By Charlene N. Rivera-Bonet, Waisman Science Writer
Services that meet the mission
In 2014, a plan was devised to create a program for autism intervention services at the UCEDD. “I think many of the people involved said, ‘We spend all this time diagnosing autism, but we don’t do anything after that.’ The creation of a treatment program was a logical next step,” says Bill MacLean, PhD, who took over as director of the UCEDD in 2014 after being recruited by Mailick.
The first thing he did was hire a director for the Autism Treatment Programs, Molly Murphy PhD, BCBA-D. Their vision was to build, not just a program that offered a service, but a model program that could serve as an example for others to replicate. The programs offer interdisciplinary treatment focused on behavioral treatment services for children, teens, young adults, and their families, as well as opportunities for training and research.
In a similar manner, MacLean wanted to make sure that the services provided by the clinics and other parts of the UCEDD were consistent with its mission and core services. “We don’t just do services [at the UCEDD], we do a service so that we can meet our mission,” Whitehead says.
The Waisman Center also expanded the scope of its outreach and training during MacLean’s tenure by using virtual training modules, such as ECHO (Extension for Community Health Outcomes) and by sending Waisman experts throughout the state to train other healthcare providers, families, and professionals instead of them having to come all the way to the center.
MacLean was also a researcher, which he intertwined into his role as director. Early on, he planted the seed for a culture of inquiry in the UCEDD in which faculty and staff would ask questions about the impact of their work and seek better ways to achieve the UCEDD mission. “So that meant that they were going to have to think about how to use research tools and program evaluation and write about what they’d been doing,” MacLean says.
“That was a real culture shift for the UCEDD, and it was great. It was just different, because [MacLean] looked at things through a research lens and it changed how we did our work,” Whitehead says.
DaWalt, who was then the research director of the UCEDD, created multiple initiatives that helped the UCEDD staff have a research mindset.
Before retiring, MacLean took on the role of interim director of the Waisman Center for six months. “It was a fantastic way for me to finish up a 40-year career in disability,” MacLean says.
Reinventing, not just staying afloat
The years of 2019 and 2020 were a season of transition, growth, and reinvention within the Waisman Center’s UCEDD. DaWalt became director of the UCEDD once MacLean retired in late 2019. Whitehead went from clinics manager to associate director shortly thereafter. But those weren’t the only big transitions that occurred for the UCEDD. The COVID-19 pandemic hit. Although the whole world felt it, the disabilities community was disproportionally affected, and the way care was provided had to be reinvented.
People with disabilities were disproportionately impacted by COVID-19 both in terms of health and mortality risk, but also in terms of access to services and education. It was also difficult to find care workers for individuals with IDDs. “I’m really proud of how hard our teams worked and that we continued to provide services during COVID,” DaWalt says. The number of people receiving services through the Waisman Center did not go down through those years because they were able to pivot to telehealth.
This wasn’t only for clinical services, but also for trainings. DaWalt and the team were able to switch many of the in-person trainings the UCEDD provides to virtual ones. “And that’s how now people from every county in the state of Wisconsin have been able to access trainings offered by the UCEDD. Whereas before, people either had to drive here to Madison or we would travel to communities,” DaWalt says. This led to more innovative and inclusive ways to provide training and services, which DaWalt hopes will ultimately increase access.
UCEDD nationwide and continuous growth
The Waisman Center’s UCEDD is part of a bigger network of UCEDDs strategically placed in every state in the country. Each UCEDD offers programs that meet the needs specific to their areas. However, collaboration and communication between them is vital. “It’s really critical to understand what’s happening in other states and other parts of the country so that we can all be better together,” DaWalt says.
Their link to AUCD also allows the UCEDDs to evolve as the AUCD evolves. Through the years “I’d say [the AUCD] has gone from emphasis on intellectual disabilities to looking at an across-disability perspective, from uni-discipline to interdisciplinary and in some instances, even trans-disciplinary. I think it’s moved from giving parents information, to working with parents, on figuring out what can work, and actually putting parents and self-advocates in leadership positions. I mean, I think that’s a major shift of looking at consumers as part of the planners and developers if you will, of where things are going,” Jesien says.
The Waisman Center’s UCEDD evolves along with research and the changing needs of individuals with disabilities. DaWalt’s vision for the future of the UCEDD, which is not only a vision but also an actionable plan, is making sure that their work is ultimately going to be serving all individuals with IDDs and their families and every community, that there’s representation and inclusion, and work toward equity.
“I think the whole is greater than the sum of the parts when it comes to the Waisman Center. I think there is great value in having an IDDRC, UCEDD, and LEND all co-located in the same space. The opportunity for there to be collaboration and crosstalk is really beneficial,” DaWalt says. “The UCEDD is fortunate to be a part of the Waisman Center with international experts who are carrying out cutting-edge science. For us, the joyous challenge is finding ways to translate science into practice and to improve lives for people with disabilities in our state here in Wisconsin.”
This oak tree has matured and grown many major and minor branches and deepened its roots in the state, while its fruit has reached out to many families and professionals who support individuals with intellectual and developmental disabilities here in the state of Wisconsin and nationally. The leadership and staff at the Waisman Center look forward to future discoveries and the development of services and supports that will continue to improve the lives of individuals with disabilities across the life span.
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50 Years | 1973 - 2023