Wednesday, October 9, 2013

Our Story: Wouldn't Be Pretty...


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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Why This Started: www.familyofavet.com/state_of_veterans_families-why.html
The Statistics: www.familyofavet.com/state_of_veterans_families-statistics.html
Our Stories: www.familyofavet.com/state_of_veterans_families-stories.html
What We Hope For: www.familyofavet.com/state_of_veterans_families-hopes.html
FAQ About the Project: www.familyofavet.com/state_of_veterans_families-faq.html

16 comments:

  1. I am sorry you had to go through this. I made an attempt at the caregiver program and got the same attitude from the caseworker. I was also told that the money wasn't going to last forever. She even said how they can kick you out of the program and that could be difficult for us if we were using the money to live beyond our means, as many caregivers do. I was so angry and discussded. For us, I was desperate for counseling from someone who knows how PTSD effects a spouse. I have insurance, but couldn't afford the high cost. This same woman criticized me because I have insurance and she felt that trying to get a "free ride" was just another reason I should not apply for the program.
    I gave up. I can tell you that every location runs the program different. So if you are near another via hospital I would reapply there.

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    1. Hello Gianine,

      I am very sorry to hear about your troubles with trying to apply to the Caregiver program. Unfortunately you are not only one who has been having these kinds of troubles with their CSC. If you happen to see this comment would you please e-mail my fellow staff member Melissa at Melissa@familyofavet.com with the details about what happened? We are trying to compile a list of issues people have been having with their CSCs to try and see about improving things with the program. Thank you so much and I hope things improve for you!

      -Aimee

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  2. Aimee,
    I will email Melissa and let her know what went on.

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  3. The Caregiver Program in my opinion sucks. Its great for the people they don't decide to target and do review after review trying to boot them from the program, besides that its completely inconsistent, what is a Tier 1 in one state is a Tier 3 in another.

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  4. My husband has PTSD and TBI, among many other disabilities that he is rated for. We have also been denied for caregiver support. We also did the first appeal and were denied. We plan to appeal one more time to the VISN, however I have a feeling that same thing will happen. Our caregiver support coordinator told us that the reason we got denied the second time is that they did not feel as though my husband needs a caregiver, which is ridiculous.
    I called the national caregiver support line to get advice on what to do before we write this next appeal. They couldn't offer much advice because there aren't too many people in this situation (since the program only started in 2011). However, she did say that if we are unsatisfied with the decision from the VISN, that we should just keep going up the chain of command. Demand to know who is above them and keep going until I reach Washington if I have to. This is what I plan to do.
    ~Belle

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    1. We are in the same situation but a few steps back. I am the veteran and am writing from my wifes FB. We've been on the program for 2 years give or take. We started in tier 3. All was good. We then got moved to tier 2 since my wife told them I had a hobby. The CSC jumped on that like nobody's business. She started reminding us on phone conversations that "this program isn't forever". We knew something was up! Anyway, I don't know how I would manage without my wife??? She does it all. Without one change in my status they sent us a letter and kicked us out completely. Now, as I sit here frustrated as you, I'm trying to construct my 2nd appeal letter. The first was just telling them that we were appealing. I thought we could put together a daily activity list so that they know what she (my wife) does for me. What do you think? We are in Texas. I sent in the first letter one month to the day after receiving the letter from the VA kicking us out. Thoughts? It seems they have plenty of people to tell you "NO" but hardly anyone to answer simple questions on appeal???
      Thanks

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  5. How did everything pan out? I am writing our appeal on the VISN level now, any tips?

