Debbie Schulz, Friendswood, TX
Chairman Buerkle, Ranking Member Michaud, and Members of the Subcommittee,
Thank you for allowing me to share with you my experience with VA’s implementation of the comprehensive caregivers assistance program. Thank you too for your leadership in pressing VA to implement this important law so that congressional intent is fully realized. Much progress has at last been made, though—based on my experience and what I have heard from other caregivers whom I’ve met over the years since my son’s injury -- I believe VA will need to go further.
As a caregiver for my son, Steven K. Schulz, USMC ret., I cannot adequately express how important this program will be to his on-going recovery and continued well-being. If fully and properly implemented, the law will assure that he will be able to stay in his home with age-appropriate supports and his family will be able to continue to provide the care that Steven needs on a daily basis. Because of Steven’s severe brain injury, incurred in 2005 while serving in Iraq, I have not returned to my employment as a high school teacher. While this has allowed Steven the benefits of being cared for at home rather than in a long-term care facility, it has been a financial hardship to our family, and has diminished my retirement benefits. The implementation of the caregiver assistance program has brought both joys and concerns. The joys are that the program is up and running, the application process was easy and well advertised, and each VA has a point of contact for caregivers. As one mom of a veteran 8 years post injury said, “Out of all the applications, assessments, programs we have been involved with in the past 8 years, this was the easiest, least stressful for us to date.” I have several concerns, though. Given that many caregivers have left the workforce, I’m particularly concerned about VA’s implementation of the stipend. VA’s methodology to determine the number of hours of caregiver assistance required for purposes of a monthly stipend payment is very flawed. VA has also set an artificial cap that limits a stipend to a maximum of 40 hours per week. This is concerning for the many caregivers who provide nearly round-the-clock care. I also see evidence of disparity between VA facilities and how provisions for CHAMPVA services are administered. Like many other caregivers, I’ve also been concerned about the limited access to information on how clinical decisions regarding the program are made as well as a dearth of information on how to appeal any determination under the program – whether it is a question of basic eligibility or a VA determination that a veteran only needs a very limited number of hours of caregiving per week.
Life Before and After Injury
But first I want to share with you some background information about my son and his injuries. My son, Steven K Schulz, was injured April 19, 2005 in Fallujah, Iraq, when an improvised explosive device went off outside the Humvee in which he was riding. He was 20 years old, unmarried, and my oldest son. The resulting traumatic brain injury was severe and life-altering. We have been on a bumpy road of recovery for the last 6 plus years. I say “we,” because it has been a family effort to assure that Steven has gotten the supports and treatment he needed. I hope that explaining the gravity of his injuries will illustrate how critical the proper implementation of this important law is, not just for Steven Schulz but for many, many other veterans and their families whose lives have been turned upside down after sustaining severe injuries.
Steven’s brain injury has left him with many physical and cognitive deficits. He has profound weakness on his left side, with no functional use of his left arm. He walks slowly and with assistance of a service dog, cane, or person. He cannot sustain walking longer than three blocks, over lawns or uneven terrain, if multiple flights of stairs are encountered, or in very busy environments. He is blind in his right eye due to shrapnel, and his brain does not perceive the left field of vision (hemionopsia). This leaves him with a very narrow visual field and monovision. Steven uses a wheelchair for long distances and when he is not wearing his adaptive equipment at home, but because of the profound weakness of his left side, moving in a wheelchair is very slow and inefficient, and assistance is required. Because of his vision deficits, he is not a candidate for a motorized wheelchair.
Steven’s thinking is slower, his thought process takes longer and initiating and sustaining conversation or ideas is difficult. Due to his frontal lobe damage, his impulse control, although much improved since immediately after injury, often causes him to say aloud any thoughts or ideas prior to filtering, even if the thought is mean, insensitive, or vulgar. His affect is often very flat and without expression, and he has difficulty interpreting social cues. His speech is difficult to understand as he talks rapidly and does not enunciate very well. Steven’s attention span is very short. Although it has improved over the years, he still cannot attend to a 30-minute television show. Steven can read, but no longer enjoys it. He has some memory problems. The ability to initiate activities was severely altered. Because of this initiation problem, Steven has to be guided through most all activities of daily life. Without the ability to think, “what do I do next,” being left alone is very problematic. Steven does not feel comfortable being left alone more than 30 minutes
What about the future? Since very early in his rehabilitation, Steven has told his therapist that he wants the normal things, “a wife, children, and to drive a car.” He now accepts that he will likely never drive a car because of his visual deficits, but he is still looking for that wife. We have seen marked improvements from the early injury, but we are realistic about the dream of returning to his pre-injury self.
