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
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Background
Prevalence
Health disparities and DD
Aging with DD – Key Issues
Current Gaps in Knowledge
COA Funded Research Project
DEFINITION
Developmental Disabilities (DDs) are a diverse
group of conditions that are:
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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:
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Language
Mobility
Learning
Self-help
Independent living
DEVELOPMENTL DISABILITES
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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
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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
Population
Population aged 15+ with
DD
15-64
Canada
120,140
109,060
15-24
26,010
25-44
38,280
45-64
44,770
65 and over
11,080
65-74
4,010
75+
7,070
Source: Statistics Canada (2002). A Profile of Disability in Canada, 2001.
Year
Life Expectancy at
Birth (years)
M
F
1921
1931
58.8
60.0
60.6
62.1
1941
1951
1961
1971
63.0
66.4
68.4
69.4
66.3
70.9
74.3
76.5
1981
1991
1996
71.9
74.6
75.7
79.1
81.0
81.4
2001
77.1
82.2
Source: Statistics Canada (2003)
LIFE EXPECTANCY
Life expectancy at birth for children with Down
syndrome:
Year
1929
1947
1961
1990s
LE (Years)
9
12-15
~18
>50
(Source: Haveman, 2004)
GROWING POPULATION
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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
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An area of growing concern
Focus of research in some of the
developed countries (e.g., Australia, Finland,
U.S., England)
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Very limited research in Canada
HEALTH DISPARITIES AND DD
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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?
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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
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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 communitybased 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
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Older Canadians with DD:
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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
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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
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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
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Age
Sex
Place of residence
Living arrangements
Socio-economic Characteristics
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Highest Level of Education
Personal Income level
Household Income Level
Main Sources of Income
Health-related Characteristics
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Overall Health Status
Level of Functioning
Smoking Behaviour
Drinking behaviour
Social Participation
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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
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Frequency of contacts with a physician
Frequency of contacts with a
psychologist, social work or counselor
Health Care and Social Support Needs
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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)
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Age
Sex
Paid or unpaid work
Relationship
TIMELINE
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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
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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
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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
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Centre On Aging
University of Manitoba
Eric Langlet & Susan Stobert
Statistics Canada
THANK YOU
St. Amant
Community Residential Program
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Continuum of services provided to
over 150 children and adults across
Manitoba (ages 5-75)
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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!
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Jurisdictional issues
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Access to Clinical/Medical Supports
Training/Caregiver Competency
Generic Services vs. Special Needs
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Home Care
Rehabilitation Services (Stroke)
PCH admissions
Palliative supports