HealthBeat readers may have read about the death of Polly Arango, a nationally known advocate for children with special health needs, earlier this week.

Over at Running a Hospital, Paul Levy, President and CEO of Beth Israel Deaconess Medical Center had this to say: “Learning of her untimely death in a freak one-car accident in Alamosa, Colorado, [on Saturday, June 16], I felt a blow-to-the-midsection loss.”

Levy met her at last year's Institute for Healthcare Improvement (IHI) Annual Forum (picture here) where Arango served as the Forum’s co-chair.  “She made an immediate and wonderful impression,” he recalls. “After the conference, I was curious. Who was this person? It was then that I learned of her extensive accomplishments.”

Polly began her career as an advocate in the 1960s. While her husband John served as Peace Corps Director in Panama and Ecuador, Polly began working to place Ecuadorian orphans with families in the United States and Europe. Later, when doctors discovered that her adopted son, Nicolas, had a severe developmental disability, she shifted her emphasis to securing full education and access to health care for children with chronic health conditions, and to organizing the families of these children.

When the Clinton Health Reform effort failed to take account of the needs of children with disabilities, Polly, Julie Beckett, Josie Wohl, and a group of advocates from around the country founded Family Voices to improve access and quality of health care for children with special needs. She served as the first Executive Director of Family Voices, which now has active chapters in every state.

"She thought that the most vulnerable needed a voice," her daughter Francesca Wilson told the Associated Press earlier this week. "She thought families who have children with disabilities are just pushed aside, and a lot of times they don't speak up for themselves."

Lance Chilton, an Albuquerque pediatrician added: "Polly was the most important person in the country in alerting physicians and others who care for children with special needs that families are the experts in the care of their children.”

I didn’t know Polly, but after IHI President Don Berwick told me about her, I invited Maureen Bisognano, Executive Vice President and Chief Operating Officer at IHI, to write a guest-post in her memory for HealthBeat.

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There is rarely one person who starts a movement, but there is an exception to this in Polly Arango, and her work to have patient and family voices heard in the design and delivery of health care. This week, Polly was killed in a car accident in Colorado, as she vacationed with her husband and two of her grandchildren. From every state in the country and from all over the globe, Polly’s family is hearing from those she touched. She is remembered as a passionate and effective leader, a gentle and humble spirit who could move mountains with her logic and her smile, someone who was at home at a Green Bay Packers game with her family and visiting the House of Lords in England. Her warmth drew all to her, from children with health and caring needs to legislators who relied on her opinion in their work. As she spoke at the IHI International Forum six months ago, she had 6000 physicians and nurses, health care leaders and researchers focused on her words and her message of change.
 
Polly will be recognized as a pioneer and a global leader who assured that patients’ and family’s voices are heard and used to effect change in health care delivery, not from a duty to paternalism, but as true partners in health. Polly co-founded Family Voices, a not-for-profit dedicated to improving lives for children with special needs and disabilities. She taught us that patients and families are the most underutilized resource in the health care system, and that all improvement is best and most efficiently designed when the needs and strengths of each person and each family factor prominently in these designs. Her persistent and powerful message affected care designs in every part of the health care system, from hospitals to physician offices and rehab settings, and in many parts of the world. 

I met Polly twelve years ago, as we both served on the Board of the National Initiative for Children’s Health Quality. In the years since, we had worked together on many projects for the Institute for Healthcare Improvement, and others. We laughed together often as we compared our similar Irish families (we both have eight brothers and sisters, and a huge bevy of family) and our shared passions for sports. Polly’s voice will continue to guide us in the work of implementing health care reform in a way that honors the special needs and resources for those we serve.

Maureen Bisognano