There is no doubt that the Expanded Caregiver's Program for older seriously disabled veterans and their devoted Caregivers, often spouses, turned out to be a cruel hoax of rejection. I have three 100% service-connected total and permanent disabilities plus several others and cannot even walk to take care of myself.
My husband depends on my help daily in all aspects of his life. He is 100% T&P Disabled with a TBI, seizure disorder, PTSD, anxiety, insomnia amount a few other medical issues. Getting discharged from this program has been overwhelmingly stressful. We are trying to figure out how we will live without the extra income, the help from the wonderful ladies within the caregiver system and still make sure my husband’s needs are all met. I hope that you guys will take into consideration all of the families who truly need this program. Thank you for your time.
I’m very concerned that veterans severely wounded in combat are being dropped from the caregiver program. I think the VA has made changes to the program that are leaving many veterans without caregivers that desperately need them. This is going to cause more stress for caregivers and veterans. Please also think of our amputees with TBIs and no family.
We are in the program almost a decade and now we are drop! My husband is 100 disable sever PTSD TBI and chronic pain and abdominal injuries !we will lose month stipend ,heath insurance and home visits!please help us stay in the program! Thanks
My husband, retired Sergeant First Class Joseph Swoboda is a three time combat veteran of Operation Iraqi Freedom. He was deployed during the initial invasion in 2003, again in 2005, and again in 2007. Each time, the deployments were longer and longer. During the initial invasion and again in 2005, he sustained injuries from 2 explosions in which he lost consciousness; however, because of the intensity of the fighting, there was no time to be checked by medics, so he shook it off, and remained in the battle. When Joseph was still an active duty soldier, I knew he was struggling, he was home, but he had never really come back from Iraq. A fellow soldier, and trusted friend also saw his struggle, and thankfully, insisted that he seek help from the overwhelming symptoms he was experiencing as a result of his Traumatic Brain Injuries and Post Traumatic Stress. The invisibility of his wounds has never helped with recognition. Once these symptoms began to affect his work, Joseph was medically retired from the Army and during his out processing, a worker at Ft. Benning handed me an application for the VA Caregiver Program, but I was not really sure what I was applying for. When he was still active duty, I was his caregiver, but I never recognized it. I was managing his medications, I was raising the kids, I was managing finances, I was helping him remember things that he could no longer remember. After Joseph medically retired to his home state, we began to go through the process of approval for the VA’s caregiver program. From the beginning, the program was extremely stressful. The caregiver support coordinator called me and asked me why I had applied because it was unlikely I would qualify. I responded that I had applied because my husband’s medical board officers asked me to, insisting I would qualify. Her attitude made me feel as if I was asking for something totally undeserved and unwarranted. By the end of the call I was in tears, and shortly after called the National Caregiver hotline to help me sort out my confusion and insecurity after this disheartening and insulting phone call. Next in the caregiver approval process, the VA assessed his mental health. Rather than look at the thousands of pages of medical records compiled after almost 20 years in the active Army as well as extensive medical evaluations given in the year long medical board process, the caregiver program decided to ask the VA mental health provider he had seen only once during his intake at the local VA clinic set up to start his care. When asked if she thought Joseph needed a caregiver, her response was, “he seems fine to me”. When I asked her how she had made this determination, she admitted to me that she had no knowledge of the caregiver program and was therefore unsure how to determine eligibility. Next they interviewed his new primary care provider who thankfully recognized that Joseph had many physical and mental disabilities including psychogenic nonepileptic seizures. These seizures are brought on by stress. He has a service dog seizure trained to help reduce stress and alerts to indicate potential seizure activity. I was called and notified in August of 2013 that I did in fact qualify for the caregiver support program at a tier 2 level. As we progressed in the program, one of our first nurse assessors performing a wellness contact let us know that “we shouldn’t get used to this money because it was only budgeted for 5 years.” I found this statement distressful so I began to consider getting involved in caregiver advocacy. Also, at this time, caregivers across the nation were being dropped from the program at alarming rates with no clear explanation. This led me to apply and be chosen for a Dole fellowship within the Elizabeth Dole Foundation. Under this assignment, in June of 2017, Joseph and I were called to testify in front of the Senate committee chaired by Senator Susan Collins to hear testimony for the passing of the Mission Act. As the child of a Vietnam veteran, I felt it my duty to advocate for the inclusion of caregivers from pre-9/11 eras. Unfortunately, though our mission was successful, post 9/11 caregivers are now facing an unprecedented and unjustified culling from the program. Joseph and I would never have testified in support of the Mission Act if we had known VA representatives would unlawfully misinterpret caregiver eligibility requirements within the law to eliminate most if not all so-called “legacy” caregivers from the program. Joseph and I were recently removed despite his providers’ full support for continuation within the program as well as successfully making gains in mental and physical health for the past 8 years. Through my work with the Elizabeth Dole Foundation as well as my husband’s two decade Army career, I know hundreds of military and veteran caregivers across the nation. None that I know defined as legacy caregivers have remained in the program. None. Joseph may seem fine, but he has invisible injuries that are mitigated by a caregiver. If the caregiver is not in place, this support will undoubtedly cause the injuries to have a much more profound effect. All the work that he and I have done together to ease the pain, moral injury, and true consequences of war will be lost. Getting dropped from the caregiver program means that I must go to work full time which will cause stress within the household to grow exponentially. Please conduct a careful and thorough review of the The Department of Veteran Affairs Caregiver Support Program. Those of us who care for those who have borne the battle deserve it.
