VA Caregiver Program Changes & Awareness Recommendations

Points of new awareness about the VA Caregiver Program:

Please be certain to research beyond private, secret, and open Caregiver Communities on social media.  Rumors can spread like wildfire, even when the information is not accurate.  Rising anxiety levels within the family rarely does anyone good.  Find out the facts first.  Note that VeteranCaregiver goes directly to the VA Central Office with questions raised on specific processes, caregiver law, and changes.  The answers are not always clear and often raise more questions -- but these are direct responses from Caregiver Program Leadership.  

Something one Caregiver Support Coordinator tells you does not always confirm national guidance.  Each VISN has the flexibility to implement the program (*within the parameters of the Caregiver law*) differently.  We already posted the official response to new phrases used in 2016 regarding “short-term recovery program”, “graduation”, and the significant reductions in Tier 3 caregiving.  According to the VA, there are no quotas, no changes in eligibility requirements, and no changes in ADL measurement. Note possible discrepancies to the law, with date, person, VAMC, requests for clarification in writing and attach a Read Receipt to the short message.

ADL’s still form the basis for eligibility, as do safety and protection elements.  Here is an excellent example of the detail you may need to explain about only a single ADL:  bathing independently.  See below and other questions and responses may be found on www.VeteranCaregiver.com’s website in the “Ask Questions Here” section on the Homepage:

I’M CONFUSED ABOUT ADL’S. JUST USING BATHING AS AN EXAMPLE, MY WW HAS DIZZINESS, BALANCE, LIMITED RANGE OF MOTION THROUGH BACK AND UPPER BODY WITH CHRONIC PAIN. HE CANNOT WASH BY HIMSELF, YET THE CGC SAYS SINCE HE SITS IN THE SHOWER BY HIMSELF, HE CAN BATHE WITHOUT HELP. NOT TRUE! HE CANNOT WASH HIS HAIR SINCE HE CANNOT RAISE HIS ARMS. HE CANNOT WASH HIS BACK, BUTT, OR BACKS OF LEGS SINCE HE FALLS OFF STOOL IF HE RAISES ONE LEG TO REACH THE OTHER. HOW IS THIS NOT NEEDING ASSISTANCE?

This is a great example of when detail explains what the needs are. If you haven’t already, write all this down, since if the questions are not asked about detail, then assumptions are made. What you describe fits the definition of needing assistance with bathing, but if the right questions aren’t asked, or the vet glosses over his not wanting to say personal details, there is a chance that this will be overlooked. Write this up and ask that the evaluator/RN/PCM add it to his medical records.

If you need to appeal a VA decision, you will need to know the precise reasons to address points specifically in your appeals documentation.  Appeal justification is best explained using language similar to the clinical language provided to you as the reasons for the caregiver program change in status.  Specific points, evidence, and documentation is best delivered in a succinct document, and excess emotion removed. Abusive language is not advised even if you feel it is warranted.

Appeals timing of document submission will vary from VAMC to VAMC, but will be shared with you upon request.  Also ask specifically for "confirmation of the receipt of the documents for appeal", and again request "confirmation that the Appeals Panel reviewed the materials prior to their decision" in writing.  Note the timing of decision letters and the receipt of documents.

There are separate VA non-medical databases that contain feedback on the caregiver and veteran.  This information may not be available to those reviewing appeals, and request copies of both the Patient Advocate Tracking System (PATS) notes, and any Caregiver Application Tracking System (CATS) notes.  (This may mean a FOIA request.) The noted information may be used for decisions and unless you’ve verified the information is correct, or that information is missing, your status may be adversely affected.  It appears that access to this information varies per VAMC.

The specific reasons for Caregiver Program reduction or termination" will be explained to you in a transparent, understandable manner" per VACO.  It’s best to receive this in writing, and we have seen only a single VA do this in the status change letter.  You may request to record a Skype call if you’re far from the VA and a meeting is offered, and you may request to tape a meeting for an in-person meeting.  We recommend responses in writing so you can review and compare to your veteran’s needs, the responses used for the decision, if records were changed or missing, and to determine your response.

