“I would say be very close with your case worker going through this. I thought the case workers were invaluable in making sure that you have everything you should have and that you’re aware of everything you should be aware of as a caregiver…. From a medical standpoint, the doctors are going to keep you informed. But the case worker goes outside the whole medical thing. You know, ‘Let me make sure you have a place to stay. Let me make sure you have food, that you’re getting the per diem that you’re supposed to be getting, or that the paperwork for Jason is where it’s supposed to be at.’”
- Pam E.
“The nurse case manager’s job is to take care of the nursing aspect of care. The TBI case manager takes care of the TBI and all those appointments. My husband has a sergeant that he reports to. So, he’s got a couple of different people he sees that make his appointments for him regarding different aspects of the Army and the hospital. And there’s Linda with the Family Readiness Group. She just kind of knows everything. She can help with anything.”
- Emily S.
“The most important thing I think, in the beginning, is having a case manager that you’re definitely seeing eye-to-eye with, because if you and your case manager aren’t on the same page and aren’t working together and there’s conflict, it’s just going to get worse. So you definitely need to make sure that the team that you have is the team that’s going to work for you. We’ve learned that the hard way.”
- Sandy M.
“When my husband was injured, I was notified by the battalion commander and a chaplain. Then a Marine was assigned the job of totally assisting us. He handled everything from terminating our lease on the house in Okinawa, to selling our vehicles, returning our library books, and making arrangements to meet my husband in the hospital. Once I was in Bethesda, he handled everything. The four VA hospitals with polytrauma units have Marine liaisons. They are there to provide information and support and assistance and handle all the pay issues and benefits, all those things.
We also have a VA and Department of Defense polytrauma rehab nurse liaison. It is her function to help us transition into the VA system, but she was far more than that and helpful before we were at that point.”
- Anna E.
“If I had to name the one person that I would pick up the phone and call about any question — it was our care coordinator in Buford. She works out of the Naval Hospital. She’s the one I called about everything,--when they were sending me bills and they shouldn’t have been sending me bills, when Mike needed equipment — I called her. When I was given the run around, I called her, and I was like, ‘Am I nuts? Am I going nuts? Is this how things ought to be?’ And she would say, ‘No, you’re not going nuts.’ She would intercede for me, and I felt really confident that she would take care of the stuff with TRICARE and that she would find a way to make things happen. She was the person I called to say, ‘I need help, and I’m lost.’”
- Meredith H.
“I finally got a Recovery Coordinator. She is an angel. That lady got all the different case managers and put them all together. That works. That works.”
- Nellie B.
“The Wounded Warrior regiment has certainly been great. I’ve been able to go to the Wounded Warrior regiment office and ask them questions and take my MEB/PEB checklist and my applications and make sure that I have everything that I need and I’m not missing anything. They’ve been a great sounding board for me, walking me through that process, because I did a lot of the retirement stuff. I attended the D-TAP classes for Tim. We did the TAP class on DVD, and they helped me get those tapes. That was good.”
- Shannon M.
“I think one thing that I have learned is that you definitely have to speak up. If your needs aren’t being met, if your spouse’s needs aren’t being met, or your children’s needs aren’t being met, you ask somebody. If they don’t have an answer, more than likely they’ll find the answer for you. They’ll direct you in the right direction. And I’ve been pretty successful in that department. But you definitely have to speak up. You can’t sit back and let things happen to you.”
- Sandy M.
“At his team meeting between the VA and the therapy agency — there were about 20 people there. He has a case worker with the VA, from the VHA side, the hospital administration. He has a case worker with the Benefits Administration. He’s got a nurse case worker. Again, that’s with the VA. He’s got a case worker with the therapy agency, and he has the AW-2 person, and then the Wounded Warriors are assigning somebody to him too. Then he’s got an advocate; the VA has assigned an advocate to him as well, and he comes to the meetings.
These are people we can go to. We ran out of medication and I was trying to get a hold of somebody and I couldn’t. I can call any one of these people and they’ll track down whoever needs to be involved.”
- Pam E.
SUPPORT FOR WOUNDED SERVICE MEMBERS AND THEIR FAMILIES
“The Army person from the AW2… oh my gosh, she’s great. She’s just wonderful. Now that she’s on board, I get e-mails from her. She does e-mails almost daily about job fairs. But she called me and said, ‘Hey, Congress just passed this thing and Jason should be able to get some kind of compensation from the Army, because they passed something about retirement or whatever.’ If it wasn’t for her, I wouldn’t even have realized what was on his DD-214. They put him down as honorable discharge instead of medical retirement. We are fixing that now.”
- Pam E.
“I have a phenomenal case manager with TRICARE. I go to her whenever there have been issues with one of the hospitals, or when there have been issues with some of the specialty doctors and paying, or the equipment. Tim has a biomedical device that goes around his leg that helps with the foot drop, and she was great at making sure that we were set up with funding so that he could get that equipment. So I go to her for a lot of issues.”
- Shannon M.
“One thing that’s pretty important: A National Guard or Reservist needs what’s called an LOD, a line of duty document, for each service-connected malady. In the case of my husband’s teeth, they did one on each tooth.
We needed that, and they really didn’t want to do it. It’s just that we made them do it —we’ve been around the block a few times. We have needed the LODs. He has had some dental problems and the VA has taken care of him, but he had to document that a particular tooth problem that he was having was service-connected.