Legacy Caregiver Program; Discharged due to not having a minimum of six continuous months based on a) an inability to perform an activity of daily living; b) a need for supervision, protection, or instruction. Notified on December 16, 2021 Era Served Served 1986-2016 Message I, along with my family, have all served our country in both the Officer and Enlisted ranks throughout its history. From General Spencer at the Battle of Brooklyn to Landing Zone “X-Ray” in Vietnam. Along with my dedication of service to our nation from 1986 through 2016 in both the U.S. Army, Army Reserves, and after September 11th, 2001 back to active duty Army. I retired after 27 years of service and have seven Military Occupational Specialties (MOS) and am trained in an eighth.
I never did it (served) for the VA benefits or to be called a Veteran. I did it because it was in my blood and I was determined to watch over, protect and assure that our enemies would never gain a foothold on our continent or our interests. I did it so others didn’t have to send their children to war.
It started becoming evident right after Desert Storm that something was wrong with my health. Between 2007 and 2012 things began happening that couldn’t be explained by military doctors. I passed out in 2012, my body had given all it could.
Our transition to the Veteran’s Administration has been a hard road to march. Doctors who are tired, overwhelmed, or just stressed and scared take any inflection as a threat. They don’t have time to go over every record, and some are just Physician Assistants, checking the block with their non-personalized clinical notes of cut and pasting events on some generic form as to what took place during a visit. Whether it did or not. And you are lucky to see the same doctor twice.
Doctors will take you off one med because it could cause this. Not understanding or consulting with the doctor that prescribed it, not understanding it was needed for something beyond their General Practitioner teachings. Then writing false narratives to discharge you from their care.
One doctor (a specialist) was bragging about learning about a Soldier at a symposium. That drastic measures had to be taken to understand and diagnose said Soldier. Then her face contorts and a nervous nod begins as you say you are that Soldier. Without my caregiver and her dedication, I would just give up. I would take the pain and fall out of the system, and become a statistic. But, isn’t that what the VA wants? I can’t do it alone, few people could.
If it were not for my wife, who is my advocate, my caregiver, I would have faded away. (It is hard enough when all you want her to be is your companion, best friend, adventuring buddy, and lover.) If she wasn’t taking careful notes, keeping copies, researching tirelessly for unimaginable hours, and reaching out to other caregiver groups and legal services, I would not be receiving the care I am. I have TEN doctors and not one speaks to another. She makes all my appointments, takes me, takes notes, does the follow up of what the doctor asked, and keeps them informed of what each are doing. She knows my complete medical history, almost 5000 pages worth. She has read and dissected each page to have the answers for the doctor when a question is asked. I have no short term memory and even the 1990's are starting to get shady. She is a special education teacher that had to quit working to care for me. (She is also assisting me with typing this letter.) I have over 50 documented disabilities recognized by the VA, the most severe is too much pressure on my brain from 10 TBIs while serving my country.
Between the VAs' constant internal departmental missteps and miscommunications, their inability to work with the active-duty medical side of our care and outside providers, or the incomplete and or inaccurate notes taken by nurses, secretaries, and doctors any program looking at the notes, no one is going to qualify for any programs offered by the VA. A Veteran cannot receive proper and or complete care, and now we will lose out on the new PCFAC program due to “clinical notes” from the last six months during a pandemic.
You can’t have a life, and you curse every disability and constantly apologize to your wife for being “Broken.” I’ve told her to go, and that I would understand. Well, she’s still here. Her dark brown hair is now white at 44. My disabilities are difficult but I’ve aged her terribly because of my healthcare providers or lack thereof. As a caregiver, she is hard to beat. She even watches out for my dad who served under Hal Moore in Vietnam in 1965 – 66.
We didn’t know about the caregiver program in 2017 until the VA told us about it. She is worth more than her stipend for sure. But she takes it, buys folders and has charts and logs made to track me. She buys special equipment for me. They’re our unsung heroes as hard as that is for us as hardened vets to admit. Don’t strip them of the things they need to do their job. She attends each of my appointments, driving, caring, cleaning up after me, and treating wounds from my falls. She takes care of the entire house, inside and out, plus all of the bills. She completes all the shopping and cooking because I might cut my finger open or start a fire forgetting (because of my short-term memory loss) the stove is on. Or just fall over when I wobble, falling onto an open flame burning myself. My wife has walked many of midnight patrols across our mattress over the years, and she is still here loving me and fighting for me to receive the best care. I need her.
Just do right by them, by us. If the uniformed armed services are less than 1% of the U.S. population. How many caregivers can there honestly be? We give humanitarian aid all the time to other nations. How about we look at the humanity on display within our veteran's homes and give them a break.
