Advocacy
American Academy of Pediatrics
Family Voices
Maternal and Child Health Bureau
National Association of Children’s Hospitals and Related
Institutions
and
Shriners Hospitals for Children
Learning Objectives
• Discuss the importance of advocacy for
children and youth with special health care
needs (CYSHCN).
• Understand everyone has a role as an
advocate for CYSHCN.
• Identify actions individuals can take to
advocate for CYSHCN.
• Encourage partnerships to enhance
advocacy action.
• Apply advocacy skills to the exercise/case
study.
Section One: The Importance
of Advocacy
Why Is Advocacy Important?
• Keeps the well-being of the child and
family at the forefront
• Promotes change at the “systems” level
• Enhances the impact of individual
efforts
• Works to overcome system barriers
• Highlights services that are available to
the public
Where Is Advocacy Needed?
Advocacy should be a part of all aspects of care.
• Financial: access, managed care; Medicaid/SCHIP;
reimbursement; supplemental assistance/programs
• Community: school, respite, child care, transportation
• Psychosocial: family, abuse/neglect, palliative care, foster
care/adoption
• Legal: guardianship, liability, do not resuscitate, consent,
confidentiality
Why Should a Physician/Allied
Health Care Provider Be an
Advocate?
• Are keenly aware of the needs of CYSHCN
and family
• Bring credibility
• Are generally seen as trustworthy
• Are seen most often as working on behalf of
children
• Can see trends/effects of health care system
changes and their impact on their patients
and families
How do Family
Members/Caregivers Become
Advocates?
• Acknowledge that you are the best advocate
for your child or youth
• Make contact with another family or a support
group for assistance and to share information
• Learn all you can about the conditions of your
child or youth
How do Family
Members/Caregivers Become
Advocates? (cont’d)
• Learn about the service systems available
• Keep records and notes; store in one place
• Know your child’s or youth’s health insurance
plan
• Insist on being part of family-centered care
from all providers
Barriers to Advocacy
• Lack of time
• Lack of comfort with/knowledge of
advocacy process
• Lack of volunteers
Section Two: An Individual
Advocate’s Role
Steps in Achieving Advocacy:
For an Individual
Step 1: Develop a Foundation
of Knowledge
• Decide on 1 or 2 issues that particularly
interest you, and really get to know the
issue(s)
• Identify all “players” that are involved in
the issue
Step 2: Join Advocacy Groups
or Coalitions
Value of Coalitions
• Working together, people and agencies are more
likely to be effective
• Increased resources, shared workload
• Variety of perspectives and areas of expertise are
brought to the table
• Know and share what health and social services are
available in the community for families of CYSHCN
• Help community-based services see the importance
of health promotion and medical care in educational,
vocational, and social success of CYSHCN
Step 3: Develop Credibility in
Your Community Through
• Community service
• Networking
• Developing relationships with
governmental and nongovernmental
organizations and officials
Step 4: Find Opportunities to
Speak Out
•
•
•
•
•
Public hearings—community forums
Parent group meetings
Ongoing advisory councils
Special commissions or boards
Service clubs
Develop Your Message
•
•
•
•
•
Meaningful
Unambiguous
Elegant
Understandable
Convincing
Clarify Your Message by
Telling a Story
• Identify the urgent clinical problem
• Avoid using clinical language
• Briefly describe a family or child that
best illustrates this problem
• State your proposed solution clearly
Become a Trusted Source of
Information
• Keep up with key contacts/advocates
• Send information without asking
anything in return
• Identify, work with, and encourage new
persons with an interest in this
population
Step 5: Develop a Good Relationship
With the Media (ie, newspaper, radio, TV)
• Many organizations have “how-to”
packets on establishing good media
relations
• Develop news releases related to
medical homes for CYSHCN that can
be published in local papers
• Send thank-you letters to the media
after you are interviewed
Section Three: Partnerships
for Group Advocacy
Value of Partnerships
• Increase links to decision makers
• Provide background information on legislative
issues
• Identify others interested in same issue(s)
• Enhance credibility with governmental
agencies and other advocacy groups
• Increase resources, share workload
Value of Partnerships
• Increase links to decision makers
• Provide background information on legislative
issues
• Identify others interested in same issue(s)
• Enhance credibility with governmental
agencies and other advocacy groups
• Increase resources, share workload
Advocacy Partners
• AAP and American Academy of Family Physicians
chapters
• Parents
• Children’s, Shriners, and university hospitals
• Local family advocacy groups
• State medical societies and other specialty societies
• State-based disability groups
• Disease-oriented voluntary organizations
• Business leaders; government agencies
• State and local bar associations
• Independent living centers
• Service clubs
Key Agencies and Groups
•
•
•
•
•
•
•
•
•
•
•
Managed care organizations
Private insurance providers
Medicaid
US Maternal and Child Health Bureau Title V Children
with Special Health Care Needs
Other health department programs
Special/regular education
Early intervention, preschool programs, infant/toddler
community programs
Genetic programs
Policy makers (local, state, and federal legislators)
State/federal programs and agencies
Medical schools—students and residents
Develop a Strategy Built on
Achieving Incremental
Success
• Comprehensive change is often difficult to
achieve
• Big wins often require perfect
timing—small wins make the
process manageable and less
daunting
Identify Potential Opposition
and Attempt to Influence Their
Position
• Explain how your position can be beneficial to
their position; identify mutual gains
• Help them recognize that “investing in
children’s health makes good sense”
• Explain potential public relations problems of
taking a position that could potentially harm
children
• Remember that your adversaries may be
your future partners
Don’t Burn Bridges With
Legislators; Treat Them With
Respect
•
•
•
•
Don’t personally attack
Don’t play one legislator against another
Don’t question their integrity
Never assume a position of active opposition
without attempting to compromise
• Consider including “the other side” in defining
your problem and developing solutions
Be Pragmatic and Willing to
Compromise
• Prioritize key elements of the legislation
• Identify issues of lower priority to your
group that seem to have greater value
to your adversary
• Assess the possibility of regaining the
lost element at a later time in the
process or in subsequent legislation
Consider Working With a
Lobbyist
• Some coalitions may be able to afford
one
• Align with an organization that already
has a lobbyist (many AAP chapters do)
• Recruit effective and active people if a
lobbyist is not possible
Be Seen as an Advocate for
Others and Not for Yourself
• Focus on benefits to children and
families
• Use real-life examples to personalize
messages
• Explain impact on the community
Section Four: Case
Study/Group Exercise
Building an Advocacy Plan
• Who will invite other potential partners to join?
• Who will invite local/state groups to collaboratively
advocate?
• What is the local/state legislative process? Where is your
issue in this process?
• What key contacts do we need to make?
• What opportunities can we use to advocate for the issue?
• What opportunities do we have for media exposure?
• Who is our spokesperson?
Section Five: Wrap-up
Take Home Message: Fitting
Advocacy Into Busy Lives
• Talk—tell stories
• Get on an advocacy alert e-mail list
• Set up a table to share information about an
issue
• Wear a conspicuous badge/T-shirt
• Distribute campaign brochures for a political
candidate with whom you support
Pendergrass TW. Advocacy: state & local issues and collaborations. Presented at: Pediatrician’s Institute; May
2003; Chicago, IL
Learning Objectives
• Discuss the importance of advocacy for
children and youth with special health care
needs (CYSHCN).
• Understand everyone has a role as an
advocate for CYSHCN.
• Identify actions individuals can take to
advocate for CYSHCN.
• Encourage partnerships to enhance
advocacy action.
• Apply advocacy skills to the exercise/case
study.