AMERICAN ACADEMY OF PEDIATRICSPARENT ADVISORY GROUP (PAG)

SUPPORTING CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDSTHROUGH THE FAMILY-CENTERED CARE APPROACH

In 2006, The AAP Board of Directors voted to approve the Parent Advisory Group 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 (PAG) three year pilot. Thus was the beginning of the first PAG within the Academy under the Section on Home Care. under the Section on Home Care.

Members of the PAG are all professionals in the field of health care including national 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 organizations, community based agencies and hospitals. All members share a special interest in family-centered care and personal experience with children with special health interest in family-centered care and personal experience with children with special health care needs. care needs.

In a In a family-centeredfamily-centered approach to care, the family is viewed as the constant in a 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 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 approach, health care providers engage in partnerships with families in direct care, and also in policy development, performance improvement, research, care, and also in policy development, performance improvement, research, evaluation, and professional education. The AAP supports the principles of evaluation, and professional education. The AAP supports the principles of family-centered care. family-centered care.   

Like many other sections within the AAP, the Section on Homecare received input from knowledgeable and 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 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 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 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 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 support for sections that see home care as a goal for all childrenall children. .   By establishing a structured process to include parents as advisors, the Section will gain insight into families’ 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 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. 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 By documenting activities and outcomes of the PAG, other AAP members can build upon successful Parent-professional partnerships within the Academy. successful Parent-professional partnerships within the Academy.

Our goal is to serve as an effective model for AAP Our goal is to serve as an effective model for AAP sections and committees, and develop a central resource sections and committees, and develop a central resource within the Academy to assist members in creating within the Academy to assist members in creating effective family-professional partnerships. If you would effective family-professional partnerships. If you would like to learn more about this initiative or would like to get like to learn more about this initiative or would like to get involved, please contact Becky Marco at involved, please contact Becky Marco at bmarco@aap.org or call 847-434-4325. or call 847-434-4325.

Currently there are parent advisors working with AAP members to accomplish goals and 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 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 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 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 firsthand the work already accomplished and explore future possibilities to collaborate with

familiesfamilies. . Do you know a Family Advisor working within the AAP?

Please let us know!

Approximately 12.8 percent of children/youth in the United States, or 9.4Approximately 12.8 percent of children/youth in the United States, or 9.4 million, have special health care needs, based on the MCHB definition.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 youthApproximately 1 out of 5 homes in the United States has a child or youth with special health care needs.with special health care needs.

Children with special health care needs Children with special health care needs are those who have or are are those who have or are at increased risk for a chronic physical, developmental, behavioral, or at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of emotional condition and who also require health and related services of a type or amount beyond that required by children generally. a type or amount beyond that required by children generally.

BACKGROUND

DID YOU KNOW….

Why Establish a Parent Advisory Group (PAG)? WHAT IS FAMILY-CENTERED CARE?

BUILDING A FRAMWORK…

HOW CAN WE HELP YOU?

Jacob was born with multiple birth defects. Today, he Jacob was born with multiple birth defects. Today, he has a tracheostomy tube, is on a ventilator at night and has a tracheostomy tube, is on a ventilator at night and has a feeding tube for night feedings. At age 18, this is has a feeding tube for night feedings. At age 18, this is hishis homecoming homecoming photo. Jacob loves driving his car and photo. Jacob loves driving his car and plans to attend community college. plans to attend community college.

Katie was in foster Katie was in foster care for abuse and care for abuse and neglect until her neglect until her

new parents adopted new parents adopted her. Later, Katie her. Later, Katie underwent five underwent five

organ transplants organ transplants due to a condition due to a condition known as Pseudo-known as Pseudo-

Obstructive Obstructive Disorder of the Disorder of the

bowels. Today, she bowels. Today, she is clinically stable is clinically stable

but requires several but requires several medications and medications and

therapy. therapy.

Candace, was 8 years old, when she suffered a massive Candace, was 8 years old, when she suffered a massive stroke on the school playground. Doctors discovered stroke on the school playground. Doctors discovered that an inoperable Arterial Venous Malformation that an inoperable Arterial Venous Malformation (AVM) caused the stroke. In 2007, Candace passed (AVM) caused the stroke. In 2007, Candace passed away. We will miss her love for life, great smile and away. We will miss her love for life, great smile and her tremendous gifts & talents. Her memory lives on. her tremendous gifts & talents. Her memory lives on.