What financial (medical) help is available to a 20 yo parapalegic w/ no insurance?

I don’t know where exactly to stick this post, so here it is.

My little sister is 20. About 2 months ago, she was driving home late one night (Yes, sober.), and ended up flipping her vehicle, and breaking her neck in the accident. She was in the ICU on a respirator for about a month, but is off of that now. She is paralyzed from the chest down, although she seems to have some feeling in her legs sometimes. She has no fine motor skills in her arms, but can move them.
Unfortunately, becuse they are having trouble getting her Social Security benefits started, she’s not in rehab, where she should be, and is losing some of her movement in her arms, and isn’t gaining anything in her legs. Rehab is dependant on having the money to pay for it, and since she was a waitress with no medical insurance, she can’t pay for it, and the family (My mom, dad and my husband and myself, since my brother can’t really afford to help much either.) can’t cover it on our own either. She is in a nursing home right now, which she (understandably) hates, but isn’t able to come home because we (or the family that lives in the area) aren’t able to provide the care and treatment that she needs. She stopped breathing twice when she was in the ICU, when they removed her from the respirator, and has a trach right now. She has to have breathing treatments, which we can’t do, as well as other stuff. She lives in Texas.
I know this is a long shot, but would anyone have any kind of advice on this? Non-profit rehab centers, special programs, anything?

Have you contacted your local Human Services agency to see if they have any advice?

What about a Social Work department at the hospital she was in or the nursing home she is at?

What about Medicare or state-sponsored insurance?

My dad and I talked to the social worker at the hospital when she was there. (Since then, my mom’s gotten back from her hospital stay and has been taking care of a lot of that. Mom was in the hospital for something completely unrelated when my sister had her accident.) I think they’ve already started paperwork on Medicare as well, but it hasn’t gone through yet.
I’m heading back to TX next week, and plan on using a lot of my time there calling people and talking to them and seeing if there is anything at all we can do to try to get her out of the nursing home and into rehab.

Angelicate I am so sorry to hear of this terrible news. In the blink of an eye not one, but many lives have been changed forever. Life is more precious now than before, and frustrating and scary. I’ve been there many a-time and all I can tell you is that what does not break you makes you stronger. If I could wave a magic wand and make it all better, I would.

I can offer only this advice, and it is not about insurance, as I hate them and hope to remain clueless about them for the rest of my life. (What about a car insurance to help cover expenses as it was an non-drunk vehicular accident? She didn’t hit a mailbox did she? From what I know from someone that did in a non-drunk accident -motorcycle- mailboxes negate any insurance payoff, but IANAL.)

What I can offer or tell you is my own personal experience with dealing with a brother who was on a trach. Not all nursing homes will take in a patient with a trach, at least in Michigan, YMMV. It is a specialized care, if that is the word I am looking for, and (again from my experience) there are only four ‘specialty’ care places in South East Michigan that could take trach cases. It was a bit mind blowing to realize this when we were searching for a place near my mom to care for him. There has to be at least one or two nursing homes in every metro city around here and only four had the capacity to care for someone on a trach ( or vent).

Usually these places are reserved for the lingering patients. Dialysis seems to be the #1 thing. They are for patients too stablized and lingering for hospitals who need the bed and too medically needy for a nursing home. I refer to them as " God’s Waiting Room." Prepare yourself to be depressed.

As for your sisters injury, the spine is an amazing thing. (My father in law is paralyzed from the nipples down from a motorcycle accident 12 years ago.) The chances that your sister’s is still in shock and recovering from the accident is do-able. Also, given her age, she just might surprise you in healing, not necessarily in the spine department, but health wise.

Talk to a physical therapist and find out what you and your family can do for her while you wait to figure out the hassle of insurance. Maybe one of those squeezy ball things to help with strengthening hands and keeping the muscles from atrophying and, with a doctor’s permission, working and massaging her legs, feet and arms.
The best course for you is to arm yourself with knowledge about the spine and treatments. I offer to you , The Miami Project.

(www.miamiproject.miami.edu) Which is one of the worlds leaders in treating and finding a cure for spinal injuries. They have treated that NFL football player ( Jeff Speilman?) who was injured in a game and I beleive Vladimir Konstantinov, the Detroit Red Wing who was seriously injured in a car accident. I’m not sure, but I think Christopher Reeves went there as well, or another highly recommended place in Colorado, whose name escapes me right now.
As someone who has spent loads of hours in hospitals, nursing homes and group homes ( which are the saddest places on earth)
I would like to offer some advice:

  1. ** Always wear comfortable shoes.** When trekking after a nurse, back to the car for something you forgot or to find awheelchair, you could walk a country mile.

