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Witness Testimony of Anna Frese, Director, Warrior Support Program, Wounded Warrior Project

Chairman Buerkle, Ranking Member Michaud, and Members of the Subcommittee,

Thank you for inviting Wounded Warrior Project to testify today regarding the implementation of the caregiver assistance program.   The program’s success is important to me not only as the Director of Wounded Warrior Project’s (WWP) Family Support Program and liaison to our family caregivers, but also as a long time advocate for my brother Eric whose injuries in Iraq led to his need for round-the-clock care due to severe brain injury.

While caring for severely wounded warriors – sometimes for years and without assistance - many caregivers have left their jobs, exhausted savings, and suffered tremendous strain to their own health in order to provide the very best care for their loved ones. The need to provide caregivers access to mental health services, respite options, health coverage and some modest financial support has been real and pressing.    

Let me acknowledge the critically important role this Committee has played – not only in shaping the caregiver law – but in jump-starting and accelerating a process that in the last weeks began providing long-awaited help to numbers of families.   We are equally grateful for your insistence that VA’s plan complies fully with the law.  

I was honored to appear before this Committee at a hearing in June 2009 on “Meeting the Needs of Family Caregivers of Veterans” and explain how drastically our family’s life was changed by my brother’s injuries and his total-care needs.   My parents are one of the many families who have hoped for years for the establishment of a caregiver-support program.  As the program has been implemented, however, they experienced some real ambivalence. 

My family’s experience is telling.  They did not apply immediately as others had, but delayed because of concerns about one rigid aspect of the VA program.  VA requires home visits every three months to monitor the veteran’s well-being.   In my family’s case, however, a VA-provided speech therapist works with Eric twice weekly in the home.  With those visits and Eric’s seeing his VA primary care physician and three other VA-provided physicians routinely every two to three months, VA is certainly able to confirm his well-being.  My family questioned the need under the circumstances for additional home visits by new staff who don’t know Eric or the family.   Ultimately, they did finally apply but the home-visit issue frankly still rankles.  Their application is still in process.

Overall, I know VA faced challenges in implementing this new program, and that many dedicated staff worked hard to launch it.  The process has gone relatively smoothly for numbers of families, while some have encountered problems.  I have worked with many others who are still in limbo, waiting for applications to be processed and unsure of what comes next. 

But I’m really most concerned about VA’s implementing regulation (which governs the determination and delivery of benefits to caregivers) because it still fails to get some issues right.  As a result, some families will likely be shut out; others will likely not get the level of help the law requires.  What is quite clear is that the rules discouraged many from even applying.  

Let me acknowledge that VA’s implementing rule is a marked improvement over its initial implementation plan.  But unfortunately that regulation needs a lot more work.  Let me illustrate by discussing several of our concerns with VA’s eligibility criteria, inconsistency in how eligibility is determined, and how the stipend is calculated.

Eligibility Criteria & Mental Health

As you know, traumatic brain injury and PTSD are the signature wounds of this war.  Many of the problems I hear about regarding VA’s implementation are from wives and moms of warriors with those invisible wounds.  Typically, because of the severity of one or both of those conditions – these family members feel they can’t leave their warrior alone.  Each case differs.  But often, the warrior lacks full cognition or judgment to be fully aware of danger.  In other instances, a warrior’s behavior may be erratic, may be marked by lack of impulse-control, or might even reflect a level of anxiety such that the individual sleeps with a weapon under his pillow or otherwise leaves family fearful of possible suicide-risk.  In these kinds of instances, a family member typically stays with the veteran for much of the time to ensure the warrior’s safety.  Where those behaviors are due to traumatic brain injury, VA’s eligibility rule appears to cover such circumstances.  But in instances where that same safety risk or other similar problem is due to PTSD, depression or anxiety, it seems much less likely that VA will provide caregiver assistance under its new rules.  

In contrast, the law very clearly addresses circumstances involving the veteran’s safety or related vulnerability. It states that a need for caregiver assistance can be based on a veteran’s “need for supervision or protection.”  That criterion would address the full range of situations I’ve described.   But in the case of a veteran who has PTSD, depression or anxiety, VA has unnecessarily established a separate, much more restrictive rule.  In the case of a veteran with PTSD or other war-related mental health condition, VA’s rule says the veteran must be bedridden, delusional, or virtually suicidal to be eligible for caregiver-assistance.  And unlike a veteran with a physical impairment, who may be eligible if only a few hours of help daily are needed, a veteran with a mental health condition must require “constant supervision.”  This kind of disparity is not only unfair, it is inconsistent with the provisions of the caregiver law which draw no distinction between TBI and PTSD, for example.

Clinical Determinations

A second area of concern is how VA’s eligibility criteria are being applied at medical centers around the country.  WWP recently conducted a survey to understand the experience of families who have applied for assistance under the new caregiver program.  Among the findings, the survey responses suggest that there is variability from facility to facility as to who determines a veteran’s need for caregiver assistance, as well as frequent failure to communicate to caregivers how these eligibility determinations are made.  Asked their understanding of who determines a veteran’s need for caregiver-assistance, more than one in five caregivers expressed the understanding that it was the primary care physician; one in four responded that it was the clinical team; while more than four in ten were unsure. Almost one in five respondents indicated that VA has not explained the process or criteria they will use to determine the veteran’s need for caregiving assistance.  Feedback from caregivers going through the application process suggests that the breakdown in communication is not only occurring between VA and veterans and their caregivers, but also between VA Central Office and the field.

Let me share one example.  For the past several years, a caregiver has provided almost constant care and supervision for her husband who suffers from PTSD, traumatic brain injury, and persistent short-term memory stemming from injuries. The caregiver submitted an application for caregiver assistance when it became available on May 9th and was contacted for the first time by a nurse practitioner on May 20th and advised that the application had been denied.  The nurse, without either reviewing the veteran’s medical records or consulting the veteran’s longstanding care team, “determined” on the basis of the veteran’s compensation and pension examination records that he didn’t need assistance in performing activities of daily living – and thus concluded, accordingly, that he was not eligible.  Among the many errors involved was to overlook the fact eligibility could be based solely on a need for supervision or protection, and that these decisions are to be made by an interdisciplinary team.

The veteran’s occupational therapist was surprised by the decision and lack of dialogue, and drove to the VAMC for an in-person meeting with the nurse practitioner, after which the eligibility decision was ultimately reversed. While this story ended favorably, it offers a stark illustration of problems other families have encountered with vague VA rules on clinical eligibility determinations.  In this instance, but for a very dedicated and well informed occupational therapist and psychiatrist, this certainly could have ended differently, with much greater distress and headache for the caregiver and veteran.

Another survey respondent’s experience highlights the risk of error in what may be a too-brief clinical assessment.  Let me quote:

“My husband was interviewed by his VA physician, but I was not allowed to go in and assist him and help him remember things and help give an accurate picture of his functioning and health.  His physician had only seen him a couple of times, we were told this was the reason he was going in for an interview/assessment.  The assessment was supposed to provide the understanding of my warrior's needs.   Since I was not there, and my warrior does not recall the entire interview, I do not know if the doctor really got a good understanding of the situation.”

Appeals

While the above-cited cases may be outliers, they do raise the question, how can a veteran or caregiver appeal an adverse medical or legal decision.   The implementing regulation is completely silent on this important issue.  Yet it is essential that VA establish systematic recourse for those caregivers and wounded warriors who may be unduly denied benefits. Initial feedback WWP has received from caregivers indicates that they are unaware of where to turn in the event that they disagree with a VA determination.   This is an issue VA must address as more veterans and their caregivers apply for this benefit, particularly given the potential for error.

Stipend Calculations

Another particularly problematic area relates to determining the amount of a stipend VA will provide a family member designated as the primary caregiver.  Since many caregivers can no longer work outside the home and often care for their loved ones on a full-time basis, the stipend was to provide some modest level of financial assistance (tied to the area wage rate of a home health aide). 

The law directs VA to develop a methodology for calculating the amount of a stipend which is to be based on the amount and degree of personal care services the family member provides.   But the scoring methodology VA has developed is deeply flawed, particularly for those whose need for caregiving is based on a need for supervision and protection.  In other words, the methodology does not provide a reliable tool for gauging the caregiving needs of a veteran with traumatic brain injury, PTSD, or depression. 

Specifically, under VA’s criteria, a veteran’s need for caregiver assistance is rated on a scale of 0-4 for each of seven criteria associated with need for assistance with activities of daily living and the need for supervision.  With respect to each criterion (such as need for assistance in performing a particular activity of daily living; having difficulty with planning and organizing; or posing a safety risk), VA clinicians are to assess the degree to which the veteran needs assistance in that particular domain, from having no need for assistance (scored as “0”) to needing total assistance (scored as “4”).  The number of hours of caregiving-assistance a warrior needs is determined based on how high they score on these measures.

A couple illustrations may be helpful.   Take the case of a veteran who sustained a severe traumatic brain injury in an IED blast, but after a lengthy rehabilitation is able to independently perform all activities of daily living and has no serious cognitive deficits.  In this case, the lasting impact of his TBI manifests itself in severe mood swings and sometimes aggressive and violent outbursts. Because he is unable to control these behaviors, even with the assistance of medication, he is unable to work and his wife accompanies him everywhere.  She helps him avoid the problems his behavior may cause, get to his medical appointments and maintain some level of social interaction.  

