"I just think it's very unfair, the inequity of it all. You give up so much," Donna Joyner said of the wall put up by Congress at the Department of Veterans Affairs that has separated one generation of family caregivers to disabled veterans from another.
Joyner, the wife and caregiver to her husband, triple amputee Vietnam veteran Dennis Joyner, has been among the thousands who are ineligible for training and modest stipends under the VA Comprehensive Assistance for Family Caregivers program that was limited to post-9/11 veterans by a law passed in 2010.
On June 6, President Donald Trump signed the VA Maintaining Systems and Strengthening Integrated Outside Networks Act, or VA Mission Act, which was primarily aimed at expanding private health care options through the VA.
As part of the Mission Act, the caregivers program was expanded to eliminate the 9/11 limitation in stages and eventually extend the benefit to veterans of all eras.
The first expansion would go to caregivers of veterans who suffered severe, service-connected wounds or injuries before May 1975, when the Vietnam War ended for the U.S.
At the White House Rose Garden signing ceremony, Trump said, "There's never been anything like this in the history of the VA."
"It's a no-brainer," former Marine Gunnery Sgt. Brian T. Meyer, who was wounded in 2011 and currently receives about $2,700 monthly in caregiver assistance, said of the expansion.
"Just look at the Vietnam veterans, the way they were treated. There's a lot of guilt there," said Meyer, who lost his right leg above the knee and the thumb, index finger and middle finger of his right hand to an improvised explosive device in Afghanistan.
A Personal Issue
At his June 27 confirmation hearing to become the next VA secretary, Robert Wilkie, 55, of North Carolina, suggested that ensuring caregivers' needs are met is personal for him.
"My own life changed when my father returned from his second combat tour in Vietnam," said Wilkie, who had been undersecretary of defense for personnel and readiness when he was moved over in March to become acting secretary of the VA after the firing of Dr. David Shulkin.
"I was seven when we received a message that he had been terribly wounded," Wilkie said in his prepared statement. "When he came home after a year in military hospitals, he weighed less than half of what he did when he left us. I watched his agonizing recovery, and that experience was on my mind when I was asked to come to the VA."
Wilkie's father, retired Army Lt. Col. Robert Leon Wilkie Sr., died last year. His decorations included three Purple Hearts, four Bronze Stars (one with a "V" device for valor in combat), four Air Medals, the Distinguished Flying Cross, the senior Parachutist Badge and the Ranger tab.
Wilkie, whose nomination is expected to be confirmed by the full Senate later this month, will preside over the expansion of a caregivers program that has a troubled past and continuing problems with eligibility and oversight.
The problems with the existing program, and major concerns with the VA's ability to fund and administer an expansion, were spelled out before the new bill was passed by one of its most ardent supporters, Rep. Phil Roe, R-Tennessee, chairman of the House Veterans Affairs Committee.
"There has been miscommunication, confusion, and frustration from veterans, caregivers, and VA employees alike concerning practically every aspect of this program -- from eligibility determinations to clinical appeals to revocations and more," Roe said, in a statement published by the American Legion.
"To the department's credit, they are well aware of those issues and have taken steps in the last year to address them," he continued. "I support expanding the Family Caregiver Program to pre-9/11 veterans, but I believe that before doing so we must ensure the program is working as intended."
However, "no veteran and no caregiver from any generation is well-served by having access in name only to a program that has the deficits this one does and is as ill-prepared as this one is to accept a sudden influx of new beneficiaries with complex, widely different caregiving needs from those veterans the program is currently serving," Roe said.
Despite his misgivings, Roe joined with Sen. Johnny Isakson, R-Georgia, chairman of the Senate Veterans Affairs Committee, in marshaling support for a new version of the VA Mission Act that had failed in the previous Congress.
By a vote of 345-70 in the House, and 92-5 in the Senate, the bill with the caregivers program expansion included passed in May.
First Hurdle: Funding
Putting the bill into effect will be the task of Meg Kabat, a licensed social worker with a degree in psychology and a masters in social work from Catholic University. She began working in the VA's Caregiver Support Program in 2011 and became national director in 2016.
The first challenge for expanding the program is funding. Right now, there isn't any. The cost estimate on the Senate side is about $55 billion for the entire VA Mission Act over five years, but Senate appropriators and the White House are locked in a dispute over how to pay for it.
"I think that is a true statement -- that there is no funding to do this particular expansion" of the caregiver program, Kabat told Military.com in a phone interview. "That's going to be a challenge for us over the next several months, to really work with Congress and identify where that money is going to come from."
The cost estimates for the expanded program "are still somewhat fluid," she said, but "at this point, we anticipate the cost to be about $3 billion annually" when the program is fully in place in four years.
Currently, about 21,000 veterans and their caregivers are in the program. Kabat expects that number to rise to about 24,000 by the end of this fiscal year. The first stage of the expansion, to include veterans disabled before May 1975, is anticipated to take about two years, she said.