  2. Dress in layers. These places are notoriously warm…nearly stifling in the summer months.

  3. Make friend with the staff and ‘‘guests’’ there. It can only help, but be advised, in a nursing/group home, these are very needy people and if you do something for them once, they may view you as their own personal nurse or therapist/counselor/new best friend. Learn to make a quick get-a-way. Oh, never give the people there money. They will then always hit you up for more the next time you come. Hate to be a grouch, but I’ve been there, done that. It’s all about survival and taking care of your family. Learning to have a clinical detachment without being an asshole is a learned trait. (people in these places, btw, love magazines, no matter how outdated. They don’t care. )

5.** Handiwipes or anti bacterial soapless hand wash are your best friends. ** Get them for your sister for her bed side. A cold (or nastier things) in one of those places spreads like a mo-fo and when you are paralyzed from the chest down coughing is not the full diaphram hock-a-loogy kind of cough that we know and love, it is a very weak and non productive. (Being a germophobe - as my brothers all had compromised immune systems and a cold could kill them- this was all it took to keep me from having the heebie jeebies.)

  1. Take a notebook, pencil with you to write things down. The first few weeks of dealing with something like this will be a swirl of a new language and procedures for you. It’s like being air dropped into a foriegn country with no Berlitz guide. Write things down to help orient yourself and never be afraid to ask questions.

  2. Take something to read or do There is a buttload of waiting at any medical place. Make it a positive down time rather one that is filled with fidgets and excessive worrying about the what-ifs. I cannot stress this enough.

  3. Talk to your sister normally. Talk about things she likes, movies or whatever. She will probably have some mood swings and she is entitled to them. Try to give a sense of normalcy to her and yourself. Print off the SDMB that thread about “What is your favorite joke” Bedside manner of the visitor is key to a better recovery or endurable stay. And, when in such a trapped enviroment, even the lamest joke can result in a knee slapping hearty chuckle.

Nothing is worse, IMHO, that visitors who come and well…the only way to put it is they either talk to the injured or chronically ill like death is sitting atop them (very low pitying voice) or they are so uncomfortable that it sets off everyone.

  1. You know all those friends and family that you considered close? Watch them slowly drop by the wayside. I don’t mean this in a mean way, but having watched this happen my entire life with the death of a father, the long lingering illnesses of my brothers and my inlaws terrible accident, when something terrible happens, people in general are extremely uncomfortable around someone who is injured/ill or recently widowed. They don’t know what to say and instead of working through their own uncomfortableness they stop calling, visiting or the Xmas card list.

[size=1] My parents were social butterflies. Very social. When my dad died, everyone one of their social group stopped calling or visiting except one couple My inlaws were very much involved with their german club and very popular. After the initial shock of their terrible accident wore off, they had one couple that came on a regular basis and stayed true to them. With my brothers two of them had no friends that visited. Cousins and family only. It rips your heart out.

You cannot criticize the ones that stop calling or coming around, they cannot help it. Serious injury, death and lingering chronic health problems in our friends and loved ones force people to think about the what-ifs of life, the dreaded unknown and thoughts of our own mortality. No one wants to think these things. We all want happy land filled with rainbows and birdies. And until your sister’s accident, I’m guessing that is where you lived.

You will find out who your true friends are during this time period and it will show you how to be more compassionate towards others in similar situations. I would strongly recommend, given your sisters young age, to email /snail mail them a note asking for “thinking of you cards” to be sent to her and to drop by for visits.

In conclusion, take each catastrophy as it happens and try not to worry about the worse-case scenario. You cannot change what will happen, it is out of your hands. You can only handle what is on your plate right now. * Worrying serves no purpose and only consumes you.*

I wish you a sense of peace in the coming months and will keep your sister,your family and you in my thoughts and prayers.

She did not have car insurance. (Which also means that somehow, her car has to be paid off, even though it’s totaled.). She and my brother were on my mom’s car insurance, but they were getting lax with paying her back and they let their friends drive their cars, and they go out and drink, and we’ve been telling my mom that if they get in an accident while drinking on her insurance, or just get in an accident due to youthful recklessness, it was going to raise her rates, and since they were getting later and later with paying her back already, she needed to drop them and let them get their own insurance. For some unlucky reason, she dropped them off of her insurance on the day that she went into the hospital (August 20), my sister’s accident happened at about 1:08 am, August 20. She had full coverage, which would have helped with a lot of things, but “would have” and “what if” isn’t worth much.

The trach is why she is in San Antonio and not closer to home, I’m guessing. She seems to be breathing pretty well now, from what I’ve heard. The first time they took her off the respirator was only a few days after the accident, and she coded and had to go back on. They took her off again after a week or two, and after a day, she stopped breathing again. She’s been off of it for a while now, though, so hopefully that was just a temporary thing and they can get the trach out someday.

Those are great suggestions. I already knew some of them, but hadn’t thought of others. My sister is pretty popular, and still has a lot of friends that drive the 150 miles or so to go visit her, which I am very happy for. I was afraid that they’d quit coming after a while too. It’s only been two months, but still…
I’ve set up a website for her, just a simple thing with a paragraph about the accident, some pictures and some info about benefits that are going on. The address to send cards to her is on there, and I’ve posted it in my livejournal. Other LJ people took it on themselves to repost and ask people to send her cards and postcards, so she’s getting cards from around the world. People are pretty amazing.