How has my life changed? Prior to his injury on April 19, 2005, I worked as a special education teacher at Friendswood High School. Before I started teaching, I had worked as a psychiatric social worker for 9 years for the state of Texas. Both of these careers prepared me for some of the realities of traumatic brain injury, but not the realities of becoming a caregiver. My husband, 51 and I, 49, were preparing to become “empty nesters,” were sprucing up our house, and generally doing well when the blast occurred. TBI affects the whole family for a very long time, most likely a lifetime. My daughter, Elaine, was 18 years old, in her first year of college, and my youngest son, Clay, was 15 years old, a sophomore in high school when that bomb blasted. This type of injury changes a family. They went from typical teens to mature beyond-their-years young adults. I became Steven’s primary caregiver, advocate, life skills coach, chauffer, secretary, bookkeeper, teacher, drill instructor, medical assistant, physical/occupational/speech therapist and his mom. That blast changed the fabric of our family.
My Experience with the Caregiver Assistance Implementation
I applied for the Caregiver Program on May 9th, the first day it was available. I was called by Steven’s social worker at the Houston VA and reminded that the program was accepting applications, and had seen reminders on many social network sites, and in some veteran related media. Getting the application on-line was easy and equally easy to complete. I faxed the application to make sure it arrived promptly. As I was filling out the application I knew that my health insurance was being terminated, but I didn’t have a firm date. When I asked the social worker if I should indicate that I have insurance or instead explain that it was being terminated. I was instructed that I could not apply for CHAMPVA unless I was without insurance. The CHAMPVA document I received clearly stated that you are not eligible for CHAMPVA if you have access to insurance through COBRA. That alarmed me since I could theoretically obtain COBRA coverage, but the astronomical cost would make eating unaffordable.
Within several days of applying for the caregiver program, I received a phone call saying the application had been received and the next step was to complete a training program, and then a home visit. The only training available to me at that time was a home-based workbook, which was fine with me, because frankly, after care giving for 6 years the thought of sitting for 2 days hearing things I had already been taught was not appealing. The workbook was fine, but again a redundancy and somewhat insulting to have to complete. I would strongly suggest that future applicants be “grandfathered” as trained if they have been caregivers for several years. Let me acknowledge, though, that one of my fellow caregivers (7 years post-injury) went to the classroom training and very much enjoyed meeting fellow caregivers.
On May 15, I received notice that my health insurance had been terminated effective April 30, 2011. I notified the social worker and she had me fax the termination letter to her and she forwarded it to the application center. The disturbing implication here is that I was led to believe that I was not eligible for CHAMPVA until I had a lapse in coverage.
The most disturbing aspect of the whole process was the home visit. The RN sent to assess our home did not even know who the veteran was. When I introduced myself to the RN and told him Steven was not yet home as he had gone out with his brother and would be back shortly, the RN asked, “Steven is your caregiver?” The RN clearly had not read any medical records pertaining to this home visit. Later in the interview, he went on to lecture me about how I must take care of myself, but offered no solutions aside from asking my family to “relieve me of my burden.” The home assessment made sure we had smoke detectors, that I knew about infection control, that I knew about nutrition and meal preparation, and that I had been instructed in the proper care of a catheter. Steven had not had a catheter since his earliest hospitalization, and never as an outpatient. This kind of inept assessing did not inspire confidence. My understanding was that the home visit was to assess both veteran and caregiver for needs. That was certainly not accomplished during that visit.
About a week later, I received verbal confirmation that I was approved for the program with no other details available at that time. This lack of detail was upsetting, because I had no way of knowing how the determination had been made, if it was accurate, or if I had recourse to appeal the decision if it was adverse in any way. I certainly did not know who had made the decision. I was hopeful that the evaluation and determinations had been made by Steven’s treatment team who has worked with him over the last 6 years, as they have a fairly clear idea of his needs. July 1st I received my CHAMPVA card and booklet. July 5th I received my first stipend check. As of this writing I have not received written notice of how many hours were deemed appropriate. Guessing by the stipend amount, Steven was in the upper tier, but the fact that I have to guess, when others have been provided that information, illustrates the lack of consistent information provided from one VA medical center to another.
