Concerned Caregivers Fight To Have A Voice
Concerned caregivers tired of being pushed around by the VA Caregiver Program are fighting back against a system that has left them isolated, disenfranchised, and unrepresented.
Last week, a group of caregivers providing in-home care to their severely disabled veteran husbands contacted me with concerns about the $1.9 billion VA Caregiver Program. These are mainly legacy caregivers with a range of involvement in the program for many years.
While the program, with its nonprofit and private sector supporters, seems to advance the benefits received of all caregivers, some caregivers do not agree – – many feeling they are without a voice while caught in the agency’s most scandalous purge to date.
If purged, many of these caregivers, and the veterans they help, would be immediately placed in a financial hardship that could ruin families and end dreams, all at the click of a bureaucrat’s mouse button.
And this isn’t just about money. Veterans have tragically committed suicide after their caregivers received discharge notices from the agency.
What does all this mean?
The Richard Leonard Show Starts Coverage Of Caregiver Issues
Shortly after getting contacted by the caregivers, I contacted Richard Leonard to see if he would be willing to start covering the VA Caregiver Program issues on his show.
He was willing.
(Information caregivers provided was the primary source of data talked about on The Richard Leonard Show that aired last Sunday on Rumble.)
This show is where things started for me in covering this caregiver matter, publicly.
Continued research and discussions with the caregivers has revealed many unanswered questions as well as clarifications, corrections, and other bits of information streaming in from VA Public Affairs as of today’s article.
Leonard has committed to ongoing coverage of the matter as it evolves. Read on to learn more about what is being uncovered and to learn more about two of the caregivers able to comment publicly at this time.
RELATED: PACT Act – Can VA Fight Off Future Backlog?
About VA Caregiver Program
There is a lot going on within VA about its Caregiver Program. What follows is a high level and recent issue caregivers are working through.
Many caregivers sacrificed their careers (and Social Security credits) to provide in-home care to their husbands, wives, or loved ones. VA through the Caregiver Program has agreed to compensate caregivers for this sacrifice by paying a monthly stipend of $600 to $3,000.
This is significantly less than VA would be obligated to pay for in-home care through a private business to provide the same services, which ranges from $6,000 to $10,000 (or more) for full time in-home care or residency full time in an adult living facility.
As recently as March 2022, VA was caught rolling out a purge plan that could have discharged up to 90 percent of caregivers from the program after promising policy changes would only reduce ranks by 30 percent, which is still a large number.
RELATED: VA Secretary Promises To Stop Purge Of Caregivers
There are many players involved in advancing the caregiver mission, but the information received by caregivers from VA following a FOIA suggests more can be done. The documents and correspondence contained emails between VA officials and at least one nonprofit. That nonprofit’s mission is aimed to increase awareness of and access to caregiver benefits and support.
VA And The Elizabeth Dole Foundation
One such nonprofit is the Elizabeth Dole Foundation (EDF) founded by former Senator Elizabeth Dole in 2012, three years after her single term as a US Senator ended. To provide context, EDF is widely considered a representative or voice of the caregiver community.
Its founder, Elizabeth Dole, a career politician, has maintained involvement not only in the organization she founded but also as the chair of VA’s federal advisory committee (FAC), titled Veterans’ Family, Caregiver, and Survivor Advisory Committee. Dole’s awareness campaign through EDF called Campaign for Inclusive Care recommended VA create a FAC. Dole reached out directly to former Secretary David Shulkin, MD, who supported the idea. EDF staff, VA staff, and key stakeholders provided guidance for the campaign.
Since 2017, Dole has served as a FAC member and chair of the committee. Her work, and the work of EDF, has resulted in transformative policy and regulatory changes impacting all caregivers.
VA has entered into at least one Memorandum of Understanding with EDF with Elizabeth Dole as the signatory, and she has been allowed to maintain her position as chair of the FAC despite the standard two-year time limit for members noted on the FAC’s charter. Only an act of the Secretary of Veterans Affairs can waive the two-year time limit suggesting she has received a favorable review by at least three secretaries: David Shulkin, Robert Wilkie, and current secretary Denis McDonough.
