Public Health Response to Disability in America

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Centers for Disease Control and Prevention

National Center on Birth Defectsand Developmental Disabilities



The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention.

They do not represent and should not be construed to represent any agency determination or policy.



Public Health Response to Disability in America

Public Health Response to Disability in America

Edwin Trevathan, MD, MPHGloria Krahn, PhD, MPH

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The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention (CDC) and should not be construed to represent any agency determination or policy.

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Transitions…Transitions…

…..to new opportunities

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Changing the View of DisabilityChanging the View of Disability

…from defect to diversity

…from burden to resource

…from a life of poverty to “a good life”

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The Changing View of Disability in Public Health

Role of NCBDDD and its partnership with AUCD in Responding to Disability

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Changing View of Disability in Public Health

Changing View of Disability in Public Health

How disability is viewed How public health should respond to

disabilities

Two decades of tremendous change in:

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Quick FactsQuick Facts

In 2006 nearly 14% of children under age 18 were identified with special needs.

Rise in chronic conditions such as asthma (9% of children and adolescents) and obesity (18% of school-aged children)

1 in 33 infants is born with a birth condition associated with disability

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Quick FactsQuick Facts

40-50 million persons 18 years or older report having a disability (1 in 5).

People with disabilities are heterogeneous but, as a group,– Less likely to report excellent/very good health

(27% vs. 60%), with poorest health reported by Hispanics and Native Americans with disabilities

– People with disabilities report more smoking, physical inactivity, and being overweight/obese.

–

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History of Public Health and DisabilityHistory of Public Health and Disability

Historical tensions between disability

community and public health: Distrust by disability advocates Prevention vs the needs of persons with

disabilities Concern of devaluation of persons with

disabilities Health economics and recognizing public cost

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Public Health Functions and ModelPublic Health Functions and Model

Addressing health of populations through:

Surveillance

Research

Prevention

Surveillance Research

Prevention

Public Health Model

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Continuum of PreventionContinuum of Prevention

1. Preventing occurrence of conditions

2. Preventing limitations related to conditions

3. Preventing secondary conditions

4. Promoting health and quality of life of people with disabling conditions

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1. Preventing Occurrence of Conditions1. Preventing Occurrence of Conditions

Methods Surveillance for primary condition Determine cause Identify preventive action Implement policies and public awareness

Example Neural Tube Defects

Emerging Areas Prenatal influences on adult onset disorders Maternal diabetes and child health

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2. Preventing Limitations of Conditions2. Preventing Limitations of Conditions

Methods Screening for identification (e.g., newborn) Identify interventions to prevent limitations Systems to support individual interventions

Example PKU, hearing loss

Emerging Areas Deep Vein Thrombosis, Congenital heart defects

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3. Preventing Secondary Conditions3. Preventing Secondary Conditions

Methods Surveillance of secondary conditions (physical,

social conditions) Identify effective interventions Implement interventions (generic/disability specific)

Examples Obesity in persons with mobility/IDD

Emerging Areas: Health disparities and health care access for adults Environmental access

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4. Promoting Health and Quality of Life4. Promoting Health and Quality of Life

Methods Surveillance of health and QOL Identify determinants of health and QOL Create policies and programs that promote optimal

health and QOL

Examples

Health promotion programs

Emerging Areas: Strengths-based approaches; Perspectives of PWD in measurement

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First Decade of the Changing ViewFirst Decade of the Changing View

1988 First paper on preventing “secondary disabilities”

1990 ADA 1991 IOM Disability in America 1993 CDC conference on preventing

secondary conditions in people with Cerebral Palsy and Spina Bifida;

1994- Health care debate, managed care,health care of CSHCN and people withdisabilities

1997 IOM Enabling America 1999 “Disability Paradox”

1990s

Health promotion interventions

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II. Public Health “Policy” on DisabilityII. Public Health “Policy” on Disability

Healthy People 2010 (2000)• Inclusive and extensive planning

process

• Objectives require an extant, ongoing data set

• Chapter 6 on Disability and Secondary Conditions

13 objectives and references in ~1/4 of all other objectives

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Healthy People 2010Healthy People 2010

• standard definition • depression (child and adult)• social participation • emotional support • life satisfaction • congregate care

• employment • educational inclusion• accessible health programs • assistive devices/technology• environmental barriers • surveillance and health promotion

Chapter 6 with 13 disability objectives (HHS)

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International Classification of Functioning, Disability and Health (WHO, 2001)

International Classification of Functioning, Disability and Health (WHO, 2001)

Departure from diagnostic approach to

emphasize:• Function

• Participation

• Environment Redefining disability as interface of

person with environment Attention to environments

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From the Surgeons GeneralFrom the Surgeons General

2002Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation

2005 Call to Action to Improve the Health and Wellness of Persons with Disabilities

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Closing the Gap—SatcherClosing the Gap—Satcher

Health promotion Research Health care quality Train HC providers HC financing Sources of HC

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Call to Action—Carmona, 2005Call to Action—Carmona, 2005

Topic Area Health promotion Research Health care quality Train HC providers HC financing Sources of HC Public Attitude

SG’02 SG’05 √ √

√ (√) √ -- √ √ √ -- √ √ -- √

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Future of Disability in America—IOM (2007)Future of Disability in America—IOM (2007)

Disability monitoring

– Use and improve ICF; Comprehensive monitoring system

Disability research

– Adequately fund research; Increase visibility and coordination of research

Access to health care and supports

– Accessibility of facilities; Insurance; AT; coordinated care for transition

Public and Professional Education

– Tools for professionals; Public awareness campaign on assistive and accessible technologies

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PH Priorities for DisabilityPH Priorities for Disability

Topic Area Health promotion Research Health care quality Train HC providers HC financing Sources of HC Public Attitude Surveillance

SG’02 SG’05 IOM’07 √ √ (√) √ (√) √ √ -- √ √ √ √ √ -- √ √ √ √ -- √ √ -- -- √

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NCBDDD and the Public Health Response to Disability

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National Center on Birth Defects and Developmental Disabilities

National Center on Birth Defects and Developmental Disabilities

Mission: To promote the health of babies, children, and adults, and enhance the potential for full, productive living.

Goals: Prevent or reduce birth defects and developmental disabilities. Improve the health and development of all people with disabilities

or potentially disabling conditions, including blood disorders.

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The History of the National Center on Birth Defects and

Developmental Disabilities

The History of the National Center on Birth Defects and

Developmental Disabilities

Established in October 2000 by The Children’s Health Act of 2000 (Public Law 106-310)

National Center on Birth Defects and Developmental Disabilities created at CDC in April 2001

Reauthorized in December 2003 Jose Cordero, Director (2001-06) Edwin Trevathan, Director (2007- )

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NATIONAL CENTER ON BIRTH DEFECTS AND

DEVELOPMENTAL DISABILITIES

HEALTH COMMUNICATION

SCIENCE TEAM

POLICY, PLANNING AND EVALUATION

TEAM

SCIENCE AND PUBLIC HEALTH

TEAM

DIVISION OF HUMAN

DEVELOPMENT AND DISABILITY

U.S. Department of Health and Human Services


RESOURCE MANAGEMENT

OFFICE

DIVISION OF BIRTH DEFECTS AND

DEVELOPMENTAL DISABILITIES

DIVISION OF BLOOD

DISORDERS

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Some Success StoriesSome Success Stories

26% Reduction in neural tube defects in U.S. - folic acid fortification –approx 1000 babies a year

143 Hemophilia Treatment centers - more people with hemophilia leading longer, healthier lives

Expansion of early hearing detection programs to 46 states and territories

Documented effectiveness of health promotion programs for persons with disabilities

State centers expanded to study autism surveillance and research causes/risk factors

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NTD Prevalence changes in the Americas before and after folic acid fortification

NTD Prevalence changes in the Americas before and after folic acid fortification

Rate per 10,000 live births

10.6

15.8

9.7

17.0

7.6 8.66.3

10.1

0

5

10

15

20

USA Canada Costa Rica Chile

Before fortificationAfter fortification

NTD rate

per 10,000

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Current NCBDDD PrioritiesCurrent NCBDDD Priorities

Birth Defects and

Autism/Developmental Disabilities

Research

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ArizonaFloridaIllinois New Jersey

New YorkOhio Puerto RicoVermont

2003-2008

CDC Funding for Birth Defects Activities

CDC Funding for Birth Defects Activities

Centers for Birth Defects Research & Prevention

Arkansas North CarolinaCalifornia IowaCDC/Georgia TexasMassachusetts UtahNew York

ColoradoMichiganMinnesota New Hampshire

Oklahoma Rhode Island Virginia

2005-2010

State Monitoring

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Current ADDM Sites

Goals-

•Accurate and comparable population-based estimates of the prevalence of ASD in selected regions of U.S.

•Describe the characteristics of children with ASD

•Examine trends in prevalence

•To improve the consistency of identification of people with ASDs

ASD Prevalence-

•Prevalence estimates for 2000 and 2002 surveillance years were 6.6 and 6.7 per 1,000 children with an ASD.

•CDC is working to develop additional prevalence estimates for 2004 and 2006.

The Autism and Developmental Disabilities Monitoring (ADDM) Network

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Centers for Autism and Developmental Disabilities Research and Epidemiology

Colorado Department of Public Health and Environment

Kaiser Permanente Division of Research

Johns Hopkins University

University of North Carolina at Chapel Hill

University of Pennsylvania

CDC-Georgia CADDRE

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Longitudinal Data on Disabilities

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State Implementation Projects for Preventing Secondary Conditions and Promoting the Health of

People with Disabilities

State Implementation Projects for Preventing Secondary Conditions and Promoting the Health of

People with Disabilities

New York

Massachusetts

Delaware

Michigan

Illinois

Virginia

North Carolina

South Carolina

Florida

California

Oregon

Montana

North Dakota

Kansas

Iowa

Arkansas

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Racial and Ethnic Disparities among

People with Birth Defects, Disabilities and

Blood Disorders

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Year of birth

Fortification Pre-fortification

Impact of Fortification: 26% Reduction of Neural Tube Defects (Spina Bifida and Anencephaly)

Pre

vale

nce

(p

er 1

0,00

0)

0

2

4

6

8

10

12

1995 1996 1997 1998 1999 2000 2001 2002 2003

HispanicWhite

Black

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Addressing Deep Vein Thrombosis

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Risk Factors for Venous Thromboembolism (VTE)Venous Thromboembolism (VTE)Risk Factors for Venous Thromboembolism (VTE)Venous Thromboembolism (VTE)Aging

Chronic Illness Pregnancy

GeneticsMotor Disability

Hospitalization

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An Important Partnership—AUCDAn Important Partnership—AUCD

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• Raise awareness of developmental milestones and early warning signs of developmental delay.

• Increase knowledge about the benefits of early action and early intervention.

• Increase parent-provider dialogue on the topic of developmental milestones and disorders.

• Increase early action for developmental disorders

Learn the Signs. Act Early. Campaign

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Partnering for the future: NCBDDD and AUCD

Partnering for the future: NCBDDD and AUCD

Mechanism—Cooperative Agreement:

1. Research Topics of Interest (RTOIs)

2. Fellowships

3. TA to Disability & Health network

4. Input to Healthy People 2020

5. Other ideas?

Mechanism—Conference Funds

Partial support for conferences

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Documents

Public Health Response to Disability in America