Trust, but verify information.  It is very possible to receive a VA response that is accurate, but literal.  If you don’t receive direct answers to questions, rephrase them politely in an email and request clarification of the response.  It should not be necessary when direct responses and transparency would be more efficient, but ... Make use of an outside advocate (AW2, Legion, AMVETS, etc.) when in doubt.

Please stay informed, use trusted resources and advocates, and know how absolutely vital caregivers are to the care of our nation’s wounded, ill, and injured.  We will continue to post direct VACO Caregiver Program responses to your questions for your increased awareness.

Linda Kreter & the VeteranCaregiver Team

The Cascade Potential of Suicide

*Note: all names and identifiers have been changed, but this story is true.

His name was Michael.  He was in the wrong place at the wrong time when the shooter at Ft. Hood created mayhem, horror, and fear.  His friends knew that the incident, deemed “workplace violence” was never far from his mind, but they thought he was okay.  He was not.  He committed suicide this month.  This did not make the newspapers except in a small obituary, but it sent a resounding echo of despair to his circle of friends.

One friend of his, Jim, reacted very strongly to the news of the suicide.  He became very angry.  He became physically violent toward his wife.  He vehemently threatened systematic destruction of all of his VA doctors (while in the halls of his local VA), and he expressed suicidal intentions.   In each instance, his local VA suicide prevention coordinator was unable to provide help because Jim was not “actively suicidal”.  The Caregiver spoke twice with  the suicide prevention psychologist who said he could not do anything without an in-the-moment attempt.  When saying it makes no sense not to throw a float to a drowning man, his wife said this, “it seems that until you are underwater, going down for the last time, that no one can actually do anything”.

One week later, after two visits to the local ER, (while his wife made careful safety contingency plans for herself), the situation worsened.  Jim took a household knife into the bathroom with him  and attempted suicide. (All firearms had long been removed from the household). When his wife broke into the bathroom, he threatened her with the knife and said he would first kill her, then himself.  Through a near-miracle, she was able to get him to the local ER and began anew to get him VA psychiatric care.  Many calls (some with outside assistance and advocacy) were made to the VA Crisis Line.  Crisis Line recommendations to obtain local VA help went to unanswered voicemail... 

With great compassion but also frustration, it seemed that most everyone’s hands were tied in some way or another, and the hours crept by.  Finally the VA said it would admit Jim, but his wife would have to drive him nearly two hours to the facility – which under the circumstances was potentially too dangerous.  Eventually into the wee hours, the private hospital moved him to a nearby psychiatric facility since no safe transport could be arranged to the VA.  He remains there today, awaiting a private PTSD program.

There are gaps in any system.  However, the current issue is the lack of follow-up by the local VA including his case manager, the suicide prevention coordinator, and the social work office.  The Caregiver is exhausted, emotionally spent, and has no Caregiver Support Coordinator despite being in the National Caregiver Program. They have communicated their situation to leadership at VA for two years.  These at-risk veterans and their families need consistent follow-up after a suicide attempt, and the care gaps back-filled.  There are policies in place to aid in care and recovery.  But – it doesn’t always happen as written.

Please be aware of your fellow veterans and families.  Be aware that the suicide of a friend may create abrupt behavioral changes in your veteran, and in the worst case, lead to another suicide.  Know that long-term frustrations can suddenly spill over and create volatile situations.  And, always have the number of the Crisis Line, an advocate, and a personal support person if this happens to you.  Friends and social media can spread word of suicide in seconds, and information may be wrong, yet the actions some take can be irreversible.

When in doubt, please reach out! And, as caregivers, remember this:  the life you save may be your own.

Blessings and care,

Linda Kreter & the VeteranCaregiver Team