Her accomplishments do not end there for the caregiver movement. VA named a Center of Excellence after her titled The Elizabeth Dole Center of Excellence for Veteran and Caregiver Research. This year, lawmakers named two bills after her that we will simply refer to as the Elizabeth Dole Act later:
- S.3854 – Elizabeth Dole Home Care Act
- H.R.6823 – Elizabeth Dole Home and Community Based Services for Veterans and Caregivers Act of 2022
If you mention the Caregiver Program to a Washington DC insider, they will probably think of Elizabeth Dole and the organization she founded, EDF.
Caregivers Question Program Developments By VA And EDF
Despite what appears to be a lengthy resume and rapport built with VA, lawmakers, and the caregiver community, some caregivers are dissatisfied with their treatment by the agency and Dole’s organization EDF.
While many caregivers, including those selected to become Dole Fellows, are likely satisfied with EDF and the VA Caregiver Program, that does not speak for all caregivers. This includes those who contacted me for help.
What kind of help?
They want help to raise awareness of their concerns about how the agency is performing its duties under the existing program criteria, and how those duties will change if the the Elizabeth Dole Act is signed into law.
The current bill has a significant amount of support and may go to a vote soon.
Before it becomes law, these caregivers believe it is vital that all caregivers have a seat at the table, or, at least that lawmakers understand VA and EDF does not speak for everyone affected.
What are the caregivers worried about? I mean, if more Americans, lawmakers and private sector companies are aware of the Caregiver Program, isn’t that a good thing?
That is not enough, according to these caregivers, as the Elizabeth Dole Act may create significant turbulence for the same caregivers it purports to help.
Caregivers are worried their veterans will be forced to use private sector support funded by VA and third parties rather than continue to receive the same funded support they receive from caregivers in the home. There appears little has been written about the longterm effects of the legislation on current caregivers once the headlines and newsprint move on to other topics of the day.
These caregivers, through their research and FOIA’d records, believe the Elizabeth Dole Act will, if signed into law, redirect VA monies currently used as stipends for caregivers to EDF and its private sector partners. These partners would then provide the services and care in-home or within adult care facilities that would serve to displace the services provided by current caregivers.
One such caregiver, Robin Stitt, has been in the Caregiver Program for four years. If her concerns materialize about the Elizabeth Dole Act, her husband “would not get the same level of personalized care” she provides. The Kansas couple prefers the current model.
When asked if she feels EDF represents her, Stitt responded, “Absolutely not.” She continued, “Even at the Congressional hearing on the recent purge, although the caregivers who testified made excellent points, they were all former Dole Fellow alumni.” Stitt believes Congress would have benefited from hearing testimony from a more diverse witness panel.
Kristie Sheets, another caregiver, has repeatedly taken to social media to express concerns but has experienced pushback from EDF, and its EDF Fellows, who are also caregivers.
“I have been asking how EDF still supports VA leadership despite the third purge. And I am afraid it is not going to be the last,” said Sheets.
“VA has paused the discharges for legacy caregivers, but the expansion in October will still put our vulnerable veterans through the dehumanizing assessments that VA leadership created.”
When asked what EDF did about the dehumanizing assessments, Sheets said, “EDF hasn’t done enough.” She continued, “Given EDF’s seat at the table, why are they not doing more to stop this?”
Steve Schwab, CEO of EDF, recently cited VA Deputy Secretary Donald Remy as saying, “He [Remy] wants to hear the good, the bad, and the ugly. Maybe even the bad and the ugly a little bit more.”
For those of you reading this who may be cyber sleuths, this quote was in a video at the 7th Annual National Convening of the Elizabeth Dole Foundation, co-hosted by the Department of Veterans Affairs.
Sheets and Stitt have agreed to be interviewed about their experience and concerns to be aired on The Richard Leonard Show. Remy will certainly get a dose of the bad and the ugly of the Caregiver Program if he tunes in.
RELATED: Gulf War Illness Caused By Sarin Gas Says Researcher
Elizabeth Dole is the wife of recently deceased former Senator Bob Dole, of Kansas. Elizabeth Dole served in the US Senate for North Carolina from 2003 to 2009. She has an impressive list of professional accomplishments that include CEO of Red Cross, Secretary of Labor under former President George HW Bush and Secretary of Transportation under former President Ronald Reagan.
Note: In a podcast by The Richard Leonard Show (see top) that aired last Sunday, former Senator Elizabeth Dole was referenced as a current sitting senator by mistake. The EDF website and official FAC meeting minutes failed to follow Associated Press guidance for writers where a person no longer in office by addressing them as “former” before the former title.
