Branching out beyond where it’s planted: The story of the Waisman Center’s University Center for Excellence in Developmental Disabilities, Part 1

By Charlene N. Rivera-Bonet, Waisman Science Writer

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The Waisman Center is like a mighty oak tree with 50 annual rings. Its crown is massive as its limbs spread far and wide from two main branches. Its roots are deep and its trunk sturdy.

Leann DaWalt, PhD
Leann DaWalt, PhD

One main branch is the Intellectual and Developmental Disabilities Research Center (IDDRC), producing cutting-edge research that can help better understand intellectual and developmental disabilities, human development, and neurodegeneration. The other main branch is the University Center for Excellence in Developmental Disabilities (UCEDD). “The idea is for the UCEDD to be a liaison between the university and the community,” says Leann DaWalt, PhD, director of the Waisman Center’s UCEDD. It expands far and wide, and reaches beyond where it is planted at 1500 Highland Ave.

The Waisman Center was “planted” in Madison, Wisconsin in 1973, but its origins trace back to the 1960s, during the Kennedy administration. President Kennedy had commissioned a panel, now referred to as The President’s Committee for People with Intellectual Disabilities, to identify comprehensive solutions on how the federal government should address intellectual and developmental disabilities (IDDs). In 1962, the panel presented President Kennedy with a report that outlined an action plan through research, clinical services, training, and support.

A year later President Kennedy signed a bill into law that authorized the funding for the construction of interdisciplinary research centers dedicated to intellectual and developmental disabilities across the U.S.

George Jesien
George Jesien

But these centers weren’t meant to stand alone. In addition to research centers – the IDDRCs – the panel also recommended facilities that could implement the continuum of care, community-centered services, employment, parent training, strengthening of families, and prevention for intellectual and developmental disabilities. A big motivator for the establishment of these centers was the lack of training throughout the country for preservice students to work and learn in an interdisciplinary environment. They stressed the need for a strong community-based program with linkage to a university.  “It just made sense inside of a university to conduct the basic research and then doing the translational work with implications for ongoing treatment and support. In some magical way, it all just fit together,” says George Jesien, PhD, who worked at the Waisman Center UCEDD during its beginnings. They started out as University Affiliated Facilities because of the early emphasis on construction and eventually changed their name to UCEDD in 2000 to more closely reflect the range of activities and areas of emphasis.

The University of Wisconsin-Madison was one of the first sites to be selected to have an IDDRC and UCEDD because of the urging of Harry Waisman, MD, PhD, a prominent researcher physician, for whom the Waisman Center is named.

Currently, there are 67 UCEDDs, at least one in every U.S. state and territory, that share a common vision: foreseeing a nation in which Americans with disabilities participate fully in their communities. Independence, productivity, and community inclusion are key components of this vision.

The UCEDD branch spreads out into five core functions in order to fulfill its vision: (1) research and evaluation, (2) training and education of professionals, students, community members, individuals with IDD and families, (3) technical assistance (providing coaching to organizations, individuals, and programs, that support individuals with IDD), (4) information dissemination, and (5) direct model services such as clinics and the Waisman Early Childhood Program (WECP). All programs and projects under the UCEDD have at least one of these core functions, but most have multiple.

The early days of Waisman’s UCEDD

The program development statement for the Waisman Center, dated January 1, 1973 describes the phases for the development of a Diagnostic and Treatment Unit, the clinical arm of the Waisman Center in its initial years. It was divided in three phases: (1) establishing an interdisciplinary evaluation facility and initiating teaching and training programs, (2) developing training sessions to provide full training opportunities in treatment techniques and procedures within an interdisciplinary framework, and (3) relate to state and local needs through a range of educational, consultative and integrated services such as technical assistance. Since its beginnings, even after much evolution, training and education has been a vital component of every aspect of Waisman and the UCEDD.

Waisman Early Childhood Program
Waisman Early Childhood Program – Click on image to view a larger version

In 1982, the Waisman Center received a grant from the Wisconsin Department of Health Services for early intervention outreach and training with the passing of a new early intervention law. It aimed to provide early intervention to infants and toddlers with developmental disabilities, and with the new law, the interventions had a focus on having families intimately involved in the treatment process.

Around the same time, Jesien, who had previously been a school psychologist, was giving a talk at a statewide meeting about a national early intervention project that caught the attention of the then-director of the Waisman Center Terry Dolan, PhD. Dolan reached out to Jesien to ask if he wanted to come to Waisman and help start the early intervention program, which he agreed to do.

Jesien started the program along with Linda Tuchman-Ginsberg and Linda Brown, mother of a child with a disability. In conjunction with the Wisconsin LEND (Leadership Education in Neurodevelopmental and Related Disabilities) Training Program, Jesien and the team provided statewide training and technical assistance, traveling all over the state promoting the establishment of early intervention services, and retraining many providers on the new law. They were sharing and expanding knowledge and expertise throughout the state.

