The Surgeon General’s

Tomorrow is Here Today:The Interrelationship of Research, Education, Service and PolicyAUCD Annual MeetingNovember 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

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. 2007 AUCD Annual Conference

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

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

Call to Action Worksheet 2007 AUCD Annual Conference

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

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

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

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

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

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

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

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

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

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

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

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

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

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 makinghealth and wellness information accessible 2007 AUCD Annual Conference

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

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

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

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

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

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

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

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

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

Call to Action Worksheet 2007 AUCD Annual Conference

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

The Surgeon General’s