To avoid confusion, I use the best practice to reference former holders of public office as “former” before the title if no longer in office in this article.
The VA Caregiver Program has the funding to support caregivers and the veterans they serve. The $1.9 billion budget has continued to grow. Awareness of the issues caregivers face has garnered significant support from lawmakers and policymakers through VA’s partnership with EDF.
Getting the word out is a good thing, and that is a big part of any public service campaign. But, the fight does not end when the lights go out after each gala. That is where the rubber meets the road.
Fortunately, the VA Dep Sec wants to hear more about the bad and ugly of the plight caregivers are facing on a daily basis. We aim to provide just that without the big PR budget VA and EDF enjoy.
I said it in my testimony to the Democratic Platform Committee in 2012, and I will say it again here:
“Veterans win when politicians understand the promise of a square deal has become a mere premise of one. What used to work doesn’t anymore, and soldiers are getting ambushed after discharge by a VA benefits system posing as allies.”
“It is as if we are asking, ‘Will you pretend with us that we will keep our promise to you?'”
It was relevant in 2012. It is still sadly relevant in 2022.
Our nation’s leaders need to pay more attention to grass roots America, and certainly more than to its group-think thought leaders in the Beltway.
Veterans will be better off when our leaders pay attention to us.
The proposed legislation, as it appears, does concern many caregivers including those that contacted me. While VA and EDF may not agree with what these caregivers believe or say, the caregivers’ perception of how the VA and EDF partnership has evolved is concerning.
The current Elizabeth Dole Act, as it is written, has created concerns about funding and the future for these caregivers. It will likely create additional budgetary burdens on VA, and it may also result in greater privatization of VA’s federal workforce under the watchful eye of the Biden Administration.
Americans want veterans and their caregivers to receive the maximum amount of support and benefits needed to offset the tremendous sacrifices these families endure as a consequence of war.
It is the hope of this publication, DisabledVeterans[dot]Org, that as many disenfranchised caregivers as possible have a voice and a seat at the table, even if that seat is not under the EDF umbrella.
Documents from the FOIA cited in the show will be released shortly.
EDF / VA Caregiver Program Challenge
Richard Leonard invites Steve Schwab of EDF, Meg Kabat of VA Caregiver Program, or any other official with knowledge to come on his show to discuss the concerns of these caregivers and address any questions, corrections, or challenges they have to the information provided or conveyed on the show.
American government is a vicious and cruel killing machine. When there is nobody overseas to feed it…it turns its attention to people in this country. If you volunteer to feed yourself to it then you can’t complain about the vile inhumanities that you suffer as a result. After all, you should know it’s nature by now. For every figurative and literal dollar you give it… it’s gonna demand a hundred back. Therefore get benefits and immigrate. There are many other nations that behave much better, more civilized, less threat to humanity etc.
From 2016-2020, incidents of denial of care, abuse, and civil rights violations numbered as many as the stars in the sky and grains of sand on the beach. When will be justice for this and all the people who the VA has deliberately killed??? When will they be arrested????
VA is fiscally conservative folks! If you vote for people who claim to be “fiscally conservative” then you get what you ask for. I also noticed that they cut psychiatric and other doctors pay around 2017 by upwards of 75K a year! I know at least one who left. Then as soon as Biden got into office their pay went back up. Go to a federal pay website and you’ll see what I mean. You can see what doctors are being paid. VA is not transparent and they knock off vets one by one. Big parties are had when there is death.
Thanks for this article Ben. I undoubtedly will need a caregiver in the not so distant future do to my multiple overlapping service connected conditions.
“Veterans win when politicians understand the promise of a square deal has become a mere premise of one. What used to work doesn’t anymore, and soldiers are getting ambushed after discharge by a VA benefits system posing as allies.”
The VA partners with a lot of non-profits to strike that pose as allies for Veterans while cutting back benefits simultaneously. The VA partnerships with non profits usually has a price tag that comes in the form of VA/Fed grant money (sometimes funneled through the maze of other non profits.).
According to the VA, 65% of Veterans enrolled in the VA system are age 65 and older.
Currently Vietnam Era Veterans are the largest cohort of Veterans alive today.
