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Child Health Policy in the 20th Century + 10

For

UF & UAB

Pediatric Pulmonary Centers November 17, 2010

John G. Reiss, PhDAssociate Professor of Pediatrics, University of

FloridaInstitute for Child Health Policyhttp://hctransitions.ichp.ufl.edu

Provide and promote family-Provide and promote family-centered, community-based, centered, community-based, coordinated care (including care coordinated care (including care coordination services…) for coordination services…) for CSHCN…CSHCN…

Facilitate development of Facilitate development of community- based systems of community- based systems of services for…(CSHCN) services for…(CSHCN) and their and their families…families…

Federal Policy - CYSHCNFederal Policy - CYSHCN20102010

• 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 AgendaNational AgendaAchieving Success for CYSHCNAchieving Success for CYSHCN

Direct Health CareDirect Health Care

Enabling ServicesEnabling Services

Population-BasedPopulation-Based

Infrastructure Infrastructure BuildingBuilding

The MCH PyramidThe MCH Pyramid

Infrastructure BuildingInfrastructure Building

Needs Needs Assessment Assessment

Evaluation Evaluation

Planning Planning

Policy Policy DevelopmentDevelopment

Quality Quality AssuranceAssurance

MonitoringMonitoring

Training a Multidisciplinary Workforce

Standards Development

Applied Research

Systems of Care

Information Systems

Federal Policy – Children’s HealthFederal Policy – Children’s Health19001900

Following Policy ChangeFollowing Policy Change1900 to 20101900 to 2010

WhoWho WhatWhat WhereWhere WhyWhy

Medical Knowledge Economics Social & Political Climate PP&PP2

People in power & their “pet projects”

People in power & their “pet peeves”

Why Change? Why Change? Forces and FactorsForces and Factors

How MuchHow Much Of WhatOf What From WhomFrom Whom Under What Under What CircumstancesCircumstances

So WhatSo What

Health Health Policy Policy The DetailsThe Details

In 1909, President Theodore Roosevelt In 1909, President Theodore Roosevelt convened an advisory group of medical convened an advisory group of medical professionals and lay leaders interested professionals and lay leaders interested in the care of dependent children. in the care of dependent children.

Major recommendation: Major recommendation: Develop a Develop a FederalFederal Children’s Bureau Children’s Bureau(Note: Teddy Roosevelt was a “sickly” child.)(Note: Teddy Roosevelt was a “sickly” child.)

1909: First White House 1909: First White House Conference on Care of Dependent Conference on Care of Dependent

ChildrenChildren

Visiting Nurses Organize Prenatal Care

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 1912: Children’s Bureau

Medical KnowledgeMedical Knowledge Infectious and crippling conditionsInfectious and crippling conditions

TB; Diphtheria; TyphoidTB; Diphtheria; Typhoid Surgical interventions (WWI)Surgical interventions (WWI) Physician as professional expertPhysician as professional expert

PaternalismPaternalism Focus on disease (not patient)Focus on disease (not patient)

1900-19301900-1930

Women Get The Vote - Women Get The Vote - 19201920

What - Social Security ActWhat - Social Security Act Why – Economic DepressionWhy – Economic Depression Who – FDR - polioWho – FDR - polio So What – So What –

Federal funding to statesFederal funding to states Services for crippling Services for crippling

conditionsconditions

1930 - 19411930 - 1941

National Foundation for Infantile ParalysisNational Foundation for Infantile Paralysis(March of Dimes - 1932)(March of Dimes - 1932)

Death Rates for Infants (under age 1 year) by Race (1935-2007)

Death Rates for Children by Race (1935-2007) Ages 1-4 Years Ages 5-14 Years

Title V Section onChildren who have or are at risk for crippling

Extend and improve services as far as practicable

Title V Legislation (1935)Title V Legislation (1935)

• LocateLocate• DiagnoseDiagnose• Hospitalize (treat)Hospitalize (treat)• Aftercare (follow-up)Aftercare (follow-up)

Title V Service FocusTitle V Service Focus

The Children’s Clinic Pediatrician

Child with RicketsChild with Rickets

• Started state “Crippled Children Started state “Crippled Children Services” Services” (CCS) Programs(CCS) Programs

• Determined the population it Determined the population it would serve based on an would serve based on an assessment of needs in the assessment of needs in the statestate

State response to Title VState response to Title V

Direct Health Direct Health CareCare

1935 MCH Pyramid1935 MCH Pyramid

• What - Medical science and technologyWhat - Medical science and technology• What - Health insurance - labor benefitWhat - Health insurance - labor benefit• Why – WW IIWhy – WW II• Why - Age of scienceWhy - Age of science• So What – So What –

• Health care specializationHealth care specialization• Chronic & crippling conditionsChronic & crippling conditions• Employment-based health insuranceEmployment-based health insurance