The second stage to expand caregiver benefits to veterans of all eras will take another two years, Kabat said.
When the program is fully implemented, the caregiver program will serve about 150,000 veterans and their families, she added.
The Tortured History of Caregiver Programs
Failed efforts by the government to provide assistance to caregivers, both civilian and military, trace back to the unsuccessful advocacy of first lady Eleanor Roosevelt in the 1930s.
One of the arguments in favor of caregiver assistance has always been that it is a cost-saver, enabling the severely disabled to remain at home rather than relying on more expensive hospital or nursing home care, but the budget hawks have held sway.
At the end of President Bill Clinton's second term, first lady Hillary Clinton tried again by advocating for a $6.7 billion bill to give tax credits and long-term-care insurance to caregivers.
"Everyone knows that there is not a substitute for families being able to care for their loved ones," Hillary Clinton said at the time. "But we sometimes forget that caregivers also need care. They too carry an enormous burden."
The proposed legislation went nowhere.
For years, the major veterans service organizations (VSOs) pressed for caregivers assistance, and they finally gained traction with the support of first lady Michelle Obama, who made caregivers part of her "Joining Forces" initiative for the military with Jill Biden, wife of then-Vice President Joe Biden.
"These are men, women and children who will do anything for their loved ones," Mrs. Obama said of the caregivers. "Spouses who put their lives and careers on hold; moms and dads who spring into action; children who put on a brave face."
On May 5, 2010, President Barack Obama signed the Caregivers and Veterans Omnibus Health Services Act directing the VA to begin the program for post-9/11 veterans and their caregivers.
Standing with Michelle Obama behind the president was Ted Wade, 32, who lost his right arm and sustained a traumatic brain injury in a roadside bombing in Iraq in 2004 while serving with the 82nd Airborne Division.
Wade grasped the hand of his wife, Sarah, a tireless advocate for her husband and all veterans and their caregivers at countless congressional hearings and conferences.
"These caregivers put their own lives on hold, their own careers and dreams aside, to care for a loved one. They do it every day around the clock," Obama said. "As Sarah can tell you, it's hard physically and it's hard emotionally. It's certainly hard financially."
'A Really Scary Irony'
It stayed hard for Sarah and Ted Wade. They were initially ruled ineligible for the program.
Sarah Wade told Stars and Stripes, "I stood next to the president when he signed this bill. He gave me a kiss afterward. For us not to qualify for the benefits now, it's a really scary irony.
"The VA can't offer me any more support now than they could in November 2004, when my husband left the hospital. For once, I had it in my head that this year would be different. Now it might be another year before we see anything. And my initial thought was, 'I don't know if I can make it another year,' " she said.
The Wades' experience was typical as the VA struggled to define the eligibility rules and set up a training program for the caregivers as required by the bill. The deadline for putting the program into effect was January 2011, but the department blew the deadline by six months.
The training program was eventually contracted out to Easter Seals, and the first stipend checks to caregivers did not go out until July 2011.
Then-VA Secretary Eric Shinseki apologized for the bureaucratic delays, saying, "This is a long-awaited day for many family caregivers" as he sent out the first checks.
"I am proud VA can now offer direct support to the loved ones who give the veterans we serve a greater quality of life by allowing them to remain at home surrounded by family and friends," he said.
Shinseki's vote of confidence was premature. At a hearing of the House Veterans Affairs Health Subcommittee later in 2011, caregivers praised the intents and goals of the program while pointing to their frustration at its implementation.
Debbie Schulz, of Friendswood, Texas, described at the hearing her surreal experience in applying for the program. After listening to her account, the panel of lawmakers and VA officials agreed that it was advisable for VA "care support coordinators" to know the difference between a severely wounded veteran and his mother before going on a home inspection.
Schulz said a clueless VA "care support coordinator" came to her house outside Houston for the inspection, knowing nothing of the family's medical history, and asked if she was the wounded veteran.
"I was like, 'Noooo,' " Schulz said. The veteran was her son, Marine Lance Cpl. Steven K. Schulz, who was 20 years old and on his second tour in Iraq when he suffered a traumatic brain injury and lost sight in his right eye in the 2005 Battle of Fallujah.
The care coordinator "clearly had not read any medical records pertaining to this home visit," Schulz told the subcommittee. "This kind of inept assessing did not inspire confidence."
Crystal Nicely, wife of quadruple amputee Marine Cpl. Todd Nicely, told a later hearing of the Senate Veterans Affairs Committee that she had trouble applying to the program and getting the stipend checks after she did.
"I have gotten hardly any information on how to participate. There has been a similar lack of information about a variety of VA and other benefits," she said.
The benefits that did come were sometimes cut off without explanation, Nicely added.
"Periodically, the stipends stop. I do not know why this occurs, especially as it is difficult to get a clear and definitive answer, but we need help," she said.