From a Washington Post article from last year: “More than 8 million people served in uniform during Vietnam and those who are alive are typically in their 60s and 70s. The U.S. Department of Veterans Affairs estimates that 530 Vietnam veterans die every day.”
Thanks again Chicago for your perspective. It is important to to reiterate how important the grass roots efforts by people/groups like Benjamin Krause are to speaking out on behalf of Veterans.
530 Vietnam Vets dying every day is an extremely important point to make here. Its all about the numbers as far as the VA is concerned. Thats how the VA sees us, as numbers. Thank your your service, now hurry up and die. Your care costs too much!
Got Your 6
Shameful. Written off is what they did years ago to Veterans. They actively try to kill Veterans especially if they have a rating above 50 percent. Why, because that paycheck goes back into their corrupt system and at the end of the fiscal year any monies left over are doled out in UN-deserved bonuses.
The end is near and they couldn’t be happier. September 30th can’t come fast enough for the EVIL MONSTERS.
Oct 1st 2022 it is estimated that they have $1.6 billion dollars left over to divide amongst themselves. Money that did not go to Veteran Care.
I tried toget into family care program but was denied for they said i can perform adl’s. But i need help in protection, written instruction. Etc. I tried to go to patient. Advocate to get help in giving them more information but they did not know how to do it so they told me to get vso. That has taken a while and when i gave them my information they said that we shouldnt do it for they would review my disability which is 100%. T&p. Unemployable. So i will do it myself. But i have brain damage, deizures from my disabilities and other problems that are trying to be adfressed.
All of my teeth are coming out because of mecications, have eye problems that are not i proving from fall dufing seizure i broke my eye socket i. 2 places, etc. they couldnt read the word or when i got evaluated. I clearly qualify and my family has to do so much fof me all of the time. I am not even allowed to drive, cook, go to store and lay in bed over 20 hours a day. Why is it so hard for others to understand, i have lot of prolms even typing this. I use to do much. I am only allowed to do anything without setting a times for 15 minutes. In fear of yet another seizure for me tal or physical stress has caused numerous grand mal seizures and broken bones.
My wife has taken a job to work from home reviewing disability claims for government. I got my federal disability i. Less then a month but has turned into
Retirement when i reached 65. Now at 73 it is hard to have a rewarding life at all, for i had to even give up fishing. Because o seizures. James alto
Benjamin, I watched the video you inserted into this article. Thanks for the genuine back and forth conversation. I agree. Question is why? I have been asking this same question over and over. How much money do these people need? I too am sick of veterans and non veterans being used as pawns. Let me speak about what I have witnessed in regards to VA care, VA Community care, and just the whole system. “Veterans getting ambushed by the VA posing as Allie’s.” Ben this is everywhere. I mean not just with the VA but everywhere. I was in the Malcolm Randall VA from 2000 until 2015 basically. I have been gone ever since I was denied Chapter 31. However I am not a Caregiver under the VA system and I am not being cared for under the VA system. Good question? What do they want with all this data? These people with their obsession with finding ways to constantly collect data to surveil people in my opinion shows that they are not well themselves. Benjamin, what are they looking for? Veterans just desire decent care and be left alone to live their lives however they choose. Although this is NOT what has been happening. Ben the shit that I have eaten from the Department of Veterans Affairs has truly been a disgrace. Although I did not deserve any of their actions. As for the Community care, Ben there is no transparency. What I witnessed turned my stomach. I have discussed this on your blog before. One of my uncles is near my age and he was a veteran. He died in 2018. I watched the VA dismantle him over the years. Wolves wearing sheep skin clothing care. I had to help between communicating with the VA and my large family. Benjamin it was a constant fight with me trying to follow what the VA was doing or not doing when it involved my uncle. We needed to know so the family could prepare. However Ben they were closed mouth. The VA is closed mouth with everything including when they are sending veterans to medical centers. Veterans arrive at hospitals and the hospitals do not have medical records on veterans they receive. I know because I had to provide information to the attending physicians. The VA and nursing home sent nothing. If you have wondered what happens to the medical supplies, the healthcare industry sends out tons to the homes where veterans are living. This is both private sector and VA. So much waste Benjamin. No wonder the VA needs a billions of dollars budgets. And Benjamin the VA does not take medical supplies back. I bet I took 3 car trunk loads to the police station incinerator. And a nurse who worked part time for a thrift shop went through the rest to still be used in the public. When