the surgeon general’s

Tomorrow is Here Today:The Interrelationship of Research, Education, Service and Policy

AUCD Annual MeetingNovember 12, 2007

The Surgeon General’s A Call to Action to Improve the Health and Wellness of Persons with DisabilitiesEileen Elias, M.Ed., Deputy Director US Department of Health and Human Services Office on Disability

Marisa Brown. MSN, RN, Project Director, DC Health Resources Partnership, Georgetown University Center for Child and Human Development, GU-UCEDD

U.S. Department of Health and Human ServicesThe Surgeon General’s Call To Action To Improve the Health and Wellness of Persons with DisabilitiesUS Department of Health and Human Services, office of the Surgeon General, 2005

Describes challenges to health and well-being faced by people with disabilities

These are public health issues Part of the President’s Healthier US

Initiative

2007 AUCD Annual Conference

With good health, persons with disabilities have the freedom to work, learn and engage actively in their families and their communities.


Call to Action Health care providers need to see

and treat the whole person Educators need to teach about

disability The public needs to see an

individual’s ability Communities must ensure accessible

health care and wellness services


Everyone has a role to play.

Health care and service support providers

Educational institutions Federal, state, local and tribal

governments Private sector Media People with disabilities and their families Community groups


Goal #

What will you do? How will this be done?

Who will do the work?

Call to Action Worksheet


Shift in Emphasis in Public Health

1900s• Disease prevention• Vaccinations• Improved nutrition and sanitation• New treatments to combat acute illnesses

2000• Chronic medical conditions• Causes of chronic illness


Improving mortality rates Down syndrome: average life span in 1929 was 9

years of age. Today, 50 and beyond (National Institute of Child Health and Human Development 2004).

Since 1983 the average life span of a person with Down syndrome ahs doubled (Yang et al 2002).

People with cystic fibrosis, current life span of 34 years, up from 18 years in 1985 (National Heart, Lung and Blood Institute 1995).

40-year old who survives the first year of an injury causing paraplegia can live to 70 years, 8 years less than someone without an injury (National Spinal Cord Injury Statistical Center 2001).


Challenges to Achieving Health and Wellness Insufficient knowledge and awareness Provider and community attitudes and

behaviors Inadequate access to information and

opportunities for health care and wellness promotion

Lack of innovative and creative approaches by service systems


Challenges when attempting to access health care Transportation problems

Inaccessibility of facilities or services

Lack of provider knowledge about disability

Untimely appointmentsAdapted from a qualitative survey conducted by the National Rehabilitation Hospital, Center for health and Disability Research


Consequences of delayed or denied access to care Physical

Psychological

Economical

Social

Independence issuesAdapted from a qualitative survey conducted by the National Rehabilitation Hospital, Center for health and Disability Research


Good health is necessary for persons with disabilities to secure the freedom to work, learn and engage in their families and communities. Goal 1: People nationwide understand that persons

with disabilities can lead long, healthy, productive lives.

Goal 2: Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity.

Goal 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles.

Goal 4: Accessible health care and support services promote independence for persons with disabilities.


Goal 1: People nationwide understand that persons with disabilities can lead long, healthy, productive lives.Challenges Misperceptions that disability = poor health Different uses of the term “disability”

confuses the public Poor public understanding results in needs

of persons with disabilities overlooked when community decisions about policy and services are made


Goal 1: People nationwide understand that persons with disabilities can lead long, healthy, productive lives.Strategies Promote the use of people first language Consider health literacy Improve content about disability in community

educational materials, schools, faith-based programs, and workplaces

Encourage entertainment industry to include realistic portrayals of disability

Encourage better coverage by print an electronic media

Include measures of disability in health surveys Encourage people with disabilities to serve in

community initiatives2007 AUCD Annual Conference

Goal 2: Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity.Challenges Insufficient education and training Services are insufficiently integrated to

meet the needs of the whole person Insufficient attention to the prevention of

secondary conditions, e.g. obesity, type II diabetes, depression and substance abuse


Goal 2: Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity.Strategies Health care providers must communicate

to people with dignity Educate health care providers about

state-of-the-art supports Clinical and health services research must

include people with disabilities across the life span


Goal 2: Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity.Strategies, continued Increase health care providers’ awareness of and

compliance with disability laws Disability-oriented curricula must include evidence-

based practices Develop and use medical equipment that allows

universal access to screening and diagnostic tests and treatments

Health care professionals’ curricula must include focus on wellness and prevention of secondary disability, including development of resources


Goal 2: Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity.Strategies, continued Education of health care practitioners must

include practical experiences Promote researcher experiences with

persons with disabilities Promote research to enhance the evidence

base for best practices Promote interdisciplinary collaboration and

use of networks in research Analyze the content and diffusion of

information about persons with disabilities.


Goal 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestylesChallenges Misperceptions about the positive role of

wellness promotion Policy and service emphasis placed on

acute illness and acute elements of disability rather than prevention and health maintenance


Goal 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestylesStrategies Conduct research to identify effective

health promotion programs Educate persons with disabilities and

their support network about state-of-the-art wellness and prevention activities

Consider health literacy when making health and wellness information accessible


Goal 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestylesStrategies, continued Provide increased health promotion and wellness

training opportunities for people with disabilities and members of their support network

Encourage health systems to use all assistive technology available in promoting health information, including access to people with limited English proficiency


Goal 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestylesStrategies, continued

Include people with disabilities in all stages of health care and wellness promotion communication research

Identify strategies for translating into practice evidence-based best practices for health promotion


Goal 4: Accessible health care and support services promote independence for persons with disabilitiesChallenges Persons with disabilities have difficulty:

Getting to health care providers Getting in and around the service setting Being able to benefit from equipment in the

service setting Communicating with providers about their

health needs and concerns


Goal 4: Accessible health care and support services promote independence for persons with disabilitiesChallenges, continued Insufficient numbers of health care

services programs have the tools, skills and capacities to meet the full range of health care and wellness needs of persons with disabilities


Goal 4: Accessible health care and support services promote independence for persons with disabilitiesStrategies Survey the full range of health needs and

how they are being met Advance accountability by all health

service delivery programs Bring inventors, clinicians and industry

together to enhance research and development of assistive technology


Goal 4: Accessible health care and support services promote independence for persons with disabilities

Strategies, continued Encourage research efforts that

collaborate and partner with integrated community-based provider networks to include people with disabilities

Continue to develop community-based, public-private partnerships to facilitate coordinated, integrated care of persons with disabilities.


Goal 4: Accessible health care and support services promote independence for persons with disabilitiesStrategies, continued Encourage the development of integrated,

multidisciplinary service teams to provide one-stop health care for persons with disabilities

Facilitate coordinated, integrated care for populations that have been traditionally underserved, including persons with disabilities who are racially, ethnically or linguistically diverse.


Goal 4: Accessible health care and support services promote independence for persons with disabilitiesStrategies, continued Promote and disseminate the adoption of

new treatments, models of care and adaptive or assistive technologies

Identify key elements of best practice and why they are successful

Identify and implement in community-based care evidence-based best practices in health service delivery for persons with disabilities


What will you do?

Person with a disability Family member Advocate University educator Researcher Health professional Community leader Media and public relations Policy makers and administrators The public


Goal #

What will you do? How will this be done?

Who will do the work?

Call to Action Worksheet


Contact

Eileen Elias, M.Ed., Deputy Director US Department of Health and Human Services Office on Disability 200 Independence Ave., SW, Room 637 D

Washington, DC 20201 Phone: 202-205-1104 Fax: 202-260-3053 www.hhs.gov/od

http://www.hhs.gov/od

the surgeon general’s

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