National Center on Birth Defects and Developmental Disabilities (NCBDDD)

1. Disability Inclusion:Reducing Health Disparities for People with Disabilities by Including Them in Chronic Disease and Health Promotion Programs National Association of Chronic Disease Directors WebinarAugust 25, 2011Vincent A. Campbell, PhD National Center on Birth Defects and Developmental Disabilities (NCBDDD) National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention and should not be construed to represent any agency determination or policy.

2. Disability and Health Program Mission To promote the health, quality of life, and full social participation of people with disabilities through application of a public health approach To raise the awareness of the prevention needs of people with disabilities to decrease additional decrements in health – through inclusion in mainstream public health programs and, if necessary in disability-specific programs

3. Disability – What Are We Talking About? • “Umbrella term for impairments, activity limitations and participation restrictions. It denotes the negative aspect of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors” – WHO, 2001, p. 213 • Limitations in vision, hearing, mobility, cognition, communication, behavioral/social/affective functioning. World Health Organization. (2001). International classification of functioning, disability and health (ICF). Geneva, Switzerland: Author.

4. Public Health Burden of Disability in the US • Approximately 54 million people with disabilities (2005), Survey of Income and Program Participation 1 • Approximately $400 billion in Disability-Associated Health Expenditures 2 – 2006 expenditures for states ranged from $598 million (WY) to $40.1 billion (NY) • AHRQ reports indicate 43% of 2003 Medicaid spending was associated with disabilities 3 ; that people with disabilities incur substantial costs associated with multiple chronic conditions 3 1 Brault M. Americans With Disabilities: 2005, Current Population Reports, P70-117, U.S. Census Bureau, Washington, DC. 2006. Retrieved 8/16/11 from http://www.census.gov/prod/2008pubs/p70-117.pdf. 2 Anderson WL, Armour BS, Finkelstein EA, Wiener JM. Estimates of state-level health-care expenditures associated with disability. Public Health Rep, 2010 Jan-Feb; 125(1): 44–51. 3 Stanton MW, Rutherford MK. The high concentration of U.S. health care expenditures. Rockville (MD): Agency for Healthcare Research and Quality; 2005. Research in Action Issue 19. AHRQ Pub. No. 06-0060. Retrieved 8/16/11 from http://www.ahrq.gov/research/ria19/expendria.pdf

5. Public Health Approach Surveillance Epidemiologic Research Implemen- tation Establishing Priorities Intervention Research Translation Evaluation

6. Public Health Approach Surveillance Epidemiologic Research Implemen- tation Establishing Priorities Intervention Research Translation Evaluation

7. Surveillance

8. Disparity in Self-reported Health Status between People with and without Disability Source: BRFSS, 2009; Adults, age 18 and older, age-adjusted, - All States, District of Columbia, Guam, Puerto Rico & US Virgin Islands

9. Health Risks for People with Disabilities • Underlying health conditions • Secondary conditions • Attitudes and assumptions of society and health care providers • Inadequate health care coverage • Disproportionate experience of social determinants of POOR health (e.g., low employment, low rates of HS graduation) • Inaccessible health care Many of the data sources used in public health are not available for this population and subpopulations

10. Evolution of Conceptualization of Disability in Public Health • Disability traditionally viewed as a terminal health outcome - to be approached as from a primary prevention perspective • Disability as a dimension of health disparity – health conditions, behaviors, health care service utilization varies by disability status • Disability as a health determinant

11. Black & Breiding (2008) included two disability variables from the BRFSS in their analysis of intimate partner violence • Current activity limitations • Use of disability equipment Both variables significantly associated with lifetime experience of intimate partner violence for both men and women.

12. Health Behaviors/Risks

13. Disparity in BMI Status between People with and without Disabilities Source: BRFSS, 2009; Adults, age 18 and older, age-adjusted, - All States, District of Columbia, Guam, Puerto Rico & US Virgin Islands

14. Disparity in Tobacco Use and Physical Activity between People with and without Disabilities Source: BRFSS, 2009; Adults, age 18 and older, age-adjusted, - All States, District of Columbia, Guam, Puerto Rico & US Virgin Islands

15. Preventive Services

16. Cancer Screenings 1 – 2010 2 - 2009

17. Health Care Characteristics

18. Disparity in Access to a Personal MD and Health Care Coverage between People with and without Disability Source: BRFSS, 2009; Adults, age 18 and older, age-adjusted, - All States, District of Columbia, Guam, Puerto Rico & US Virgin Islands

19. QuickStats: Delayed or Forgone Health Care Due to Cost*, Adults 18--64 Years,† by Disability§ and Health Insurance Coverage Status¶ --- National Health Interview Survey, US, 2009 60.8% 24.5% of adults 18-64 years, reported difficulty in basic actions 30.7% 15.5% 5.8%

20. Disability and Health Data System (Almost Showtime - You Will Be Notified)

21. Disability Surveillance Using the BRFSS • Priority for analyzing and reporting comparative status of people with and without disability at the State level • The objective is to stratify all variables in the annual and rotating core BRFSS by disability status • Two questions are used to operationalize disability status: • Are you limited in any way in any activities because of physical, mental, or emotional problems? • Do you now have any health problem that requires you to use special equipment, such as a cane, a wheelchair, a special bed, or a special telephone?

