As a caregiver, you may find yourself in situations where you need to advocate for your service member/veteran with TBI or for yourself.
But you may be saying to yourself,
- “What me? Advocate? I’ve always been the quiet type. I’m not comfortable demanding anything from anybody,” or
- “I don’t have the education or authority to talk back to those who hold positions of authority,” or
- “I’d rather be dead than have to speak in public.”
Advocacy involves basic communication skills:
- listening to what other people have to say, and
- talking about what is important to you.
You can learn to build on the problem-solving skills that you already have to become an advocate.
Generally, there are three types of advocacy:
- Self-advocacy – understanding and effectively communicating your own needs to others
- Individual advocacy – speaking out on behalf of your service member/veteran with TBI
- Systems advocacy – attempting to change government, organization or agency policy, rules, or regulations.
Advocacy is all about:
- knowing what you want in a situation
- getting the facts
- planning your strategy
- being firm and persistent
- maintaining your credibility.
Let’s look at situations where your advocacy skills are needed.
"As caregivers for my brother, my family and I were his voice when he could not speak. This could be anything from hanging signs in his room that reminded nurses and therapists where Ethan was missing his skull, to helping with rehab, to filling out paperwork, to going to JAG officers to discuss Power of Attorney issues. Every day, seven days a week, it became our lives. It’s easy to fall into a groove. Sometimes that groove is comforting, but sometimes it makes you complacent. It’s important to stay on top of the situation and not take things for granted.
As a caregiver, you know your loved one and his or her treatment plan the best. You can easily recognize when something is working well or when something is wrong. Never hesitate to acknowledge improvement or voice a concern, always ask questions about a procedure with which you are unfamiliar, and continually seek out benefits to which your loved one is entitled. Information is not always volunteered to you; if you don’t ask, you might not receive.
Being a caregiver means being an advocate. You’ve already committed yourself to caring for your loved one; it comes naturally that standing up for him or her should be part of that care.”
— Liza B.
How Do I Advocate 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. (See Modules 2 and 4.)
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.
“Basically you have to take the well-being of your loved one into account or you’ll get lost in the shuffle. There’s a bunch of people here in the hospital and they’re injured. If you don’t keep up with your loved one’s therapy, you will get lost in the shuffle because there are so many needs to be taken care of. You have to be your own advocate and the advocate for your loved one, and make sure he’s getting everything he needs.”
— Emily S.
- 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.
“Try to keep a cool head when you are speaking on behalf of yourself or others. Know what you’re talking about. If you don’t, then ask questions and be willing to learn. The more you sound like you’re angry or ‘just complaining,’ the less others will listen. If you are receptive to someone, often he or she is receptive back. This is what maintains a level of respect and credibility.”
— Liza B.
“This is all part of getting the facts. Understanding the facts will make you communicate better with everyone.
If you’re really involved, I think the doctors have more respect, they’re more likely to listen to you. They feel like you’re concerned.
You need to set goals for your husband and his life; it’s really about what you want to accomplish through therapy. So there are times when I don’t think you should be afraid to speak up. Maybe they’re the expert — the physical therapist or the speech therapist — but you should speak up and tell them what your goals are. If they’re not meeting them, then you should not be afraid to tell them or — if it’s not working out — request another therapist. If it’s just not working out or you feel something’s not right, don’t be afraid to ask for another person to work with.”
— Patty H.
How Do I Advocate to Employers and Others?
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 http://www.ada.gov.
How Can I Advocate to the Broader 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 (see Appendix) or the Wounded Warrior Project (see Appendix) 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.
How Can I Advocate to 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.
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 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.
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 (http://www.headinjury.com/advocacy.htm) and the Brain Injury Association of America (http://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.
“I wish I didn’t have to work a real J-O-B full time so that I could really jump up and down and do a lot more than I do. But I’m starting to learn the ins and outs politically, and I’ve started really pulling on my Congressman’s ears and my Senators’ ears. I promised my son, and I promised the two families of his best friends, that, until I can’t do it anymore, I wouldn’t stop advocating on their behalf, because it’s going to be around forever, and I’m not going to be here forever to take care of my son. Somebody is going to have to, and it should be our nation and our system. These kids were not drafted, they volunteered to serve. They deployed, some of them volunteering to go back over and over again, and it’s the least we can do. We are not doing enough, we are not doing enough.
This is my niche. This is where it works. This is where all the pieces fit together, and this is where I can do the most. People say, ‘Well, Adam has been out for a year and a half now, and there’s no reason for you to have to devote so much time to all this.’ I just think to myself, ‘You just don’t get it. It’s not a matter of having to. It’s what needs to be done, and I can do it, and I can do it well. I’m going to do it.’”
— Cyd D.
What Are the Basics of Speaking Up for My 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.
This is a chapter from the Family Caregiver Curriculum, Module 3: Becoming a Family Caregiver for a Service Member/Veteran in TBI.
The Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans provides comprehensive information and resources caregivers need to care and advocate for their injured loved one and to care for themselves in the process. The Guide was developed by the Defense Health Board, the Defense and Veterans Brain Injury Center and the Department of Veterans Affairs.