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 DDIV. Aging with DD – Key IssuesV. 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 DDCANADA, 2001

Population Canada

Population aged 15+ with DD

120,140

15-64 109,060

15-24 26,010

25-44 38,280

45-64 44,770

65 and over 11,080

65-74 4,010

75+ 7,070Source: Statistics Canada (2002). A Profile of Disability in Canada, 2001.

YearLife

Expectancy at Birth (years)

M F

1921 58.8 60.6

1931 60.0 62.1

1941 63.0 66.3

1951 66.4 70.9

1961 68.4 74.3

1971 69.4 76.5

1981 71.9 79.1

1991 74.6 81.0

1996 75.7 81.4

2001 77.1 82.2Source: Statistics Canada (2003)

LIFE EXPECTANCY

Life expectancy at birth for children with Down syndrome:

Year LE (Years)1929 9 1947 12-151961 ~181990s >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 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)

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 IssuesSocial 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. 2008

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