Marisa (Cenci) Brown’s career in developmental disability nursing started with a dare.
After graduating from Niagara University’s College of Nursing in 1973 and working for three years at Portsmouth Naval Hospital in Virginia, she and her husband moved to Madison, Wisc., where she interviewed at both the local VA hospital and at Central Wisconsin Center, an institution that served individuals with developmental disabilities. When one of the interviewers at the VA suggested she would not like working at the center, she immediately decided that she would accept CWC’s offer.
That decision led to a rewarding career of nearly 50 years.
Although she had no previous contact with people with developmental disabilities, Brown gained knowledge and experience working with her nursing director, who was one of the leaders in the field at that time. When Brown and her husband moved to Washington, D.C., two years later, her colleagues referred her to the National Children’s Center, a private residence and school for children with developmental disabilities.
“That connection is what gave me my career in developmental disability nursing,” Brown said. She now serves as chairman of the center’s board of directors. “When they asked me, I couldn’t say no. They were responsible for this wonderful career that I have had.”
While working at National Children’s Center, Brown began graduate studies at George Mason University. After earning her MSN in 1984, she began working for Georgetown University’s Center for Excellence in Developmental Disabilities. Her tenure spanned 34 years, during which she served in a variety of capacities, including as a member of the faculty.
Her work, which always was approached in collaboration with the communities she served, included projects involving health services for people with intellectual disabilities, genetics education, community services and supports for people with disabilities, early intervention services for infants and toddlers, cultural and linguistic competence, and home visiting services to families impacted by homelessness, poverty, disability, and substance use.
One of the projects she is most proud to have been part of is the DC Developmental Disabilities Administration’s Health Initiative, an effort aimed at improving healthcare quality and access for adults with intellectual disabilities.
For 12 years, she directed a team of experts in the developmental disabilities field who worked directly with healthcare professionals to create standards and processes that promoted effective diagnoses, treatment, and coordination of care, and collaborated with an ethicist from Georgetown to develop end-of-life assessments and facilitate person-centered decision-making.
“I am really proud of that work because it set up systems that are still in place in the District,” Brown said.
Brown also did a lot of work within impoverished communities in the District, seeking out the neighborhood leaders to determine what was needed. She recalled working with Miss Patsy, a woman who had been organizing other women in the Northeast section of the District to host summer camps and holiday celebrations for the neighborhood children. This experience taught her “the importance of finding the natural leaders in the community and being their support.”
“It’s not about you, because you don’t live there,” she said. “It’s about learning what the community wants.”
Brown also began bringing graduate students with her as she made her home visits, where they conducted health assessments and learned how to “be comfortable in a community that wasn’t their community.”
Her work has led to service on numerous task forces and advisory groups at the local and state level related to children and adults with developmental disabilities, as well as to volunteer assignments with Disability Rights International (DRI), a nonprofit organization that protects the human rights of individuals with disabilities worldwide.
While still working at Georgetown University, Brown traveled with DRI to Mexico City, where it had successfully advocated for the closure of the Casa Esperanza institution. After her retirement in 2018, she visited Bulgaria, which had replaced a system of large, old orphanages with newer, smaller buildings that were still operating as institutions.
In April 2022 and October 2023, she accompanied DRI to war-torn Ukraine to visit that country’s institutions for children with disabilities. Although Ukraine has been reforming its orphanage and institutional system for the past decade or so, children with disabilities have largely been excluded from this effort, and the ongoing war was intensifying the situation, as children with the greatest support needs were being moved to overcrowded, understaffed facilities.
“DRI had conducted previous inspections, so they knew things were already bad,” Brown said, “but once the invasion occurred, they were concerned about what was happening and where these people were being moved to.”
In Ukraine, Brown saw buildings that had been quickly constructed on the grounds of existing institutions to house the additional children. Inside the facilities, she saw rows of cribs and beds where babies and children lay in near total inactivity. At some institutions, the residents were being put to work.
Brown’s role was to observe and document the conditions she witnessed, gathering information to be used in a report advocating for the provision of support and resources to protect the health and safety of children with disabilities, and to encourage that they remain with their families rather than be placed in institutions.
“Seeing it for yourself, you can be a much better advocate,” she said.
Part of Brown’s passion to promote community integration and independence for people with disabilities stems from her own personal experience as the mother of a son with autism spectrum disorder. She continues to volunteer with the Arc of Northern Virginia and visits the state capitol each year to meet with legislators. She also did a webinar for Ukrainian parents on transitioning throughout the lifespan.
“It resonated with them,” she said. “Some things cross cultural boundaries—we’re all in this together, we’re all facing the same kind of questions about raising our children.”