He probably has 27 LODs, which is absurd, and most people wouldn’t have anywhere near that. I have probably five or six LODs on teeth. I have one for his broken nose. I have one for the cognitive deficit, one for TBI, one for his back, his neck, his this, his that. Anything that he was being treated for at Walter Reed that was a result of the blast injury, we have a line of duty investigation document on, and that’s what the VA goes on for treatment.”
- Caroline M.
“Chaplain Thames was sent with me to travel to Germany to meet my husband, and then to Bethesda, and then he returned to Okinawa. He traveled with me so that I wouldn’t be traveling alone.”
- Anna E.
“That’s probably been one of the hardest aspects of it, because things have changed, especially with the 100 percent rating he got from the Army. How is that going to affect his job prospects? He’s probably going to have a really hard time with a full-time job, period. That will probably change for me, too. I might have to get back out there in the workforce and help provide for the family. I’ve just got to figure out what I want to do.”
- Aimee W.
“We’re not going to go to vocational rehab until we absolutely have to, because he just sees that as a real negative. So we’re going with his GI Bill to take some college classes. In the State of Florida, Purple Heart pays your schooling 100 percent on top of your GI bill. We’re going with that for right now, just kind of testing the waters to see what’s going to happen.”
- Cyd D.
“We had to do some home modifications. Because of the brain injury, we weren’t sure what we needed to do permanently. We did hold off on a lot of stuff because we weren’t sure how far he was going to recover. Only as recently as last month did we even expand the opening in the bathroom door on the floor that he lives on. We still don’t have ramps.
We’ve just done minor modifications at this point. My thought process was that I didn’t want to use his money to do modifications until we were sure about his recovery. I didn’t know if eventually he may get to be somewhat independent and we build a place that he’s going to be able to live in or if he’s going to be able to go out on his own. We didn’t know because they said, ‘We can’t tell you what his prognosis is.’ We’re just hanging on to that whole allowance that they gave us because our home was already at least good enough for him for the level of recovery he’s at. He’s been doing all right.”
- Pam E.
DISABILITY EVALUATION SYSTEMS
“To get through all the paperwork from his PEB and retirement, I have a folder and an envelope that I taped checklists to. I have one folder with the checklist and then the envelope with another checklist. The folder has the general checklist that the military provided me on the number of steps that had to be done toward retirement. The manila envelope has all of the applications filled out that I store in there until they’re ready to turn in. Then the checklist on the manila folder has the application names and the dates that have to be checked. That’s how I keep on top of what needs to be turned in and when.”
- Shannon M.
“The spouse or caregiver has to be an informed advocate. Ask questions, demand answers, because the person with TBI doesn’t understand.
The caregiver needs to take the lead in accessing resources to protect the interest of the soldier as you move through the MEB/PEB process and the VA disability rating application. Keep copies of the medical records. It is extremely important to obtain medical records as you move through treatment. Don’t wait until you need the records to request them…it can take forever to get them. Keep a list of medical issues and disabilities. The Disabled American Veterans (DAV) has counselors who help prepare for the MEB and any appeal. Contact the DAV before the PEB/MEB process.”
- Caroline M.
“Oh, going through the MEB. What a joy. I definitely would say read every single piece of paper you’re given. Don’t leave anything out, even if you think it’s the most minute thing to write down on the paperwork. Be thorough when you’re filling out your initial stuff. When they give you the paperwork back, read through it. Take every minute that they allow you to read through it.
Voice your discrepancies. If you don’t agree with it, tell them you don’t agree with it. If they send it back to you and they say we can’t change it, still say no, I still don’t agree with it, and take your time.
Seek the advice of JAG and the DAV when you can. Don’t ever feel like ‘It’s me against the MEB’; there are so many people out there to help. There are so many organizations that will sit down with you and they’ll read through your paperwork. It’s all medical jargon, and that is the most frustrating thing of it all, that it’s all medical terms. It’s hard for the general person to be able to understand all of that.
So definitely go to the DAV, go to JAG, go to the VA. Go to a doctor who is not involved in the process, because there’s help out there. You have to be proactive. You can’t let it happen to you. You can’t let them dictate what’s going to happen. You need to be the dictator.”
- Sandy M.
“I think the most challenging and stressful phase for me and for many other families that I have heard of, is that phase when you’re trying to decide whether medical discharge is right at this time or whether you think you want to push for continued active duty, a permanent limited duty phase, or what-have-you. It still seems to me that it’s unclear, and
there’s nobody who really sits down with a family at that point and goes through the calculations of the pay and benefits. Tim and I have gone through the pilot program, he received his findings, and we know his disability rate with the military. We know his disability rate with the VA. The DoD rate is pretty obvious. We know how that’s going to be calculated. But because of his special monthly compensation codes, we’re having huge trouble finding somebody who can really explain how that’s calculated out. Then we can plan for this change in salary and what we need to do to insure that we can pay our mortgage or know that we’re going to be fine. I think that’s probably the greatest stress out of all of this. After you’ve gone through all the traumatic medical stuff, after you’ve gone through the recovery and the heartache and all the other physical and emotional challenges--the financial stress on a family still needs to be resolved.”
- Shannon M.
“We have to thank those organizations out there that help us continue being where we are. If it wasn’t for a couple of those organizations, those nonprofit organizations out there, I don’t know what the families would do, I really don’t.”
- Nellie B.
This is an excerpt from Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans, Module 4: Navigating Services and Benefits. The guide 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 produced in collaboration with The Defense Health Board, The Defense and Veterans Brain Injury Center, and The Henry M. Jackson Foundation for the Advancement of Military Medicine. www.tbi.cemmlibrary.org.