While I am extremely thankful that the VA recognizes the need for to provide services to caregivers, I regret that my experience with the Caregiver Program process has not been a pleasant one. Our application process began in January of 2012 and at first appeared that it would go smoothly. Valerie Silvers is the CSC that we dealt with at the Denver VA. Shortly after submitting the form I was contacted by Ms. Silvers to discuss the care needed for my husband by telephone interview. I was in no way informed that this would be the only time I would be able to contribute information on what duties I perform in caretaking for my husband.
We were scheduled for an appointment with a psychologist to do the exam for the program. This clinician was not one my husband had seen prior to this exam. I was not allowed to be present during this examination and was actually quite rudely informed “you will get your chance later.” My exclusion from the exam came in spite of pleading from my husband that I go to all his appointments with him as he does not function well in a medical environment without me.
During the exam, my husband was extremely anxious and reported to me that he “just wanted to get out of there as soon as possible.” He also felt the line of questioning implied that the clinician performing his exam had not even looked at his medical records pertaining to his PTSD and TBI.
I will note that this has been the only exam I have ever been excluded from, including all his exams for his Compensation and Pension. I have also been able to attend all his counseling sessions with him, without problem, and have been made to feel more than welcome. There is documentation in his medical record that actually pertains to me being a nurse and that is the only reason one of his psychiatrists increased his medication levels-because she knew I was managing his medications at home.
Shortly after this appointment we also had an appointment with a TBI doctor at the VA and mentioned the caregiver program. We were very bluntly told by the physician that “you don’t want to be in that program anyway. It’s only going to last for 5 years and people are just going to be dependent upon that money”. At this point I was at a loss for words and she continued with “that program is only for people who can’t wipe their own noses or butts.” As a clinician, I cannot even begin to explain how horrified and appalled I was that she would actually say these things to a patient. I attempted to contact the patient advocate regarding this issue but was never able to meet with anyone and could never reach a live person on the phone.
Following these appointments I received a call from Ms. Silvers stating that we were denied the program. I explained my disagreement with the decision and she advised me to appeal through the patient advocate office. I called the office and never heard anything. Approximately a month later I heard from Ms. Silvers again and she asked if I had started the appeal process. I explained that I had never heard back from the patient advocate office. Upon further review, it was found that the patient advocate office does not handle appeals, but rather the Chief of Social Work. Once directed to the right place, we started the appeal process with Joanna Kadis.
I submitted a lengthily appeal letter to Ms. Kadis to present to the appeal board. I also asked that documentation from his psychologist examination during his Compensation and Pension exam be reviewed as the documentation was drastically different that the original psychologist evaluation. Dr. Richards performed the exam for his PTSD during his C and P exam and stated specifically that if the review board had questions regarding his need for a caregiver that she could be called.
After a 60 day review process we were informed that we were once again denied for the caregiver program. This came as quite a surprise since my husband’s PTSD alone was rated 100% by the VA and according to the board he meets special criteria for homebound compensation. I do not understand how there are two such drastically different opinions regarding his needs for a caregiver. When speaking with Ms. Kadis I could not get a definitive answer as to why there were two different conclusions. I was informed that the appeals review board had thoroughly looked at our case. When asked who was on the board I was informed that the Chief of Mental health and a podiatrist reviewed the information and it was then presented to the Chief of Staff. I will state that I have issues with a podiatrist being a deciding factor in a mental health case.
I asked about a second opinion and was informed that the review board “was the second opinion”. I informed Ms. Kadis that I disagreed because for a true second opinion to be clinically appropriate and accurate, one must actually see the patient. No one on the review board actually evaluated my husband. The basis of the review was on the original psychologist’s documentation. I have personally reviewed her documentation in my husband’s medical record and completely disagree with it on a professional level. It also does not correlate with any of the documentation by the psychologist who performed my husband’s exam for his PTSD during the C and P exam, nor with any of the documentation from the psychiatrist that had been seeing him on a regular basis. I find it extremely odd that the one exam I was forbidden to be a part of is the one exam that is being used to deny us from the program and the results of it are so different from all of the other evaluations my husband has had.
At this point I was advised to do a second appeal. I sent the information to a Ms. Mary Lee at the VISN level. After many unanswered phone calls and emails to even receive verification that my appeal letter was received, we received a denial that stated it was final and we had exhausted all appeals.
To say that this process was frustrating does not even begin to describe the emotional turmoil of this ordeal. Also, to have repeatedly stated my professional disagreements with the exam finding and to have them ignored is alarming. Even more alarming is that in the appeals process the continued denials were based on documentation that I had already stated in writing I disagreed with…a true appeal or second opinion should have meant a re-evaluation by the healthcare provider handling the appeal. To base a decision on someone else’s documentation and never lay one’s own eyes on the patient is extremely poor practice and should NEVER be done. It is worth noting that since being denied the program and being told that he didn’t need a caregiver (or more accurately “that while it wouldn't be pretty, we feel that he could function without you”) he has needed to go back to inpatient treatment for his PTSD for the third time, has started and stopped school an additional two times and has started and stopped a part time job twice. His needs have not changed and I continue to provide care for him daily. He continues to attest to the fact that he “would not be able to make it without me” and that “the only reason I am doing as well as I am is because you are here to help me.”
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