I am a special education teacher by trade but have not been able to be in the classroom since my husband passed out April 2012. I have to be ready to drive him to doctor appointments, physical/occupational/speech therapies, MRIs, CT scans, PET Scans when he needs me. I took a job on Fort Bliss in 2015 part time, since my husband was being retired from the military. The position mandated a master’s degree and paid $14 an hour, something I had not seen since 2001 as a teacher in a public school. I did not receive any sick leave at this position, but they allowed me the flexibility to take care of my husband within reason. I had to quit my job May 25th, 2017, due to an extreme safety concern for my husband. I received a call May 25th, 2017 from my husband. It was a 90+ degree day. He said our dog got lost. I was so confused because we have extended the height of our backyard walls to seven feet. I asked how he got out of the yard and he replied that he was in the desert, walking the dogs. Again, I was so confused because my husband had never drove off on his own before. I asked if he had water, and he responded no. He is on medication that causes dehydration. I looked at his phone tracker to find him in the desert, grabbed water, and left work. By the time I got there, he had found our dog, or to hear him say it, the dog found him. Both were not in the best of shape, but he refused to go to the emergency room. I cooled them down slowly, hydrated them and that weekend drafted my resignation letter effective immediately to care for my husband full-time. To this day he still does not understand what he did wrong. We were accepted into the VA Caregiver Program in September 2017. We conduct all quarterly assessments with the program. I schedule all of my husband’s appointments, email and communicate with his doctors to keep them updated on his health, concerns/issues, memory loss, falls, need for referrals, and medication refills. I fill his medication pill containers and hand them to him to take (he cannot keep what day or time it is straight). I am the one that decides when a trip to the emergency room is necessary, and monitor all stays in the hospital since he pulls his own IVs out and leaves the hospital. This has been especially key in his care since the pandemic hit in February 2020, and in-person care has ceased. I have now installed cameras at all our entrances, exits, and backyard because he might wander off or fall. I just got cameras for our vehicles connected with my phone, because I’m concerned about a “silver alert” situation. This way I am notified electronically if any person is detected in any situation. I also purchased him an Apple Watch. If he were to fall, and I cannot hear him, the watch detects a fall and notifies me. I have had the bathroom on the main floor made handicap accessible. The Jacuzzi tub was removed because my husband could not step into it without losing his balance. I had a walk-in shower put in its place so a seat can be there. There are also grab bars to assist with balance. The VA even saw the need for the walk in shower and paid for this portion of the renovation. I utilized our money to finish the renovation, having a handicapped toilet installed, the vanity was also replaced with the tallest I could find so he doesn’t lose his balance while brushing his teeth or washing his face. Our bathroom door was so narrow, you had to turn to get in the room, so we paid for the door to be widened for wheelchair/walker access. I knew that time would come. The monthly stipend I receive for caring for my husband is necessary for us to make ends meet financially. The $1600 is not much for an entire month worth of work caring for my husband, but every little bit assists us. Losing it due to the lack of our doctor's clinicians’ notes for what I do for my husband, is a hardship our Veterans and families and most cannot survive without it. Please advise me on how you would like me to care for and document my husband 24 hours a day, 7 days a week. As a special education teacher, I am trained to be diligent with notetaking. Activities of Daily Living (ADLs) that I complete for my husband. Shaving him or trimming his beard. Cleaning up if there was a toileting accident. Keeping track of his glasses and hearing aids. Combing his hair. Being there when he showers for when he loses his balance. Assisting his with socks and shoes. Putting his back brace on/off. Assisting with his walker, or wheelchair. Instrumental Activities of Daily Living (I-ADLs) that I complete for my husband. Driving. Communication Management. Medication Management. All Financial Management. Care of Pets. Monitor Emotional Triggers. Monitor Migraine Triggers. Monitor Exhaustion and get him to a nap before he loses his balance and falls over. Schedule All Appointments. All Shopping. Plans, Preps, and Serves all Meals. Maintains the House. Monitor Behavior Struggles. Monitor Spatial Awareness. All Laundry. Importance of knowing. Caregiving is ever-changing, it is not linear due to my husband’s polytraumas. His 10 TBI’s, PTSD, Intracranial Hypertension, plus the 50 other host of injuries leave me in survival mode to attempt to keep our daily routine as consistent as possible. It is my job to extinguish the “roadblocks” in and outside of our home. I have had to learn to recognize, predict, anticipate when Pete is frustrated, confused, exhausted, needs quiet, or needs to be seen by a doctor or go to the emergency room. This is not anything I would wish on anyone and very few people understand what we go through minute by minute. For CEAT to state my husband can be home independently 100% of the time, is an injustice to him and his 27 years of service. If the way our Post 9/11 Veterans are being treated, or I should say NEGLECTED, “21 A Day” will be a small number compared to after the thousands being discharged from the program. Veterans will be becoming a statistic by accident by burning down the house or taking pills wrong. Or they will take their own lives because they are a burden on their family because the country, they fought for is not providing proper care for them. Not all wounds are visible. My husband is one of the invisible wounded. He is NOT being provided proper care by discontinuing his ability to have a stipend for a caregiver. And having us jump through hoops is also not the way to treat our Wounded Warriors. To quote the VA Secretary Robert Wilkie, “We expect this first phase of expansion will let us enroll twice as many eligible Veterans and caregivers.” There were close to 20,000 Veterans post 9/11 that were enrolled in the caregiver program on September 30, 2020. Let us see how many of them are left by the time all of the reassessments and appeals have occurred. The CEAT is neglecting any needs of Veteran’s with a “need for supervision, protection, or instruction” on a daily basis. Please look into why Veteran’s that need supervision, protection, or instruction on a daily basis are not being considered for the Caregiver Program. Thank you again for listening.
