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Thread: Bryan is having problems with benefits.....

  1. #1

    Bryan is having problems with benefits.....

    For those of you who don't know me..My 31 yr old son Bryan is a C1-2 quad on a ventilator. His accident was April 2004. Last week the Independent Living Center here has informed him that he basically is receiving too much government money! They have told him that, according to KS law, with the amount of money he has coming in is $500 over the limit!! They said he must start paying $500 of his medical expenses a month...EVEN THOUGH he doesn't HAVE and extra $500 a month to pay them!! His check is gone as soon as he gets it to cover his normal living expenses of a $500+ house payment, gas&electric, phone, cable..etc.etc. Plus..WE are already paying for all his food and other supply expenses..for instance, just last week I paid $42 for a box of sterile gloves..cuz it's not covered by insurance!!
    Second thing..he has ordered a new chair since his is falling apart and he got a call last week that a $900 manual control switch is not covered by insurance..and does he want to purchase it...well..umm..HE HAS NO MONEY!! DUH!! so..he had to say no.. SO..the only way to control his chair is with his sip&puff..that one else has anyway to control that move it to bring it to him or put it back where he keeps it when he's not using it...or if something happened to him while he was in it and he was unable to control it ..or if the sip&puff controls when wacky..which they have at that's a pretty scary thought that we couldn't manually move him!! But..they think one control is enuf on a chair!! grrrr...!!
    Third thing is since his divorce, when his wife left, so did his only means of transportation since HER parents owned the van he used. SO, I just wondered if anyone knew of any funding to get a van. Unfortunately, he's not working so voc-rehab will not fund it at all.
    Pretty big disappoint mess allthogether..and if those things aren't enuf...he has also been battling pneumonia this past week!
    Finally were able to get him nebulizer meds going and then this a.m. found that the aide didn't properly store the little insert hose thingy to attach to his ventilator hoses and it had fallen on the floor and the dog got a hold of it and chewed it up!! grrrr!! so now they have to wait a couple of days to get a new part for THAT!! Which means no pneumonia meds adminstered!
    If anyone can help or give any suggestions on any or all of the above..I would be greatly appreciative!!

  2. #2
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    At this point .. a fundraiser. I would seriously consider that idea. Do you think that's something that might be feasible?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #3
    Quote Originally Posted by lynnifer
    At this point .. a fundraiser. I would seriously consider that idea. Do you think that's something that might be feasible?
    I'm not sure...kinda small town...and we did a number of them when he first was injured. Our church helped with most of them. I will definitely think about it..may be our only hope for the van situation anyway..
    Thank you for your help

  4. #4
    Hi Bryan's Mom;

    I am moving this thread to Work, School, and Money Forum. There might be posters there who are better informed about the processes involved with Independent Living Centers.

    I do have two ideas about this, however.

    The first is that ILCs are generally funded through state Medicaid programs. Such programs have an appeals procedure which requires a thorough investigation into an individual's benefits and resources. Initial decision making such as is being applied to Bryan at the moment is often cut and dry bureaucracy. If you can get beyond the front lines of of the ILC you may get a ruling that is more considered. This process is agonizing but it is important that you have good documentation and keep copies of everything, including their rulings. If you still get an unsatisfactory decision, you will be armed with facts and figures to go to the second idea, which is to contact your Congressman.

    Good luck.

    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  5. #5
    Sandy!!! Check your PM's...

    Take care and God bless...


  6. #6
    er, nevermind about the PM...evidently you are not set up here for those...

    Was gonna just say that it's me, Teena...and you are all in my thoughts and prayers. Sounds like things are going haywire at the moment...grrrrr!!! I haven't talked to our mutual friend at NM in forever either. I didn't even reaiize that Bryan and wife had went separate ways...sighhhh....I'm outta the loop...

    Please tell Bryan I'm praying for him and to feel better soon!!! He doesn't "know" me but hopefully you remember me...I'm a worthless friend for not keeping in touch better...

    Take care and God bless!


    PS--as usual, no concrete advice, just moral support here...

  7. #7
    be careful w/ fundraisers has they may consider it bryans income??
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

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