The Wisconsin LEND is another branch of the UCEDD that makes it stronger and unique. It is a training program funded by the Maternal & Child Health Bureau that prepares graduate students, family members of children with developmental disabilities, self-advocates (individuals with developmental disabilities), and professionals for leadership roles and advanced professional practice to help improve the lives of children with neurodevelopmental and related disabilities and their families.

During his time at the UCEDD, Jesien, motivated by Linda Brown, also hired parents of children with IDDs who would provide their invaluable expertise and unique firsthand, lived experiences and perspectives. “Which was very different for the Waisman Center to have, people were here not because of their degrees and training, but because of their life experience with individuals with disabilities,” Jesien says. This is a practice that still continues at the Waisman UCEDD and University Centers around the country.

Amy Whitehead, MPA
Amy Whitehead, MPA

Amy Whitehead, MPA, who eventually became the UCEDD’s associate director in 2020, was part of this group. Her oldest son had cerebral palsy, and received services from the Cerebral Palsy Clinic. Her son also attended the WECP. In 1991, she was hired as a parent facilitator to bring the perspective of a parent to an interdisciplinary team on a federal grant. “When you have a child with a disability, it can feel like not everyone understands what that experience is like. At the Waisman Center, I felt like people there did understand what that experience was like and that was incredibly powerful and supportive. I felt such gratitude for the help that the Waisman Center gave to our family and this was a way to give back while also contributing to a broader initiative to help families like my own.” She worked at the Waisman Center until her retirement in 2022.

Jesien left the UCEDD in 1994, but remained connected for more than 20 years as the director of the Association of University Centers on Disabilities (AUCD). The AUCD is the professional home that represents and advocates for all UCEDDs, IDDRCs and LEND programs to agencies in the federal government and Congress. “It advocates for legislation that addresses the unmet needs of families and adults,” Jesien says. AUCD brings the UCEDDs together and provides a forum and space for them to interact and exchange ideas, problems, and staff.

The Waisman Center Clinics

Dan Bier and board member Jan Robertson
Bier and Robertson: Dan Bier and board member Jan Robertson at a Friends Annual Meeting

An essential component of the Waisman Center and the UCEDD that embodies the core function of direct model services is the Waisman Center Clinics. Currently there are 10 specialty clinics at the Waisman Center in partnership with UW Health:  Autism and Developmental Disabilities Clinic, Biochemical Genetics Clinic, Cerebral Palsy Clinic, Communication Aids & Systems Clinic, Down Syndrome Clinic, Medical Genetics Clinic, Neuromotor Clinic, Newborn Follow-Up Clinic, Pediatric Brain Care, Undiagnosed Genetic Disease Clinic, and Autism Treatment Programs.  In addition to these clinics, Community TIES (Training, Intervention, and Evaluation Services) is a Waisman Center behavioral support program that addresses behavioral, psychological and emotional needs of individuals with intellectual and developmental disabilities in Dane County.

When Dan Bier, MSSW, was completing his graduate degree in social work in 1972, the clinics were in the basement of an old building. After finishing school, Bier went on to become the executive director for the local nonprofit Wisconsin Association for Perinatal Care for 20 years before being contacted by Dolan to lead the UCEDD in 1998. When Bier arrived, the clinics at the Waisman Center were struggling to survive financially.

WILEND Sidebar imageThe clinics were then-funded by small grants through the federal Maternal Child Health Program. “But as time went on, those grants didn’t go up that much in terms of being able to pay for all those types of services. The models were changing, and being able to pull off that type of service was much more challenging,” Bier says.

The service the clinics offered was unique. The families would come to the clinic for a week, with lodging at a hotel, and be seen by an interdisciplinary team of clinicians.

Bier and Marsha Mailick, PhD, then-director of the Waisman Center after Dolan’s retirement, came up with a plan to fund the clinics. In 2010 they created a partnership with UW Health that kept growing over time. “The number of patients we saw grew tremendously. Our valued partnership with UW Health expanded in many ways including a stronger alignment with UW Health operating policies/procedures and increased funding for personnel,” Whitehead says.

The clinics at the UCEDD serve multiple roles. They are a direct service model through which physicians and other health care providers can provide care to children and adolescents with IDD and their families. They serve as a place of training for students and professionals that seek a deeper expertise in IDD. And they serve as a space for IDDRC scientists to connect with the individuals they serve through research. They offer interdisciplinary care, reflecting the nature of the Waisman Center.

In addition to this new source of funding for the clinics, through his directorship, Bier also solidified a relationship between the center and the Wisconsin Title V Children’s and Youth with Special Health Care Needs Program, which the Waisman Center designated as the Southern Regional Center, now called the Children’s Resource Center – South, which provides information and assistance to families to help them understand and access services.

Stay tuned for the story continuation on how the UCEDD continues to meet its mission today.

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