Advocacy

Brain injury advocacy involves identifying barriers to a better life and addressing those concerns with the right people and organizations. In many cases, a person with a brain injury will advocate for better healthcare treatment, better accommodations for their disability, and for better representation in legal matters.

Armed with basic information and helpful resources, anyone can become an effective advocate for themselves. Some people may choose to hire an advocate, such as a case manager or attorney, while others may ask family members and friends to help out.

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Don't Give Up: Advocate for Your Child with Traumatic Brain Injury

Don't Give Up: Advocate for Your Child with Traumatic Brain Injury
Parents should follow their instincts. So the question is, what does a parent do 10 years later? Parents are the people who know their children the best, and they have to follow their instincts. We see stories all the time of parents who have had to go back, and once they get the connection, then they have to fight for what they want, and they should not give up for fighting for what their child needs in the school system. We have programs in place in every major school district to provide services, and part of the fight doesn't just come from asking for services but asking for services that are appropriate to brain injury. And this is a problem we've had and still do have even though, technically, we shouldn't have this problem anymore. We still have children with moderate to severe brain injury being put into special programs with children with CP or with other developmental disorders. And that's not really an appropriate place for a child with brain injury to be placed. So it comes down to education, and the more that gets out there, I think, we have a higher increase in parents who are coming in to us and saying, "My kid had an injury 10 years ago. Could this be what this is related to?" And that's where the field of pediatric neuropsychology, which is still one of the smallest specialties in this country--I think they number in the hundreds of people who are actually pediatric neuropsychologists in this country--really comes into play. Because that's the specialty that's very sensitive at picking up the relationship and the pattern of cognitive deficits. So pediatric neurologists and pediatric neuropsychologists become a huge player. And those neuropsychologists know how to manage the school systems and help develop IEPs or programs for children that are there.

Why People with TBI Need a "Resource Facilitator"

Why People with TBI Need a "Resource Facilitator"
I think the best strategy for helping people get back to the community is helping them develop a network of support. I think people are calling it resource facilitation these days, but it's really developing that network of supported resources that they can use to sustain themselves. If you've had a serious TBI, you're probably going to have some difficulties throughout your life. It's a chronic disease. I think the medical profession is starting to recognize that more explicitly-- that this is a chronic condition-- and that people are going to need some things throughout their lives. And not just medically--also in terms of their social adjustment. Developing that network is very important. Developing that network is also something that is not that easy. It really takes somebody besides the person with brain injury to be doing that. I think a lot of times that falls on the family which is a little unfair. Not everybody is equipped to be a great--I mean, despite the desire, not everybody is equipped to be a great advocate or a great networker. I, frankly, would hate to be in this position myself because I'm kind of introverted. I think I'd do a horrible job even though I might want to-- if one of my family members were hurt, I think I'd have a great deal of difficulty doing the necessary networking and advocacy. So, sometimes it takes somebody else, and unfortunately in our system-- at least at this point--that's not a designated position for anyone.

Learn How to Be a Proactive Advocate for Your Child

Learn How to Be a Proactive Advocate for Your Child
[Dr. Ann Glang] It is very, very difficult to be an effective advocate for your child, and yet we know that when parents are effective advocates, their children benefit. We know that when parents and schools work together, kids have better outcomes. There is lots of research on that. So it is important to be a good advocate. And there's a couple of things that are pretty simple to do that can really go a long way towards making things go better. Again, I want to stress that these things have to be done proactively. That is, don't do it when the emergency has happened, when the crisis has happened. At that point, it is still going to help you but it's kind of too late. If, however, you can upfront do a couple of things, your child is going to be a lot better. So I think as a parent when you are advocating for your child it's important to do a couple of things. One is it's important to remember that you and your child's school team really have the same goals in mind, that you are moving in the same direction and if you can do that together— that in the end everybody wants the child to be successful, to do well, to eventually graduate, and go on to a productive adult life. If we can remember that and kind of start there, that's good. Second thing is to take the perspective of the school and remember that oftentimes a teacher has many, many, many demands on his or her time. Lots of kids, speaking different languages, with different disabilities in their classroom. We have to cut them a little slack because they can't be perfect. Then I think it's very, very important to use effective communication skills. By that I mean, simple things like listening and like using "I" statements and like making eye contact, not walking into a meeting and saying "My kid needs this, and you are going to provide it!" There are a lot of parents who take that approach, and sometimes the bully approach works, so they get reinforced. But in the end, you know the staff in the school are backing up when the mom comes in with that bulldog approach, and they are saying "Look out, here we go." And that doesn't benefit your child because that resentment carries forward to the child. I mean, we are only human. So if you can have instead an approach where you come in and you say, "I understand the constraints of your job. You've got a lot of kids. There's a lot going on. I also know that my child has had a very significant brain injury and has some significant problems, and I need to work with you so that we can make sure she gets what she needs." If that's the approach, that is usually met with a much better response than the other. And I have had families, because we have done some training around this, I have had families say, "Oh my gosh, that Mom who comes in like a bulldog, that's me. That's what I do. I come in. I rant and rave. I walk in with this sack of you-know-what on my back, and I dump it on the table and that's what I do to these people. You know, it's no wonder they are running when I come in." And so, when they learned, you know, some simple things like make eye contact and don't walk in like this, with your arms crossed and being angry. You know, just sitting back and being kind of open and willing to collaborate and that goes a lot farther. And in the end, when you have a nice relationship with your child's school, that's what gets your child what you want for them. You have to kind of put some of that anger and some of that resentment and guilt and whatever you are carrying in And, you know, we all have that. Especially when our child has been injured and we've got a lot of feelings that we need to kind of put aside.