The VA estimates that about 90 percent of the caregivers in the program are wives and mothers. Currently, the monthly stipends are broken down into three tiers, depending on the severity of the veteran's disability, the amount of time devoted to caregiving, and the area in which the veteran lives, Kabat said.
On average, the monthly stipend is about $690 for Tier One; about $1,600 for Tier Two; and about $2,700 for Tier Three, she said.
Kabat said the VA is required to report to Congress by Sept. 4 on the planning for the first stage of the expansion.
In October, the VA will begin work on the information technology (IT) systems required for the expansion, and new applications for the caregiver program are expected to begin in early 2020, she added.
Vietnam Vets, Caregivers Finally Catch a Break
"I love him, so it never seemed like work to me," Jean Sursely said of her caregiver support for her husband, Jim. "[But] you can always use a little financial help."
"It will be a help to us," she said of the expansion of caregiver benefits to Vietnam-era veterans.
"It would be nice to do certain things Jim would need," she said, but she is more concerned about those "who are in a worse position than us. It would be a wonderful thing to help them out."
"I couldn't do it without her," Jim Sursely said of Jean. "I couldn't survive day in and day out without her help. "There's a lot of things around the house that you just can't get done, no matter how well you try to adapt the house to the wheelchair. And just trying to get dressed -- try doing that with one arm."
Sursely was a staff sergeant with F Troop, 17th Armored Cavalry, 19th Light Infantry Brigade of the Americal Division when his unit set up south of Danang on Jan. 11, 1969. He was about 45 days away from the end of his tour.
He was checking the perimeter when he tripped a mine. He lost both legs and his left arm below the elbow.
After his discharge, Sursely earned a business administration degree from Seminole University of Central Florida and a real estate license in 1978. He worked in real estate for 40 years.
Sursely also was active with the Disabled American Veterans (DAV). He was national commander in 2004-2005, and lobbied aggressively and unsuccessfully for inclusion of veterans of all eras in the original caregivers act that was limited to post-9/11 veterans.
"We had to let the bill go through with the promise that it would be expanded within a short period of time," he said. "Well, we all know how that works. A lot of vets have fallen by the wayside since then.
"It bothered me tremendously at the time," Sursely said, but added it would have been worse if they had held the line and ended up with nothing.
“We have never stopped trying. Every year, we push for caregiver expansion, but I feel bad about the people who've been waiting these past eight years."
The expansion comes too late for Delphine Metcalf-Foster, the current national commander of the DAV and a retired Army first sergeant. She told the DAV's national convention earlier this year, "It is unthinkable that an arbitrary date defines whose service is more deserving of life-changing benefits in the eyes of the law."
She spoke of her late husband, Jimmy, also a veteran, and his struggle with dementia and Alzheimer's.
"We had a wonderful life and made it through tough times," she said. "We did the best we could with limited resources while his needs continued to grow more expensive. It broke my heart to move him into a long-care setting. I can't begin to tell you how valuable it would have been to me" to have caregiver benefits. "It also would have been what he wanted."
Joyner, the triple amputee, said he would likely be unable to remain at home if not for wife Donna.
"Yeah, I can do things, but you need someone around. If it hadn't been for her, I'd probably have to go to the nursing home," he said. "She has to do a lot of things around the house I just physically can't do. She's accepted me as the man that I am. She's never known me when I wasn't missing three limbs."
Joyner was drafted into the Army and was serving with the 9th Infantry when he tripped a mine on June 20, 1969. He lost both legs and his right arm. After his discharge, Joyner, originally from Apollo, Pennsylvania, earned a degree from Robert Morris University in Pittsburgh.
He later worked in juvenile justice for the Westmoreland County, Pennsylvania, probation office.
"We're different; we're unique in our physical needs," Joyner said of himself and other severely disabled veterans, and their need for caregivers. "How do you get showered? What can you reach, what can't you reach? When you want to go somewhere, it takes a lot of planning ahead."
As a post-9/11 veteran, Meyer, 36, of Fallbrook, California, north of San Diego, receives about $2,700 monthly in caregiver benefits, but he can take exception to how it is administered.
Meyer, the former gunnery sergeant, had more than 12 years in the Marines and was serving as an Explosive Ordnance Demolition specialist with the 1st EOD Company in support of Third Battalion, Fifth Marines, when he lost his right leg above the knee and three fingers on his right hand while trying to defuse an improvised explosive device.
The incident occurred on March 14, 2011, in the Sangin area of Afghanistan's southwestern Helmand province. "It is what it is. I knew what I was getting myself into," he said.
Meyer is an advocate for the Semper Fi Fund, which provides resources to post-9/11 veterans wounded in combat. He also is an avid hunter and has learned to shoot left-handed.
Meyer said he can get annoyed when care coordinators occasionally visit and ask the questions required by law, such as "Do you have firearms in the house?"
He said he responds: "I'm not going to lie to you. I'm just not going to answer your question."