Can you help this 12 year old boy?

[manitou]

Kar3n - I just checked and it is SSI.  Mom is going to have to be very careful with this.  I just told her to keep any further donations off the website.  There's a local fellow that wants to put Jaiden on the local TV station about this, but that may be a bad idea.  I can't thank you enough.  How awful if his Medicare benefits were somehow affected.  Like this poor woman doesn't have enough on her plate already?  Now Jaiden's younger sister has been given a diagnosis of Asberger's Syndrome too.  it all just makes my head spin, how unfair life can be sometimes.

[Kar3n]

I just looked at the article.  It says the 'resource limit' (not sure what that is) is $2,000.  If there has been $1300 raised (and we raise no more on the gofundme site, we can lower the profile and keep it out of the fundraising site), I wonder if that would be okay?  Flawed system isn't the word for it!  I'm guessing the adaptive bike company may know more about this as they deal with it all the time.  I don't know if he's SSI or SSD.  The situation in the article (as to the genetic origin of his disability) sounds very similar, and that boy was on SSI.  Do you know any more about the resource limit?

 

Thanks a million for the heads up, Kar3n!

 

SSI Handbook

Income, earned and unearned are outlined starting at the bottom of page 11

Resources as defined by the SSA can be found on page 16

 

I think it may be doable from some of the research I have done. 

 

Much love

Karen

[manitou]

I agree - it does look doable.  The unearned / earned income limitations seem to extend to food and shelter; there doesn't seem to be any mention of gifts etc, in fact personal property seems to be exempt. (if owned prior to the SSI grant; however, it says no more about personal property if obtained after the SSI grant.  Maybe I'm just not seeing it).

 

 I've been living with PTSD for 35 years and I have no ability to focus on documents like this.  I so appreciate your willingness to check, as you have.  I have a feeling the bike shop who bills Medicaid may be the ones to talk to about this.  Or maybe even an anonymous call to SSI or a knowledgeable social worker.  

 

You're fabulous - thank you!

 

Barbara

[mostly_empty]

I don't know american law or custom, but I did look at the documents at SSI etc..

 

The bicycle would normally be exempt as described, however 1) it would be wise not to transfer the money to the family and 2) this is only a matter of policy. If this were me, I would write a letter, not from the family, to the SSI program and ask for a ruling in advance. Failing satisfaction you could send to your local congressional office... they would win this easily for you.

 

However, the US has a specific ABLE act designed for exactly his circumstance. So someone on this list from the US could assist the family in opening an ABLE account - the money would be transferred to this account and then is protected by law for this use.

 

Hope this helps.

 

Revision: your state has not yet implemented the ABLE act... so back to getting a letter that certifies that this will be understood to be an assistive device (since this category is specially exempt from "resources").

Edited February 9, 2016 by mostly_empty

[manitou]

Hi Mostly_Empty - I'm so sorry I didn't acknowledge your wonderful response until this evening - for some reason my notification thingie isn't working, and I don't get notified when someone responds to a thread.  Your advice is very helpful and I have copy and pasted it into an email to Teresa Foden, Jaiden's mom.

 

There is a wonderful update on all of this.  It is beautiful synchronicity.  When Jaiden was born, he was born in a specific hospital up in Akron Ohio where children with Hanhart Syndrome and similar deformities are born, there is a specialized unit apparently.  They were in touch with the Teresa Foden for several years, then all contact was lost.  Just this week, out of the blue, one of the directors of the hospital unit contacted Teresa by mail, saying that the hospital was going to be sponsoring a summer camp specifically for kids with Hanhart and similar disorders, and would Jaiden be interested in attending?  She called him, and during this conversation, she told him that she had collected over $1,300 (just from our gofundme site alone, 95% of donors being us Bums) toward the purchase of a trike to be adapted to Jaiden's physical needs.  He says that he is in touch with a veteran's organization in Akron which does exactly that - they've never done a trike before, it's always been in the adaptation of donated two wheelers.  But he told Teresa that in this particular case, they will come in with any additional money that is needed and see to it that Jaiden is riding an adaptive trike by summer.  They will come in with any further money that is needed for the trike, plus see to it that the adaptation is done.

 

Sometimes the 'hand of god' or whatever you want to call it just astounds me.  This is one of those times.  We have truly made a change in someone's life; this boy will be able to do something other than just watch TV and play with Legos on the floor.  I am humbled by the generosity of all of you, whether it be your money or your time researching.

 

I love you.

 

Thank you,

 

Barbara

Edited February 21, 2016 by manitou

[mostly_empty]

Wonderful news!

  I am sure they will know how to handle the paperwork as well.

 

All the best.

[manitou]

Thank you, mostly_empty - and yes, they probably come up against the paperwork thing all the time.  I can't imagine a child's family with Hanhart syndrome not having the SSI help.  What a break this is.  I feel so good about all this.

[manitou]

Update on Jaiden, for anyone following this thread - his body has been measured by the boy's mother, at the request of the hospital in Akron for purposes of adaptation.  Things are moving along - they have taken the initiative, and they will be kicking in with the balance of the trike that Jaiden really wanted (the pricey one that he saw up in Erie) and adapting it.  Jaiden will also most likely be attending their summer camp, if it goes off - assuming they get enough kids like Jaiden that want to attend.

