The Role of Advocac c to Improve Systems of Care Mark Del Monte, JD CEO, Executive Vice President Disclosure Mark Del Monte, JD has documented he has no financial conflicts to disclose.
"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. AAP Mission, Vision, Values Core Values Mission We believe: The mission of the AAP is to attain optimal physical, In the inherent worth of all children, they are mental, and social health and well-being for all our most enduring and vulnerable legacy. infants, children, adolescents, and young adults. To accomplish this mission, the AAP shall support the Children deserve optimal health and the professional needs of its members. highest quality health care. Pediatricians and subspecialists are the best Vision qualified to provide child health care. Children have optimal health and well-being and are Multidisciplinary teams including patients and valued by society. Academy members practice the families are integral to delivering the highest highest quality health care and experience quality health care. professional satisfaction and personal well-being. The AAP is the organization to advance child health and well-being and the profession of �����������
hot: Children with Special Health Care Needs 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%
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 Level • Social Security Administration • Maternal and Child Health Bureau (MCHB and financing services by • Federal and state Medicaid agencies eligibility determination, • Private health insurers xible funding streams, • Public and private mental health and ogrammatic substance abuse providers y/accountability of service • Supplemental Security Income program, • Public education (early intervention and
menting a System of Services for Child d Youth With Special Health Care Need d Level • Community -level service systems • Physicians and other health care perational interagency providers ve relationships so families can • Local schools vices when they need them. structures tailored to local needs • Social service providers e under broad state and federal • Families to ensure accountability and Snapshot: Family Caregivers 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 otional , and f financialchallenges experience emotional strain andm mental health pecially depression physical health than non -caregivers propriately recognized ,i included , and lies Must Not Only Take Part in Syste edesign Efforts But Help Guide Them e les for Family Engagement re principal caregivers p and center of strength/support milies are i integral partners of the health care team ize and value diversity among patients, families, families, ns n the strengths of children and families werthem to communicate theirstrengths s
AP FamilY Partnerships Network t and inform pediatricians and the AAP AAP think “outside the box” and p provide missing missing ctives he AAP standardize family engagement ent s inputfrom families and youth on i strategic egic areas s and p provides family/youth perspective tito AAP to AAP to v o e Using Advocacy to “Move the Dial”
Advocacy Takes Many Forms Regulatory ive • Replying to proposed rules from the moting positive legislation: Social Security Administration, merican’s With Disabilities Act Department of Education, Department ental Health Parity Act of Health and Human Services, etc. e ABLE Act e Affordable Care Act lizing to stop harmful legislation orts to repeal protections from the Scientific Knowledge Julius B. Richmond Model: Changing Public Policy Changing Public Policy al Political
Hope is Not a Strategy 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 Snapshot: Physicians, Nurses and Allied Health Professionals 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
Advocacy is a Team Sport • 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 y Are Stories Important to Advocacy? 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
acy Opportunities as 5 minutes: patient story to frame ocacy e news, listen to the radio, o, e paper. Ask yourself, s this affect patients with h ental disabilities?” Advocacy Opportunities 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
acy Opportunities n hour: tter to the editor or op -ed cal paper ofessional rounds or noon on ce presentation on advocacy article for your th Congress th & 116 ral Legislation in the 115 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 omnibus appropriations bill -P.L. 115 -141)
Questions ? es e Trusted essionals e th Care
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