both of you discussed where is the money going? Vendors such as Big Pharma and tech companies and others to settle political differences from the past. The physicians and nurses are all bandaids of the status quo. Government healthcare is not medical care at all. The caregivers who are standing up in my opinion are correct about what they are perceiving about the money being funneled to the private sector to see about veterans. It points to managerial class vs the people. Veterans will not receive a dime and will not receive decent care. VA home care in my opinion are criminal. Here is why. Of course though the VA does this to all veterans regardless if in home care or not. Overmedicate to control the veterans to disable them even more. It is exactly what China is doing now. I see all of it as wrong and inhumane. How much money does the VA need? They double bill in the home care to a private sector insurance company. They will just show up at the location to claim they were there so they can double bill even though they were not providing the services. People I run into say the whole state of the country is sad with what is happening. I will take you back when I was a high school student. One of my best friends in high school died from poor care from the VA. This was 1979. His father had to have both legs amputated due to gangrene. I viewed this many years ago. The VA speciality is infections and abscesses while pretending to deliver care. The non medical care or the wolves wearing sheep skin clothing care contributes many veteran deaths. In reality, many of the veterans could recover and heal to live their lives. But the federal government stands in the way of this over a dollar bill. The federal government does not own anyone. The size of this government needs to be reduced and veterans deserve to be allowed to live their lives with decent care. Veterans deserve to be allowed to make choices for themselves. I am about to open it all up myself head on. If I can assist in anyway, let me know or research something. Best
Typo I meant the father of one of my high school friends died while we in high school due to poor care at the VA. 1979
The system has got to be replaced or changed or something!
Benjamin thank you and Richard again for opening this up.
Following the money Benjamin, around 3 years ago some who was affiliated with the VA mentioned to me that VA types higher up move money under the category of Art. The leadership would move money under this category before awarding a veteran his benefits who has cancer. Many of the people who are in office now need to be thrown out. Keep it moving forward. Let me know if you need a hand into looking into anything. Ultimately, it is against the law for the VA to strip anyone. Alternatives need to happen before this should happen. Due process is a Constitutional Right.
I have been in the program at the highest tier since 2014. However,
something has definitely switched in 2018 and we felt it for sure. As it stand, when the pause is lifted I would be discharged, now keep in mind that my husband is 100% PT and I am also his fiduciary. He does not drive, nor handle or take his meds by himself. He needs continuous Supervision, Instruction, and Protection but this part was not even considered during the functional assessment. We also found a lot of lies and inaccuracies on the blue button on MyHealtheVet. Needless to say, it was already difficult to drag my husband to these VA appointments cause he does not trust the providers due to his paranoia… now it will be even harder. Furthermore, he will never accept someone sent in our home from Dole&friends. The Dole Act smells rotten to me since the first time I read it. A lot of duplications of services that the VA already offers. I don’t understand! As one of pioneers of this program, I can say that thid program was working exactly as intended, until Dole squeezed her way in with the excuse of “helping”. Congressional intent with the Mission Act was to expand the program to pre 9/11 Veterans, and righteously so! Congress never said that the criteria needed to be revised, and a purge needed to happen. They asked to EXPAND and founded this request properly! The budget for 2023 is $1.9 billions (correct me if I am wrong). In my opinion if the VA Inspector General follows the money, he will find out why 90% of legacy are being pushed in the non-paid general program. Veterans and Caregivers have been subjected to unnecessary emotional distress, and so many other violations. This travesty needs to end NOW. I invite everyone to text “GO NODOLEACT to 50409” and follow the prompts to send a letter to your state representatives and ask them to not co-sponsor HR6823!
I just attempted your text advice to 50409 and response was odd: i followed prompts, then I was asked to donate $5.
We were denied caregiver program at our local level, even after multiple medical providers submitted required mountains of paperwork.
It was cited that, I did not qualify because of an amputation. When I tried to correct the person giving me this news; “you must have me confused without someone else, I don’t have an amputation,” she only said, she could do nothing. I had to submit some other paperwork or appeal. My husband who is my caregiver completed forms that were sent to the house; with such poor instructions, that he feels this chaos is designed to discourage anyone from pursuing any further.
