By Emily Leclerc | Waisman Science Writer
Tucked away in the basement of a building on Old University Avenue, a small clinic with big ideas opened in 1968. It had a 10-person team and only saw two patients a week. The building it was supposed to be housed in hadn’t even started construction yet. This clinic specialized in the diagnosis and care of individuals with intellectual and developmental disabilities (IDD) – a service not easily found in the late 1960s.
Patients who came to the clinic would be seen by every clinician on the 10-person team. The interdisciplinary team had expertise in a range of fields including pediatrics, psychiatry, speech pathology, nutrition, occupational therapy, among others. “Every discipline would spend some time with the child or family, depending on the questions they were looking at. We would get a good picture of the child and then we would have a meeting with the family. The family would sit down and hear us discuss what we found and what we thought we were seeing,” says Rita Hohlstein, MS, OTR, retired clinical associate professor and occupational therapist for the University Center for Excellence in Developmental Disabilities (UCEDD) at the Waisman Center. Hohlstein became a provider in the clinic in 1970.
That was the start of the Waisman Center’s very first clinic. It was small and had minimal resources but its staff were dedicated to providing accessible and high-quality care for those with disabilities, particularly through its unusual structure. The clinic’s interdisciplinary approach to care was a new model that President Kennedy had presented when advocating for improvements to the systems supporting individuals with disabilities. “The importance of these problems justifies the talents of our best minds. No single discipline or science holds the answer. These centers must, therefore, be established on an interdisciplinary basis,” wrote President Kennedy in a special message to Congress in 1963.
Having a variety of clinicians with differing expertise work with patients ensured that the individual was being seen and treated as a whole person and that they were receiving the most accurate diagnosis and care possible. The process could take anywhere from several hours to several days. The team would collect their thoughts and assessments before discussing them with each other to provide the most well-rounded view of the patient and what they were experiencing.
Another unusual aspect of that first clinic was the degree to which the clinicians integrated the families into patient care. “Families were always an integral part of what we did,” Hohlstein says. They were always included in conversations and asked for their thoughts and input. This allowed for a fully-informed family, a better supported individual, and comprehensive care.
Several years later, the Waisman Center building was completed and it opened its doors in late 1973. The clinic moved from its small basement room and settled into the center’s new facilities. It was named the Waisman Center’s Diagnostic and Treatment Unit (DTU). Being able to offer specialized clinical services was a crucially important part of Waisman’s conception as a hub for research, services, training, and supports for individuals with IDDs and their families.
At the new facilities, the clinic began to grow and diversify while still maintaining its interdisciplinary methods and focus on the individual and family. It multiplied from one clinic to an umbrella containing several specialty clinics that took a more specialized view of IDDs. The DTU was still one of the very few places where individuals with disabilities could receive care.
Then in 1982, Waisman’s DTU came perilously close to closing their doors after a hefty slash in federal funding. 1,000 Wisconsin residents would lose their outpatient services. Thirty jobs, 10 research projects, and the training of 300 UW-Madison students were also on the line. Luckily, thanks to the efforts of several Wisconsin representatives at the time, most of the center’s federal funds were reinstated in mid-1982. The reinstatement also came with a reorganization of the clinics.
“’The Waisman Center Development Clinic,’ says [Raymond] Chun, [MD, then director of the clinics], ‘will consist of a general services clinic associated with a number of specialty clinics.’ Each of the clinics will function autonomously, although interaction and coordination of efforts will be stressed,” reads an article in the Monroe Evening Times from August 23, 1982. The clinics that were already in operation would continue – the Metabolic Clinic, Genetics Clinic, Speech Motor Control Clinic, Communicative Disorders Clinic, and Neurology Clinic – with new clinics being considered to serve unmet needs in the community. Since then, the clinics have continued to expand, diversify, and base their models of care in the foundations set forth by that first basement clinic.
Today, the Waisman Center houses 10 specialty clinics, in partnership with UW Health. UW Health and Waisman decided to team up in 2010 to help expand the reach and capacity of the clinics and provide services that are accessible through health insurance.
