The Waisman Center UCEDD
The Waisman Center serves as Wisconsin’s University Center for Excellence in Developmental Disabilities (UCEDD), a designation from the Administration on Disabilities within the U.S. Department of Health and Human Services. It is one of 67 UCEDDs nationwide, authorized under the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) to provide core functions and leverage additional public and private funding to support a wide range of programs. On average, the Wisconsin UCEDD supports more than 25 projects annually.
The Waisman Center is home to three federally-funded disability programs:
- The UCEDD
- The Intellectual and Developmental Disabilities Research Center (IDDRC)
- The Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (WI LEND) program
This co-location fosters collaboration, integration, and layering of core functions across programs. The UCEDD’s preservice training promotes full inclusion and self-determination for individuals with developmental disabilities and their families, in alignment with the DD Act. This brief highlights the history and current structure of the UCEDD’s preservice training pathways, with a focus on the growing role of family trainees within WI LEND. A list of key acronyms and terms used in the brief is provided on the last page.
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Background
President Kennedy signed Public Law (PL) 88-164 on October 31, 1963. This landmark legislation authorized assistance with the construction of research centers and University Affiliated Facilities to address a broad set of needs to improve the lives of individuals with developmental disabilities through research, training, and clinical services. The University of Wisconsin (UW)-Madison was among the first universities to receive construction funding for a research center in 1965 and for a University Affiliated Facility in 1968. In the 60 years since its inception, this legislation has been reshaped each time it was reauthorized into what we now know as the DD Act.i Together, the research center (now the IDDRC) and University Affiliated Facility (now the UCEDD), laid the foundation for what ultimately became the Waisman Center in 1973. In 1970, the UCEDD was part of the first group of universities to receive funds from Maternal Child Health (MCH) to support inter-disciplinary training.ii,iii MCH continues to fund LEND and other preservice training opportunities today.
UCEDD Preservice Training Offers Multiple Training Pathways
The UCEDD provides preservice (before beginning employment) training within the field of developmental disabilities (DD). UCEDD preservice training is distinct from community-based training because it provides training to individuals enrolled in university or college-based academic, degree-granting programs in order to prepare them to join the DD workforce. UCEDD faculty and staff often provide guest lectures and/or teach semester-long courses in academic programs related to DD. Students from several university academic programs complete applied practice placements in UCEDD model direct services. For students who seek more in-depth training, WI LEND offers comprehensive instruction and applied practice placements. WI LEND has been the UCEDD’s flagship preservice training program for over five decades. WI LEND trainees include students, professionals, and individuals with lived experience. WI LEND trainees engage in a comprehensive training that includes didactic instruction, interactive leadership training, interdisciplinary team work and applied practice placements. Graduate students enrolled in
academic degree programs may choose to apply to WI LEND to supplemental their graduate program’s training in order to gain knowledge, leadership, and interdisciplinary skills in the DD field. Most WI LEND trainees earn graduate degrees in their discipline-specific specialized field of study (e.g., psychology, audiology, occupational therapy) and go on to work in the field of developmental disabilities.
WI LEND’s Leadership Role in Including the Family Discipline
In 2005, WI LEND formally established the Family Discipline (FD), allowing family leaders to train alongside professionals from other disciplines. This model highlights the value of interdisciplinary practice and the full inclusion of individuals with lived experience as faculty, staff, educators, and trainees.
As a graduate-level program, WI LEND requires family trainees to have prior leadership experience related to DD. Many have served as parent educators before applying and bring a wealth of experience to the program. While their paths to and from WI LEND vary, their role within the training cohort is consistent: FD trainees fully participate in the 9-month, 320-hour program, receive mentorship, set personal leadership goals, follow individualized training plans, and contribute their unique perspectives.
Through applied practice placements, FD trainees engage in interdisciplinary research and community projects, translating knowledge for broader family audiences. They gain the skills and confidence to promote family-centered care and improve systems of support.
Graduates have gone on to make significant impacts—serving on advisory boards, leading advocacy efforts, launching nonprofits, securing grants, and developing national initiatives like grand rounds for medical learners that are led by family members.
From 2005 to 2025, 31 family trainees have completed the long-term WI LEND program, with seven more participating as medium-term trainees.