22. Disability and Health Data System

23. Prevalence of Selected Chronic Conditions by Psychological Distress Source: BRFSS, 2007, 33 States, DC, PR

24. Issues Affecting Inclusion of Disability at CDC

25. Issues Affecting Public Health Efforts and Disability - Limitations • Administrative Issues – there is rarely a disability program in Departments of Public Health • Data Issues: • No National Vital Statistics System data – no information on leading causes of death by functional disability status • Limited administrative data (e.g., hospital discharge data, data from National Ambulatory Medical Care Survey, etc.) by functional disability status • Accessibility Issues and Interventions: • Health communications rarely provided in universally accessible or alternate formats • Recommended interventions may not be accessible

26. Tom Frieden’s PH Pyramid Disability and Health Interventions Frieden T. (2010. A Framework for Public Health Action: The Health Impact Pyramid Am J Pub Hlth,. 100(4):590-595.

27. Issues Affecting Public Health Efforts and Disability – Legislative & Policy Resources • Legislation • Section 508 of the Rehabilitation Act of 1973, as amended (29 U.S.C. § 794 (d)) • Americans with Disabilities Act • Americans with Disabilities Amendments Act of 2008 • Patient Protection and Affordable Care Act • Policy • HP2010/2020 • IOM reports (1991, 1997, 2007 ) • Surgeon General’s 2005 Call to Action

28. Summary of Provisions in ACA and Disability • Establishes people with disability as a population experiencing health disparities • Directs disability data to be collected, analyzed and reported to detect and monitor health disparities • Directs disability data to be collected in clinical and public health programs • Directs disability data to be collected to assess the accessibility of health care facilities and equipment • Directs data to be collected regarding training of health care providers in awareness of disability and care of people with disabilities

29. Affordable Care Act – Key Provisions for Public Health and Data Collection • Within 2 years of passage, data to be collected and reported for “applicants, recipients, or participants” on five demographic variables (to the extent practicable): • Race • Ethnicity • Sex • Primary language • Disability status • The purpose is to “detect and monitor trends in health disparities”

30. 2009 American Community Survey Disability Questions •  Is this person deaf or does he/she have serious difficulty hearing? (all ages) •  Is this person blind or does he/she have serious difficulty seeing even when wearing glasses? (all ages) •  Because of a physical, mental, or emotional condition, does this person have serious difficulty concentrating, remembering, or making decisions? (age >= 5 years) •  Does this person have serious difficulty walking or climbing stairs? (age >= 5 years) •  Does this person have difficulty dressing or bathing? (age >= 5 years) • Because of a physical, mental, or emotional condition, does this person have difficulty doing errands alone such as visiting a doctor’s office or shopping? (age >= 15 years)

31. CDC Disability and Health Working Group • Established in May, 2010 as a result of recommendations of Institute of Medicine (2007) The Future of Disability in America and at the request of the Disability and Rehabilitation Research Coalition • Located jointly in CDC Office of the Director and National Center on Birth Defects and Developmental Disabilities

32. Goals • Ensure that people with disabilities are included in relevant CDC surveillance programs; • Implement policies that include people with disabilities in CDC funded public health programs; • Develop and promote policies that increase the accessibility of primary, specialty and preventive services for people with disabilities; • Improve accessibility of PH communications; • Inform, educate, and empower US public health workforce about the health issues of people with disabilities; • Increase collaboration with external organizations regarding disabilities and health issues; • Improve the science related to disability and public health.

33. Project with National Network of Public Health Institute of CA • Review recommended interventions in the Community Guide to Preventive Services to assess which are appropriate for people with disabilities and which would require adaptation • Process • Literature review • Expert Interviews (disability and USPSTF members/ex-members • Focus groups with people with disabilities • Summary meeting in late winter 2012.

34. Improving Health of People with Disabilities – What Would Help? • Compliance with and enforcement of laws relating to accessibility and reasonable accommodations • Accessible health communications (e.g., alternative formats) particularly for people with vision, hearing or cognitive limitations • Outreach to people with disabilities • Inclusion of people with disabilities on health promotion advisory boards, focus groups, clinical trials • Routine consideration of people with disabilities as part of the public

35. Resources CDC Disability and Health Branch - http://www.cdc.gov/ncbddd/disabilityandhealth/index.html Governors’ Offices on Disability AAHD - http://www.aahd.us/page.php AUCD - http://www.aucd.org/directory/directory.cfm?program=UCEDD DD Planning Councils – (National Assn of Councils on DD) - http://www.nacdd.org/site/home.aspx HHS Office on Disability - http://www.hhs.gov/od/topics/community/communityintegration.html Regional Disability and Business Technical Assistance Centers - http://www.adata.org/Static/Home.aspx

36. Summary and Conclusions • People with disabilities continue to experience decrements in health after the onset of disability • People with disabilities are at increased risk for chronic disease, risky health behaviors that can further decrease their health and quality of life • Disability is associated with large health care costs • Many of the adverse effects of disability can be mitigated

37. Vcampbell@cdc.gov 404-498-3012 National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) National Center on Birth Defects and Developmental Disabilities (NCBDDD)