So, the days where the clinics only saw two patients a week are long gone. In 2022, the clinics had more than nine thousand patient visits. They remain exceedingly interdisciplinary and interconnected. Several physicians consult on a child’s care to ensure they are addressing all of the challenges and concerns of the child and family. Parents and family remain an intrinsic part of the process. Each clinic, even though they specialize in one condition or group of conditions, collaborate with a variety of clinicians across specialties to provide the best care possible.
“Having such a rich range of disciplines here, we’re able to look at many different facets of that child and their functioning. We can really celebrate their strengths and also identify ways that we may be able to help support them in the community. We also think about what needs there might be for the family,” says Maria Stanley, MD, developmental behavioral pediatrician and medical director of the Waisman Center Clinics.
The clinics are deeply connected to all parts of the center, collaborate regularly with Waisman researchers, and strive to fill gaps in care for those with IDDs alongside the UCEDD. Studies routinely show that people with IDDs have less access to high-quality healthcare, face significant health disparities when compared with the general population, and are often turned away by physicians that do not know how to properly treat those with IDDs. “Like other comparable services, we struggle due to nationwide shortages in trained professionals who specialize in the care of people with IDDs,” says Paola Perez, MSSW, social worker and clinics operation manager.
Because of the level of care given at Waisman and the gaps in healthcare for individuals with IDDs that the clinics help fill, families travel from all over to be seen at the Waisman Center. Primarily, the clinics’ patients come from Wisconsin, Illinois, Indiana, and Minnesota but it is not uncommon for families to come from even farther.
The clinics do require a physician referral but once a family has been seen in one clinic, it is very easy for patients to be referred to other Waisman clinics to address specific needs or diagnostics. For example, a family may come to the Waisman Center with a young child who has cerebral palsy, so their original referral may be for the Cerebral Palsy Clinic. They could then be seen by the Neuromotor Clinic or the Communication Aids and Systems Clinic to address specific needs or concerns. The comprehensive and interdisciplinary care extends beyond each individual clinic to include all of the clinics working together as a larger unit.
“Working in interdisciplinary teams allows everyone on the team to learn from one another, and provide high quality care,” Perez says. “Visits, especially when a new diagnosis is given, can be a difficult time for patients and families, but providing care as a team, that includes various perspectives, allows us to provide much richer and supportive experience to our patients.”
One of the benefits of having the clinics housed at the Waisman Center is the extended interdisciplinary relationship with research and researchers. The center provides an incredible translational research or bench to bedside model where discoveries from the lab will one day benefit patients and families. Waisman researchers are constantly working to better understand IDDs and hopefully improve the care and interventions and therapies being offered in the clinics while the clinics provide an important opportunity to inform research and share study recruitment.
“We have a clinic research review group that works with the Waisman Center Clinical Translational Core (CTC) to review clinic research proposals. The review group consider factors such as: patient experience, projected timeline, availability, and alignment with clinic policies and procedures,” says Perez. Many of the clinicians also conduct observational studies with the goal of improving patient care
Training the next generation of clinicians
The clinics also maintain a robust training program for medical and health-related disciplines. They prioritize training so that they can foster clinicians and other medical personnel that are equipped to treat individuals with IDDs with the level of care and respect both at and outside the Waisman Center
Each and every day, the clinics strive to provide the highest level of care possible to individuals with intellectual and developmental disabilities. Their interdisciplinary structure, dedication to research and training, and commitment to family centered inclusive care exemplifies the Waisman Center’s mission to support individuals with IDDs throughout their lifespan.
“It is so meaningful to be in a space that is specifically dedicated to the care of individuals with developmental disabilities and genetic conditions. Our shared sense of purpose in the clinics and the opportunity to work on an interdisciplinary team is incredible,” Stanley says. “We have people who really are so passionate about the care that they deliver and about the patients they serve. A lot of people who are here because they want to be doing the very best work possible and providing the best care for the patients that we serve and that’s an incredible thing.”
Current Clinics at the Waisman Center
- Autism and Developmental Disabilities Clinic
- Biochemical Genetics Clinic
- Cerebral Palsy Clinic
- Communication Aids & Systems (CASC)
- Down Syndrome Clinic
- Medical Genetics Clinic
- Neuromotor Clinic
- Newborn Follow-Up
- Pediatric Brain Care
- Undiagnosed Genetic Disease Clinic
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50 Years | 1973 - 2023