The WI LEND Story: Including Lived Experience
Historic Perspective
In the early 1960s, President Kennedy’s historic leadership related to people with DD and their families resulted in a landmark panel report that included recommendations for improving the lives of people with DDiv. The report highlighted research, training, education, model services, and related programs as key areas that needed improvement. The panel report led to legislative changes primarily in amendments to the Public Health Service Act and the Social Security Act’s Maternal Child Health Program (MCH). The panel report specifically included language emphasizing the importance of preparing future professionals and the need for training funds:
“Services cannot exist without a steady influx of trained personnel and steady assimilation of new knowledge from research.” p. 172
The UCEDD has long recognized that family members’ lived experience makes a critical contribution to students’ learning about all aspects of working with families and has therefore included family members on interdisciplinary teams for over three decades. In the late 1980s and early 1990s, the UCEDD hired family members to bring the family perspective to interdisciplinary teams that implemented early intervention and early childhood in-service and preservice training around the state, and WI LEND added “family faculty” as paid staff and as paid community-based
educators. Over time, WI LEND added family and disability advocacy (people with disabilities) as formal disciplines, enrolled in LEND as learners along with trainees from the other academic disciplines. The timeline below highlights the evolution of individuals with lived experience as part of preservice training.
UCEDD Preservice Training Timeline:
Current Perspective
Among the 60 LEND programs across the country, WI LEND stands out for its size, scope, longevity and history of including family and individuals with DD as integral to all aspects of the program. In a typical year, WI LEND trains about 50 long- and medium-term trainees representing 15 disciplines: 13 academic programs plus family and disability advocate disciplines. Program planning, implementation and evaluation are carried out by an interdisciplinary team representing all 15 disciplines. In addition to providing training in person in Madison, WI LEND has a satellite training site based at UW-Milwaukee.
The scope of the curriculum is guided by legislation and MCH leadership competencies (e.g., family-professional partnerships, interdisciplinary/interprofessional team building), tailored to meet the critical workforce development needs of Wisconsin. The training program includes three training areas: instructional time; applied practice placements; and other experiential training activities. Trainees develop leadership skills and gain knowledge in DD. WI LEND integrates the UCEDD core functions into the curriculum and engages in continuous improvement. WI LEND
disseminates lessons learned about effective training methods through presentations, papers and collaborations with other training programs.
WI LEND Outcomes: A Snapshot
WI LEND collaborated with two other LEND programs nationally to study the impact of LEND training. The LEND Outcomes Study compared LEND trainees between 2015 to 2019 to a matched group of students (from the same graduate programs as the LEND respondents) who did not complete LEND to assess the long-term impact of LEND training. The data from this study documents that LEND graduates are more likely than non-LEND trained peers to report that their work includes: leadership activities; serving maternal child health populations; interaction with other disciplines; and working within a public health organization.v
Key Terms Used in this Brief
AUCD: The Association of University Centers on Disabilities
DD: Developmental Disabilities
DD Act: Developmental Disabilities Assistance and Bill of Rights Act of 2000
IDDRC: Intellectual and Developmental Disabilities Research Center
UCEDD: University Centers for Excellence in Developmental Disabilities Education, Research, and Service
UCEDD Core Functions:
- Preservice Training is when students from different university departments learn together, with individuals with lived experience, about ways to help people with developmental disabilities.
- Community Services help people with developmental disabilities to live in their communities through:
Community Training and coaching that builds the capacity of community members and policy-makers to support individuals with developmental disabilities.
Model Services that provide services and supports while finding new ways to help individuals with developmental disabilities through demonstration and model activities. - Research and Evaluation lead to understanding the causes, impacts and interventions for individuals with developmental disabilities and their families.
- Dissemination of Information is a way to help many people learn about developmental disabilities.
Notes
ii. Fifield, B., & Fifield, M. G. (2020). The Origins of University Centers on Developmental Disabilities: Early Expectations and Legislation. The Developmental Disabilities Network Journal, (1), 15-33.
iii. Waisman Center 50th Anniversary Timeline
iv. U.S. Department of Health, Education and Welfare (1962). Report to the President: A Proposed Program for National Action to Combat Mental Retardation. The President’s Panel on Mental Retardation.
v. Bishop L, Harris AB, Rabidoux PC, Laughlin SF, McLean KJ, Noll RB. A model to evaluate interprofessional training effectiveness: feasibility and five-year outcomes of a multi-site prospective cohort study. Maternal and Child Health Journal. 2022; 1-10. https://doi.org/10.1007/s10995-022-03421-6