AMERICAN ACADEMY OF PEDIATRICS PARENT ADVISORY GROUP (PAG)

1. AMERICAN ACADEMY OF PEDIATRICS PARENT ADVISORY GROUP (PAG) SUPPORTING CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS THROUGH THE FAMILY-CENTERED CARE APPROACH BACKGROUND Why Establish a Parent Advisory Group (PAG)? WHAT IS FAMILY-CENTERED CARE? In 2006, The AAP Board of Directors voted to approve the Parent Advisory Group (PAG) three year pilot. Thus was the beginning of the first PAG within the Academy under the Section on Home Care. Members of the PAG are all professionals in the field of health care including national organizations, community based agencies and hospitals. All members share a special interest in family-centered care and personal experience with children with special health care needs. Like many other sections within the AAP, the Section on Homecare received input from knowledgeable and articulate parents and children. Their insights, perceptions and creative ideas have proven valuable as the section has deliberated, taught and written about home care and the social, economic and educational issues that challenge families and their physicians. Building on this positive experience, the PAG Pilot will provide a forum to support plans, stimulate new projects and assist the section with its vision to serve as a catalyst and support for sections that see home care as a goal for all children. By establishing a structured process to include parents as advisors, the Section will gain insight into families’ perspectives on core issues. Family input will guide this section to target issues and create responses that are meaningful to professionals and families, and that are evidence-based and cost effective. By documenting activities and outcomes of the PAG, other AAP members can build upon successful Parent-professional partnerships within the Academy. • In a family-centered approach to care, the family is viewed as the constant in a child’s life and an essential member of the health care team. In keeping with this approach, health care providers engage in partnerships with families in direct care, and also in policy development, performance improvement, research, evaluation, and professional education. The AAP supports the principles of family-centered care. DID YOU KNOW…. • Approximately 12.8 percent of children/youth in the United States, or 9.4 • million, have special health care needs, based on the MCHB definition. • Approximately 1 out of 5 homes in the United States has a child or youth • with special health care needs. • Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. BUILDING A FRAMWORK… • Currently there are parent advisors working with AAP members to accomplish goals and objectives of individual sections within the academy. Yet, there is no formal structure for advisory involvement and no central repository of practical strategies, resources, and data for members to learn from. This demonstration will offer members the opportunity to identify firsthand the work already accomplished and explore future possibilities to collaborate with families. • Do you know a Family Advisor working within the AAP? • Please let us know! Katie was in foster care for abuse and neglect until her new parents adopted her. Later, Katie underwent five organ transplants due to a condition known as Pseudo-Obstructive Disorder of the bowels. Today, she is clinically stable but requires several medications and therapy. HOW CAN WE HELP YOU? Our goal is to serve as an effective model for AAP sections and committees, and develop a central resource within the Academy to assist members in creating effective family-professional partnerships. If you would like to learn more about this initiative or would like to get involved, please contact Becky Marco at bmarco@aap.org or call 847-434-4325. Candace, was 8 years old, when she suffered a massive stroke on the school playground. Doctors discovered that an inoperable Arterial Venous Malformation (AVM) caused the stroke. In 2007, Candace passed away. We will miss her love for life, great smile and her tremendous gifts & talents. Her memory lives on. Jacob was born with multiple birth defects. Today, he has a tracheostomy tube, is on a ventilator at night and has a feeding tube for night feedings. At age 18, this is his homecoming photo. Jacob loves driving his car and plans to attend community college.