empowering pediatric patients, families, and clinicians through legislative advocacy

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?

Contact me at:

Matthew.Wright@childrenshospitals.org