 

When this is all completed, I will post a picture of Jaiden on the trike.  This wouldn't have happened without you guys.

Edited March 16, 2016 by manitou

[manitou]

May 2 update.

 

I'm feeling a little angst because I'm back in Ohio and it's still a work in progress, according to Jaiden's grandmother, whom i spoke with yesterday.  I was hoping to be able to provide some results by this time.  She confirmed that she send the check off two and a half weeks ago (the approx. $1350 that had been raised and put on the GoFundMe page), and that the veteran's group were kicking in with the rest.  As mentioned above, the measurements have been done and sent.

 

One of the problems here is that his mom, Theresa, has quite a bipolar problem and some days she can make it in to work, some days she can't.  I'm surprised she still has a job at the local Schezuan restaurant (or however it's spelled).  So this bicycle's wheels are moving rather slowly.  I'm hoping to know something more soon, and I'll post it here.

 

If, for some reason, I find out that this isn't going to happen, each and every one of you will be repaid out of my account.  I told this to Jaiden's granny yesterday, that I would be doing this if for some reason the bike wasn't going to happen.  I know it's not a scam.  It's just that we don't have real strong players in the game.  Someone could easily drop the ball.

 

Now I feel better, just saying that.

[mostly_empty]

If, for some reason, I find out that this isn't going to happen, each and every one of you will be repaid out of my account.  I told this to Jaiden's granny yesterday, that I would be doing this if for some reason the bike wasn't going to happen.  I know it's not a scam.  It's just that we don't have real strong players in the game.  Someone could easily drop the ball.

 

Now I feel better, just saying that.

 

Nah, taking responsibility for our actions has its merits - but trying to be responsible for everyone else is much less fun than you think. I did try that on for size once upon a time....

 

Obviously people giving to a charity mean well and do hope for a good outcome. Full stop. Thinking that you control the outcome of anything in life is just bound for unhappiness. ("if you want to hear god laugh, just tell her your plans").

If I were you I would wait ever so patiently until everything goes as well as it possibly could. Wu wei and all that!

 

Cheers.

[manitou]

thanks, mostly-empty.  I will wait and be more patient, that I have decided.  But when it gets to the point of no return, I have to even-Steven my own soul on this.  Luckily, I view money as nothing more than stuck energy. There's always more where that came from when we keep it cycling.  Paying back would be most important for my soul - I wouldn't feel right without it if I didn't.  And that's what important to me - not the money.

 

I'll know before too long about all this.   I'll give it maybe another month.  Who knows?  Maybe the veteran's organization had to raise some sort of fundraiser for the particular trike that Jaiden wanted.  I just don't know all the players here.  And on the other hand, I don't want to step in and facilitate the whole thing.  That's just beyond my scope, as I see it - and yet it would be so very easy for me to do so.  But Mom has to take some action here, not just slouch around, refuse to take her meds, and let life pass her by, letting everyone else do for her.

 

I don't want to put pressure on her with all her health concerns - but no doubt my conversation with her mother got back to her.  I'll probably hear from her as soon as she has something new to report.

[manitou]

I want to let everybody know who has participated in this endeavor, that Jaiden has finally gotten his bike.  I talked to his mother last week at the Szechuan restaurant, and he had it at that time, said she hadn't found the time to take a picture.  There are a few minor modifications that needed to be made, and I don't know if he is actually up and riding today.  He did ride for a day or two, and they realized that something needed to be retrofitted slightly differently.

 

The veteran's group kicked in with about $600 additional to buy him the one he originally sat on up in Erie, PA, which is real nice. I was afraid we were going to have to go for a cheap model - but it all turned out for the best.  There is a retired engineer in the veteran's group who volunteered to do the retrofitting to his body.

 

Plus, Jaiden and his sister will be going to that summer camp that Akron Hospital is hosting for victims of Hanhart Syndrome this summer - his little sis gets a free ride on this too, so that Jaiden can have a family member there.  Teresa let him make the decision as to whether he wanted to go to the came, and after a few weeks of mulling it over, Jaiden decided to sign up for it.  It sounds like Jaiden's life will be taking a turn for the better.

 

I can't thank everyone enough on this thread who so generously kicked in to help with this.  The Bums accounted for about 85% of all money collected, and it is truly a tribute to your hearts here.  Never have I known a group of folks like this before.

 

As soon as Teresa can get me a picture (or I may have to go over to their house and take one, then figure out how to post it here) I will post a picture of Jaiden on his bike.  In the meantime, please know that you've made a 12 year old boy very happy, and he now has some hope of keeping his weight down to a manageable level.  Plus, he gets to actually go outside and play with his friends, as opposed to staying in the house with his Legos and Lincoln Logs.

 

The donors here in this forum are a true testament to the realization of the Oneness of all.  I thank you from the bottom of my heart for your kindness.

 

Love,

 

Barbara

Edited May 26, 2016 by manitou