I have been the caregiver of an Iraq war veteran for most of my adult life. Years ago I was told that there was a program to support me financially, emotionally, and physically in caring for my husband at home. Once we were enrolled in the Program of Comprehensive Assistance for Family Caregivers, and started receiving my stipend, my husband's quality of life changed completely. Instead of me leaving for work, and hoping that he didn't burn down the house, I was able to focus all of my energy and resources in helping him navigate life after his military service.
I have been informed that we will more than likely be discharged from PCAFC after our re-assesment this coming week. We no longer meet the stringent rules that are in place.
I have spent my youth caring for my veteran; when I could have gotten a degree to have financial security of my own. I could have let the VA care for my husband's numerous mental health illnesses through an in-patient program, but instead I stood by my husband. I've never grieved for the loss of my education or career until now. Without the small financial security that the stipend affords me, I will have to seek employment, although I have no credentials to seek employment with.
When I do find employment, who will care for my husband? If the VA paid their doctors and nurses to house him at their facility, which he would ultimately need, it would cost thousands more than the highest stipend that PCAFC offers.
If the VA does determine that my husband meets the criteria for a caregiver, I will more than likely recieve almost $1,000 less for my stipend than I do now due to only qualifying for 65% of the monthly stipend. How can a person behind a desk that has never met my veteran determine that my daily interventions for supervision, protection and instruction doesn't qualify me for 100% of the monthly stipend? If they were to do my job for 24 hours they would walk away at 100% salary. They wouldn't even accept the position for 65% salary.
So my question is, where is my $1000 going? PCAFC was given 50 million additional dollars to operate this program. I would be curious to see their budget and where the additional funding is being spent. Will the loss of my stipend will be used to pay PCAFC executive staff bonuses? I hope that isn't what is happening, but after watching caregiver after caregiver get discharged from this program, it's hard not to believe that our funding is lining their pockets.
I just don't understand how anyone can take money away from someone who has given their all. My husband gave his all for this country, and I've given my all to my husband. Without this program and the financial security that it brings, I fear my family will be torn apart: either by institutionalization, incarceration from not having the proper supervision that I provide, or he will be one of the 22 veterans who choose to end their lives. Thank you for your time in reading this.
My Wife and I have been a part of the Caregiver Program for five years. I am 100 % disabled. My Wife is unable to work full time as she has to help me with daily activities of living such as bathing, dressing, grooming etc. She also also manages all my medications and drives me to all medical appointments as I am unable to drive due to my medical conditions. We have just been discharged and will be losing a significant amount of income. My Wife needs to be home with me as I am at risk of being in danger alone. Due to my TBI, I forget things very easily and can not be trusted to cook my own meals and remember to shut off the stove . It is unsafe for me to climb stairs on my own. Personally for us, being discharged is not only going to put us in a financial burden but more importantly it will be putting myself in a dangerous situation. I ask that you please revoke the decision to take away the Caregiver Program from Veterans who desperately need the help.
What is happening now for the Legacy caregivers must be stopped immediately. No one one their right mind who sees what is going on, can’t say that it’s all legit and in the best interest of the Veterans. What is going to happen when thousands of caregivers go to work, even part time, to keep their roof over their head and the Veterans give up. What’s going to happen then when the 22 a day raises?! Is that what you all are waiting for?? It’s an absolute disgrace to our Veterans what is happening. Money going into the pockets of who to fix what?? If I call my VA to come sit with my husband while I go run an errand or heck even go to an appt for myself, will they??? Hell no! Wake up! You all are supposed to have our back and be fighting for our Vets not wasting money on stupid BS that does nothing but put money in someone else’s pocket to point at someone else later for something going wrong. It’s absolutely disgraceful and disgusting what is happening! Please wake up!!!! Before it’s way too late. Stop this insanity now and fix the problem. We shouldn’t have to fear in 8 months that our loved one may hurt themselves (or worse) while we try to make ends meet outside the home bc we can’t be there, or not even afford to have anyone then help. Please wake up!!!!
