Catastrophic Brain Injury Resources:The Need for a List

Catastrophic Brain Injury Resources: Rita Part Fifteen

What if you could say we need catastrophic brain injury catastrophic brain injury resources applied to one thing for your daughter, what would that one thing be, what the most important thing the resources we provided for, is it therapy, is it wheelchair, is it, what is it?

You know what it is, and I, is some kind of organization that knows of all the available things or items or, or therapies or just all the available resources that are available to people, you know, there, there’s just nothing like that.

What needs to be on that list of catastrophic brain injury resources?

Well all those things, you know, music therapists, physical therapists, cognitive therapy.

Occupational therapy catastrophic brain injury resources?

Yeah just all those types of therapies and who, who does them.  This area here it’s kind of like not a real populated area.  We go to St. Pete. I mean we have to go far away, that’s why I came right here. I was so tired of going, you know, the doctors are down there, this eye doctor oh my gosh. I did a lot of research trying to find him and it turns out he’s right here, very close but I was at first going to go over to Tampa somewhere.  I went to the USF in Tampa to the neuro-ophthalmologist.  I did that all on my own, you know, I just wanted to know what was going on with her vision.

The Brain Injury Association must have some of those catastrophic brain injury resources available.  How much did they help you and what more can be done?

(The BIA of Florida’s resources) just have not been that much help to me. I’ve tried but it seems like they have information but it’s not the kind I need.

Well isn’t that what you say you need though?

No, I need to know where to go.  I need people, actual people, people that I can talk to, offices, doctors, people.

You need a directory of catastrophic brain injury resources?

Yeah.  I’ll show you.  They just came out with one online.  I printed it off.  I’ll show it to you.

This is on brain injury association website. It didn’t take a lot of pages to print it off, is what you are saying?

I looked at it and I went, you know, there’s not one person I’ve either talked to this person or this, this is not a good list here.  I’ll show it to you.  I just could not believe it.

Has your support group ever talked about creating such a list of catastrophic brain injury resources, a local list ofcatastrophic brain injury resources, provider list of catastrophic brain injury resources?

No, no, no.  We haven’t because we don’t really know I guess, you know, we’ve all have our different things.

But you all know more than any of the doctors now don’t you?

We do, oh yeah we definitely do and I think one that is really lacking.

The Resource directory of the Brain Injury Association of Florida is available for download here: http://173.201.23.235/inform/resource-directory/  It is a PDF that is 82 pages. The Tampa area runs from page 38 to 48.

Rita’s mom also articulated the need for another tangible difference maker, a brain injury clubhouse.

This is getting ahead of where I am right now but I’m envisioning in the future is (something for) these people who are somewhat functioning but they can’t work.  They’re so bored, they need a place kind of like –  there’s things for under, if you’re under 21 or if you’re a child or if you’re over 65.  There’s places that these people go for like a day or for a few hours.

There’s a place up in the Panhandle in Florida.  It’s a non-profit thing and I think people can go there just a few hours to give the caregivers a break and I know some states have it.  My, my nephew’s, in Utah and he told me that there are places like that and that’s what he used to do.

You don’t have resources like that here?

No, absolutely nothing.

There’s no day treatment programs or her or in Tampa?

No, not for somebody with traumatic brain injury, no.  There’s nothing here.  It’s very sad and that is what if I could get to the point, that is what where I want to make a change.

Are you sure there is no such place here?

Yeah there could be but I, I doubt it.  I, I know enough traumatic brain injury people that we would know about it.  We would.  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.

I have heard different theories as to what would be the best concept for such a place. Shelter workshops, such as the one that Kevin http://tbivoices.com/kevin1.php went to daily, may be available in the Tampa area.  The more novel concept of the TBI Clubhouse, there are far fewer of those places. As her mom points out, that might be getting a little ahead of the game for Rita, but some sort of respite care is essential for both the well being of her parents as for Rita herself.  Community integration that is limited to one support group meeting a month, is just not enough. She needs more catastrophic brain injury resources.

Next in Part Sixteen  – Need for a Larger Ipad/Touchscreen Device

By Attorney Gordon Johnson

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