Quality of Life Grants Spotlight: TBI Warrior Foundation
During the COVID-19 pandemic, the Reeve Foundation’s National Paralysis Resource Center created a special grants category (COVID-19: Addressing Social Isolation) for non-profit organizations to address social isolation by providing programs and projects to support the physical and mental health of people living with paralysis.
Active duty and military veterans can face challenges if they're injured while serving. Those who suffer from a traumatic brain injury (TBI) may also have developed disabilities. Many of these disabilities may require long-term care. Often, a spouse or loved one becomes their caregiver.
The TBI Warrior Foundation, located in Boerne, TX, northwest of San Antonio, was founded by U.S. Army retired Sargeant First Class Victor Medina, MRC, CRC, after he was wounded while serving his third tour in Iraq in 2009. Victor was diagnosed with a moderate TBI and sustained several injuries linked to his disabilities.
At the time of Victor's injuries, his wife, Dr. Roxana Delgado, was working as a researcher. Once the full extent of his injuries was known, Dr. Delgado became his caregiver. The couple worked together to navigate the various treatments and medical services required to help Victor. In addition, Victor decided to advocate for other veterans with TBI to aid them on their unique journey and adversity challenges. The couple's experiences as patient and caregiver helped them identify gaps in treatment and diagnosis which led to the shaping of military health care policy.
Victor and Roxana didn't stop with shaping new healthcare policies. In 2018, they began the "Health and Wellbeing Support Program" Respite Care for primary caregivers, specifically family members. The program's goal is to increase the overall health of family caregivers of ill, wounded, and inured veterans and the caregiver community impacted by TBI and conditions linked to TBI. For example, several caregivers are helping a loved one who is paralyzed.
The Reeve Foundation's COVID-19 grant of $25,000 is integral to exploring how to provide support to those in the program. The program's staff also assesses the needs of the family. Sometimes the needs are addressed by the "Health and Wellbeing Support Program" Respite Care, but if the family needs outside help, staff will direct them to partnered organizations. Victor and Roxana credit the Reeve Foundation's grant "to help define and implement a robust program." The couple established a platform where caregivers could share their thoughts and feelings. The funding also helped create a network of mental health and care coordination that caregivers could access to help them.
The couple decided on the definition of health and well-being holistically. The goal is to increase the overall health and well-being of each participant. They chose to improve a person's quality of life by giving the tools to reduce loneliness, regain or expand a sense of control, and feel prepared to face medical care and potential issues. Participants are encouraged to take advantage of seminars and workshops by the Respite Care program or their partners. Once a family becomes involved in the program, they're a part of it until they decide to leave.
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The Respite Care program provides several workshops and seminars focused on building skills. Families that are a part of the program believe it has changed their lives. One participant said "Our experience at the last caregiver support meeting inspired Nathan to be comfortable attending a community event - a firehouse open house. Despite the crowds and risk of loud noises and other headache triggers, he could walk with us the 2.5 miles total to attend the event and even talked to some firefighters and police officers there without my immediate presence. Our kids had a blast and I see his confidence growing daily. We were sorry to miss the June meeting due to a cascade of conflicts but fully intend to be there in July! Y'all are awesome, and we love TBI Warrior!"
Caregivers in the Respite Care Program participate in art therapy, painting and cooking. The Reeve Foundation's COVID-19 Reducing Isolation Grant enabled TBI Warrior Foundation to design a virtual connection that has evolved into people accessing workshops and seminars worldwide. Participants in the program benefit from the virtual meetings and classes.
"I really enjoy doing the monthly paintings and the virtual tea time. This has helped me make time for myself. I really enjoy it. It helps me forget a little about everything going on around me for that moment while I am painting. Thank you much for this opportunity.” Gabby Headen
WWII Veteran and Purple Heart Recipient PFC (Ret.) Arthur Berkowitz (who passed away this January) deeply enjoyed the virtual culinary classes. His daughter and caregiver shared with us these pictures and the following message, "Thank you so much for the TBI Warrior Foundation Eat Well Live Well Workshop. It was a nice surprise. I've learned so much by attending. So grateful to all of you. "
But, the reach of the program funded by the Reeve Foundation includes the children of veterans and their caregivers. One child wrote, "Dear TBI Warrior Foundation, Thank you for all of your support to injured people and their families. The cooking events have been awesome on Zoom. We can't go anywhere because of COVID and my Dad's injuries in the Navy. I really like being able to still see and talk to people on Zoom. Learning how to cook very tasty things is fun! It is important to be safe. I always wear a helmet whenever I ride my bike or rollerskate. I hope everyone stays safe!"
With the help of the Reeve Foundation, Victor and Roxana continue to grow the TBI Warrior Foundation so they can provide virtual and in-person support to veterans with disabilities, caregivers, and those with first-hand experience living with or caring for a loved one with a disability.
To learn more about the Reeve Foundation’s Quality of Life Grants Program, please see: www.ChristopherReeve.org/QOL.
Christina Sisti, DPS, MPH, MS is a bioethicist and health care policy advocate. She works to create awareness and improve health care policy for those with long-term health issues.