Disability: Inclusion in public health definitions of disparity Elena Marie Andresen, Ph.D.

1. University Center for Excellence on Developmental Disabilities Oregon State University April 5th, 2013 Disability: Inclusion in public health definitions of disparity Elena Marie Andresen, Ph.D. Chief, Disability & Health Research Group Institute on Development & Disability www.ohsuidd.org Director, Oregon Office on Disability & Health www.oodh.org Professor, Department of Public Health & Preventive Medicine email: andresee@ohsu.edu Office phone: 503-494-2275

2. Today’s Goals & Learning Objectives • Learning objectives • Describe why disability has entered into the thinking of pubic health research & practice • Identify the history & context of public health planning & core functions for disability • Become familiar with disability surveillance used to provide the core public health function of assessment • Describe health & social determinants disparities between people with disabilities (PWD) & others • Apply social & environmental concepts to disability • At the end of my formal presentation, I ask you to use your cell phone to provide evaluation feedback while we do Q&A

3. A quick “starter” video on inclusion insocial roles I use this video, among others, to introduce public health graduate students to disability. Public health professionals often do not think as comprehensively about participation and environment as do those of us in disability. Disability discrimination job interview (1 minute). A young woman with Down’s Syndrome is interviewed. http://videos.disabled-world.com/video/11/disability-discrimination-job-interview

4. Why Disability in Public Health? • Institute of Medicine (2007) US report • Disability is a common experience • 40-50 million Americans or “1 in 20” • Aging & other factors (e.g. obesity epidemic) can contribute to future increases • Social & health programs are insufficient to support persons with disability (PWD) • We have “better” models to understand & plan for PWD (the WHO’s social/ environmental model) • Public Health planning (Healthy People) now includes disability

5. Why Disability? There are substantial disparities in health, healthcare access, environment, & social participation of people with disabilities We will see data on a few of these

6. Body function & structure Activities Participation Intrinsic Personal Factors, e.g., age, gender, race/ethnicity Environmental factors e.g., built environment, policies, social e.g. caregivers The WHO ICF Model of Disability (to contrast with the public health model) Health Condition (ICD) Contextual factors

7. Social-Ecological Model of Public Health Reproduced from 2020 Secretary’s Advisory Committee on National Health Promotion & Disease Prevention Objectives. Phase I; 2008 http://healthypeople.gov/hp2020/advisory/PhaseI/PhaseI.pdf

8. Disability Concepts for the Model of Public Health • Life course • Life long disability • Age (or other) transition into & out of disability • Environment • Built, social, policy, think ADA on steroids! • Community • Where we live • disability culture • Individual • Impairment & other intrinsic & acquired experiences e.g., education • Policy & programs • Centers for Independent Living • UCEDDs

9. U.S. “Healthy People” Process • Each decade: national plan & goals • Input from scientists, but the leadership & decisions are with US agencies (US Public Health Service) • Strong input from US Preventive Task Force • Currently (HP 2020) • Disability had its own focus first in HP 2010 • The HP initiative sets goals for the nation’s health & to track progress (www.healthypeople.gov)

10. Healthy People 2020 • 42 Topic Areas & over 1000 Objectives Some are “developmental” objectives because they don’t meet full inclusion criteria, e.g. no ongoing assessment data source • Goals are considered for inclusion if they meet specific criterion, & especially important is that there be at least two data collections during the decade (for evaluation).

11. HP 2020 Topic Area Disability & Health 20 objectives. Examples are… • Systems & Policies • DH–1 Identification of “people with disabilities” in data systems • DH–2 Surveillance & health promotion programs • Barriers to Health Care • DH–4 Barriers to primary care • Environment • DH–8 Barriers to health & wellness programs • DH–11 Visitable features

12. Environment Example: Visitability • DH-11: (Developmental) Increase the % of newly constructed & retrofitted U.S. homes & residential buildings that have visitable features. • Recall, full HP objectives need at ≥2 data collection points during the decade. There are no national surveillance data for visitability. • In Florida we collected telephone survey data

13. Visitability: From a movement begun by Eleanor Smith in the 1980’s • The ability for all individuals, regardless of physical ability, to visit other peoples’ homes www.visitability.org • Key features • At least one entrance without a step & with a firm, level path to that entrance • Doorways wide enough to accommodate a wheelchair (≥32 inches) • At least a half bathroom on the main floor of the house

14. Florida Survey 2010: Respondents Reporting Visitable Features in their Homes (n=750)

15. Other Results • 47% reported there were sidewalks on one or both sides of their street • Policy implications: 72% supported building new homes to be visitable • 73% would be willing to pay an extra $100 • 24% willing to pay $1,000 or more

16. Public Health Core Functions Applied to ALL public health agencies, levels, systems • Assessment • Policy development • Assurance

17. Assessment Policy Development Assurance Disability surveillance & disparities, outcomes, etc. State laws: education changes for kids with Developmental Disability? Free universal screening for hearing in kids? Disability in the Core Functions primary epidemiology function

18. Disability & Public Health Surveillance & Statistics Based on Healthy People 2010CHAPTER 6 * “Disability is a demographic descriptor rather than a health outcome. As a descriptor, disability should be used to monitor disparities in health outcomes & social participation.” I.e., disability  health *Vision for the Decade Symposium.Atlanta, Dec 4-5, 2000

