Nora Wells Honored for Lifetime Achievements in Caring for Children with Medical Complexity 

The Maternal and Child Health Bureau’s Systems and Policy Research Network for Children and Youth with Special Health Care Needs and their Families (SPRNetwork) is proud to announce Nora Wells as a recipient of the 2024 Pediatric Complex Care Lifetime Achievement Award. The award celebrates Nora’s lifelong, exceptional, long-lasting contributions to helping children with medical complexity and their families.

Nora Wells wanted what was best for her 11-month-old son, Dan. He needed a medical evaluation at the hospital, and her mother’s intuition told her that he also needed her right by his side.

In the 1970s, the hospital’s visitation policy didn’t allow both. So, Nora took a stand. 

It was the first of many stands Nora would take—first for her son, and then for countless children and families across the country. Over five decades, Nora’s leadership and advocacy helped to transform policy, research, and services for children with medical complexity and their families.

Giving families a voice at every level 

Nora’s advocacy began during a time when many babies with disabilities weren’t expected to live beyond infancy. Many who did were placed in institutions. But advances in medicine meant children with medical complexities and disabilities were living longer. Yet families weren’t receiving the support they needed to care for their children at home. 

Grounded in her own experiences, and working with many other families anxious to help hospitals and other health care systems respond to the needs of families, Nora helped initiate foundational changes in hospital policies regarding allowing parents and caregivers to stay with their children during procedures and staying overnight with hospitalized children. These policy changes soon led to a physical restructuring of hospitals to incorporate patient- and family-centered designs, especially for children with disabilities.

Nora didn’t stop there.

State and national special education policies emerged in the mid-1970s, yet many health care professionals remained unaware of their role in helping patients with disabilities. Working for the Massachusetts-based Federation for Children with Special Needs, Nora worked to address health professionals’ knowledge of special education laws and educate professionals about the needs and experiences of families as a basis for changing health care services and policies. 

Nora understood the importance of partnering with people and organizations capable of driving change at the national level. In 1985, motivated by interest from the Maternal and Child Health Bureau (MCHB), she and family leader Betsy Anderson co-wrote a proposal to promote family leadership development and information sharing, education, and collaboration between families and health professionals across the country. This initial funding for families from MCHB was a significant milestone, with MCHB leadership becoming strong advocates of partnership with families and the implementation of family-centered health care.

Along with fellow moms and advocates Julie Beckett, whose daughter Katie had been the first child to come home from the hospital supported by a Home and Community-Based Medicaid Waiver, and Polly Arango, Nora made numerous trips to Washington to convey family needs as President Clinton prepared a new health plan. Although the plan wasn’t immediately successful, the voices of families were finally being heard. 

In 1992, a strong group of family advocates, including Nora, formed a nonprofit organization called Family Voices. Today, Family Voices supports a vital nationwide network of family-led organizations focused on transforming systems of care by putting families at the forefront, centering their leadership and lived expertise to foster equitable outcomes.

Taking her seat at the table 

Nora took a common-sense approach to her advocacy, recognizing the value of families participating in various roles. She served in multiple capacities with the American Academy of Pediatrics, advising on ways to address the needs of families and caregivers across public policy, medical home implementation, and disaster preparedness initiatives.

“Nora’s passion and advocacy have had a significant impact on the lives of many families, children, and health care clinicians, including countless pediatricians,” said Debra Waldron, MD, MPH, FAAP, Senior Vice President, Healthy and Resilient Children, Youth, and Families at the American Academy of Pediatrics (AAP). 

Nora also collaborated closely with Deborah Klein Walker, Ed. D., first as the Massachusetts Title V state administrator then later as a consultant and president of Family Voice’s board of directors. 

“Nora has accomplished a lot in her lifetime to assure that families are ‘at the table’ and must be a partner, if not the leader, in policy, practice, and research concerning children and youth with special health care needs and their families,” said Walker. 

Walker also observed Nora’s impact as executive director of Family Voices from 2014 to 2023. 

“Nora led Family Voices through a transition from a small organization with few established management functions to one that has implemented many management systems, begun a process on equity and diversity, and expanded the revenues and reputation of Family Voices,” Walker said. “Her leadership of Family Voices has positioned the organization to continue to grow in its relevance and impact over the next decades.” 

Honoring a lifetime of achievement

Over the years, Nora consistently demonstrated a commitment to putting families at the forefront of health care. Her leadership has had a profound impact on ensuring that families have a voice and a seat at the table in maternal and child health programs nationwide. 

What started as a mom who wanted what’s best for her child became a catalyst for helping countless children with medical complexity and their families over five decades. Her vision, leadership, and mentorship continue to inspire family engagement in health care, giving children like Dan an opportunity to thrive. Her dedication demonstrates a lifetime of lasting contributions, and we’re honored to recognize her with the Pediatric Complex Care Lifetime Achievement Award.

Please join SPRNetwork, Family Voices, Academic Pediatrics Association Complex Care and Disability Special Interest Group, and Children’s Hospital Association in celebrating Nora’s lasting, lifelong contributions.