Quality of Life Grants Spotlight: Spina Bifida Resource Network

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.

3  Spina bifida photo

When COVID-19 began, the Spina Bifida Resource Network (SBRN) recognized the need to address the side effects of isolation. The quarantine and social isolation requirements left many feeling alone. SBRN provided support and community for those with paralysis or disabilities through creating virtual communities in innovative ways. SBRN is located in Flemington, NJ.

Millie Gonzalez, a volunteer at the Spina Bifida Resource Network, started the Virtual Empowerment Speaker Series (VESS). The VESS consists of weekly workshops coordinated, led, and attended by those with disabilities. The participants in VESS benefitted from creating spaces for human interaction and community care. The VESS provides skill-building, goal-setting skills, and fun.

The SBRN received $29,200 from the Christopher & Dana Reeve Foundation, allowing VESS to increase its reach to people with paralysis or disabilities nationwide.

Since its inception, the program has evolved and increased in size, to serve approximately 200 people a year. Much of the success lies with programs' ability to create personal connections and create extended networks.

The VESS sessions are peer-led weekly workshops. Because the sessions are created and led by people with disabilities, the workshops can provide a safe place for those who experience societal and physical barriers. The workshop participants and leaders understand the inequities because they have firsthand knowledge.

Those who attend the sessions can explore advocacy (to build a community united in changing and improving personal rights and systematic change), individual capacity building, and embracing their disability. The aim is to help people with disabilities achieve their goals and build a sense of empowerment.

The grant support provided by the Christopher & Dana Reeve Foundation, additionally supported program coordinators and workshop presenters. Stipends were given to leaders and artists with disabilities, acknowledging the importance of their role as experts and leaders in theirs and other communities.

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Participants were surveyed about how they felt about the program. The VESS program received a 4.4 (out of a 5.0 scale) for its participants’ experiences. When responding to the topics provided by the VESS sessions, 98% said they planned on attending another session. Overall, the sessions received a score of 4.6.

Those who engage in the workshops report they gained helpful information, including:

  • Tools and resources about person-centered principles
  • How to join local government
  • How to improve their nutrition – benefitting their digestive tract
  • An increased ability to speak with medical professionals
  • Learning how to work with a service dog
  • Tips to successfully travel on an airplane with a wheelchair
  • Life skills
  • Career skills

Others were motivated and educated on how to become a workshop leader.

Additional responses in the survey expressed how participants felt about the VESS community. For example, “I feel empowered knowing that everyone on the Zoom call across America is going through similar things as I’ve gone through.” They have also said they have become more empowered to advocate, engage in self-care, and reframe their experiences positively.

The Spina Bifida Resource Network’s VESS sessions provide opportunities to engage in a community that understands those with paralysis or disabilities. The SBRN continues to remain dedicated to the goal of the VESS – to provide a virtual community based on support and understanding.

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.

About the Author - Reeve Staff

This blog was written by the Reeve Foundation for educational purposes. For more information please reach out to information@christopherreeve.org

Reeve Staff

The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.

This publication was supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $160,000 with 100% funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, ACL/HHS or the U.S. government.