The conundrum of service providers to the military and veterans families and the military families responsibility in the process can be a touchy subject. I often get lambasted by both sides for my stance on this issue. I find that there seems to be a real problem with the communication between the two entities. Whether the problem is one perceived by one side or the other or one that really exists is not even the issue; the issue is what can we do to fix it so that all parts are working together for good? I have spent the past seven years actively involved in advocacy. I do not take sides in the matters of the military/ VA vs. the families I just know something is seriously wrong and all the focus on whose fault it is has completely hampered progress on behalf of the families. In the end, I just want to see the programs for today’s veteran conformed to their needs and their family’s needs. The disabled veterans and wounded warriors and their families of today NEED the system to change and the system needs to be more effective for their own survival. Working together seems like it should be a win-win situation… right?
As a caregiver, trying to maintain my family, my job and a full time school load I know it can be hard to find enough hours in the day to do everything that needs done… I know it all too well. I have the dirty floors and the never folded laundry to prove it. I know that taking time to sit and fill out a survey or get on the phone with a representative to explain why a program did or did not meet my needs or expectations can seem like a time waster. I really do get it. Now, on the other hand I am beyond frustrated at times by the families not giving any feedback until things are so awful it requires crisis mode to address it. Please hear me; I am not saying that the system is not at fault for red tape and bureaucratic measures that are patently ridiculous. What I am saying is that to work with focus and advocacy groups within the VA and the private sector to create feedback so that programs can be better tailored to the military community is a good way to address the issues before it is a crisis. It is also an area where the families’ participation level is almost nonexistent.
I received an invite to attend a feedback session with regional level VA representatives on the Caregiver support program the VA recently rolled out. I was the only approved or pending approval caregiver in a community of thousands of disabled veterans who showed up? That is not good for the service member. Why? Because we cannot effect change until we participate in the process for change and do so in a way that is constructive and offers solutions to problems. If we do not participate in the programs within the system, then the system will just continue to do damage control and not change to accommodate needs. Systemic change can only be affected with the active participation of the people who know what changes must occur.
It is my opinion that almost every caregiver of a wounded/ disabled vet struggles with the lack of care and support within the system for both our warrior and the caregiver. It’s not a secret that although there is so much attention given to the issue the system is a slow moving beast that is taking a long time to push forward. Yet, quite honestly I have found that once I cut through all the bunny trails and communication error comedies, there are resources available (I’ll admit they are not really for a younger veteran population yet but some have begun). Accessing them is next to impossible at this point but I did discover that the powers-that-be are only partially aware of that. They feel the resource is there and they have done their job in creating policy to match it; what they do not understand is that the current policies discourage people from even trying to use the programs the system offers. I confess, I was pleasantly surprised in how interested they were in my feedback and yes folks they took notes and have followed up with me quite a few times! Do I think it will change the world tomorrow, no I am a realist but, I think they heard me, it’s a beginning.
The reality that the system has failed our combat veterans for generations is real but I must confess I have seen attempts within the military and VA attempting something instead of nothing. Speaking to the professionals who make the wheels turn makes for an enlightening conversation: lack of feedback when asked for it, lack of participation in programs introduced on the parts of those eligible seems to be a common thing.
Why is it the families seem to prefer to point out the lack of relevance in a program or the way it does not address our need on Twitter, Facebook or blogs but don’t sit down for a half an hour with our Family Advocacy Group at VA, attend or attempt to attend a conference or Family Action Symposium, not write the email (in a respectful manner with attempts at solutions) to our providers and tell them what it is we want/ need instead? Why are we not taking the four minutes to answer the questions when Easter Seals calls to ask about the caregiver handbook? I mean I ended up spending 30 minutes on the line with them because I felt the handbook was not even remotely addressing our needs.
