When Barbara Leach’s phone rings, she never knows what the need will be on the other end. Barbara manages the toll-free Information and Referral line at Access Family Support (800.852.0042), responding to parents and service providers calling with all kinds of questions related to families with children who have special needs. A grandmother wonders if her 5 year old grandson should have an evaluation for autism. A dad is looking for support groups in Catawba County for parents with kids who have Fragile X Syndrome. A speech and language therapist moving from New Jersey wants to understand how early intervention works in North Carolina. Families, caregivers and sometimes even clients themselves call Barbara for guidance, support, resources and referrals for services. Through Access Family Support callers are linked to reliable information and help navigating the complex systems families rely on for their children who have special needs. Barbara uses “special needs” and “disability” interchangeably – callers are referring to intellectual/developmental disabilities, behavioral health issues, special health care needs, learning differences and rare diagnoses.
Barbara Leach knows first-hand how difficult it can be to find and access resources for families with children who have special needs. As a parent of child who needed specialized resources, she had the frustrating and time consuming experience of navigating various channels to support her child. This personal experience is at the root of her passion for helping parents and caregivers with children who have disabilities. In 1999, Barbara began working for the Children’s Mental Health Project at the UNC School of Social Work. From there in 2002 she moved to the Family Support Network™ of North Carolina (then part of the UNC School of Medicine), with a focus on intellectual and developmental disabilities. Today, Barbara Leach is the Program Coordinator and Family Support Specialist at the Family Support Program (FSP), a part of The Jordan Institute for Families. She embodies the mission of FSP “to promote and provide support for families with children who have special needs”. Barbara’s role is not just to help direct families and providers to services and resources, but also to encourage caregivers to become advocates for their children.
People often call Barbara to find out how to connect to other families experiencing similar challenges. To receive direct support, families are referred to a Family Support Network™ of North Carolina affiliate program in their area. There are currently 11 affiliates across the state that provide Parent-to-Parent peer support (P2P), local information and referral, support groups, and social activities for families and children who have special needs. In the P2P program, parents seeking to connect with another parent are matched with a trained “FSN Support Parent”. The Support Parent provides invaluable emotional and informational support to help them adjust and adapt, whether to a new diagnosis or other challenges. There are currently 880 trained Support Parents across the state that have previously received the service, and want to be there to encourage parents who are new to the experience of having a child or children who have disabilities. If an appropriate match cannot be made in North Carolina, for example around a rare diagnosis, a parent match may be made through a P2P program in another state.
Working in a field that centers on support and care for others, sometimes one can’t help but notice gaps in services for families. When asked where she saw that changes could be made, Barbara noted that the most promising approach to limited resources is helping agencies to work more collaboratively. Families are working through multiple systems, so eliminating “silos” is so important to efficiently and sufficiently provide them with support. When providing families with referrals, it would be reassuring to know that when they hang up to access those resources, they are met with answers and the services they need. Barbara also stresses the importance of encouraging families and communities to work together by providing caregivers with the necessary tools to advocate for themselves. Language used by service providers can be unfamiliar to families, while the complex service system can be confusing to families and providers alike! Barbara makes a point to explain things to families so they are better able to communicate with providers and to develop a parent-provider partnership to help their child.
Barbara is able to make a difference with families she serves through listening well and putting callers at ease. It is key for callers to trust the person on the other end of the phone because often they feel vulnerable when seeking resources. Taking the time to become acquainted first, as well as admitting when she does not have an answer, gives caregivers the chance to trust and feel more comfortable with seeking answers. In response to my question of what her goal is with helping parents and caregivers at FSP, Barbara warmly replied, “helping them to find their voices so they are able to help their children find their own voices.”
The Family Support Program sponsors the seminar series “Focus on Family and Disability” , held at UNC School of Social Work the 2nd Tuesday of the month from fall through spring in the Tate-Turner-Kuralt Building auditorium. School of Social Work students receive free admission.