My husband was discharged from the program after 9 years due to "not needing 6 months of continuous care." My husband has a TBI, mood disorder, PTSD, and mental health issues. He was viewed by the VA as incapable of handling his own financial affairs and of being able to own a firearm due to impulse control and rationale. He needs a stable environment to keep his moods in check. He has major short term memory issues. He lacks judgement and rationale thought, My husband needs constant supervision to ensure he is safe and isn't taken advantage of. It has taken us years to create a routine that works to keep him happy, safe, and functional. His records show that he is doing well because I am here to make sure he is doing well. By being discharged from the program, I am going to have to leave him for the majority of the day and will not be here to ensure that he eats, take his medication or not over take his medication, grooms, gets dressed, gets out of bed, that his mood is stabilized, that he doesn't make an irrational decision that can hurt him or even kill him. The new VA regulations make it impossible for the vets that are more likely to die by suicide, accident, or homicide to qualify for the program after years of being helped by it.
Veteran Caregiver on highest tier for 9 years, based on lack of need for continuous care 6 months or more.... Stop letting veterans down, changing the rules/program is unfathomable!
My veteran was an ICU, army nurse in Iraq. She was medically retired after 18.5 years of active duty, having held both enlisted and officer ranks with deployments to Somalia, Bosnia and Iraq. She was medically retired in August 2009, after 2 medical boards due to PTSD, depression and orthopedics problems.
Veteran awarded ratings (2009): 100% P&T with Housebound
Since her retirement in 2009, her mental and physical conditions have gotten worst. She has chronic pain due to many orthopedics conditions, newest diagnosis of fibromyalgia (2020), and atonic neurogenic bladder (2022), having to go to the bathroom every 2-3 hours to empty her bladder. Her pain is truly incapacitating, rendering her unable to perform ADLs by herself.
Her PTSD symptoms are constant, daily reminders of what she went thru as an ICU nurse in Iraq 2003-2004. She has nightly nightmares, daily flashbacks, daily delusions, daily depression, anxiety, aggression, impulsivity, suicide ideations. She describes it has if her thoughts were bees in her mind, getting stung every second of every hour. Her symptoms are so hunting that she has tried to end her life 4-5 times since she came back from Iraq 2004.
She is compliance with her treatment, but nothing has worked so far. She has done every therapy available for PTSD and depression, to include 2 sets of prolonged exposure, and even ECT. Nothing has worked. Her mental anguish is consuming her; she has no friends, no close family relationship, no emotional support but me, her wife and caregiver. Having a caregiver is what has kept her from committing suicide all these years. The constant supervision, protection and instructions from her caregivers is what have kept her alive. She needs a caregiver to be able to sustain in the community.
During our re-evaluation done by <redacted> Signed: 01/21/2022 08:29, at the Caribbean VA in Puerto Rico, this nurse, did NOT assess frequency of personal care services provided by the caregiver, but documented it as such, She twisted everything we said, documented inaccurate information and was very condescending when telling my veteran, that her suicide thoughts and feelings were selfish.
We have tried to reach our Resident Commissioner of Puerto Rico, United States House of Representatives, Jennifer Gonzalez Colon, but have not have any luck yet.
First Appeal Denied
First, we could not access this program because we lived abroad. This forced our family to move back stateside in 2014. We have been in the program at the highest tier since 2014 due to mental health problems. He might not need help taking showers, eating, or shaving, but he does need to be monitored 24/7 while conducting these activities, and also reminded to do so. The VA itself has rated him 100% P&T and added "INCOMPETENCY". We did not fight incompetency, and we did agree to be in the fiduciary program. So now the VHA wants to tell us that he is not competent enough to handle his own finances or to own weapons, but he can be left at home alone?
In the past, he has attempted suicide and cut himself. The medical notes contain documentation about his episodes on the few occasions that he leaves the home (always supervised) when he had panic attacks, flipped out on someone, or has needed immediate re-direction and protection. he does not drive, he does not take medicines on his own. He does not arrange or participate in doctor's appointments unless I schedule and make him attend. We entered the Caregiver program in 2014 and have found a balance that has allowed him to stay out of the hospital since 2017. This is exactly what the caregiver program was designed for, to let the veteran heal or cope in a protected environment monitored and cared for by a dedicated caregiver. While we are very happy that the pre 9/11 families are now included in the legislation, we are not happy about the legacy reassessments, especially in the way they are conducted.
The nurses and OT conducting the assessment have mishandled the interviews and completely counterfeited reality while drafting the reports who would then be examined by the CEAT team for decision. Many veteran families are reporting the same thing, and in our opinion, this seems to be a very common modus operandi not only at Dorn VA, but in several different states. The legislation is clear, you can qualify for the caregiver program because you need help with ADLs, but also if you need Supervision, Instruction, and Protection. Unfortunately, at this point, the CEAT teams and people conducting the assessments are COMPLETELY IGNORING the need for Supervision, Instruction, and Protection. We don't understand how something that was sold to the public and VSOs as an EXPANSION, has in fact become a MASSIVE PURGE!