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  6. Was on the program for 3 years. Got in at the start of it, now years later after no notice we are told to go to the VA for an evaluation. Told if we don't show up we would lose our Stipend. We go and do the 10 question evaluation and wait. Few months later we are informed that we are no longer in the program. We have appealed 1 time to the VA hospital in Charleston and were of course denied. A nice long and comparative letter between their denial reasons-the law-and my health status. Waiting for news on that 2nd appeal. I use the MyhealteVet and have a premier account so I can get my records and med filled etc. I pulled my records and read then over a days time because of concentration and memory problems, I found out that my eval was correct. The answers giver to the nurse did not appear as we told her. As a matter of fact she wrote NO on every single question and requirement except for the first one. which is the one that says you have to be a post 911 vet. I am very pissed as I walk with a cane, have blackout issues, equilibrium problems, no short term memory, stuttering problem, sever anxiety, PTSD rated 100% etc etc. I am even on social security disability due to the PTSD. Seems as though the VA is trying to cut back all over the US. All we can do is fight back call congressmen, VA IG and reapply and appeal every decision.

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  7. My husband just got off the phone with the caregiver coordinator at our local VA. Never mind that it took many phone calls for them to even get back to us (I've been trying to get a hold of them for over a year- this time it took 2 calls over the course of a week). They told him that since he's being seen by a civilian doctor for his 100% P&T PTSD, they can't do anything for us. He MUST be seen by the VA for at least 6 months. His doctor is approved through Tricare (he was medically retired), and he just had a C&P a few months ago, which is what got him rated at 100% P&T. Nope, he has to wait for months to get an appointment at the VA, then see them for 6 months to a year before he's eligible. So much for being responsible and using Tricare to take some of the burden off of the VA, huh?

    It's just like the military- spouses don't matter. It doesn't matter that I can't work because I have to do all the child care, cooking, cleaning, bill paying, driving, etc. WE DON'T MATTER.

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    1. That's exactly what I'm going through! not only does it take months to see a counselor but the counselorsecond at our local VA mental health are very rude which is why I haven't been going to them to begin with it feels like there's no hop or help out there for us right now

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  8. In there with y'all. VA like military care have good resources but the care is lacking. We got denied when we're a shu in for it. Out coordinator is so bad never answers phone so.....yea.

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  9. My wife applied. Two weeks later got a denial letter, no interview, no physical, no nothing. Seems the va likes to see me suffer

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  10. I'm unsure if anyone still checks this post. but I need help writing the actual appeal letter. I received outside neurospyic evaluations for my husband to prove he does have and still need caregiver help with his TBI/PTSD. My evidence is pretty hard to deny the extent of his needed care but I'm completely overwhelmed with how and where to start writing the appeal. I have searched the internet to no avail. I'm overwhelmed dealing with this and my disabled son's care right now has left me lost!.. Does anyone have any sample appeal letters? I had been in the caregiver program for years and because my husband receives his care by private providers and we refused to turn over therapist appointment notes and I only provided them with proof that we both have attended these appointments. I have been legally advised that the VA does not have the "right' to these documents. Proof that he is in treatment and for what should be way more than they must demand. Etc etc... is there anyone out there that can help me I'll be willing to explain in more details my specific situation. but right now I am just hoping for a appeal letter to follow so I have a idea on how to word mine. Thanks
    mrstucker1010@yahoo.com

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  11. My husband and I are going through the same thing. He is rated 100% for PTSD, Homebound, Unemployable, etc. They said he does not meet the criteria for the program. Both denials were of clinical reviews of the record. No one has spoken to us in person. I attend the Caregivers Support Group every month. Now, we are getting ready to appeal to the VISN. And, I'm going to cc the congressman's office. It is very frustrating. My husband served through 6 tours over 17 years in the Army. All we are asking for is quality care. Why should we have to institutionalize them when we can care for them at home with support?

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  12. I applied for it. I'm 100 percent for PTSD and 30 percent for IBS and was told I was denied. I never had an interview or anything. The lady on the phone said she looked at my records and that I was doing better. I told her basically that's a lie. Then I talked to someone else and I was like if I'm getting better, how come I'm still seeing my psychiatrist every 2 months, or why am I attending weekly depression group sessions, or why am I still taking anxiety and depression meds? If she did look at my medical records, she must have skimmed over them.

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  13. Anyone interested in a CLASS ACTION LAWSUIT?

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