Stories of Vocational and Community Reintegration after Brain Injury
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
Living in a small community has its advantages: people rallied together and asked the family how they could help. Friends spent time with Chris at home and included her in going shopping or outings to the mall.
And what is the TBI Survivors Network?: “Basically it started with myself wanting to find support and there were no groups here. So I contacted an association, I’m not going to get into the specifics, but they really weren’t interested in creating a peer network. And so I got my first group started off Craig’s List. After I got through the few nuts that come through Craig’s List, and met the first survivors, empowering. Shortly after that we advocated for, a TBI Fund in our state and we added $2.00 onto every parking ticket and named it after Tommy. He went to his legislator’s office every day for a year. It’s his 9:00 to 5:00 job to catch his legislator every time he went in and out. Senator Flannigan was his name. He’s retired now, but he was the first one to listen. And then, with the Senator Hornsby here in our area, between Flannigan and Hornsby they sponsored our state’s first TBI Act.:
“In 2006 is when I started looking for peer support because, there wasn’t a lot of it. But I’ve seen peer support and that’s what helped, when you saw the peer support. I had a friend and she had a crush on me and, thank God, she had bipolar, or some fear of bipolar disorder and then I could relate a little to her believe it or not. So I started looking for another survivor. That was the first thing. I was, God, there’s got to be somebody else out there like me. I remember just looking at Craig’s List at and a lot of weird people come out of those Craig’s List. I’m telling you it was just the most interesting process, but I remember Gloria is her first name, the first gal I met. I could see it in her face. I don’t know how I could describe it. I could just see that she had something similar going on. It was about the same length of time. We didn’t have everything in common, but we could relate to what was going on. So I kept it going, put an ad in the paper and within a couple of months we had 50 people coming to this thing.
How do you help someone go from where you were two or three years ago to where you are now, your ability to integrate yourself in the community- to able to go to the 4th of July? How do you help someone get from there to where you are now?: “These TBI support group meetings are important and this one used to be very good because it, it’s at a Health South and I learned that, hey, there’s other people going through Health South. I’ve been through there. “
We believe that the two critical keys to achieve those goals is through vocational and community reintegration. Doug is someone we think is capable of greatly benefitting from both, even though he is getting very little of that currently. Doug had vocational rehabilitation, but it has been years since he has gotten even a whiff at those services. He might have been materially disabled at such time, but it is clear to us that his intellectual functioning is currently at a level that he might be a good candidate for retraining. That wasn’t the assessment years ago he explains:
As said in Part Seven, the two biggest opportunities to improve frontal lobe functioning is through vocational and community reintegration. Doug is someone who very much wants to reopen his social opportunities.
Vocational rehabilitation and community re-integration ideally could work in tandem to help achieve both mental and emotional benefits. By retraining persons suffering from TBI to find different, but satisfying work, and re-integrating them into society, both the person with a disability and society would benefit. Sadly, this just doesn’t happen in far too many cases. In Doug’s early evaluations, it was determined he could not withstand full time work because of his physical limitations. Doug seems to have the ability and willingness to work. He could probably do well at a job sitting at and using a computer to communicate, yet this does not appear to be the kind of counseling done through the Department of Vocational Rehabilitation.
Gina explains problems she incurred at work; “Listening. It was getting on the phone with people and pulling their file and struggling with their coverage’s and okay, you’re changing vehicles.”
Community integration relates to how much an individual interacts with his community. It has been found that the greater the community integration, the better the outcome after moderate to severe TBI. Ian was asked what he does to get more contact with people? Ian states; “I generally just go out and talk to them. And I’ve â€“ well, oh god, how can I say this? My wife would always ask me, â€œHow do you know this guy?â€ Because I talked to him before someplace else, or I’ve seen him before. Like I’ll be at a store, I’ll just stop at somebody and start talk â€“ carrying a conversation.” Ian has hit on two of the most critical elements to a good recovery â€“ a family/friends and community reintegration. Key to his recovery has been not only his family, but the connection to his friend, who has bridged the gap between home and the community. Getting out, working on projects, trap shooting, those are the types of things that will continue to push his recovery forward.