19. A few examples of disability epidemiology & public health activities

21. Oregon Disability Prevalence BRFSS 2011 (18+)

22. Disparity example: Food insecurity & disability among US households

23. An example of ongoing surveillance for “birth defects”

24. Folic Acid: Prevention Program • Centers for Disease Control & Prevention (CDC) took the lead… • Research showed that folic acid can prevent spina bifida & anencephaly • Worked for fortification of “enriched” grain products via FDA

25. Prevalence of spina bifida & anencephaly Pre-fortification Optional fort. Mandatory fortification 1995 1996 1997 1999 2000 1998 2001 Year & quarter of birth

26. Folic Acid: Prevention Program • However, • Fortification alone is not sufficient: pre-pregnancy supplements are needed • Now educational campaigns encourage multi-vitamin use among women of child bearing age

27. U.S. Disability prevalence (%) & the need for assistance, by age, 2005 Source: U.S. Census Bureau, Survey of Income & Program Participation, June–Sept 2005. Data taken from: Brault, M. W. (2008). Does not include children under 5.

28. Public Health Response: A focus on the public health of caregiving, spearheaded by the CDC (NCBDDD) scientists John Crews & Ronda Talley See: Talley & Crews, AJPH 2007. Example report: DeFries et al., Prev Chronic Dis 2009.

29. Policy? • 10-question caregiving module on developed for the Behavioral Risk Factor Surveillance System (data driven public health) • Questions asked across the age span • Mrs. Rosalynn Carter (former First Lady). • Her social & policy interests include programs to train & support family caregivers • She was the family caregiver for parents & is a strong, respected voice in the USA • Her Institute's recent (fall 2010) 12-point plan includes recommendations on • Research & development, system design • Public & tax policy

30. Data for recommendations: In part from 2009 BRFSS. State caregiving range; 15% to 35%

31. BRFSS Caregiver Module 2005 - 2012 State conducted module once (24, including District of Columbia) State conducted module twice (2) No Activity Note: The core questionnaire included caregiver questions in 2000 & 2009. Updated February 17, 2011

32. The Centers for Disease Control & Prevention (CDC) Spotlight on Disability & Public Health With thanks to Don Lollar, formerly with the CDC

34. Example Program Early Hearing Detection & Intervention Program (EHDI) Before Universal Newborn Hearing Screening, average age identified--2 ½ & 3 years old. 1. Screening all babies for hearing loss before one month of age: preferably before hospital discharge 2. Conducting diagnostic audiologicevaluations before three months of age for all infants who do not pass the hearing screening 3. Enrolling infants & children with identified hearing loss in appropriate intervention services before six months of age.

35. >90% 75-89% 60-74% 40-59% 25-39% 10-24% 5-9% < 5% Percentage of Babies Screened 1993

36. >90% 75-89% 60-74% 40-59% 25-39% 10-24% 5-9% < 5% NCHAM survey, 2001 Percentage of Babies Screened 2001

37. Issues & conflicts in research for public Health & disability

38. Conflict No. 1:“Prevention” “Eugenics: you want to prevent (me)” • prevent individuals with disability? No. • prevent disability? In terms of- • lowering incidence & severity, yes. • the outcome of impairment, yes. • Prevent adverse outcomes of impairments (secondary conditions)? Yes.

39. Conflict No. 1:“Prevention” “Eugenics: you want to prevent (me)” The extreme example is the NY Times story of Harriet McBride Johnson & her objection to & visit with Peter Singer (Professor, Princeton), who advocates the potential for euthanasing babies whose lives he deems to be cognitively impaired enough to not be “persons.”

40. Feb 16th, 2003

41. Conflict No. 2: Methods • Epidemiology is quantitative; the experience of disability is hard to capture & numbers (sometimes are) dismissed in the disability community • Solutions include combining methods (staged qualitative research) & explicit involvement of PWD(“nothing about us without us”)

42. Conflict No. 3: Participation of PWD • Participatory Action Research is expected in disability research: traditional epidemiologists expect distance between scientist & subjects • Solution: The current public health model (IOM 2003) supports “community participatory research” • Solution: A current medical model is “patient-centered outcomes research”

43. Q&A and images of participation (see website http://fodh.phhp.ufl.edu/training-resources/inclusive-image-library-photo-release/) Courtesy: Full Radius Dance & FODH Courtesy: NCPAD & FODH

44. Other Resources • CDC Disability & Health web site. http://www.cdc.gov/ncbddd/disabilityandhealth/index.html • OHSU Institute on Development & Disability. www.ohsuidd.org • Oregon Office on Disability & Health. www.oodh.org • My favorite disability video: Pepsi, 2008 Super Bowl portrays men who are deaf looking for “Bob’s House.” http://www.youtube.com/watch?v=ffrq6cUoE5A • Blog: Harriet McBryde Johnson http://julsland22.blogspot.com/2010/08/unspeakable-conversation-harriet.html • Institute of Medicine. The future of disability in America. Washington, D.C.: National Academies Press, 2007. • Global: • Disabled Persons International. http://v1.dpi.org/lang-en/index • Inclusion International. Inclusive communities = stronger communities. Global report on Article 19: The right to live & be included in the community. London: Inclusion International. http://www.inclusion-international.org/wp-content/uploads/Global-Report-Living-Colour-dr2-2.pdf • World Health Organization disability model http://www.who.int/classifications/icf/en/ • Textbooks: • Lollar D, Andresen EM (Eds). Public health perspectives on disability: epidemiology to ethics & beyond. New York: Springer, 2010. • Drum CE, Krahn GL, Bersani H (Eds). Disability & public health. Washington DC: APHA, 2009.