1941 - 19601941 - 1960

National Association National Association of Retarded Children - of Retarded Children -

19521952

Polio Vaccine 1954 - 1956Polio Vaccine 1954 - 1956

• Who - JFK & FamilyWho - JFK & Family• PPPP - Programs for mental PPPP - Programs for mental

retardation & premature infantsretardation & premature infants• Why – JFK sister & death of infant Why – JFK sister & death of infant

sonson• So What –So What – Growth of neonatologyGrowth of neonatology

• MR/DD programs, facilities & professionalsMR/DD programs, facilities & professionals• Specialization of services & supportsSpecialization of services & supports• Peace CorpsPeace Corps

1961 - 19631961 - 1963

• Recommendations from the Panel on Mental Recommendations from the Panel on Mental Retardation, appointed by President Kennedy, Retardation, appointed by President Kennedy, were the foundation for Public Law 88-156. were the foundation for Public Law 88-156.

• This public law authorized a new Title V This public law authorized a new Title V program for projects essential to the research program for projects essential to the research and evaluation of issues concerning the care and evaluation of issues concerning the care and treatment of the mentally retarded.and treatment of the mentally retarded.

1963: Title V Appropriation 1963: Title V Appropriation

for Research P.L. 88-156for Research P.L. 88-156

• Federation for Children with Special Federation for Children with Special Needs (1974) - Beginning of the Needs (1974) - Beginning of the organized parent movementorganized parent movement

• PL 94-142 (1975) Educational rightsPL 94-142 (1975) Educational rights

• Deinstitutionalization beginsDeinstitutionalization begins

1970’s1970’s

Individuals with Disabilities Individuals with Disabilities Education Act (IDEA) (1986)Education Act (IDEA) (1986)

Early intervention (3-5)Early intervention (3-5) Individualized Family Individualized Family

Service PlansService Plans

PL 99-457PL 99-457

• PPPPPPPP––Koop (Surgeon Koop (Surgeon General), General),

• MCHB MCHB (McPherson, Hutchins)(McPherson, Hutchins)• FamiliesFamilies• Iowa connection – Katie Iowa connection – Katie

Beckett Waiver (1981)Beckett Waiver (1981)• (Harkin, Maqueen, Beckett)(Harkin, Maqueen, Beckett)

Why Change in the 80’sWhy Change in the 80’s

C. Everett Koop, MDPediatric Surgeon

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

Title V AmendmentTitle V AmendmentCSHCNCSHCN

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’sWhy Change in the 80’s

• Medicaid “waivers” allowed for Medicaid “waivers” allowed for funding of care that was provided funding of care that was provided outside of an institutional setting outside of an institutional setting (i.e. in homes and communities).(i.e. in homes and communities).

Medicaid Changes

• Title V amendment required Title V amendment required Medicaid funds to be used to pay Medicaid funds to be used to pay for “direct care services” before for “direct care services” before Title V funds be used for this Title V funds be used for this purpose.purpose.

• Provide and promote family-Provide and promote family-centered, community-based, centered, community-based, coordinated care (including care coordinated care (including care coordination services…) for coordination services…) for CSHCN…CSHCN…

• Facilitate development of Facilitate development of community-based systems of services community-based systems of services for… (CSHCN) for… (CSHCN) and their families…and their families…

Title V CSHCN Systems Focus

President Bill ClintonPresident Bill Clinton

• Why – Medical advancesWhy – Medical advances• Why – CSHCN common needsWhy – CSHCN common needs• Why - Middle class advocacyWhy - Middle class advocacy• Why – Financing (Medicaid)Why – Financing (Medicaid)• So What – Systems FocusSo What – Systems Focus• Family as Essential PartnersFamily as Essential Partners

Why Change in the 90’sWhy Change in the 90’s

• Managed Care for CSHCNManaged Care for CSHCN• Family Voices formedFamily Voices formed• (Beckett, Arango, Wells others)(Beckett, Arango, Wells others)

• MCHB (Title V) support of an MCHB (Title V) support of an independent Family independent Family InfrastructureInfrastructure

• (McPherson, Hutchins)(McPherson, Hutchins)

Clinton 1993 Health PlanClinton 1993 Health Plan

The Bush YearsThe Bush Years

Life span in Cystic FibrosisLife span in Cystic Fibrosis

0

5

10

15

20

25

30

35

40

1940 1950 1960 1970 1980 1990 2000

Source: Cystic Fibrosis Foundation. Patient registry 2000 annual data report. 2001 CFF. Bethesda, MD: )

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18+

8,636

39%

Adult (age 18+) CF Patients

Katie Beckett tells her own story: http://www.npr.org/templates/story/story.php?storyId=131145687

Young AdultsYoung Adults

Health Care Reform

?

2010 2010