By Charlene N. Rivera-Bonet, Waisman Science Writer
The 45-minute call ended with “Lynn, thank you so much. This is the first time in two years that I really felt heard.” The mom of a child with disabilities called the Children’s Resource Center-South, formerly known as the Southern Regional Center, wanting to know how to best advocate to get a neuropsychological evaluation for her child. After her two year search she had finally found a place that understood her need. And it only took 45 minutes.
Lynn Havemann, MEd, a children’s resource guide at the resource center, talked through some action steps with the mom. But mainly, she listened. “I think what she really needed, and I think this is true for a lot of parents, is that we hear them. We listen,” Havemann says.
The Children’s Resource Center-South, housed in the Waisman Center University Center for Excellence in Developmental Disabilities (UCEDD), is dedicated to supporting families with children and youth with special health care needs or disabilities and the providers who serve them. Specialists at the center such as Havemann help families and providers get answers, find services, connect with community resources, provide training, and support people through their journey. They are a tool to help individuals navigate the system of care around children and youth with special health care needs.
The Children’s Resource Center-South is one of five resources centers across Wisconsin funded by the Maternal Child Health Title V Block Grant. It serves the counties of Adams, Columbia, Crawford, Dane, Dodge, Grant, Green, Iowa, Juneau, Lafayette, Richland, Rock, Sauk, and Vernon.
Sharing similar visions, the UCEDD and the Children’s Resource Center-South are natural partners, going on 21 years of serving the community together and making services and resources more accessible. What started as a one-person operation in the early 2000s quickly expanded as the needs for their services grew. Their physical office got moved to the clinical area of the Waisman Center to make them more accessible to clinic families. Now the Children’s Resource Center-South has a bigger team of support, including the expertise of five children’s resource guides. “The desire for people and family members with disabilities to be fully included in society means that they have to access the services that are available, which means they have to know about the services that are available to them,” says Tim Markle, MA, MA/CS, director of the Children’s Resource Center-South.
A place to turn to for answers
At the time of a diagnosis, nothing has really prepared parents to navigate the system for special health care needs. Many questions may arise and it can be hard to know where to start. “Usually the fact that a child has a special healthcare need or disability comes suddenly to a family or it appears slowly as the child develops,” Markle says. “There’s an element of surprise when something doesn’t go as expected. And you don’t know where to turn. So, we want people to know that they can turn to us.”
Children’s resource guides at the resources center take calls every day from primary care physicians, school staff, grandparents, parents, or caregivers of kids with any kind of special health care need. This can include mental health, intellectual or developmental disabilities, or physical need. “The heart of what we do is meet parents where they’re at. Really try to hear what their questions are, and provide support and good, accurate information, and to really help them figure out their next best step,” says Amy Lyle, MSSW, APSW, children’s resource guide at the Children’s Resource Center-South.
The center believes children are best served within the families, and that family perspective and presence must be included in all aspects of the system. “So, we might provide a menu of options or things that are available. But ultimately, the family knows their child and their family best, and they’re going to know what is best and what’s doable for them,” Lyle says.
Navigation through the health care system
The specialists also try to paint an accurate picture of the services landscape for the family. Just because a service exists in the state doesn’t mean that the family would qualify. Sometimes there are also long waitlists. Part of Havemann, Lyle, and other specialists’ job at the center is to make the family aware of their feasible options, but also potential roadblocks, and how to manage them.
Because the system of care for children and youth with special health care needs can be challenging to navigate and have long periods of waiting, the specialists typically follow up with families. They will call to make sure the family was able to find the resources they needed, and to learn about the barriers they faced.
But one of the most important things they offer is time and understanding. “We really welcome complexity. And we’re not in a rush,” Lyle says. “We’re one of those rare places where we’re not in a hurry. We have the time, and we want to hear as much of the story as families want to share.”
Families typically get connected with the Children’s Resource Center-South after they get a new diagnosis as the center is often listed on the recommendations given by physicians and psychologists. They often also call for mental health services or evaluations. But there are many other areas of need met by the center. “Once they have a diagnosis, they may be calling us to say ‘I got this new diagnosis. What are my next steps?’” Havemann explains.
Other areas where the resource centers provide help are health benefits assistance, training and advocacy for medical home (a way of health care where parents and physicians partner to promote a child’s health and development), health care transition planning, parent-to-parent support, communicating with schools, problem solving, and assistance locating doctors. In addition to providing this support and information over the phone, the Children’s Resource Center-South also offers in-person and virtual training opportunities for individuals with special health care needs or their parents, on topics such as disability work benefits, Medicaid, and supported decision making and guardianship. Markle and the SRC team has also created a navigation guide of resources and services for Wisconsin families who have children and youth with special health care needs and disabilities called Finding Your Way (also available in Spanish).
In the last year, the Children’s Resource Center-South has also hired a bilingual children’s resource guide to expand their reach and make their services more accessible to Spanish-speaking families in Wisconsin.
With all of these resources, the goal is to provide families with valuable tools to learn how to explore the new, often difficult to navigate, world of disabilities and health care. At minimum, says Lyle, it’s about making people feel “like somebody’s walking alongside them and helping to keep them moving forward.”
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