The Role of Advocac c to Improve Systems of Care Mark Del Monte, - - PDF document

The Role of Advocac c to Improve Systems of Care

Mark Del Monte, JD CEO, Executive Vice President

Mark Del Monte, JD has documented he has no financial conflicts to disclose.

Disclosure

"The American Academy of Pediatrics recommends that pediatricians take the steps they would for any potential infectious disease outbreak, including preparing their offices or clinics to adopt standard infection-control practices, collaborating with their local hospital and health systems, and advising families in their practice to stay home from work, school and child care if they are sick. The AAP will continue to advise and update members as the situation evolves," said Dr. Sally Goza.

Mission

The mission of the AAP is to attain optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. To accomplish this mission, the AAP shall support the professional needs of its members.

Vision

Children have optimal health and well-being and are valued by society. Academy members practice the highest quality health care and experience professional satisfaction and personal well-being.

Core Values

We believe: In the inherent worth of all children, they are

• ur most enduring and vulnerable legacy.

Children deserve optimal health and the highest quality health care. Pediatricians and subspecialists are the best qualified to provide child health care. Multidisciplinary teams including patients and families are integral to delivering the highest quality health care. The AAP is the organization to advance child health and well-being and the profession of

• AAP Mission, Vision, Values

children under the age of 18 have special health care needs (19.8%)

hildren (birth to 5 years): 11.4% d 6-11: 22.7% d 12-17: 25.1%

s have special health care needs, compared to 17.0 % of girls children with special health care needs varies among income groups

es below 100 percent of the FPL 16%

hot: Children with Special Health Care Needs

cians and Health Care Systems Are (or W W For Patients with Developmental Disabi

1 in 5 children has a special health care need 1 in 6 children has a developmental disability 1 in 4 adults has a disability Systems of care that meet the needs of individuals with disabilities will also

A h her’s e ew

amily

• Centered,

mmunity

• Based

tem of Services menting a System of Services for Child d Youth With Special Health Care Need

• Social Security Administration
• Maternal and Child Health Bureau (MCHB
• Federal and state Medicaid agencies
• Private health insurers
• Public and private mental health and

substance abuse providers

• Supplemental Security Income program,
• Public education (early intervention and

Level

and financing services by eligibility determination, xible funding streams,

• grammatic

y/accountability of service

menting a System of Services for Child d Youth With Special Health Care Need d

Level

perational interagency ve relationships so families can vices when they need them. structures tailored to local needs e under broad state and federal to ensure accountability and

• Community
• level service systems
• Physicians and other health care

providers

• Local schools
• Social service providers
• Families

family caregivers provide unpaid care 470 billion annually to adults who need aily activities n family caregivers provide care to a child 18 because of a medical, behavioral, or tion or disability f l b h d l d

Snapshot: Family Caregivers

• tional

, and f financialchallenges experience emotional strain andm mental health pecially depression physical health than non

• caregivers

propriately recognized ,i included , and

Snapshot: Family Caregivers

re p principal caregivers and center of strength/support milies are i integral partners

• f the health care team

ize and value diversity among patients, families, ns n the strengths

• f children and families

werthem to communicate theirstrengths families, s

lies Must Not Only Take Part in Syste e edesign Efforts But Help Guide Them

les for Family Engagement

t and inform pediatricians and the AAP AAP think “outside the box” and p provide missing ctives he AAP standardize family engagement s i inputfrom families and youth on strategic areas s and p provides family/youth perspective to AAP missing ent egic tito AAP v to e

• AP FamilY Partnerships Network

Using Advocacy to “Move the Dial”

ive

moting positive legislation: merican’s With Disabilities Act ental Health Parity Act e ABLE Act e Affordable Care Act lizing to stop harmful legislation

• rts to repeal protections from the

Regulatory

• Replying to proposed rules from the

Social Security Administration, Department of Education, Department

• f Health and Human Services, etc.

Advocacy Takes Many Forms

Changing Public Policy Political al Scientific Knowledge

Julius B. Richmond Model: Changing Public Policy

1) Identify decision makers – Who’s in charge? 2) Build coalitions and set a goal –Find partners and agree 3) Mobilize–Have an action plan 4) Craft a message and speak out D id t

Hope is Not a Strategy

You work with those with special health ca a needs every day…

• You are the expert!
• You know the needs of your patients and th

families

• You live with the rules of practice and paym

— you know what works and what does not

Snapshot: Physicians, Nurses and Allied Health Professionals

• Patients and self
• advocates
• Family members/caregivers
• Physicians, nurses, allied health professio
• Medical societies and advocacy organiza

– We’re stronger together – People who are affected by a decision or change need to be at the table

Advocacy is a Team Sport

anize:Put a face to an issue rate: Paint a picture of how an issue impacts real ren and families table:Put audience in the shoes of that person morable:More than just a number or statistic

y Are Stories Important to Advocacy?

as 5 minutes: patient story to frame

• cacy

e news, listen to the radio, e paper. Ask yourself, s this affect patients with ental disabilities?”

acy Opportunities

• ,

h

In less than 30 minutes:

• Set up google news alerts with ke

words about developmental and intellectual disabilities for your hometown paper

• Set up a social media account and

help contribute to conversations about caring for those with

Advocacy Opportunities

n hour: tter to the editor or op

• ed

cal paper

• fessional rounds or noon

ce presentation on advocacy article for your

acy Opportunities

• n

ral Legislation in the 115

th& 116 th Congress

Reauthorizations

• Autism CARES Reauthorization Act (P.L. 116
• 60)
• Early Hearing Detection and Intervention Act (P.L. 115
• 71)
• PREEMIE Act (P.L. 115
• 328)
• Congenital Heart Futures Act (P.L. 115
• 342)

New Legislation

• Kevin and Avonte’s Law (added as amendment to the FY18
• mnibus appropriations bill
• P.L. 115
• 141)

th Care e essionals Trusted e es

Questions?