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Becoming an Advocate

Becoming an Advocate

Tracy
Welcome back everybody. It’s so good to see you.  Okay. Let’s start with an update from each of you. Tell me how things are going. What’s happening with you Megan?

Megan
Oh well Clayton’s doing okay, I think. Overall, the doctors seem really pleased with his progress, but I’m still scared. He can open his eyes now, and he can move his fingers and his toes. He hasn’t said any words yet, but he squeezes my hand to communicate. It’s just hard not knowing what to expect. I don’t know if he’s ever going to be himself again…

And he’s not sleeping much, which really worries me and I’m just so tired all of the time. But they did find a place for me at the Fisher House, so at least I’m not in the hotel anymore. And the families at the Fisher House have really just taken me under their wings, so I don’t feel so alone. And that’s such a good thing.

I mean with Clayton, I just want to help but I don’t know what to do.

Tracy
Well Megan, it’s great that they got you into the Fisher House. Let’s talk about a few things that you can do for Clayton as he’s waking up.

First, you might want to just ask him to follow a few simple commands like open his eyes, look at you. Give him one direction at a time, and be sure to give him plenty of time to respond.

Oh another thing you can do is tell him the date and time each time you’re in the room, that will help get him get oriented.

Julie
For Sam, we brought in pictures of family and friends, and some of his favorite music so that his surroundings were more familiar when he woke up.

Michelle
When Tom started waking up, they told us to talk to him, even though we didn’t know if he could hear us.

Travis
I felt kinda weird talking to him at first, but then I just started telling him about football and stuff.

Tracy
That’s great, Travis. Megan, does that… does that seem to help?

Megan
It really does, I mean just being here helps me. And I listen to Julie and Carl, and I know there’s hope.

Julie
There is always hope. Can I tell you a little bit about Sam’s story? When we got back to the states from Landstuhl, the doctor said to both of us “do you believe in miracles?” And we said yes… And then he said, “well you may want to pray for one because there’s a chance he’s not going to make it.”

And I said to him, “You don’t know that. Don’t tell me that my son isn’t going to make it. You just do what you can do now to keep my son alive.” 

Carl
I’ve never seen my wife so mad. And the doctor looked at us and said, “if your son makes it, it’s possible that he’ll be hooked up to a breathing machine. You may have to open his eyes for him in the morning, and close them for him at night. That may be best that you can hope for.”

And Julie looked at him and said, “you just do what you need to do.” And two weeks later Sam opened his eyes for the first time. And three weeks later he was taken off the ventilator and has never been on one since.

Julie
And now, 6 months later, he’s home. And yes, things are very different than they were before his injury. And we have had to make a lot of adjustments, and things will never be back to the way they were. We just have a new definition of normal, now.

Tracy
Thanks Carl. Thanks Julie. You know that is so encouraging. You know, Megan, you have to remember that every TBI is different, but the truth is that with the passage of time, you know a lot of patience, a really strong support system, most TBI patients will go on to lead fulfilling lives. It’s… It’s like Julie said, you may have a new definition of normal. I can’t stress enough the importance of holding on to hope,

Michelle
I think it’s great that you stood up for what you believed in, Julie. I’m not sure I have enough strength to do that. I’ve always been the quiet type. I’m not comfortable asking anything from anybody.

Tracy
You know lots of people are uncomfortable with this, Michelle, but as a caregiver, you’ll be called upon to be an advocate for Tom. You know like Julie and Carl did for Sam, you’re an advocate when you speak out on behalf of someone or something that you believe in.

Advocacy begins when you first meet that health care team. You know right away, try to learn as much as you possibly can from them about TBI and the treatment plan for your family member. And find out about the DoD and the VA medical systems you know how to use those services. Once you understand the facts, you’ll be so much better able to communicate with everybody involved.

One thing to remember, you know you’ll be talking with the health care team on a regular basis. There are going to be times when you feel frustrated, just remember, they are doing the best at what is, you know at times, a very difficult situation. You know, it’s fine for you to help the team get to know your loved one. Tell them stories, stories about the person, personality, things like that.

But do keep in mind that diplomacy is critical. It’s really important to your role as a caregiver. You don’t want to be perceived as though you’re trying to tell one of the members of the team how to do their job, because that… that usually doesn’t work out very well. Instead, you want to talk to that person as a concerned family member. You know explain your worries. Explain it, stay calm, speak to them calmly, respect them.

Julie
You know this is really important. As caregivers, we came to know Sam’s treatment plan the best. We knew when something was working well or when something was just wrong. So we had to learn how to share our concerns, and to ask questions about any procedure that we weren’t familiar with.

Megan
I’ll sure try. I’ve just always feel really intimidated around authority figures. I always feel like I’m not as smart as the doctors.

Carl
Well, Megan, there’s just no way that they could know Clayton the way you do, so right now you need to be his voice…about his medical care and other things, too. If you find that you’re having difficulty resolving issues, there are other people that you can talk to, such as a Patient Advocate or an Ombudsman.

