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Advocacy
There is a story in the nonprofit sector that describes three nonprofit executive directors who happen to be on a riverbank when they are suddenly horrified to see babies bobbing down the river. One executive director immediately jumps in and begins pulling the babies out of the river in an effort to save them. The second director grabs as many as he can and takes them to a shallow pool to teach them to swim. The two directors then notice the third director running up the riverbank. The two working with the babies shout, "Hey, where are you going?" The third director shouts back, "I'm going to see where the babies are coming from to stop them from falling in the river!" And that is the role of an advocate!

In the early years of the Kelly Anne Dolan Memorial Fund, our immediate focus for families in crisis was to provide financial assistancepaying overdue bills for families caring for seriously ill children. Since then, the Fund has evolved into so much moreoffering not just a "hand" but also a voice for families in desperate situations.

An exciting opportunity to discuss the problems facing families with seriously ill children came at a White House meeting in 1996 with the Deputy Special Assistant to President Clinton, Doris Okada Matsui. Peggy Dolan was part of a small contingent representing the Pennsylvania Association of Nonprofit Organizations. The purpose of the meeting was to discuss the issues and goals of the nonprofit sector and how ties between the sector and government could be strengthened. The meeting also provided an opening for discussion about the needs and burdens of families with seriously ill and disabled children and the difficulties in developing and maintaining a grassroots organization to respond to these needs.

In 1991, as a member of the Childhood Cancer Advisory Committee for the American Cancer Society in Philadelphia, Peggy developed a workshop on financial management for the annual parents' conference. The success of that educational program and the outpouring of requests for more information on the topic led her to develop a 24-minute educational video titled Financial Management During Crisis. The video was completed in 2000 thanks to the generosity of the Independence Foundation and the Nemours Foundation, the help of Children's Hospital of Philadelphia, Alfred I. duPont Hospital for Children, PECO Energy, Consumer Credit Counseling, and the former Commerce Bank and the technical expertise and creativity of the Center for Children's Health Media. It gained national exposure in the media and has since been used as a training device for healthcare professionals, financial management counselors, and genetic counseling students. It has also served as an empowerment tool for parents struggling to managing their expenses, understand insurance issues, and navigate the healthcare system.

That same year Peggy was asked to testify as part of the Pennsylvania State House Appropriations Committee Hearings regarding the Tobacco Settlement money and the need to reinstate the Catastrophic Illness in Children Relief Fund for the state. Her testimony described the need for resources to assist families with living expenses when medical costs deplete a family's budget. She explained how parents are faced with impossible decisions, such as paying for medications or utility bills, child care for well siblings or rent, handicap equipment or car repairs. Peggy pointed out that employers lose patience with employees they consider unproductive and unreliable because they miss work to care for sick children. Often jobs are lost, leaving these parents without income and benefits at a time when they are needed most.

In 2008, Peggy Dolan was called on by the Department of Welfare to serve on the Pediatric Palliative and Hospice Care Task Force for the State of Pennsylvania. The role of the Task Force was to "identify the major challenges that prevent children with life-limiting illnesses/life-threatening conditions and their families from accessing pediatric palliative and hospice care services; and develop recommendations that will improve and enhance the organization, accessibility, financing and delivery of these much needed services." With years of experience and a solid reputation as a knowledgeable resource concerning the uninsured needs of families dealing with all sorts of serious childhood illnesses, disabilities, and severe injuries, Peggy was asked to write the financial section for the Task Force's Final Report.

In July 2009, Peggy was invited to attend the first Consortium for Children and Youth with Special Health Care Needs by the Pennsylvania Department of Health. This unique meeting of healthcare providers, human service representatives, and parents began the process of analyzing the current healthcare and human services delivery system for parents and their children who suffer through life-long disabilities. The Consortium continues to look at the "transitions" and education of children in these situations from infancy to adulthood.

As advocates for the families brought to the Consortium's attention and others like them, the Fund will go the extra mile by contacting a creditor to obtain leniency for a late payment, forgiveness for punitive interest, reversal of eviction, or disconnection of utilities. We have brought the needs of our constituency before the public through television talk shows; radio interviews; presentations to community and civic groups, schools, universities, and places of worship; and a multitude of newspaper and magazine articles. Our ultimate goal is to create some positive change within society that will ease the distress and lift the burdens for families dealing with the traumas of serious childhood illness.