Furthermore, the assessments are abusive, intrusive, traumatizing. Many veterans were already down spiraling due to the stress caused by these assessments, the thousands of notices of discharge that are being sent out these days are causing our veterans to completely crash and crawl back into that black hole that many of us caregivers have worked so hard to dig them out of. What is going to happen once our caregiver pay is discontinued? At that point, we will have to choose if we want to struggle financially and still stay at home without pay to save our veterans' lives or try to get jobs with more than 10 years of career gap. In our case leaving him alone would pretty much mean coming home from work and finding him DEAD sooner or later... and we are not willing to do that to our children who have already endured so much. So we will have to struggle financially, or sell our home, or worse...
This is tremendously unfair for veterans and caregivers and needs to be stopped ASAP. All of the notices of discharge need to be reversed because this train wreck will lead to no good for our veterans.
I am the wife and legacy caregiver of a medically retired OIF USMC post 9/11 veteran, and we have been discharged from the VA Caregiver Program (PCAFC). I’ve given up a rewarding career in higher education to dedicate to my husband’s safety and wellbeing. Despite a severe cut in pay as a Level 1 caregiver under the old rules, it was a sacrifice I was willing to make. I knew that the money and accolades I worked hard for would be meaningless if he was not around to enjoy it with.
He served in Iraq in 2007 and was in the military for three years as an infantry rifleman. Awarded the Marine Corps Good Conduct Medal, Sea Service Deployment Ribbon, Iraq Campaign Medal (w/ 1 Bronze Service Star), Global War on Terrorism Service Medal, National Defense Service Medal, and Rifle Qualification Badge (Expert). For the sake of country and freedom he served, and unfortunately is suffering great injury and illness as a result. His most devastating injury is traumatic brain injury which is rated at 100% severe, permanent, and total. He also suffers from chronic and severe PTSD and a host of other debilitating mental health illnesses and physical ailments. The trauma of war affects him every day as he struggles to find the will to live.
Severe and chronic depression, anxiety, insomnia, hallucinations, severe impairments in – working memory, attention and concentration, asthma, chronic back pain, and headaches is just the short list of his ailments. Each day I fear for his well-being and do everything in my power to help him cope with the mental and physical anguish caused by the war. I provide consistent daily behavioral support and use grounding strategies to center him back into reality. I use physical intervention to keep him safe from injury as he battles through relentless ailments of the mind. I provide daily physical support as his body continues to fail him from the chronic physical pain which affects his activities of daily living; the most impacted being in the areas of mobility, dressing and bathing. I manage all medications, transport him to all his medical appointments and coordinate care with his PACT team as he has difficulty managing these tasks independently without constant assistance due to the severity of his impairments and mental health illnesses. I keep tasks structured, keep daily routines simple, minimize distractions, and change activities frequently as he gets easily agitated and frustrated. I do all this and much more to help him function within his new normal and to prevent him from detaching further from the world around him.
For the past 10 years I’ve worked with his VA medical providers to help improve his daily life, promote resiliency and independence. Although he has had little improvement over the years, I never give up hope for recovery. I remind him each day through my actions that he is never alone, and that I will be here for him through his darkest hours. For the last 3 years, since our approval in 2018, I was able to get additional assistance from the PCAFC to aid in his recovery efforts. This type of support was separate to what was available to me from his PACT team. The program provided me with additional resources, financial assistance, education, and training that would help me move the goalposts closer to his advantage. Unfortunately, this help was short lived after the legacy reassessment process and I was notified of our discharge this February of 2022. My veteran and I have and continue to meet all the PCAFC eligibility requirements substantiated by his medical records. The ultimate decision handed down from the CEAT to discharge us from the program was a blanket denial; unjustified based upon his medical history, notes and statements made by members of his PACT Team.
This decision of our discharge is solely based on the restrictiveness caused by the new regulation, the VA's harmful interpretation of clinical guidelines and by the method of how the veteran functional assessment is conducted. The veteran functional assessment is riddled with leading questions that solicit a particular response in favor of my husband not needing aid for a particular task or activity. Questions relevant to safety, protection, and instruction as it relates to veterans like my husband who suffer from TBI, PTSD and mental health illnesses were omitted. Notes cherry picked from his medical record which pertain to abilities he displays on his best day were included; aiding in the goal to find validity for my husband’s discharge from the program. This incomplete evidence entered into the functional assessment utterly ignores a significant portion of related medical evidence that supports his fundamental need for continued enrollment for the PCAFC. What is truly disappointing is the blatant errors and omissions in the functional assessment notes which were stated verbally and noted during the initial veteran assessment. These tactics used to discharge us and thousands of other veterans and caregivers from the PCAFC are unconscionable and egregious.
The new program restrictions and improper functional assessments are especially detrimental to veterans with invisible injuries. According to the Caregiver Support Program at the VA, 43% of denials are based on an “inability to perform an activity of daily living or a need for supervision, protection, or instruction” for a minimum of six months. This new rule disproportionately impacts caregivers like myself who care for veterans with severe mental health diagnoses and was strongly opposed by over 20 veteran service organizations. Completed reassessment data shows a discharge rate of 88-90% and this trend will undoubtedly rise as more legacy caregivers are reassessed within the coming months. The VA's egregious interpretation and implementation of these changes result in veterans and their caregivers being arbitrarily discharged, denied, or downgraded from the program without an extensive and unbiased review of their mental health records. Nationwide, there are 5.5 million Americans providing more than $14 billion of unpaid care for our wounded, ill, and injured warriors every year, an incredible cost that would otherwise be borne by the nation. Due to this, two-thirds of caregivers either cut back on their work or stop working altogether. The monthly stipend that is included with PCAFC enrollment helps caregiving families make ends meet and allow the caregiver to stay in the home with their veteran.