In another case, a veteran has lost several buddies after multiple tours to Iraq, and suffers now from severe chronic depression.  While he has no physical limitations, he is utterly without energy, has difficulty even getting out of bed, cannot concentrate on tasks, and experiences feelings of hopelessness.  Medications have not alleviated his symptoms, he is largely homebound, and his mother maintains virtually full-time watch to be sure he that he doesn’t harm himself.

Applying VA’s current rating scale, in both cases the veteran might score a “4” based on total inability to self-regulate, perhaps another “4” based on safety risk, and another “4” based on inability to plan or organize.   In each case, though, with no other pertinent areas of needed assistance, the total score would be “12.”  The VA rule, however, states that a veteran with an aggregate score between 1 and 12 is presumed to need only 10 hours/week of caregiver assistance.  The rule makes no allowance for rebutting that presumption. 

These examples are real; let me share the frustration expressed by one of the respondents in our caregivers’ survey as she explained that the scoring system fails to take into account the gravity of her husband’s needs:

“I was told that my husband scored in the low Tier level I, with an 11. This only allows 10 hours [of caregiving] a week, approximately $426 a month. I don't agree with this because my husband needs continuous supervision due to his TBI, PTSD, mental health and also sometimes 2-3 days a week requires bed rest due to physical pain. So 10 hours a week is like about 1.42 hours a day. I have to help him remember to take medications 3 times daily, assist with cooking, driving, medical appointments, just overall supervision for his safety. 10 hours a week is nowhere near the time I spend caring for him.”

These scenarios clearly reflect how important it is that VA revises the current stipend-calculation methodology.  What is clear is that requiring a high aggregate score across multiple criteria makes no sense when a single deficit or impairment may dictate a need for total care.   Does it make any sense, for example, that a veteran who cannot be left alone at all for safety reasons – and has no other limitations – should be deemed to need only about an hour and a half of caregiving help daily? 

It is not unusual that a veteran who has sustained a severe traumatic brain injury, for example, may regain lost function in many domains, have no physical limitations, and may still need to have a loved one close by on a more or less full-time basis because of a single issue – whether it is erratic behavior, severely impaired judgment, or safety.    In the case of a veteran whose condition creates a need for supervision or protection it makes little sense for VA to assume that a need for full-time caregiving can only exist when the veteran has multiple needs.  This system reflects a fundamental underestimation of both traumatic brain injury and mental health conditions like PTSD.

The problems with the stipend actually go deeper.  Even in circumstances where a veteran is deemed to need total assistance, VA sets a cap on the stipend amount– limiting any caregiver’s stipend based on the presumption that 40 hours a week of care would be provided.   VA’s rule does not address the fact that our wounded warriors’ needs rarely conform to a 9 – 5 business day, and makes no provision for those additional hours of likely needed caregiving.

We understand that the intent of this cap is that caregivers shouldn’t have to work unreasonably long hours, and that additional care would be provided by others, such as home health aides. Yet the rule is silent on this.  Can caregivers count on it?  Even if VA were generally to provide such assistance, veterans and caregivers who reside in rural areas are not likely to have access to such sources of care.  Given these realities, we have urged VA to revisit the issue and lift the cap where needed so that the stipend amount more reasonably reflects the hours of caregiving actually provided. 

Program strengths and weaknesses

While WWP believes that VA must make changes to its final regulation (and submitted extensive recommendations on July 5th in response to VA’s Federal Register notice regarding its VA’s interim final rule), we also recognize the progress VA has made over the past several months in launching this multi-faceted program.  

Many caregivers who responded to our survey commented favorably on the ease of filing the initial application and the timeliness with which VA had made contact with caregivers and veterans after the initial submission.  VA did make training accessible to caregivers by providing the option of using a self-guided workbook.  This tool offered an easy approach to clearing a requirement.  But the workbook was simplistic, and for those seeking more specialized instruction it was disappointing.   It would be helpful in the future for VA to ascertain early-on what individual training needs a caregiver-applicant has, and tailor training to meet those needs.

Among those surveyed who had reached the stage of a VA home assessment, many respondents commented that VA employees had been professional, thorough, and appeared to be genuinely invested in the health of both the veteran and the caregiver.   One respondent characterized the home visit as the most positive interaction she has had with VA employees to date.

Yet despite these positive experiences, caregivers tended to have greater frustration with what appears for many to have been regarding the different steps involved in processing their application, who is making decisions, how decisions will be made, and how erroneous decisions can be reviewed and reversed.   We commend VA for the substantial improvements they have made since releasing the initial implementation plan, but also urge the Department to carefully consider the issues we have raised today as well as the much more detailed comments WWP submitted to the Federal Register. VA must still correct serious flaws in its interim regulation in order to ensure that this program fulfills the intent of the Congress and the promise of the law.

In closing, WWP looks forward to working with VA and with this Committee in bridging these gaps.