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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 childs 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_at_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.