When Steven first came home from the hospital, he needed 24/7 care. Not because he was on a ventilator, had a feeding tube, or was unable to move or speak, but because his thinking was so confused that he forgot his leg was not working, or he could not figure out what to do. He needed assistance to use the bathroom every two hours around the clock for the first year. I share this with you because setting an artificial cap of 40 hours per week assumes that the caregiver actually stops providing needed care because 40 hours has been reached. Luckily for us, we trained Steven’s bladder and brain to “sleep through the night” again. But that is just one example of why, the VA must address that often times 40 hours is not enough for the veteran. For veterans who do have ventilators, feeding tubes, or cannot move or speak, they still must be attended to throughout the night. Their issues will not learn to sleep through the night. For those caregivers, I ask that their struggle be properly quantified by the VA and the caregiver assistance program.
Social media has been a wonderful avenue for veterans and caregivers to connect with others and alleviate their social isolation and share information about benefits, programs, and ways to navigate the systems of DOD/VA/Tricare. Because of all this sharing, the disparities between how programs are administered often become very apparent. VA programs have been rife with regional disparities of how services are delivered. I would like to say that this new program is free of such disparities but that is not the case. Already, within our VISN I can report one caregiver received a full documentation as to the stipend she would receive; her secondary caregivers were interviewed and given ID cards. I have not gotten such documentation and the secondary caregiver I put on the application has not had any VA notification at all. These are small items, but within a 200 mile radius, vastly different experiences. The biggest disparities seem to be in how veterans are rated to quantify how many hours will be assigned to a caregiver. One example, a veteran with the same injury as Steven, a severe TBI, but he made a better physical recovery, can walk further with a cane, has better balance, can drive locally, but has PTSD issues on top of TBI cognitive issues. He was allowed 10 hours of caregiving a week. How can 2 hours a day Monday thru Friday be enough time for this veteran? Never mind the week-end when oversight and care is still needed. For veterans with “safety and supervision needs” 10 hours cannot be appropriate.
With finances an ongoing struggle, I’m of course very happy and relieved to be receiving a stipend. It will make an enormous difference. But I am concerned about other caregivers. The VA’s methodology for determining roughly how much care a veteran needs is crude at best. In our case, it resulted in “scoring” Steven’s needs at a relatively high level. But, I believe, that this is because he needs assistance with respect to both physical limitations as well as cognitive and behavioral challenges. Since VA’s scoring methodology calls for aggregating each different impairment, his “score” would generally be higher than for another veteran with TBI who is limited “only” in a few cognitive and behavioral domains. The fallacy in this methodology is that a veteran with TBI whose extreme lack of judgment, for example, makes him a safety-risk is not simply a safety-risk for ten hours a week. Caregiver-friends of mine in this situation must be almost constantly at the veteran’s side. Yet the way in which the VA regulation calls for determining the extent of needed-caregiving, for purposes of determining the amount of the caregiver stipend, fails to recognize that the potentially overwhelming nature of a traumatic brain injury, for example, may require full-time caregiving whether or not it manifests itself in many different kinds of limitation or impairment.
One dear friend, Cheryl Lynch, founder of American Veteran’s with Brain Injuries, and a mother of a veteran with TBI proposes a simple, yet brilliant way of solving the issues of stipend calculations: differentiate between “some of the time,” “most of the time” and “all of the time.” Apply these terms to the veteran, do they need help/oversight some of the time, most of the time, or all of the time? Develop a check list around the ADL’s (activities of daily living) and IADL’s (independent activities of daily living), and answer the question, “does the veteran need assistance in this area some of the time, most of the times, or all of the time.” “Some of the time” would be someone who can get dressed and do many of his tasks on his own, yet needs to have 'someone' available for oversight and in case things go wrong. “Most of the time” would be someone like Steven who without oversight cannot function day to day. “All of the time” would be someone who without the help of others cannot function hour to hour. I also think that there is room to have spaces in between so the veteran would be moved to the higher rating because of specifics, like seizures, suicide risks, safety, etc. A rating like this would also eliminate the artificial setting of an hourly rate. The need for flexibility in ratings is crucial, because veterans with TBI, PTSD, or mental health issues may have flare-ups in their conditions resulting in decreased abilities. Right now there does not seem to be consistent application as to why VA considers any particular veteran to need 10 vs. 25 vs. 40 hours of caregiving, and that is a BIG problem.
In closing, let me thank you on behalf of my family and other caregivers across the country for your sincere efforts to make this program a success. The problems I’ve highlighted can be solved. Doing so will not only strengthen this important program, but improve the well-being of our wounded warriors.
Thank you for the privilege of testifying. I would be happy to answer any questions you might have.