Eight years ago, the Department of Veterans Affairs (VA) started a program that was the first of its kind in the United States. Recognizing the degree of injury endured by service members returning home from recent conflicts, and the burden shouldered by their caregivers, Congress took bold action to enable VA to meet their needs by establishing the Program of Comprehensive Assistance for Family Caregivers. Limited to veterans injured on or after September 11, 2001, the program is designed to sustain a veteran’s caregiver and to recognize the sacrifice and service they provide to our nation’s heroes.
Based on the clinical determination of a veteran’s ability to complete activities of daily living or his or her need for supervision, that veteran’s caregiver receives the supports necessary to provide quality care at home. These supports include respite care, a monthly stipend, training, CHAMPVA, and mental health care. Studies show caregivers are the most critical component of rehabilitation and maintained recovery for veterans with catastrophic injuries. Their well-being directly impacts the quality of care provided to veterans. For the Paralyzed Veterans of America (Paralyzed Veterans) members who are eligible, this program has enabled them and their families to better manage the new normal of their lives by providing tools and resources to handle the emotional, physical, and financial stresses of caring for someone with a catastrophic disability.
As with any unique program, especially one of this scale (there are currently 22,000 participants), challenges were encountered. Challenges such as unclear policy, understaffing, and an antiquated IT systems to name a few. But overall, VA has done a commendable job, and as such, there is no reason why Congress should not take bold action again and enable VA to meet the needs of the majority of veterans—those catastrophically injured on or before September 10, 2001.
The only reason this program is not available to pre-9/11 veterans is the concern among members of Congress surrounding the potential cost. While expansion would be significant, upwards of several billion dollars, as estimated by the Congressional Budget Office, it is also true there would be commensurate savings from delaying a veteran’s entry into institutional care and community savings by ensuring caregivers remain healthy.
For all the bluster, debate, and discussion from Congress about veteran’s choice and care in the community, what they fail to hear is the near universal call from disabled veterans who choose to be cared for at home with their families. Roughly 70,000 veterans injured in service are in need of the clinical supports of this program. And for eight years, Congress has said it costs too much. There is no other clinically determined support service for veterans with service-connected disabilities that denies access because of an arbitrary date, which is then justified by Congress and the White House on account of cost.
However, recent months have seen cracks in this position. Confronting an impending wave of aging veterans, who will soon require long-term care services, and acknowledging the moral vacuum that is a program based on date of injury, members of the House and Senate Committees on Veterans’ Affairs have stated their desire to find a path forward for caregivers and rectify this inequality. An agreement on how best to change the program has yet to be reached.
During negotiations on the omnibus spending bill late last month, Paralyzed Veterans, alongside other VSOs caught a glimmer of hope, when expansion of the caregiver program was nearly included in the final package. It was removed at the last minute in a round of political tradeoffs between House and Senate leadership. While a disappointing loss, it is clear that once oppositional members of Congress are now indifferent, if not supportive, of caregiver expansion. In the months to come, we hope to see such momentum push forward on behalf of caregivers.
The ability to remain home, with one’s spouse and children, among friends and in a community is critical to the wellbeing of the veteran. At the same time, we know caregivers have sacrificed their own health, their employment opportunities, and their financial wellbeing to care for their veterans. Because they have stepped up, some for half a century, they have saved VA billions of dollars.
It is unconscionable, that the needs of one group of veterans, and the work of their caregivers, would be recognized and supported, while another group continues to labor in the shadows, unacknowledged with no reprieve, after decades of service.
Paralyzed Veterans will continue to pressure Congress to enable VA to provide the highest quality care to veterans whose lives are compromised as a result of their service.
Article originally written by Sarah Dean, member of Paralyzed Veterans' government relations team.
To learn more about how Paralyzed Veterans advocates for the rights of all people with disabilities please visit our advocacy and legislation page.