In 2016, my husband, Tom, was diagnosed with ALS resulting from his service in the Air Force. As his condition deteriorated, we constantly had to fight with the Department of Veterans Affairs’ (VA) to get the appropriate support in our home so my husband could continue to enjoy movie nights with our family, opening gifts on Christmas morning, concerts, and even our son’s high school graduation—all of which he would have missed if he were in a facility two hours away. It was Tom’s greatest wish to remain in our home and maintain as normal a life as possible in such an abnormal situation. He wanted to be surrounded by the peace and love of his family during the hardest of times. He deserved that choice, and I fought every day to make that possible until he passed away at home just last year.
As a wife, caregiver, and now widow, and as an advocate who has worked with organizations like the Elizabeth Dole Foundation, Paralyzed Veterans of America, and IAM ALS, I know the challenges our family and others face.
Some veterans with complex injuries and illnesses are currently unable to access the VA’s comprehensive suite of clinical support services needed to age in place safely and with well-deserved dignity. This lack of access is due to outdated statutory limitations on VA expenditures for home and community-based services and a lack of an appropriate staffing infrastructure. Without these supports, family caregivers are struggling to honor their loved ones’ wishes to remain in the home, often resulting in negative outcomes for veterans.
As an advocate, I am familiar with many other veterans and their caregivers who have experienced similar struggles when trying to access care. A post-9/11 combat veteran in Arkansas has multiple severe disabilities related to his service and could greatly benefit from Vet Directed Care, a particularly helpful VA program that allows eligible veterans to have a modest budget to pay for services in the home at their discretion. The program has been successfully in place in some VA medical centers for approximately 15 years, but, as with many programs, it is not uniformly available. While efforts are in motion to bring the program to all facilities, it is unclear whether the required staffing will be in place to make it successful.
Fortunately, bipartisan legislation has been introduced in the Senate and House of Representatives to help other families as they navigate the services of the VA. The Elizabeth Dole Home Care Act (H.R. 542) requires the VA to provide certain home and community-based services like Veteran Directed Care to eligible veterans and caregivers at their local VA medical centers and ensures that they are staffed to maximize effectiveness. Most importantly, the legislation allows VA providers, not a mandated funding limitation, to determine the level of necessary support for the veteran —enabling them to remain at home and avoid or delay admission to costly nursing homes and other types of institutions.
On behalf of our most vulnerable veterans and caregivers, I ask you to urge Congress to swiftly pass the Elizabeth Dole Home Care Act. At a time when it seems that Congress is unable to agree on almost anything, this piece of legislation enjoys bipartisan support and represents the ability of our nation to come together to support our heroes—those who served our country and those who care for them. This is how we truly honor their service.
To find your congressperson click here: https://www.house.gov/representatives/find-your-representative
Lara Garey
Wife/Caregiver/Widow of Tom Garey, Air Force Veteran
Dole Caregiver Fellow, Class of 2019
Austin, TX