We received some other forms, when my husband called, he was told it was an error and since VA was inundated with back claims it will be years. He was told the Washington representatives had not even received any training or in service on how to proceed.
He is fed up with the BS.
Now this phone number to text wants $5. We barely have 2 nickels to rub together.
I don’t know who you have as a phone servicer but the resistbot at 50409 is absolutely free if you have unlimited texts, or cost of the text message depending on your carrier. They might ask for a donation maybe but it is not mandatory. They will send the letter anyway, even if you don’t donate. In alternative you can send an email or letter to your state representatives and ask them to NOT SUPPORT the Dole Act.
I’m a male caregiver, been in the program since 2014 after my wife was medically retired after a suicide attempt and medically evacuated out of theater.
The West Palm Beach VA, not only denied us but put both me and my wife on a in house list for disruptive veterans. This was after I had provided proof of another suicide attempt in 2019, found by our son then 15yr old son hanging, along with pictures of bruises from falls.
I was personally told by Andrea Williams, the Caregiver Program Manager, she couldn’t she my wife’s face, so she didn’t know if it was her legs or her, even had the Assistant Chief of Social work come to my wife’s hospital room at West Palm Beach Va, seen the bruises, this was after my wife’s digestion system stopped working.
I have over a year of emails that was sent to the leadership of VACO, VISN 8 and the West Palm Beach Va.
Fast forward to 2021, the Caregiver program attempted to deny us services that wife has been authorized by Congressional Law.
VACO, VISN 8 and West Palm Beach VA, are very familiar with my our case and my name.
this is heartbreaking, and I believe that another veteran in your area took his life a couple of months ago, after finding out that his wife had been discharged from the cg program. He was a 3 times Purple Heart, survived injuries and multiple deployments, but didn’t survive the VA’s abuses on veterans and their families. So sad. This is why I fight! My husband won’t be next!
Benjamin, all of this is truly disgusting. I am in the middle of washing and drying clothes. I have been here since 6am but arrived and zero dryers were working. Had to wait 2 hours for them to service them. My point is lots to do and at every turn I have a barrier that is due to a failing system that lawmakers continue to kick down the road. DC is absolutely clueless and they do not care. Of course they love chaos. In honesty it just incites veterans and non veterans into fighting and standing up against the status quo.The adversity strengthens the people even more and the DC types do not even realize it. I will return to dive into this article.
EDF nor their fellows do NOT represent me! Other caregivers deserve a seat a the table. What the hell do they even do??? Besides offer a warm handoff to a partnership. NO thanks! Meg Kabat needs to go.
Yes please help all of these veteran caregivers.If someone doesn’t help them ,who will? This back log of Veterans claims is terr. Please help and thank you for letting the concerns of our caregivers and veterans..
I am one of the spouses that did not get qualified because my husband didn’t need it… they said… I am so happy that someone is looking into it. Veterans and their families deserve better!!!
Thank you for cleaning up a lot of items that were misspoken during the podcast. I would like to see the facts/documents/FIOA request that you referenced in the podcast and above.
Mr. Krause, women are also veterans and have caregivers. I myself am one of those veterans who’s husband has taken the caregiver role and is going through the same situations as the husbands who contacted you. Please don’t discriminate.
Hi there, this article is centric to the caregivers who contacted me. I did make an edit above, though, to provide clarity based on your comment.
Mr. Krause, thank you for editing it to be inclusive. I do understand that the original post was because of the caregivers who contacted you. I apologize if I came off harsh, it wasn’t my intention.
In the last 23 years, my wife–who is an eligible VA Caregiver–has been “purged” twice. The most recent time was back around 2010 when the Big Purge Before The All-Time-Fix happened. Since then, we have been “waiting” to be allowed to reapply to the scheme–er, system. First older vets. Then younger vets. Then younger younger vets. Now, as our turn comes up again, we’re going to get **another** “reset”.
It gets a little discouraging. All the time off to take me to appointments. All the extra work to deal with my oxygen machines and tanks, the medication management, and all the orthopaedic crap she has to manage. She has no vacation.
Yes, it could be much worse, obviously. But as noted in the post, isn’t it *supposed* to be a help for me, not a nightmare just to maybe get what I can legally calculate I am legally entitled to, and then out-wait the VA?
To paraphrase what we so often say on this site…delay…suffer…die.
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