Thousands of veterans injured in the line of duty before Sept. 11, 2001, will receive their long-awaited caregiver benefits as early as this summer, when the Department of Veterans Affairs (VA) is expected to complete a project in support of the expansion and begin taking applications.
"The plan is for us to launch expansion the summer of 2020,” says Lisa Pape, deputy chief officer of patient care services for the VA. “We're waiting to get our IT system built and working as well as we can. So, we can then launch to expand for all of those caregivers currently not being seen."
The VA's aging computer systems have been a roadblock to expanding the Program of Comprehensive Assistance for Family Caregivers to include veterans injured — mentally or physically — in the line of duty before Sept. 11, 2001. Legislation called the MISSION Act was passed in May 2018 to broaden the caregiving to veterans of all eras.
Help for caregivers
A veteran can appoint a primary caregiver and up to two secondary caregivers. Benefits vary but include:
Access to health care benefits through the Civilian Health and Medical Program (CHAMPVA)
Caregiver education and training
Financial assistance, lodging and travel expenses for a caregiver when traveling with the veteran to receive care
Mental health services and counseling
A monthly stipend
Up to 30 days of respite care a year
The first phase of the expansion will include veterans injured in the line of duty on or before May 7, 1975. After two years, the program will include eligible veterans injured between May 7, 1975, and Sept. 10, 2001.
"We know that with our aging veteran population that people will need caregiving,” Pape says. “And our caregivers will need intervention or help. So, without the MISSION Act we couldn't do it."
The VA is now in the process of hiring almost 700 new employees.
"We're looking to hire social workers, psychologists, nurses, doctors and some support staff,” Pape says.
Other portions of the Mission Act brought greater urgent care and private health options to veterans of all eras in June 2019. However, the New York Times has reported that the program already has insufficient money to support the network mandated in the law.
Vets left behind
Yet, not all veterans will be eligible for the added caregiver assistance despite having an ailment that the VA acknowledges is related to their military service.
In 2008, a VA-commissioned study found that veterans are 50 percent more likely to have amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease, than non-veterans. Later, ALS was made a presumptive compensable illness, meaning veterans are not required to prove when they acquired the disease.
More than 4,000 veterans received clinical services from the Veterans Health Administration during the 2019 fiscal year. This estimate does not include veterans who received services before 2019 or those not enrolled in the VA system.
"It's taken a long time for the VA to catch up to what the needs are for these veterans,” says Mary Ward of Wilmington, North Carolina. She cares for her 65-year-old husband, Tom Ward, who served in the Marine Corps and now has ALS.
"If I had a wish list — what do you want for Christmas? — I would like to have a subject-matter expert case manager at the VA who could track down the things that I need for Tom,” she says.
Ward, an Elizabeth Dole Foundation fellow and host of This Caregiver Life podcast, noted that her husband falls in an interesting dichotomy as a pre-Sept. 11 veteran with a post-Sept. 11 diagnosis.
"We shouldn't have to spend valuable time and energy ensuring that our veteran receives the care and services they need,” says Lara Garey of Austin, Texas. She is also an Elizabeth Dole fellow and caregiver for her 51-year-old husband Tom Garey, an Air Force veteran with ALS.
"We need to spend that precious time … making those memories that will carry us over after they pass,” she says. “We all know what the end result of this disease is: The veteran will die."
Despite both husbands serving during wartime, Ward and Garey say they don't believe their cases will be included in the caregiving expansion because ALS is a disease and not an injury.
When AARP asked whether a veteran with ALS would be eligible for the expanded caregiving benefit, a VA spokeswoman said the department “can't comment on regulations until they are made public” and eligibility is determined case by case.
Tiered system is complicated
Still others believe that the VA should offer caregiver benefits to all veterans regardless of injury.
Patti Shea of Tallahassee, Florida, has been a caregiver for her 80-year-old father, James Shea, who has dementia and chronic obstructive pulmonary disease. He served in the Marine Corps in Vietnam before the full campaign and therefore is ineligible for full aid and attendance benefits, a program that provides an additional pension.
She started caring for him in October 2011 when he didn't need constant help but in the past few years he has required “100 percent care,” she says.
In terms of what the veterans are eligible for, the VA benefits system is “very tiered,” she says. The benefits her father receives still include one month of respite a year, home health nurses and a home improvement grant.
Yet, if her father had qualified for aid and attendance, “the next tier up,” he would receive the nursing hours she says he needs.
"Fifteen hours a week is not a lot for somebody who is 100 percent dependent on everything,” Shea says.
"Any plan that will extend benefits to the caregivers is something we need more of,” she says. “We need to look out for the caregivers, especially the ones who are keeping their loved ones at home, because they're saving taxpayers tons of money."
Shea also cares for her mom, who has developed rheumatoid arthritis since the onset of her father's conditions.
"Decision-makers don't understand the ripple effect it (caregiving) has on caregivers,” she says. “Our social life suffers, our work life suffers, our mental health suffers, our bodies suffer.
"When my dad is having a really bad day and is yelling at me, it affects you,” Shea says. “It's hard to clear it out of your brain because this is my dad. My dad had never raised his voice at me once."
Veterans who don't qualify for the expansion can apply for the Program of General Caregiver Support Services, which includes education, peer mentoring, self-care courses and training. It is available for veterans of any era, regardless of illness or injury, who are enrolled for care in the Veterans Health Administration.
