By Charlene N. Rivera-Bonet, Waisman Science Writer
Hector Portillo moved to Wisconsin in 2003 in search of better health care options for his son who is on the autism spectrum. After more than a decade of navigating the health care system, he took it upon himself to help Latino families with kids with intellectual and developmental disabilities (IDD) find resources and supports, and navigate the healthcare system.
In 2017, Portillo established a family-led group called Padres e Hijos en Acción with the goal of understanding and addressing the health care needs of families from the Latino community in the Madison, Wisconsin area. Now, Padres e Hijos en Acción has a strong presence and relationship with Latino families with kids with special health care needs, and supports opportunities that often attracts more than 50 families.
The University Center for Excellence in Developmental Disabilities (UCEDD) at the Waisman Center, University of Wisconsin-Madison has been by Portillo’s side through parts of this journey, providing community training and technical assistance (CTTA). Portillo does the heavy lifting of reaching out to the families, establishing connections and relationships with families and community partners, organizing events, and distributing information. Different UCEDD programs at the Waisman Center support Portillo in his work by continually providing information, resources, and training for Portillo, his team, and the families in their native language, Spanish.
According to the United States Census Bureau, Latinos make up around 7.0% of the population in Dane County. However, Latino families of children with special healthcare needs face many barriers to accessing the services and support they need, language being one of them. “One of the things I like about the Waisman Center is that it is open to making trainings available in our native language,” Portillo says.
What is CTTA
Community training and technical assistance have been an integral part of the Waisman Center UCEDD’s mission since its beginning. As they strive to support the full inclusion and self determination of people with IDDs and their families, building capacity in the community to support these efforts is of utmost importance.
The UCEDD is designed to be a bridge between university resources, knowledge, methods and community needs, explains Gail Chödrön, PhD, who provides leadership for the UCEDD’s CTTA efforts. Through community training and technical assistance, UCEDD helps increase capacity to meet universal needs for individuals with IDD and their families.
CTTA helps individuals and entire organizations. “Technical assistance can look like providing coaching,” says Leann DaWalt, director of UCEDD. “It’s helping organizations be able to enhance what they’re doing.” This way the Waisman Center doesn’t have to provide all of the services that these organizations provide directly, but rather support them with expertise specific to their needs. “We can offer that expertise to different organizations so that they can do their awesome work with our tailored support,” DaWalt says.
On average, the UCEDD provides 115 community training activities a year, reaching more than 7,000 participants and 1,000 hours of technical assistance. Technical assistance refers to helping an agency, department, program, or coalition build its capacity. “Community training and technical assistance are both fundamentally about building the capacity in the community to implement best practice or evidence-based practices and to really support access to quality services and community inclusion wherever individuals and families live,” Chödrön says.
However, “the goal isn’t really the number,” Chödrön says. “The outcome we’re looking for is ongoing capacity building in the community to develop good content, good training strategies, and pass that forward. And then, continue to build and respond to needs.”
CTTA is integrated into most programs within the UCEDD. With more than 30 programs that support individuals with IDD and most of them having training components, the Waisman Center’s UCEED trainings cover a wide range of topics such as wellness, management of threatening confrontations, transition to adulthood, health, alternative augmentative communication, psychiatry, and many others. Each program provides accessible and relevant evidence-based trainings for individuals with intellectual and developmental disabilities, families, and health care providers.
However, it is not a one-way street. Each program also learns from the community in order to keep the trainings relevant to their specific needs. This often requires forming relationships with community leaders that have direct contact with the communities, and are not only trusted by the communities, but also knowledgeable on their needs. For example, Portillo has ensured that the resources and information he provides for the community are based on their needs and wants. One way he does this is by holding listening sessions with the families where he seeks to understand their experiences, priorities and knowledge to better inform his approaches.
Impact on community organization Padres e Hijos en Acción
Padres e Hijos en Acción has a two-fold mission. The first is to create a space for families with kids with disabilities to come together, get to know each other, and find parent-to-parent support. To foster these relationships, Portillo hosts multiple inclusive events throughout the year such as bike rides, cooking and gardening classes, and art nights. This also promotes socialization between kids and the enhancement of motor skills. Second, Padres e Hijos en Acción is a source of information for families on how to navigate local educational and health care systems. Portillo’s many years of first-hand experience and the UCEDD’s resources and expertise team up to make this happen.
For example, the Waisman Center has provided training to staff and families of Padres e Hijos en Acción about early intervention and diagnosis of IDD, and first steps to take once a kid gets diagnosed with a disability.
“Without the Waisman Center we wouldn’t have achieved this big assignment of helping families navigate the healthcare system, pushing for more equity in the healthcare system, and empowering and educating families to be self-advocates,” Portillo says. “Padres e Hijos en Acción feels blessed to be able to collaborate with the Waisman Center.”
Most recently, Portillo and Chödrön received funding from the Robert Wood Johnson Foundation. Through a three-year plan, they want to ensure that families experiencing the most barriers in accessing services and support are at the decision-making table in order to optimize individual and family outcomes and promote racial equity.
Portillo has also partnered with UCEDD programs such as the Wisconsin Care Integration Initiative (WiCII), Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (WI LEND), and the Southern Regional Center Children And Youth With Special Health Care Needs (CYSHCN).
All of these programs, and many more at the UCEDD, aim to increase the accessibility and responsiveness of communities to the needs of people with IDD and their families. Each program meets specific needs such as improved access to services among young children medically underserved children with or at risk for developmental disability (WiCII), supporting youth with special health care needs to transition into adult health care (Youth Health Transition Initiative for CYSHCN), and supporting individuals with developmental disabilities who present challenging behaviors (Community Training, Intervention, and Evaluation Services (TIES)).
All of the trainings provided by these programs draw upon scientifically supported methods, and are continuously revised in order to most effectively meet the needs of each community. With programs at the Waisman Center expanding their reach to different communities, the training provided needs to be relevant not only in terms of the type of information offered, but also culturally relevant when it comes the ways of delivering information. For this reason, relationships such as the one between Portillo and the Waisman Center are indispensable for success.
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