4 replies to this topic

[BigSis_K]

(I've been away for a bit, while the site was down & while helping with care taking since my brother came home from rehab - Hi everyone)

Ok I need help on how to navigate the public healthcare and disability system in NJ - I'm getting righlty pissed off and the rest of my family is too maxed out to deal with this

My brother age 32 (c7 complete) was injured in August
Social Security Disability applied for in September
SSI started in October - Medicaid started at transfer form trauma unit to residential rehab
(5 month wait for SSDI, for which he qualifies)
Brother home on Thanksgiving
SSDI will start in March, which means SSI stops and I've been told that Medicaid will also end due to SSDI being too high for Medicaid (24 month wait for Medicare to start)

My brother is going to outpatient therapy, needs 24/7 assistance at this time due to logistical issues with things in the house and medications

I'm applying for Global Options waiver, which I've been told will help with some things, but is NOT insurance

So....what the hell is he supposed to do for medical insurance while waiting for Medicare? I was told by Office on Aging that he will have to purchase private insurance ?! WTF. His oop medical expenses just on Medicaid have been pretty high. The f*cking home health agency has NEVER sent the ordered home health aid & my mother's been paying oop for an LPN to help him out during the week

While I am a social service worker, I'm out of my league here. The red tape is just impossible to navigate. Just when I think I have everything lined up I find out that shit just isn't going to go how I thought it was.

Are there ANY advocacy groups in NJ (southern NJ would be best) who can help me? Or can any of you walk me through the process or give me PEOPLE (not 800 numbers) to contact to do whatever I need to do to make sure that my brother has medical insurance? What will happen to his therapy when he switches to SSDI & his Meidcaid is "cut"?

I'm hoping to get to the office on aging tomorrow to get his GO application done (assuming he has everything ready for me to take there). I feel like every agency has just been pissing around whilst my brother has not received the care to which he is entitled. Just getting the damn catheter kits he needs every month has been a huge hassle, because the facility won't ship them so someone has to go pick them up, and they're never ready on time....

Don't get hurt & become disabled in NJ, they practically leave you on the hillside to fend for yourself!

[quadinva]

This link may help, specifically pages 3 and 4. Good Luck!

[Zack]

Here in NY I'm over the limit for Medicaid by a few dollars. So each month they let me send a check in the amount I'm over the Medicaid limit by to Department of Social Services. They call it a Spend Down. They also offer to allow me to use paid for medical bills as the "Spend Down" but being on Medicaid I don't have any! if not, I'd be sunk!! Medicaid is a Must for Me. I've been doing that for 30 years.

Good Luck!
Hoping your able to do the same.

[Millard]

Hello Big Sis K,

How well I know your frustrations. SSI is managed by your state and SSDI is a Federal program. When you apply and are approved for SSDI, you have a 2 year waiting period before Medicare covers anything medical. You will, however, start getting a check. I broke my left kneecap 27 days before my 2 year wait. Fortunately, my wife had me on her insurance so my out of pocket expenses for the surgery was $9000.00!!! It took us 7 years to pay that off. I called my social security office (45 miles away) and made several trips there but still nothing helped out. I got on a Ticket to Work program which seemed okay. Then in 2009, they claimed I made too much money working in 2005 and wanted me to re-pay $36,000. I appealed this and they lowered it to $21,000. I appealed it again and they cut off my check and insurance. I had to accept it and they now deduct $100/month from my check. When I try to call them, I get only voice mail and no returned calls. I called the southeast regional office in Birmingham (Alabama). I told them of my problems and they promised to find out the problem and would get back in touch with me. Nothing...I never heard from anyone since.

All I can recommend is to be the squeaky wheel and stay on them constantly. Be sure to make notes of time, date and to whom you spoke.

I hope this helps and good luck.

[Gingersnap]

Try the Tri-State Advocacy Project. They are pretty knowledgeable about available programs in NJ, PA & a third state (NY or DE?). They can help your doctors write letters of medical necessity to get insurance to cover things the insurance routinely rejects and let you know about programs available in NJ and how to get approved. I can't remember the name of the gal I dealt with, but she was great.

http://www.tristateadvocacy.com/

877-774-6380

Good Luck