Parenting with disabilities

Carla Walker, OTD ’14, OTR/L, has a vision and a plan for her career, but it doesn’t stop there. Her vision is one that will bring about change and provide foundational support services to parents with disabilities in the St. Louis community. What started out as a project for her OTD work in 2011 has grown into a full-blown passion and is about to take flight through the Program’s Community Practice.

Walker is a clinician in Community Practice who has spent the majority of her career helping clients with disabilities overcome barriers so they can live their lives meaningfully and do the things they want and need to do. Since she came to the Program in 2011, much of this work has been in the seating, mobility, and assistive technology (AT) clinic, as well as in the Occupational Performance Center (OPC). Prior to her time at the Program in Occupational Therapy (WUOT), she served as the Director of Assistive Technology at Paraquad, where she specialized in AT for nine years. “Through the course of my work, I’ve begun to see a need emerge within our community,” shares Walker. “Some parents with disabilities may benefit from adaptive strategies to complete tasks such as bathing, feeding, dressing, carrying and lifting their children. Assisting parents to find an alternative approach that meets their needs for baby care and/or childcare tasks is perfectly in line with our client-centered skill set as occupational therapists.”

Walker first began to realize the need when she was still working at Paraquad and was serving as a project manager on the National Institute on Disability and Rehabilitation Research (NIDDR) funded grant, “Assistive Technology in the Community” under WUOT faculty member David B. Gray, PhD. Gray approached her about helping a family in the community who had reached out to him. As a parent with a disability, Gray would often receive requests for support, assistance, and advice from parents in the community when they would learn of his connection to Through the Looking Glass (TLG), a national organization funded by NIDRR. Based in Berkeley, Calif., TLG connects families with disabilities throughout the country. Although they provide OT interventions for families locally, they cannot directly provide services to families in St. Louis. Additionally, since 2006, Paraquad has offered the Family Participation Program (FPP) as a support group for parents with physical disabilities who have children 12 years of age and younger, but with its group approach, does not provide individualized problem solving or clinical intervention. “Over the years, Dr. Gray would continue to send me any requests that he received, and I continued to address them,” says Walker. “When I decided to transition to WUOT in 2011 to pursue my doctorate degree, this unmet need in our community became my focus and the foundation of my work.”

With Gray as her mentor and funded by a local grant from the Community University Health Research Partnership (CUHRP), Walker began to gather data and collect responses from parents in the community who had disabilities and children at home. The results began to uncover a variety of needs reported by the participants, including requests for help identifying adaptive baby gear and equipment, locating resources in the community, and finding advocacy in the court system. “We asked participants to identify and score those parenting tasks that are most important to them, as well as those that are the most difficult to perform,” shares Walker. Through this process, they identified many needs that are not currently met in our community, but can and should be, says Walker, who presented the findings to Pat Nellis, manager of Community Practice.

“Within Community Practice, our vision is to impact, empower and improve the lives of everyone we serve,” says Nellis. “We accomplish that by providing clinical interventions that are evidence-based and relevant to our clients and the community. When Carla presented her information, it became clear that this is a need we can help fill by offering individualized, clinical services to parents with a disability through Community Practice. Carla’s expertise in this area will be a tremendous help to clients who are in need of this type of support.”

As is typically the case with occupational therapy, the exact services will vary depending upon the client’s individual needs. Regardless of the age or stage of the child, however, Walker shares that she is ready and available to help empower parents to meet their goals for family participation. “Every stage of childhood brings about change and opens up numerous opportunities for the family to manage and address,” she says. “For families who are just embarking on the parenting journey, I can assist with the planning efforts throughout the pregnancy or adoption by making recommendations for baby gear, helping create birth plans in the hospital, or visiting the home to make sure it’s functional for both the baby and parent.”

As children grow and develop, new challenges and barriers for the parent may also arise. “For parents with mobility limitations, finding ways to manage the environment and keep children safe may be an area of focus, especially during the toddler years. Or, if the school environment is not as accessible as it should be and a parent is having difficulty participating in school activities, that’s a way that I can help,” she adds. “This program is about empowering parents with a disability to have the confidence, knowledge and skills they need to be the type of parent they want to be.”

Marketing efforts are underway to begin promoting this new service offered through Community Practice. Interested families can contact the practice directly to schedule an appointment, or they may be referred for services by an area health care provider via the Community Practice website. “This is my dream come true,” says Walker. “I am so thrilled to have the opportunity to launch a program that has a true need in the community and that connects research and practice. Thanks to Dr. Gray’s connections to TLG, I was able to complete part of my apprenticeship at TLG, learning best practices from one of the nation’s leading experts in the field and occupational therapist, Judi Rogers. WUOT has provided me with the structure and format to truly become knowledgeable in a particular focus area, so that now, we can develop what I hope will be a truly viable program for the community.”

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