Tracy
Exactly right Carl. It’s important that each of you feel comfortable asking questions about their care, about benefits, about anything that you’re not clear on. Okay, why don’t we take a short break to catch our breath, and we’ll pick up again in a moment. Okay.

To the Health Care Team

Becoming an advocate about TBI begins when you first meet the health care team who care for your injured service member/veteran.

Try to learn as much as you can from them about TBI and the treatment plan for your service member/ veteran. Try to learn as much as you can about the DoD and VA medical systems and how to use these services.

This is all part of getting the facts. Understanding the facts will make you communicate better with everyone.

Tips for advocating with health care providers:

  • If you have problems or concerns with the care your service member/veteran is receiving, identify what you think is needed.
  • Be specific.
  • Talk about your service member/veteran’s needs directly to the members of the health care team. Early morning is when doctors make their rounds, visiting patients. This may be the best time to talk to them.
  • Be clear and be firm about what you need.
  • Be persistent and firm, but in a cooperative manner. If you don’t get a response right away, keep asking.
  • If this approach does not seem to work, contact the Ombudsman or Patient Advocate at the service member/veteran’s health care facility.
  • Try not to be confrontational.
  • Come prepared with a list of your questions when attending care conferences. Take notes during meetings or ask a friend or another family member to do this for you.
  • Do not tell someone how to do his or her job. It seldom works. Instead, talk to the person as a concerned family member and explain your worries calmly.
  • Remember, the health care providers are in charge of your loved one’s care. You will be talking with them on a regular basis.
  • Work with the health care providers. Remember, they are well intentioned. They might not know the exact needs of your loved one yet. You are telling them.
  • Give reasons for health care providers to give special care to your family member. Tell them about his or her stories and personality traits. If they get to know your loved one, they may be more alert to his or her care.
  • Often, if you let health care providers get to know you, they will listen to your concerns with better understanding.

To Employers

You may need to advocate on behalf of your service member/veteran with TBI to assure access to employment, transportation, or commercial places.

The Americans with Disabilities Act (ADA) requires that employers, public transportation, and commercial businesses not discriminate against people with disabilities. It requires reasonable changes to be made so that the person can work, ride on public transportation, and/or use commercial places.

If you think your service member/veteran with TBI is being discriminated against, speak up. Get to know your family member’s rights under the ADA and how to advocate on his or her behalf by going to www.ada.gov.

To the Community

After you have some practice as a caregiver to a person with TBI, you will begin to know what life is like with TBI and what families affected by TBI need.

Those who have not lived your experiences may have no idea what you have gone through. You can educate others and raise public awareness of the impact of TBI on individuals and families... through advocacy.

When you are ready, you can educate others by sharing your experiences with them. You may find it helpful to work with others in the local chapter of the Brain Injury Association of America or the Wounded Warrior Project on more organized efforts to raise awareness of TBI.

Working with others will bring you into contact with other people who have also walked in your shoes. It may help bring meaning and a greater purpose to your family’s experience.

Policy Makers

The time may come when you want to broaden your advocacy skills to change the policies or laws of local, state, or federal government.

Systems advocacy uses many of the same skills that you have been learning. Join with others to help pass important laws. Veterans and military service groups as well as TBI-related groups may be interested in advocating for change.

You may find the idea of being an advocate hard or scary. Most family caregivers grow more at ease over time as they practice these skills. Laws such as the Americans with Disabilities Act and the Family and Medical Leave Act were passed due to the advocacy of people just like you.

You will have moments of triumph and moments of setbacks. But if you keep at it, you will find that your own confidence and skills will grow and change you as a person. And, you will have made a difference in the world.

The Brain Injury Resource Center www.headinjury.com/advocacy.htm and the Brain Injury Association of America www.biausa.org/media.htm have tool kits, fact sheets, and other materials to help you develop your TBI advocacy skills. There are groups who can help you speak up for your family member. Veterans service organizations and military service organizations can also advocate on your behalf. See www.disabilityinfo.gov for more information.

Speaking Up for Your Family Member

  1. Identify Yourself - State your name and identify yourself as a caregiver/ constituent.
  2. Be Specific - Clearly describe the issue and state your goals. If you are advocating on behalf of proposed legislation, include the name and number of the relevant bill.
  3. Make it Personal - The best thing you can do as an advocate is to give the issue your individual voice. Use personal examples and speak in your own words.
  4. Be Confident - You may also know more about the issue than the person to whom you are advocating.  That is why it is a good idea to offer yourself as a source of information.
  5. Be Polite - Always work on the basis that your opponents are open to reason and discussion. If you are rude, your message will not be received.
  6. Be Brief - Communication that focuses strongly on one argument is the most effective. Keep it to one issue.  Limit written documents to one page.
  7. Be Timely - Your message is more likely to be considered if it is immediately relevant.
  8. Be Factual - Use facts and statistics. Make sure the information you provide is accurate.
Related Information:
How to Advocate
Glossary
Frequently Asked Questions
"He had visual field deficits right after the injury. They’ve since gotten a little bit better, but he still has visual field deficits. He lost hearing in his right ear, so he can’t hear sometimes when I’m trying to talk to him." -  Aimee W.

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