Son recently paralyzed 05/2014 and we are in need of help

Son recently paralyzed 05/2014 and we are in need of help

Posted by Melanie on Jun 19, 2014 3:33 pm

My son who is 18 was just recently paralyzed.  I have looked high and low for help in modifications to our home.  Since my son is 18 he is still considered my dependant, he or we don't qualify for any assistance. Everywhere I look everyone tells me our income level is not low enough to qualify.  We don't qualify for loans and we don't qualify for assistance then what are we suppose to do?  Anyone out there have any idea or help for us?  My son is coming home soon and we need help.

I was also told we should write up a documentation for the doctor to sign that list all the equipment my son needs and to justify the reason for the equipment. Does anyone have experience in getting Private Insurances to get equipment for vertical theropy and FES equipment?

Re: Son recently paralyzed 05/2014 and we are in need of help

Posted by jmitw on Jun 21, 2014 5:07 pm

At 18, he will be eligible for SSI until he can work if he doesn't have any financial resources over $2000.  They stop counting the parents income and resources once a person turns 18.  The federal benefit base amount is 721/month.

Also, contact vocational rehab...if there is anything specific he needs to work or get to job training, they may pay for it....as well as pay for the training..maybe even a college degree.  For example, they may pay for the cost to make a vehicle wheelchair accessible.

States have different programs...it would help to know what state you are in.

In NJ, I believe he would be eligible for the catastrophic illness in children fund for example.

look into adaptive sports...there are programs for manual chair and power chair users:  wheelchair and ambulatory sports USA and powerchair soccer.

Hospital social workers are supposed to be knowlegdable about resources, it is concerning that you were not given more help.

Re: Son recently paralyzed 05/2014 and we are in need of help

Posted by zuzu on Jun 21, 2014 9:43 pm

For help with home modification start here - http://homefreehome.org/about/mission-and-history/
and here - 
http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.printer.friendly&id=3

T
ry HUD, they do have funds for people to help with modifications for accessibility.  Be sure to totally explain your situation and ask for help with the changes you need.

I'll try to give you my email in a private message.  Deborah

Re: Son recently paralyzed 05/2014 and we are in need of help

Posted by Melanie on Jun 22, 2014 10:40 am

Thank you JMITW we are in the State of California and I'm specifically looking for home modification help or assistance and the verticle standing equipment along with an FES bike.  Although, my son does qualify for SSI and we are still in the process of trying to get it.

Thank you zuzu, I will look into the links you gave me.

Anyone have any information on how to get insurances to cover certain equipment like an FES bike?

Re: Son recently paralyzed 05/2014 and we are in need of help

Posted by zuzu on Jun 22, 2014 1:38 pm

JACKPOT!  My mom lives in CA and the majority of info I have is for that state.  I left you a private message with my email.  My parents have some equipment she no longer uses that you may be able to use.  They have an electric Hoyer like is used in facilities I know they don't use.  I'll check on the standing machine, I'm not sure if they still have it.  They live in Petaluma.  Are you North or South, which county?  I do have some contacts I can share that may help, and places to check for the FES bike.  

Look up California Used Medical Equpiment Exchange.  There's a listing for each state of mostly free or greatly reduced medical equipment people try to get rid of when they don't need it any longer.  You'll have to join for free, but it's just to allow anonymous contact.  Then you can browse thru by location and equipment type.

I have a few other lists by county, there's more in the Southern CA area.  Let me know, and I'll start asking too.  Where's he at now?  And do press that social worker and discharge worker for writing an Rx for all the equip. he needs so you have documentation to give insurance companies.  The ACA has made it more difficult to get some durable medical equip in CA and more expensive, but there are ways to get help with waivers and grants to pay copays.  It's one step at a time and a LONG process requiring patience.  Your family can do this.

I also think you should check the site Life Rolls On, it will encourage your son.  He lives in the best state for adaptive sports, and will be active in no time.

Things will get better eventually.  Deborah

Re: Son recently paralyzed 05/2014 and we are in need of help

Posted by Melanie on Jun 22, 2014 5:09 pm

Thank you Deborah. I need to try and figure out how to get to your private message. I'm new to this site. I don't live close to your mom but then again I don't live too far either. I live in Stanislaus County in Central California. My son is currently in northern California about 1.5 hours from where we live. All you information is very helpful. I will try to get to your private message so we can communicate more in detail. Thank you so much

Re: Son recently paralyzed 05/2014 and we are in need of help

Posted by zuzu on Jun 22, 2014 6:30 pm

Ok I'm sending you info by email. 

Re: Son recently paralyzed 05/2014 and we are in need of help

Posted by prc_donnal on Jun 24, 2014 1:03 pm

Hi Melanie,

Welcome here! 

You have gotten some excellent advice and suggestions.

I am an information specialist at the Paralysis Resource Center. If you would like, I can email/mail you our new-injury
package of information, which includes info on home modifications, grants for individuals as well as info on clinical
trials, etc.

Please call me at (800) 539-7309 or email me at dlowich@christopherreeve.org

I look forward to hearing from you!

Sincerely,
Donna

Re: Son recently paralyzed 05/2014 and we are in need of help

Posted by Community Admin on Jul 8, 2014 12:03 pm

I don't want our community members to miss out on posting where Dr. Dan Gottlieb can see it and respond. He is our resident family psychologist who is living with quadriplegia.

He's live in the Healing the Heart and Mind discussion category of this community every Wednesday from 3:00 PM - 4:00 PM ET. He very good about responding and offering his insights. I believe he will have a lot to add to this discussion as well.

Link: http://www.spinalcordinjury-paralysis.org/forums/viewcategory/3343

It's a very active discussion and you'll receive replies quickly here!

Thanks for posting Melanie!

Julie
Reeve Foundation Web Manager

Like us on Facebook Follow us on Twitter YouTube Google+ LinkedIn Reeve Foundation Community Join our community.

Re: Son recently paralyzed 05/2014 and we are in need of help

Posted by Leilani on Mar 18, 2015 3:40 pm

Hello Melanie, I am as well a mother of an 18 year old recently also injured. I was able to qualify him for Medi-cal as long as I did not claim him as a dependent on this years tax return. With this approval my worker also stated I could receive some reimbursement for some of the modifications that needed to be done. 
 

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