Caregivers are on the frontline of home health care every day. We enhance the veteran's ability to live safely at home with the dignity and respect they deserve. As a legacy caregiver, I ask my representatives and Congress to help by utilizing congressional oversight powers as Congress previously rejected any attempts to restrict eligibility into the VA Caregiver Program. I ask that regulation amendments be made and for the Secretary to right the wrongs for those who have been unjustifiably discharged, denied or downgraded during the application and reassessment process. I ask for my husband’s sake, my sake and for the sake of all military veterans and their families who are and who would continue to be affected by these injustices.
I am disheartened by this whole situation. I likely could write a book, but I will try to keep my statement concise. My husband is a post 9/11 combat disabled veteran. He suffers mentally and physically each and every day due to his service to our great Country. I have been providing care for him, keeping him safe and alive since 2006. When we were encouraged to apply for the PCAFC in 2012 and ultimately approved, it felt like I had been seen and we had been thrown a lifeline. This program allowed me to leave my full-time job to provide the care my husband required. After 10 years on the program, I received a call right before the holidays informing us of our discharge and urging me to appeal. I am not even sure what to appeal at this point, as the reason we were given for discharge was vague. He and his providers know that without me, my husband would likely be dead or in jail. I have him actively engaged in therapies. I make sure his medications are ordered and taken appropriately. I give him weekly injections. He requires physical assistance, as well as supervision and protection. He has at least two appointments each and every week and has had a multitude of surgeries and more to come. He has notes in his medical records indicating "severe", "chronic", "debilitating" and "progressive". He has notes from his providers indicating he would be in a nursing home without my care and that due to the chronic nature and the severity of his disabilities, he will require a caregiver indefinitely. We were told that this program would be here for us, unless my husband was to magically get better. This program would be here for us so that my husband could be taken care of at home with his family. This program has failed us and apparently the VA has determined that my husband magically got better. This program has turned into something it was never meant to be. It is causing more harm than good. The reassessment process was an interrogation and left me on suicide watch for nearly a month. This is not suicide prevention. When the safety net of caregivers is removed from this vulnerable population, 22 a day will sadly rise.
We were promised when the program opened to other eras that we would not have to reapply and jump through hoops. The redundant 5 annual reassessments is nothing but psychological warfare. These reassessments are creating a mental health crisis.
The extremely restrictive criteria needs to be rescinded. The all or none approach to ADLS is unrealistic. It is essentially easier to qualify for nursing home care.
IADLS should still be considered along with ADLS. IADLS can be complex tasks or functions that are required to maintain a veteran's personal life and environment.
A caregiver should be allowed to work, as long as their veteran's needs are being met and their veteran is safe if they have to be away from the home. This is important for the caregiver's mental health and for the caregiver to maintain a sense of identity. The need for assistance is not relevant to employment.
Veteran's care team should be involved in the decision making process. They know the veteran and their care needs. The veteran's care team should also be properly trained on what exactly the VA requires from them as far as documenting their needs.
Stop completely disregarding the veteran's medical records. Stop using records out of context and twisting the veteran and caregiver's words during the assessment, ultimately to use against them.
I will not fail my husband the way the VA has.
We have been in the program for close to 10 years. Every single year we have had our annual exam and have recertified for lever 3 each and everytime, until now. Now all of the sudden we no longer qualify and are essentially chucked out of the program like everyone else. How is this possible, who will be here to take care of my veteran while he has panic attacks or flashbacks. Who will make him get out bed everyday and eat something. If only these people who are removing countless caregivers can spend sometime in the shoes of a caregiver. I have dream, I have things I want to do in my life and I pit everything on hold for my veteran. Now I am looked at as some leech on a program only looking for money. That I am lazy and don't want to work. Oh how far from the truth that is! I Pray that congress and those in a position of change take the time to understand what it actually means to be a caregiver to a veteran, to know the toll and sacrifice we have made to take care of our veterans on a full time basis. I have kept my veteran from harming himself and others more times then I care to admit. I've been kept up till 4 or 5 in the morning ensuring he goes to sleep, to waking my kids for school at 6am pretending everything is just fine. On paper it may not seem that ptsd or tbi require daily help, but they do!
