Remembering Merle McPherson

Merle McPherson (1934 – 2024) was a strong advocate for children’s health, supporting the family engagement movement at the federal level.

From the Maternal and Child Health Bureau (MCHB):

Dr. McPherson served in the MCHB Habilitative Services Branch (now the Division of Services for Children with Special Health Needs) from 1977-2007, and as its director from 1987-2007. Her impact on the public health system for children and youth with special health care needs was profound. She left an indelible mark on the health and well-being of countless families across the nation.

Headshot of Merle McPherson.

When she began her career, public health efforts primarily focused on addressing specific health conditions affecting children, such as hemophilia, heart defects, and various physical and cognitive disabilities. The Federal Government allocated funds to states to support individualized treatment for these conditions. However, in the 1980s, a paradigm shift occurred, led by families and carried forward by visionaries like Dr. McPherson, alongside Surgeon General C. Everett Koop and Dr. Vince Hutchins, former MCHB Director.  They argued that instead of focusing solely on specific medical conditions, we should view children with chronic illnesses collectively as “children with special health care needs.” This perspective highlighted the common challenges these children faced and the importance of a holistic approach to their care.

Central to Dr. McPherson’s advocacy was the recognition of the pivotal role of families in a child’s health and well-being. She emphasized the need for including families in policy-making and clinical decision-making processes, understanding that family involvement improves the effectiveness of care and outcomes for individual children.

Dr. McPherson also championed community-based care, advocating for children to receive treatment in their homes and communities whenever feasible. This approach prioritized the integration of children into their natural environments, promoting their overall well-being and enhancing their quality of life.

She received numerous awards over the years, including ones from the American Academy of Pediatrics and from the Association of Maternal & Child Health Programs. In 2016, our bureau recognized Dr. McPherson’s contributions with the Title V Lifetime Achievement Award. Dr. Michael Lu, then Associate Administrator of the Bureau, praised McPherson’s visionary leadership and her lasting impact on public health policy and practice, describing her as one of the “few giants in our field who are truly larger than life,” and described how her “visionary leadership led to a paradigm shift from a deficit-based, categorical, medical model of care to a consumer-driven, family-centered and strength-based comprehensive model, which has become a standard of care for all children.”

Dr. McPherson’s advocacy laid the groundwork for a coordinated system of care for children and youth with special health care needs (CYSHCN). Today, her principles of community-based services, family-centered care, and a coordinated system of care continue to serve as the foundation for the Division of Services for Children with Special Health Needs and are articulated in its framework, the Blueprint for Change.

Dr. McPherson will be greatly missed and long celebrated not only for her brilliant mind and visionary leadership but also for her compassion.  Her legacy will continue to shape the landscape of maternal and child health, and her tireless dedication to improving the lives of those with special health care needs serves as inspiration for all who strive to build a healthier, more equitable future.

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With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

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Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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