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Empowering Pediatric Patients,
Families, and Clinicians through
Legislative Advocacy
Matthew Wright Advocacy Outreach & Mobilization Director
Pacific Northwest Child Life Association - Spring 2015 Daycamp
April 17, 2015
Agenda
• What does it mean to be an advocate?
• Who should be engaged in legislative advocacy?
• How and where can pediatric patients, families and
clinicians get involved?
• Got questions?
2
What is an Advocate?
According to the Merriam-Webster Dictionary:
advocate (n.)
1. One who pleads another’s cause
2. One who argues or pleads for a cause or proposal
3
Why Is Being an Advocate Important?
• Advances change that can benefit your patients and
your profession
• Keeps the interests of your patients, their families and
clinicians on the radar screen of key decision-makers
4
Why Should You Be a Pediatric Patient Advocate?
• As a Child Life Specialist, you know the needs of patients, their families and clinicians to ensure best possible outcomes
• You bring credibility to those needs and are most often perceived as working on behalf of others
5
Who Else Should Be a Pediatric Patient
Advocate?
• Other health care professionals who recognize the
needs of patients and their families
• Your patients and their families
6
Road Blocks to Advocacy
• Lack of time
• Lack of knowledge with the issue(s)
• Lack of comfort engaging others about policy
7
How Do You Get Started?
• Is there an interest of yours which hasn’t been
addressed well?
• Learn more about that interest and who else shares
your concern.
• Contact others who share your interest or ask them
to join you.
• Join other professional groups to share information
and seek assistance.
8
Interest
• Decide on 1-2 issues that particularly
interest (or bother) you
• Become an expert by learning more
about the issue(s)
• Identify all “players” involved in the issue – those
who support and those who oppose
9
Speak Out on Your Issue
• Public hearings, town halls and advisory boards
• Letters to the editor
• Online activities
• Messages to and meetings with elected officials
10
11
Speak Now for Kids
Join us and take 3 steps:
• Learn Now
• Speak Now
• Act Now
Let’s check it out!
12
Extending CHIP Funding
• Children’s Health Insurance Program (CHIP) is a federal-state partnership
that offers health coverage to kids in working families who earn too much
for Medicaid eligibility, but still can’t afford private coverage
• Federal funding for CHIP was scheduled to expire in September 2015,
impacting 10+ million kids nationwide
• Discontinued federal investment in CHIP would lead to the disenrollment of
millions of kids from health coverage by the end of 2015
• Why?
o Most state legislatures finish their sessions by late-May and are required to
enact the next fiscal year’s budget before adjournment
o States can’t afford to pay 100% of the cost to cover CHIP kids, so they needed
Congress to take action well before September
13
Speak Now for Kids’ Role in Extending CHIP
• Mobilized key influencers of members of Congress, such as governors,
state legislators, hospital CEOs, parents, clinicians and others supporting CHIP
• Activated our Speak Now for Kids supporters to send messages to their
respective members of Congress
• Engaged millions of people online to increase visibility of the issue and amplify
messaging to lawmakers 14
Speak Now for Kids Ambassador –
Jen Arnold, MD
• Neonatologist and medical educator
at Texas Children’s Hospital
• Mother of two children with medical
complexity
• Endured her own complex medical
conditions as a child
• Star of hit TLC series, “The Little Couple”
15
Why do Dr. Arnold, her fellow clinicians and
patient families believe in Speak Now for Kids?
16
Speak Now for Kids Family Advocacy Day
17
June 15-16
Washington, DC
Impact of Family Advocacy Day
18
Challenges for Children with Complex Medical Conditions
• Roughly 3 million children – 1 in 25 kids – have complex medical conditions; of that
population, 2 million rely on Medicaid to access care
• Children with medical complexity have multi-year, high-acuity conditions often requiring
the services of multiple specialists and requiring time intensive coordination of care
• Complex medical conditions can occur as a result of many of causes, including
prematurity, cancer, heart defects and severe injury
• Their specialized care often requires providers in more than one state
19
Challenges for Children with Complex Medical Conditions
• Care for children with medical complexity is
unique, complicated and expensive
• Children with complex medical
conditions are roughly 6% of kids
in Medicaid, but account for
up to 40% of the program’s costs
• Overall population of children with
medical complexity is growing due to
important advances in medical care,
such as care for premature infants
• Coordinating care for kids with medical complexity is incredibly time intensive,
difficult and, in the current system, it usually falls to a parent or guardian
20
Advancing Care for Exceptional (ACE) Kids Act
• Give children and their families a centralized point of
contact for care coordination, relieving families of
the burden of solely coordinating their child’s
medical care
• Data shows that care coordination decreases
hospitalization and improves outcomes
• ACE Kids Act would also streamline care across
state lines
• As a whole, the ACE Kids Act assures that children
with medical complexity in Medicaid will see the right
health care providers at the appropriate time, regardless
of where a child lives or a provider works
21
ACE Kids Act is Designed to…
• Accelerate formation of networks for children with medical complexity
• Prioritize choice – voluntary for states, children, physicians and hospitals
• Accelerate the spread of care models designed to save money & improve care
• Enhance seamless access to out-of-state care
• Advance national quality and cost improvement work
22
ACE Kids Act Introduced in Congress
AK
AL
IN
KY MO
MT ND
NH
NM
OR
PA
WV
WY
MS
SD
AR
NE
CO
ME
TN
MI
OH
TX
OK
DC
VA
SC
MA
HI
UT
IA
MD
RI
ID
GA
DE
NC
IL
KS
WA
MN
WI
VT
NJ
LA
FL
CT
NY
CA
AZ
NV
ACE Kids Act: Champions
Joe Barton
(R-TX)
Chuck Grassley
(R-IA) Rob Portman
(R-OH)
Michael Bennet
(D-CO) Gene Green
(D-TX)
Bill Nelson
(D-FL) Kathy Castor
(D-FL)
Sherrod Brown
(D-OH)
Jaime Herrera
Beutler (R-WA)
Anna Eshoo
(D-CA)
Dave Reichert
(R-WA)
Roy Blunt
(R-MO)
Mark Kirk
(R-IL)
Patty Murray
(D-WA)
Rep. Jaime Herrera Beutler (R-WA)
Pediatric Advocacy: Start with Small Bites
• Comprehensive change often requires perfect alignment of
multiple variables – including luck
• A series of small success can make the experience manageable
and less daunting
Take Home Messages
• Identify your interests from a clinical
perspective
• Find out who else shares your interest(s)
• Contact others, such as patient families
and fellow clinicians, who share your
interest(s) and advocate together
• Join other professional groups to share
information and seek assistance
• Speak out and tell your story
Advocate for Others – Not Only for Yourself
• Focus on benefits to patients and families
• Describe your experience as a Child Life Specialist
• Personalize your story with real-life examples
Questions?