Over the past 6 months both VA and the WTB within the Army have rolled out caregiver programs. Neither is perfect, I realize that but they are doing something. How many of you still active duty knew the Warrior Transition Battalion on ten installations now has a caregiver support program? It’s called Tailored Care (TCARE); it’s an incredible initiative that has been utilized in many states for the caregivers of the nation’s aging population. You can read more about it here http://www4.uwm.edu/tcare/ . This is now available to active duty wounded/ ill/ injured caregivers! We should be supporting this program available through Soldier Family Assistance Centers (SFAC) and asking for it if we are receiving SFAC services.
We should also be supporting the program that collects feedback from current veteran and military caregivers so they can now adapt TCARE to better address the needs of young military families. This is a serious issue folks! IF we do not provide the information they need to create a relevant program and then encourage those caregivers to participate in the program offered, we risk having the whole thing stopped. We have to understand that the programs we advocated and cried out for will not be continued if no one uses them. If they do continue they will not address the needs we have since we have not told them what it is we need. I encourage caregivers of wounded/ disabled and injured service members and veterans to please participate The League of Experienced Family Caregivers (LEFC) by registering and completing a short survey at www.familycaregivers.uwm.edu in order to maybe not change what your individual experience was but, to help change the life of the families who will travel this road in the future!
The VA after many issues finally launched their caregiver support. This program allows for benefits in medical and other services as well as a monthly stipend for those who have service members that are in need of regular assistance and oversight. Granted, it has some flaws but, they have started something! I cannot tell you how many caregivers have not even filled out their initial application, which was extremely simple I might add (this may be a first for VA!). Here’s a link to access the simplest government application I have ever seen https://www.1010ez.med.va.gov/sec/vha/1010ez/ .
Caregivers and disabled vets as a community, have worked hard to get the government to hear us in the need for more support, now the ball is in our court and we must follow through and participate in the process that molds the initiative to the community it serves. I can now step off my soap box but I really hope I’ve given you a reason to think on this. I have always felt that the issue with almost all things like this inside the military and in civilian services is the same, we want what we want, when we want it and we want it perfect; that’s a pretty standard human mind set and not wrong but it is unrealistic. The normal progression is we will kick and scream until something is done, they (being whatever grand entity it may be) will initiate something along the lines of what was asked for and then it will need to be shaped to fit the need. That process folks, could take some time but a start, is a start. We need to follow through and be a continuing part of the solution! We have come so far in being heard but we cannot stop now!
About Colleen
Colleen, you always have the most informative articles. Thank you so much for posting this!
Although your article is very informative I still find it a shame that almost 5 years post injury. I am feeling the need to follow a second college degree path in order to fight for the rights of Wounded Warriors. Some WTU’s are doing the jobs they are supposed to be doing but unfortunately there are more than not that are allowing these young men and women to fall threw the cracks. Not just once or twice but, repeatedly. I have been a strong advocate for my spouse from one hospitalization to another sometimes having to take his care issues all the way to D.C. level to no avail only to find that I am having to pass on the information for the small progressions I have made onto other spouses I meet running into similar problems. So, are they trying to make it better yes. To place blame on some of the caregivers for not advocating enough is asinine. It shouldn’t be so bad we feel we have to record medical meetings and things of that nature. When things are that bad we are not failing our loved ones the system is.
I am sorry you have struggled. I don’t think anyone placed “blame on caregivers” as a caregiver myself, that would be a rather foolish position to take. The fact that feedback in the non profit and service programs is so minimal however, speaks for itself. We can argue, be angry and fuel ourselves with it or we can focus on the problem and a solution that is before us; that solution is currently feedback and participation. I have spent over 7 years actively advocating for a severely wounded husband, I did this before there was a system for them but have found there is a responsibility on my part to engage the entities that provide care in a thoughtful and amicable way. My intention is not to “blame” caregivers but impart to them the seriousness of their not being a part of molding the programs to fit the military lifestyle. I am not concentrated on who is wright or wrong but what the issue is at hand and what is necessary to continue the growth of support programs. This is not about how we feel or what has already gone wrong but what we can do to be sure it does not continue.