The Systems and Policy Research Network (SPRNetwork) is proud to announce Carolyn Allshouse as the recipient of the 2026 Pediatric Complex Care Lived Experience Partner Lifetime Achievement Award. This honor recognizes Carolyn’s extraordinary career as a family leader, educator, and champion for family-centered care. For more than 40 years, Carolyn has worked to advance family-centered care, helping hospitals, health systems, educators, and policymakers recognize parents as essential partners in improving care for children with medical complexity and other children and youth with special health care needs.

About the Award

The Pediatric Complex Care Lifetime Achievement Award is supported by the Systems & Policy Research Network, Family Voices, the Academic Pediatrics Association Complex Care and Disability Special Interest Group, and the Children’s Hospital Association.

Finding Her Voice and Helping Others Find Theirs

Carolyn Allshouse’s advocacy began in 1985 with the birth of her youngest son, who had multiple complex medical conditions requiring numerous hospitalizations, surgeries, and medical technology. During one of his earliest hospitalizations, Carolyn and her husband were excluded from the discharge planning meeting while hospital staff developed the plan for bringing their son home. Instead, they waited in his hospital room until they were presented with a complex set of discharge instructions.

“Parents are leaders, individuals uniquely positioned to improve systems because they understand not only how those systems are intended to work, but how they truly function in the lives of families.”

Although the experience did not feel right, Carolyn recalls that she did not yet realize she had a voice in changing it. A national conference on family-centered care had a profound impact on her. During a presentation by Dr. Bill Schwab, she was introduced to the philosophy of family-centered care and the idea that parents should be viewed as colleagues, bringing unique expertise and knowledge about their children that no one else on the care team possesses. That perspective transformed how Carolyn viewed her role in her son’s care and inspired her lifelong commitment to improving systems of care for children and families.

Advancing Family-Centered Care

About a year after her son’s hospitalization, Carolyn was invited to help establish one of Minnesota’s first family advisory committees. Through that work, she connected with Polly Arango, Betsy Anderson, and Nora Wells, who generously shared their experience, guidance, and support as Minnesota established its family advisory committee.

Over the years, Carolyn’s work expanded across hospitals, medical education, public health, research, and nonprofit organizations. She helped coordinate medical education programs at Children’s Minnesota and the University of Minnesota pediatric residency program, bringing families into the education of medical students and residents. Through the Parents as Teachers Program, pediatric residents visited families in their homes to better understand the realities of caring for children with disabilities and complex health care needs beyond the hospital setting. She also coordinated Living the Mission, introducing new Children’s Minnesota employees to the family perspective through parents’ lived experiences.

Carolyn represented Minnesota at the first American Academy of Pediatrics Medical Home meeting and later coordinated a statewide Medical Home Learning Collaborative through the Minnesota Department of Health. At its peak, the collaborative included 19 pediatric clinics working to implement the components of the medical home model and strengthen care coordination and family-centered practices.

She also helped develop and test the Emergency Information Form for Children with Special Health Care Needs and contributed to quality improvement initiatives, educational materials, and publications with the American Academy of Pediatrics, the Center for Medical Home Improvement, the Children’s Hospital Association, Boston University, and Seattle Children’s Research Institute. Most recently, she participated in a project with Boston University that culminated in a publication exploring and defining humanistic care.

In the early 1990s, Carolyn partnered with Ceci Shapland to establish a Family Voices network in Minnesota to help families stay informed about state and federal policy issues affecting children with disabilities. That collaboration eventually led to the establishment of Family Voices of Minnesota as a nonprofit organization in 2010, where Carolyn served as Executive Director for 15 years. Throughout her career, she has worked alongside families, clinicians, researchers, educators, and policymakers on projects focused on improving systems of care and creating meaningful opportunities for families to participate as colleagues.

A Legacy of Partnership

Reflecting on more than four decades of advocacy, Carolyn writes that improving health care is not a revolution but an evolution; one achieved through relationships, collaboration, and the persistent efforts of families, self-advocates, providers, researchers, policymakers, and advocates working together over time. Throughout her career, she has been committed to helping parents recognize the power of their voice and the unique knowledge, insight, and expertise they bring to improving systems of care.