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

OUTLINE I. Background II. Prevalence III. Health disparities and DD IV. Aging with DD – Key Issues V. Current Gaps in Knowledge VI. COA Funded Research Project

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)

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

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.

TYPES 1.Genetic syndromes (e.g., down syndrome, Fragile X syndrome, and Prader-Willi syndrome) 2.Problems with the central nervous system (e.g., cerebral palsy) 3.Milder developmental disabilities

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)

POPULATION with DD CANADA, 2001 PopulationCanada Population aged 15+ with DD 120, , , , , and over11, , ,070 Source: Statistics Canada (2002). A Profile of Disability in Canada, 2001.

Year Life Expectancy at Birth (years) MF Source: Statistics Canada (2003)

LIFE EXPECTANCY Life expectancy at birth for children with Down syndrome: Year LE (Years) ~ s>50 ( Source: Haveman, 2004)

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

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

HEALTH DISPARITIES AND DD Physical health Mental health Social well-being

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)

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

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

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).

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

Seniors in Canada: 2006 Report Card

Seniors on the Margins

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)

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

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.

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.

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.”

Demographic Characteristics Age Sex Place of residence Living arrangements

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

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

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

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

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

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 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 Caregiver characteristic (2006 PALS) Age Sex Paid or unpaid work Relationship

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

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.

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.

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

THANK YOU

St. Amant Community Residential Program 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

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