would not go back even b4 started the process as I was hoping they would as Cole had surgery in May 2005 then I applied and got CCS that summer (june or july) so was quite bummed I did not do it sooner! But it has been a big help since then with Cole's recent Jan 2006 surgery and Pulmonary Dr's he now goes to. OK talk to ya later!
                          Stacey

                          Comment


                          • #28
                            Hi Stacey,

                            Thanks, I appreciate you help. No rush as I have not heard back from MediCal yet.

                            As for Joe, he is doing great so far! He is putting in full days at school and is also participating on the freshman Academic Team and Chess Club. I am so happy he found something to participate in, being he is still so limited activity-wise. He has another follow-up appt. with Dr. Newton in about 2 weeks, hopefully some restrictions will be lifted.

                            How is Cole doing since his January surgery? Hope he has a great birthday weekend! Joe will be turning 15 in a couple of weeks and I'm not sure what to do for him - any party ideas for a 15 y.o. boy anyone??

                            Anyway, hope you have a great weekend! Talk to you soon.....

                            Renee

                            Comment


                            • #29
                              Renee,

                              Sorry I don't have any suggestions for a 15 y.o. boy's birthday party. For Jamie's 14th birthday last year we took friends and went to Rock N Bowl (bowling late at night with LOUD music and very little lights) but I doubt Joe will be allowed to do that. It might be easier once he sees the doctor in a few weeks and you learn what he is allowed to do and then go from there.

                              Tracy's 13th b-day is April 1st and she's not sure she wants a party. She really would like to go somewhere instead, but when I asked where of course she doesn't know! I suggest a trip to the Philly zoo since she loves animals, no; suggested a day trip to New York, no. Any suggestions?

                              Mary Lou
                              Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

                              Comment


                              • #30
                                Hi Mary Lou,

                                The bowling party would be perfect, and it's one of Joe's favorite activities. He was in our local bowling league prior to surgery. But no, that will be on the restricted list for some time. I was kind of considering a surprise party and maybe hiring a local magician (who's supposed to be pretty good) maybe come and entertain for a short time but I don't know - is that too childish for a group of jaded freshmen, lol?? May not be a bad idea to wait and see if any restrictions will be lifted, plus the weather might be a bit nicer then too.

                                A 13 y.o. hmmmm.........my daughter recently went to a 13th b-day party at our local theater. They had a small party room where they had pizza and cake, then the group saw a movie. Or, how about a miniature golf-type place where they may also have bumper boats or other types of rides and arcade? A trip to a beauty salon and then a glamour-type photo with a friend or two?? Going to a cool restaurant like a Hard-Rock Cafe? Boy, it was so much easier when they were younger, huh? My daughter turned 13 in Oct. but we didn't end up doing anything because she was sick the week of her birthday, then I got so busy preparing for Joe's surgery so I still owe her one. Well, if I come up with any more bright ideas I will let you know - take care & talk to ya later!

                                Renee

                                Comment

                                Working...
                                X