{ Child Health Policy in the 20 th Century + 10 For UF & UAB Pediatric Pulmonary Centers November 17, 2010 John G. Reiss, PhD Associate Professor of Pediatrics, University of Florida Institute for Child Health Policy

 Provide and promote family-centered, community-based, coordinated care (including care coordination services…) for CSHCN…  Facilitate development of community- based systems of services for…(CSHCN) and their families… Federal Policy - CYSHCN

Care within medical home Affordable health insurance Early & continuous screening Families are partners at all levels & are satisfied with services Services organized for easy use Services for transition to adulthood National Agenda Achieving Success for CYSHCN 3

Direct Health Care Enabling Services Population-Based Infrastructure Building The MCH Pyramid

Infrastructure Building  Needs Assessment  Evaluation  Planning  Policy Development  Quality Assurance  Monitoring  Training a Multidisciplinary Workforce  Standards Development  Applied Research  Systems of Care  Information Systems

Federal Policy – Children’s Health

Following Policy Change 1900 to  Who  What  Where  Why

  Medical Knowledge   Economics   Social & Political Climate   PP&PP 2   People in power & their “pet projects”   People in power & their “pet peeves” Why Change? Forces and Factors 8

 How Much  Of What  From Whom  Under What Circumstances  So What 9 Health Policy The Details Health Policy The Details

In 1909, President Theodore Roosevelt convened an advisory group of medical professionals and lay leaders interested in the care of dependent children. Major recommendation: Develop a Federal Children’s Bureau (Note: Teddy Roosevelt was a “sickly” child.) 1909: First White House Conference on Care of Dependent Children 10

Visiting Nurses Organize Prenatal Care 11 The Beginning – Boston 1909

The Bureau’s mission was to “...investigate and report upon matters pertaining to the welfare of children and child life among all classes of people...” Involvement on the part of the Federal government in child/family issues was controversial at the time; Legislation on creating the Bureau was enacted through the active support of President Taft and other key individuals. 1912: Children’s Bureau 12

 Medical Knowledge  Infectious and crippling conditions  TB; Diphtheria; Typhoid  Surgical interventions (WWI)  Physician as professional expert  Paternalism  Focus on disease (not patient)

Women Get The Vote

 What - Social Security Act  Why – Economic Depression  Who – FDR - polio  So What –  Federal funding to states  Services for crippling conditions

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National Foundation for Infantile Paralysis (March of Dimes ) 17

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19 Death Rates for Infants (under age 1 year) by Race ( )

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21 Death Rates for Children by Race ( ) Ages 1-4 Years Ages 5-14 Years

Title V Section on   Children who have or are at risk for crippling Extend and improve services as far as practicable Title V Legislation (1935) 22

Locate Locate Diagnose Diagnose Hospitalize (treat) Hospitalize (treat) Aftercare (follow-up) Aftercare (follow-up) Title V Service Focus 23

The Children’s Clinic Pediatrician 24

Child with Rickets 25

Started state “Crippled Children Services” (CCS) Programs Started state “Crippled Children Services” (CCS) Programs Determined the population it would serve based on an assessment of needs in the state Determined the population it would serve based on an assessment of needs in the state State response to Title V 26

Direct Health Care 1935 MCH Pyramid

What - Medical science and technology What - Medical science and technology What - Health insurance - labor benefit What - Health insurance - labor benefit Why – WW II Why – WW II Why - Age of science Why - Age of science So What – So What – Health care specialization Health care specialization Chronic & crippling conditions Chronic & crippling conditions Employment-based health insurance Employment-based health insurance

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National Association of Retarded Children

Polio Vaccine

Who - JFK & Family Who - JFK & Family PPPP - Programs for mental retardation & premature infants PPPP - Programs for mental retardation & premature infants Why – JFK sister & death of infant son Why – JFK sister & death of infant son So What – Growth of neonatology So What – Growth of neonatology MR/DD programs, facilities & professionals MR/DD programs, facilities & professionals Specialization of services & supports Specialization of services & supports Peace Corps Peace Corps

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Recommendations from the Panel on Mental Retardation, appointed by President Kennedy, were the foundation for Public Law Recommendations from the Panel on Mental Retardation, appointed by President Kennedy, were the foundation for Public Law This public law authorized a new Title V program for projects essential to the research and evaluation of issues concerning the care and treatment of the mentally retarded. This public law authorized a new Title V program for projects essential to the research and evaluation of issues concerning the care and treatment of the mentally retarded. 1963: Title V Appropriation for Research P.L

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Federation for Children with Special Needs (1974) - Beginning of the organized parent movement Federation for Children with Special Needs (1974) - Beginning of the organized parent movement PL (1975) Educational rights PL (1975) Educational rights Deinstitutionalization begins Deinstitutionalization begins 1970’s 37

 Individuals with Disabilities Education Act (IDEA) (1986)  Early intervention (3-5)  Individualized Family Service Plans PL

PPPP – Koop (Surgeon General), PPPP – Koop (Surgeon General), MCHB (McPherson, Hutchins) MCHB (McPherson, Hutchins) Families Families Iowa connection – Katie Beckett Waiver (1981) Iowa connection – Katie Beckett Waiver (1981) (Harkin, Maqueen, Beckett) (Harkin, Maqueen, Beckett) Why Change in the 80’s 39

C. Everett Koop, MD Pediatric Surgeon 40

Children with special health care needs or those who have conditions leading to such status (have or at-risk for) Title V Amendment CSHCN 41

New medical technology allowed children to be cared for at home. Home care was “cost effective”. Families organized and spoke up. Why Change in the 80’s 42

Medicaid “waivers” allowed for funding of care that was provided outside of an institutional setting (i.e. in homes and communities). Medicaid “waivers” allowed for funding of care that was provided outside of an institutional setting (i.e. in homes and communities). Medicaid Changes 43 Title V amendment required Medicaid funds to be used to pay for “direct care services” before Title V funds be used for this purpose. Title V amendment required Medicaid funds to be used to pay for “direct care services” before Title V funds be used for this purpose.

Provide and promote family-centered, community-based, coordinated care (including care coordination services…) for CSHCN… Provide and promote family-centered, community-based, coordinated care (including care coordination services…) for CSHCN… Facilitate development of community-based systems of services for… (CSHCN) and their families… Facilitate development of community-based systems of services for… (CSHCN) and their families… Title V CSHCN Systems Focus 44

President Bill Clinton 45

Why – Medical advances Why – Medical advances Why – CSHCN common needs Why – CSHCN common needs Why - Middle class advocacy Why - Middle class advocacy Why – Financing (Medicaid) Why – Financing (Medicaid) So What – Systems Focus So What – Systems Focus Family as Essential Partners Family as Essential Partners Why Change in the 90’s 46

Managed Care for CSHCN Managed Care for CSHCN Family Voices formed Family Voices formed (Beckett, Arango, Wells others) (Beckett, Arango, Wells others) MCHB (Title V) support of an independent Family Infrastructure MCHB (Title V) support of an independent Family Infrastructure (McPherson, Hutchins) (McPherson, Hutchins) Clinton 1993 Health Plan 47

The Bush Years 48

Life span in Cystic Fibrosis 49

Source: Cystic Fibrosis Foundation. Patient registry 2000 annual data report CFF. Bethesda, MD: ) Number of Adult Patients ( 18+) Percentage of all CF Patients 18+ 8,636 39% Adult (age 18+) CF Patients

Katie Beckett tells her own story: story.php?storyId= story.php?storyId= Young Adults 51

Health Care Reform ?