1. Tomorrow is Here Today: The Interrelationship of Research, Education, Service and Policy AUCD Annual Meeting November 12, 2007
The Surgeon General’s
A Call to Action to Improve the Health and Wellness of Persons with Disabilities
Eileen 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

2. These are public health issues
U.S. Department of Health and Human Services The Surgeon General’s Call To Action To Improve the Health and Wellness of Persons with Disabilities US 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

3. With good health, persons with disabilities have the freedom to work, learn and engage actively in their families and their communities.
2007 AUCD Annual Conference

4. 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
2007 AUCD Annual Conference

5. 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
2007 AUCD Annual Conference

6. Goal # What will you do? How will this be done? Who will do the work?
Call to Action Worksheet
Goal #
What will you do?
How will this be done?
Who will do the work?
2007 AUCD Annual Conference

7. Shift in Emphasis in Public Health
2000
Chronic medical conditions
Causes of chronic illness
1900s
Disease prevention
Vaccinations
Improved nutrition and sanitation
New treatments to combat acute illnesses
2007 AUCD Annual Conference

8. 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).
2007 AUCD Annual Conference

9. 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
2007 AUCD Annual Conference

10. Challenges when attempting to access health care
Transportation problems
Inaccessibility of facilities or services
Lack of provider knowledge about disability
Untimely appointments
Adapted from a qualitative survey conducted by the National Rehabilitation Hospital, Center for health and Disability Research
2007 AUCD Annual Conference

11. Consequences of delayed or denied access to care
Physical
Psychological
Economical
Social
Independence issues
Adapted from a qualitative survey conducted by the National Rehabilitation Hospital, Center for health and Disability Research
2007 AUCD Annual Conference

12. 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.
2007 AUCD Annual Conference

13. 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
2007 AUCD Annual Conference

14. 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 initiatives
2007 AUCD Annual Conference

15. 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
2007 AUCD Annual Conference

16. 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
2007 AUCD Annual Conference

17. 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
2007 AUCD Annual Conference

18. 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.
2007 AUCD Annual Conference

19. Goal 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles
Challenges
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
2007 AUCD Annual Conference

20. Goal 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles
Strategies
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
2007 AUCD Annual Conference

21. Goal 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles
Strategies, 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
2007 AUCD Annual Conference

22. Goal 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles
Strategies, 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
2007 AUCD Annual Conference

23. Persons with disabilities have difficulty:
Goal 4: Accessible health care and support services promote independence for persons with disabilities
Challenges
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
2007 AUCD Annual Conference

24. Goal 4: Accessible health care and support services promote independence for persons with disabilities
Challenges, 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
2007 AUCD Annual Conference

25. Goal 4: Accessible health care and support services promote independence for persons with disabilities
Strategies
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
2007 AUCD Annual Conference

26. 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.
2007 AUCD Annual Conference

27. Goal 4: Accessible health care and support services promote independence for persons with disabilities
Strategies, 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.
2007 AUCD Annual Conference

28. Goal 4: Accessible health care and support services promote independence for persons with disabilities
Strategies, 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
2007 AUCD Annual Conference

29. 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
2007 AUCD Annual Conference

30. Goal # What will you do? How will this be done? Who will do the work?
Call to Action Worksheet
Goal #
What will you do?
How will this be done?
Who will do the work?
2007 AUCD Annual Conference

31. 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:
Fax: