Wishing a Safe & Thoughtful Fourth

Dear Caregivers, Veterans, Service members and all your families,

We thank you, our service and veteran families this week for permitting this nation to openly celebrate Independence Day on the 4^th of July.  We truly are the Land of the Free because of the brave.  We are grateful for your service and the sacrifices your families make each day.

We are also conscious that any holiday with explosions may be more difficult for the Caregiver, Veteran, and family.  Former traditions may be out of the question for you.  If you can, forge a new tradition this year.  It’s okay to watch a movie instead of going to the local fireworks.  Perhaps the town parade, watched from the sidelines is a better choice than the crowded park, in the dark with explosions and possible perceived threats.  We are very aware that this week may be a challenging one for you, Caregivers.

And, if your family is just fine and can enjoy the day smoothly, we share your joy at that capability.  No matter which side of the Fourth of July observations you fall on, we again say THANK YOU for the service given, the caregiving provided now, and your combined continued efforts for the future.  We support and applaud YOU, the Caregivers, without whom countless service members and veterans would live lesser lives.

Wishing you a safe and thoughtful Fourth of July!

Linda Kreter & the VeteranCaregiver Team

PS: The Pride of Baltimore Tall Ship with flag unfurled shown above

Updates for Caregivers of Wounded Warriors & Veterans

Hi all,

Today was the MOAA/Zeiders Roundtable meeting and the topic was Part II of discussing Caregiver and Family issues for Wounded Warriors and Veterans.  Leadership from the VA and DoD were present to respond to questions on care, caregiving, and benefits.  Below is much of the information gleaned from the meeting, and it’s evident that providing support for Caregivers and families is an ongoing challenge.

This meeting centered on questions raised by the group and specifically the five Caregivers or Veterans present.  Some overall themes are recurring and familiar to you:

• Caregiver support after-hours and on weekends is problematic.  (In other words, if the FRC/RCC/CG Coordinator is not available, who do you call?)  FRC’s are not responsible for after-hours support due to their patient load, and this program receives good reviews with the 25 FRC’s assigned to seriously wounded warriors and veterans. 
•  The onus is on the Caregiver to seek answers if dissatisfied with any aspect of care, which is very difficult when you’re exhausted and lost
•  Peers are still the most trusted group to support other Caregivers (yep, we surely know that!)
•  Clinical Retaliation/Repercussions often occur when Caregiver dissatisfaction is reported – which is often why it’s not reported
•  Caregivers are frequently blocked from participation in the medical appts of their Vet, especially in emergency situations despite the change in law; some discussion centered on how to solve this with special identification, cards, or training, but this problem lingers as many of you have experienced
• Where is the Retirement Ceremony for our medically discharged troops?  Too many casually receive a flag, a pin, and a form letter for their service. This was viewed as a fixable issue and monthly retirement ceremonies were discussed.  Hopefully this will occur soon and retroactively.

Additional questions centered on the complexity of earned benefits and being properly informed at the appropriate time to make good decisions: 

• Fiduciary issues are often confusing due to the State vs Federal sovereign issues (who’s in charge by law) and improved coordination of the various agencies would assist in accurate information about earned benefits.
• Questions regarding Guardian or Incompetency ratings may be resolved by the local Surrogate Court (seek legal assistance on these complexities)
• If your Vet has a 10% or more disability rating and an Honorable Discharge, they are entitled to Vocational Rehab (a VBA Benefit) and the entitlement amount is based on the service-connected needs.
• Volunteer work or some part-time work earning up to $850 annually does not effect your SSDI payments (Social Security payments)
• Reduced work tolerance does not preclude receiving the full subsistence disability payment (contact the VBA for more information) 
• For a Vet needing a Job Coach, this may be requested from Voc Rehab
• The MEB/PEBLO (medical evaluations) are being evaluated for three criteria:  (1) Is the rating fair?, (2) Is it timely?, and (3) Is it Sevice-Member centric. There is a tension here:  the two-part evaluation permits for appeals if there is a disagreement by the Vet, but it does incur additional time; further study is ongoing at DoD.
•   RCC’s (Recovery Care Coordinators) are now assigned to 400 Active Duty warriors.
•  Additional RCC’s will be trained, beginning this Sunday, March 11^th, and there is still poor awareness of RCC assignments.

 A holistic or comprehensive approach is needed to address thorny problems that still occur after 10 years of war, and the bigger picture of setting expectations for warriors and Caregivers to understand their benefits, financial options, educational options, employability and more is an ongoing task for those training RCC’s.  Caregiver involvement is critical and recognized by this group, while improvements in the TAP transition program is expected to improve knowledge about transition.

We continue to seek improvements in communication, parity in care across the country at medical centers, and ongoing discussions of the reality of Caregiving.  We did not hear discussion of Comprehensive Care Plans or Comprehensive Transition Plans today, but certainly you see that much was under discussion today. Please let us know your priorities and needs, and we’ll continue to add your voices to the future meetings and collaborative efforts to improve service family quality of life.

Kind regards,

Linda 

Leadership: Do They Know?

Good morning,

Here’s a question for you that we have been asked no less than 11 times in the last two weeks:  “Do you feel the leadership (DoD, VA, service branches, Caregiver Coordinators) truly understand what Caregivers experience?”

This is a volatile question, to which I give no answer, but listen for the occasion that elicited the comment.  There is great frustration by Caregivers that we hear often, and I think it boils down to this:  Leadership is shielded from the family caregiver experience.  We believe there are good leaders who care, but there are many surrounding them who keep controversy from their bosses.  Is this good?  In our opinion, no.  For without real observed examples, the leader is not leading with the right information.  And, can you fix something if you don’t know it is happening?  No.

Daily living essentials matter.  For a month recently, there was no hot water at one of the residence barracks at Walter Reed.  For a month.  Despite many mentions of this problem at group meetings, it wasn’t until the problem was quietly researched that progress was made.  The contractor, subcontractor, and sub-subcontractor were contacted to ensure the event was reported appropriately to maintenance and afterward, the resultant mixing valve issue was solved.  See, once they knew, proper process was followed and problem resolved. Hot water is pretty necessary for health and hygiene, wouldn’t you say?

Invisible Injuries are still invisible.  A caregiver at a recent VA appointment was asked “Why aren’t you looking for a job?  He’s doing so much better,”.  She then explained the severe lack of short term memory for her husband that nearly resulted in a home fire catastrophe the previous week.  Better yes, but good enough to leave unattended and take on a job?  No.  The doctor doesn’t live with your veteran 24/7 – you do.  See that the record reflects the reality of your experience.

We suggest this to you.  Respectfully note and bring real-life caregiving challenges to your appointments and town hall meetings.  Unless leadership know about them, they cannot research situations or make changes.  And, if they are not amenable, or there are repercussions, there is help.  We must collectively raise the visibility of caregiver experiences to bring about positive change.  Share your Caregiver challenges (and wins) in order to make it real.  Together, let’s help leadership to lead!

Linda