Even though Kelly has never made a gainful living after her severe brain injury, it is worth stating that the cost of the education she has received, is justified by the remarkable recovery she has had. School is one of the best place for survivors of TBI. It is challenging, it provides community integration and provides goals and structure. While it may still be too early to judge whether Kelly will economically pay back the investment in her careers, the investment in her mind has already paid dividends.
The importance of community in recovery will be discussed in much greater detail in this story, but it is a common theme that the relationships that were built because of the connection to others that came from rehabilitation, become central to life going forward for both the survivor and the caregivers.
There is a term often used to describe one of the key variables in outcome after brain injury: community integration. Recovery from TBI is not a finite milepost, not achieved by passing neuropsychological tests. Recovery is measured by the degree of return to independent function, in the real world as I like to call it: the laboratory of life. The real world is the community and allowing the survivor to walk, communicate and interact with that community is not only the best measure, but the method to achieve growth. If the highest priority is return to community, the best success for such goal is to maximize community support and integration. Lethan continues to explain how import the support was: “I think TBI support groups, going to the hospital, going to church, not so much for the religious help which is neither a negative or positive here. The important thing is finding the community through churches because I know churches or synagogues or any, any established sort of place. Or even just going if you’re able to to a weekly pick-up basketball game or something like that. The main thing is to find people who can support you as you are now and who recognize that you have changed.”
How did you get from the person who maybe didn’t really earn that diploma to the person who can sit on this stage and excel?: “A lot of work and a lot of personal perseverance. But also I was incredibly blessed and very fortunate by having a very strong community support group. I think the main thing is kind of recognizing, not trying to be the person you were before.”
Did your community rally behind her when she came home?: “Right. When she got out of the hospital and we were headed home. All the billboards in town, even though we came home quite late that night. It was after 8:00, 9:00, it was dark. All the billboards and lit up signs said welcome home Maria on all of them. We drove through town on purpose and it’s not our normal route but grandpa had called up and said you really need to go through town. I’m from Minocqua which is not too far from St. Germaine and they had a great big fundraiser. Oh my gosh. I got there when they told me to and I had Otto and Nancy with me. And they had us positioned where they were in the middle of room where they could be blocked off so no one would bump, inadvertently maybe trip and, you know, or hurt either one of them because Otto had to have his foot up and she really couldn’t do much roaming at that time. And hundreds and hundreds of people showed up to that benefit, as the same one in St. Germaine they had which was the next weekend. There were hundreds of people that came in. And it was just, you just get the goose bumps. You can’t believe it and you don’t, you know, as far as the, the caregiver you just don’t know how to repay people.
Rita’s mom explains her frustrations on lack of community resources: “There, there’s just not any place, they need things to do. They want to be social. I mean they do. I’ve noticed my daughter, if there’s younger people around she’s much more responsible. I mean responsive. She is tired of her mother and father. Community integration that is limited to one support group meeting a month, is just not enough.”
Hillary Clinton said it takes a community to raise a child. Without community, there is no recovery from brain injury. The term of art is “community integration”, but what that means is that in order to relearn social skills, manners, to do again those things that 25 year olds do that 12 years don’t, you must be around other people. There is a natural isolation that comes with brain injury. Old friends are lost, new friends hard to make. If there is no family, the natural stagnation that comes after brain injury can result in catastrophic losses long term.
Bill talks about one way that Steven is trying to increase awareness of TBI to the community and law inforecement: “One thing, probably a couple of months ago, Steven called me and said Mr. Wright, would you help me get something done? He said I’m going to give this talk and he had brought me a tape, a copy of his DVD where he, he spoke to his class. And it was about traumatic brain injury and some of the things that he said, it was an impact to the other students, he was trying to explain to them: Maybe you think I’m nobody, maybe you think I’m just anxious, but I’m a TBI survivor.”
TJ has been fortunate to be in an environment, in a family, a community, a support group that gives him not just support, but challenges that give him a focus, motivation and out of the house.
“They love him at bingo. He’s got lots of grandmas.Lots of gentlemen, too, I mean, they all look out for him. TJ sits, I take him and it’s not like I take him, he’s on the board with me, we’re the deed restriction board, and we sit on that together. He basically co-chairs the group with me, so he does everything, you know, he’s right there alongside and, and like I said, I treat him as normal as possible.”