Aging With A Developmental Disability

1. Aging With A Developmental Disability Shahin Shooshtari, PhD Assistant Professor Departments of Family Social Sciences & Community Health Sciences University of Manitoba Researcher, St Amant Research Centre

2. OUTLINE • Background • Prevalence • Health disparities and DD • Aging with DD – Key Issues • Current Gaps in Knowledge • COA Funded Research Project

3. DEFINITION Developmental Disabilities (DDs) are a diverse group of conditions that are: • due to mental and/or physical impairments; • begin anytime during development up to age 22; • usually last throughout a person’s lifetime. (US Department of Health and Human Development, 2008)

4. DEFINITION People with DD have problems with major life activities such as: • Language • Mobility • Learning • Self-help • Independent living

5. DEVELOPMENTL DISABILITES • Life-long conditions • Direct and indirect impacts on all aspects of individuals’ lives. • Those affected will need lifelong family and organizational support for health, education and social services, such as housing, recreation, and transportation.

6. TYPES • Genetic syndromes (e.g., down syndrome, Fragile X syndrome, and Prader-Willi syndrome) • Problems with the central nervous system (e.g., cerebral palsy) • Milder developmental disabilities

7. PREVAELNCE • In 2001, WHO estimated that 3% of the world population has some form of developmental disability. • There are variations in the prevalence due to: (1) true difference in prevalence (2) differences in definition of DD (3) differences in case-finding techniques (Schrojenstein Lantman-de Valk et al. 1997)

8. POPULATION with DDCANADA, 2001 Source: Statistics Canada (2002). A Profile of Disability in Canada, 2001.

9. Source:Statistics Canada (2003)

10. LIFE EXPECTANCY Life expectancy at birth for children with Downsyndrome: Year LE (Years) 1929 9 1947 12-15 1961 ~18 1990s >50 (Source: Haveman, 2004)

11. GROWING POPULATION • There were an estimated 526,000 individuals aged 60+ living with a developmental disability in the United States in 1998. This number is projected to double by 2030. • 479,000 adults with DD were living at home with parents who were aged 60 or older. (Heller and Factor, 1998)

12. AGING with DD • An area of growing concern • Focus of research in some of the developed countries (e.g., Australia, Finland, U.S., England) • Very limited research in Canada

13. HEALTH DISPARITIES AND DD • Physical health • Mental health • Social well-being

14. AGING with DD – Key Issues Physical Health • Earlier development of some of the chronic conditions or diseases (dementia, arthritis); • More severe degrees of sensory impairment; • More severe loss of flexibility in joint function • Lack of basic knowledge about healthy lifestyle behaviors; • Receive less preventive health measures (e.g., pap smears and mammograms)

15. AGING with DD – Key Issues Mental Health • 30-60% of older persons with moderate to severe DD have a mental disorder. • Challenge: differentiation between dementia, depression and behavioral conditions related to developmental disability. Why? • Seniors will DD will have difficulty in expressing their psychological problems. • Care providers’ lack of expertise

16. AGING with DD – Key Issues Social Well-being • De-institutionalization & community living Challenge: Aging parents/siblings providing care to an aging family member with DD. • Support services for caregivers • Caregivers’ access to information • Community participation & leisure opportunities • Good substitute decision maker • Abuse/Neglect

17. AGING with DD – Key Issues Living Arrangements • There is no data on living arrangements of Canadian seniors with DDs. • “Group Homes” are the most frequent type of residential services provided by the community-based agencies across Canada (Pedler et al., 2000).

18. Canada's Seniors At A Glance Canadian Council on Social Development for the Division of Aging and Seniors, Public Health Agency of Canada (2005)

19. Seniors in Canada: 2006 Report Card

20. Seniors on the Margins

21. CURRENT GAPS IN KNOWLEDGE • Older Canadians with DD: • Who they are • Where they live • The kind of supports and services they have access to • Unmet health care needs • Unmet needs for social support services (e.g., housing, recreation, social participation and transportation)

22. PROPOSED STUDY Aging with A DevelopmentalDisability Unmet Health Care and Social Services Needs Shahin Shooshtari, Ph.D.

23. STUDY OBJECTIVES 1) To create a demographic, socio-economic and health-related profile of older Canadian adults (45+) who live with a developmental disability (DD) in the community; 2) To enhance the current knowledge of their unmet health and social support services needs.

24. RESEARCH METHODS • Study Design: Analysis of cross-sectional data • Data Sources: 2001 and 2006 PALS adult surveys. • Target Population: Individuals aged 15+ living in private households and some non-institutional collective households, who answered “yes” to at least one of the two disability questions on 2001 or 2006 Census. • Study Samples: The study sample will be restricted to respondents who: (1) were at least 45 years old at the time of their survey interview, and (2) reported having a developmental disability.

25. STUDY MEASURES • Developmental disability “Has a doctor, psychologist or other health professional ever said that you (…) had a developmental disability or disorder? These include, for example, Down syndrome, autism, Asperger syndrome, mental impairment due to a lack of oxygen at birth, etc.”

26. Demographic Characteristics • Age • Sex • Place of residence • Living arrangements

27. Socio-economic Characteristics • Highest Level of Education • Personal Income level • Household Income Level • Main Sources of Income

28. Health-related Characteristics • Overall Health Status • Level of Functioning • Smoking Behaviour • Drinking behaviour

29. Social Participation • Frequency of participation in leisure and recreational activities within home • Frequency of social activities outside home • Barriers to doing more leisure activities

30. Health Care Utilization • Frequency of contacts with a physician • Frequency of contacts with a psychologist, social work or counselor

31. Health Care and Social Support Needs • Help with everyday activities • Unmet health or social needs • Type of unmet health care or social support needs • Reasons for not receiving the help, which was needed

32. Health Care and Social Support NeedsHelp with everyday activities Unmet health or social needs Type of unmet health care or social support needs Reasons for not receiving the help, which was needed Health Care and Social Support NeedsHelp with everyday activities Unmet health or social needs Type of unmet health care or social support needs Reasons for not receiving the help, which was needed Caregiver characteristic(2006 PALS) • Age • Sex • Paid or unpaid work • Relationship

33. TIMELINE • To start data extraction and preparation in July of 2008 • Data analysis to be completed by Dec. 2008 • Development of a CIHR Grant application for submission in March of 2009.

34. SIGNIFICANCE • Essential knowledge for those across different government departments — including health, family services and housing, as well as community-based agencies and voluntary sectors — involved in policy development, planning and provision of services to population of older adults with DD.

35. SIGNIFICANCE • Information on barriers to receiving the care and support which was needed, but not received, suggests great opportunities to intervene to enhance the quality of life of this population.

36. Centre On Aging University of Manitoba Eric Langlet & Susan Stobert Statistics Canada ACKNOWLEDGMENT

37. THANK YOU

38. Continuum of services provided to over 150 children and adults across Manitoba (ages 5-75) 24 hr. residential supports Foster and respite care Transitional supports Supported Independent Living One of over 100 service providers/agencies within Manitoba St. Amant Community Residential Program

39. Jurisdictional issues Access to Clinical/Medical Supports Training/Caregiver Competency Generic Services vs. Special Needs Home Care Rehabilitation Services (Stroke) PCH admissions Palliative supports Challenges for Service Provision – The Complex becomes Complicated!