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Tuesday, April 23, 2024

Support for Parents of Children with Disabilities

Rhonda White, mother of four, says her youngest daughter has a beautiful smile and spirit and is a social butterfly who keeps all of the people around her laughing, especially her siblings. She has rhythmic ability, enjoys music and playing instruments and is a dancing machine. White described her as a great problem solver who knows what she wants. She was also diagnosed with a rare syndrome: Cornelia de Lange Syndrome (CdLS), a developmental disorder that can include growth delays and intellectual disability.

Today White is the Family and Community Engagement Coordinator and Program Coordinator of Family Ties of DC (FTDC), a program of Quality Trust for Individuals With Disabilities, which matches DC parents with other parents for connection, support and information.

“Over these sixteen years, I would not have been able to support my family without the knowledge and support of other parents who shared the ups and downs of their lives to support and advocate for their families,” White said. “I understand personally and professionally the power of parents of children with disabilities is what makes us such a great resource of support and advocacy.”

She remembers how much she needed support and help in learning how to parent with a different perspective.

“I always believe that as a parent, it doesn’t matter if it’s a child with or without disabilities, they all need support,” White said, “They just need all different forms and levels, and types of support.”  In DC, it can be challenging for parents of children with disabilities to gain access to appropriate community services for their children, said White.

White got involved with Quality Trust after struggling to find these resources herself after receiving her daughter’s diagnosis.

Bridging the Gap
Quality Trust for Individuals With Disabilities (4301 Connecticut Ave. NW, Unit 310) is an organization that offers support and advocacy for individuals with disabilities of all ages in the District. The organization has a distinct focus on working with families and on looking for creative ways to bridge the gap between differences and make the most of each individual’s abilities.

The work is really centered on the children and young people whose interests are being served. Tina Campanella has been the CEO of Quality Trust for 18 years. She has been interested in this advocacy work since she started babysitting for children with disabilities as a teenager.

One of the children in particular stands out in her memory to this day.

“It really just sort of became clear to me that his challenge in life was that the world around him expected him to understand and conform to the world as they saw it,” Campanella recalled. “In my mind, we should have spent a lot more time trying to understand how he saw the world, why he didn’t conform and use our skills as people who could understand both worlds to bridge and help make it easier for him to get from where he was to where everybody else wanted him to be.”

Campanella said what makes Quality Trust special is its commitment to assisting all individuals in the community by providing a wealth of knowledge and resources that help young people bridge those worlds.

“One of the biggest challenges that I’ve seen with families in the community is that they try and get help, but everywhere they turn people are saying, “We don’t do exactly that,’” Campanella said. “Quality Trust is that place where you can come to, where we have some expertise, so we can help shortcut the family’s learning curve by helping them understand some of the ways in which the system works.”

The Benefit of Experience
Fern Clark is a parent and an advocate who became involved with Quality Trust as a way to help support parents and share knowledge. Her daughter is heavily involved with community organizations and activities, from Special Olympics bowling to cheerleading, dance and basketball as well as the Edlavitch Jewish Community Center of DC and Art Works at Next Level Academy in the District.

Clark said her experience as an advocate and as a parent of a child with Down syndrome has helped her to help other parents navigate the various agency and institutional systems. She currently serves as a Family Ties of DC support parent working with families across the District. In that role she does advocacy work for people with disabilities and shares knowledge and experience with parents.

“There are lots of things that you want for your child or adult with disabilities, lots of things and experiences you would like them to have,” Clark said, remembering the first days of her search for assistance. “You don’t really know that system and understand the procedures in the process to get the help and the services that they need.”

“That’s where we come in as caregivers —we have managed and maneuvered the system.”

You can learn more about Quality Trust and their services by visiting their website at QualityTrust.org.

Join us at one of the information sessions about the Family Ties of DC, DC is a “new” parent to parent program in the Nation’s Capital to connect parents who have a child(ren) with a disability will be matched with a parent of a child with a disability who has been on their parenting journey for intentional emotional and informational support.

Sarah Payne is a History and Neuroscience student at The University of Michigan interning with HillRag. She writes for and serves as an assistant news editor for Michigan’s student newspaper, The Michigan Daily. You can reach her at sarahp@hillrag.com.

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