The woman who did our functional assessment kept calling my husband “weird” because he was in a full body paralysis episode during the appointment. She made me pull him out of bed and literally drag him across the room (which is extremely dangerous and painful for him). She chewed him out because he couldn’t state his full name and date of birth… again he was paralyzed and unable to speak. She then wrote that he’s fully independent, can identify his own needs and doesn’t need a caregiver at all. How can he identify his own needs when he can’t talk or move?! She only asked about 25% of the questions and didn’t document our case accurately at all. Although my husband has 13 years of extensive medical documentation proving his situation and need for a 24/7 caregiver we were discharged based off her assessment. This has been the most stressful situation we’ve ever been in. According to the VA rules we should be a shoe in for level 2 but were completely discharged. I can’t believe a program that is literally called Caregiver SUPPORT could be so cruel, dismissive and cause so much distress and heartache for so many veteran families.
While the expansion of the PCAFC for pre-911 veterans are long overdue, the new eligibility requirements are wrongfully discharging legacy caregivers like myself who play a crucial role in the well being of my veteran, 100% P&T service connected with TBI, PTSD with major depressive disorder, multiple sclerosis and secondaries including seizure disorder, sleep disturbances, impairment of lower extremities and bowel dysfunction. The new ADL requirements are not mindful of progressive diseases like relapse remitting MS, with unpredictable flare ups and invisible injuries such as TBI, PTSD and major depressive disorder.
There are many days his pain is so excruciating, he needs assistance bathing and dressing. He cannot remember to take his medication; especially one of which prevents his seizures. When his legs go numb & tingly, he cannot walk. As opined by his VA neuropsychologist, in conclusion to his psych evaluation just days before the CSP assessment, his memory deficits and cognitive decline is in need of daily protection, supervision and/or instruction regarding more complex activities of daily living. His depression and refractory mood symptoms have worsened as his condition deteriorates. I keep him grounded, give him hope and reach out to his doctors when he has suicidal ideations. These are more than just “wifely duties.” If I didn’t care for him on a daily basis, the VA would as he cannot do it on his own.
The discontinuation of my stipend will impose a deeper mental anguish on our family with financial burden. The stipend allowed me to focus on the assistance he requires due to the disabilities imposed by his progressive disease. He shouldn’t feel as though he failed his family because he proudly served our country.
To whom this may concern: No, I don’t feed him and wipe his butt. But, what I do help him with is just as important as this part of the ADL. First of all, I keep him safe. I make sure the house is clear of clutter and debris so when he walks through with his cane he doesn’t trip over anything. I make sure there is food on the table, in the refrigerator, or in the cupboard so he gets his nutrition. I encourage him to shower with help if he needs it. I help him dress or get out of a chair when he needs it. There are cameras throughout our house, yard and garage so when he goes outside I can keep an eye out on him, just in case his legs go out on him and I will be able to come to his aid. I make sure he takes his meds. I order his meds and if they are not refillable, I track the doctor down to reorder them so there is no interruption of him taking them. I make sure he takes his meds daily for I have seen what happens when he doesn’t. I help make appointments for him, because he can never remember to do that. I make sure he gets to his appointments, because he will get in the car and forget where he is going. I get humiliated in the store if someone asks him a question and he gets agitated. I am the one who gets yelled at while other customers walk by us, staring at us in disbelief because it doesn’t bother him. I am the one who is up all night while he is in that mood yelling about anything and everything and then I have to get ready for work at 4 am after I have been yelled at all night. I make sure he is NOT on of YOUR “22 a day statistic” list. I asked who was determining this reassessment and was told, “by professionals”. I am a professional too. I am a nurse. I work in an area of a hospital that see couples come in. When I see couples where one may have an issue, that is only the crust of the bread (so to speak). I don’t see it all. When we have our quarterly meeting or when he see his doctors, they don’t see the whole thing. But, yet, these “professionals” can see what happens in our daily lives? We walk on eggshells with these people. I have been married 15 1/2 years to this vet. According to his daughters, he was not like this before he went to IRAQ. I have only had to call the CRISIS Center one time. They are professionals too, right? When I called, the response I received from them was, “what would you like for us to do?” Seriously?? They are the professionals, I thought they would give me some ideas on how to handle the situation, but they didn’t. Ended up calling 911 and they took him to jail. My family and I kept telling them he needed to go to the VA. But, they felt differently, maybe if the CRISIS center told them that, they may have taken him there. I don’t know. The amount of money from the Caregiver Program I received certainly does not cover the pain and anguish that me as a Caregiver go through. But, I feel like they want us to do there job for them. I was told I could stay in the Caregiver Program, but why? This shouldn’t be my job to do these things for him. I feel this is a way for them to save money, so let’s take all these people off the program who doesn’t meet the new criteria. I feel that someone should take over my job at keeping him safe, getting his nutrition, making sure he takes his medicine and refills his meds as needed. I also feel that I should just call the CRISIS line every time he gets in that mood so they can take him to the VA. You don’t want me to de-esculate the issue or keep him safe, you can pay the “professionals” at the VA hospital where it will cost more money. This isn’t all about the money. This should be like a partnership with the VA. Like I said, the pennies that I get paid doesn’t come near the feeling you have when you are being yelled at all night long for something you think is trivial, but to a vet who has PTSD, it’s not. Please, walk in our shoes for a day. Also, please remember, I didn’t break him, the military did. I’m just picking up the pieces and trying to keep them together.
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