Overview on Aging and Overview on Aging and Related Issues to Adults Related Issues to Adults

with Intellectual Disabilitieswith Intellectual Disabilities

Matthew P. Janicki, Ph.D.University of Illinois at Chicago, USA

mjanicki@uic.edu

Hong Kong Joint Council for People with Disabilities / Hong Kong Council of Social Service Hong Kong – June 29, 2009

Considerations• The demographics

– How will changes in the population affect concerns for aging people?

• W.H.O. concerns of aging people with disabilities– What are the key concerns and issues?

• Partnerships, planning, improving quality of life– How do we address these challenges?

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The demographicsHow will changes in the population affect people who are aging and who have a disability?

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Worldwide Aging

Persons Age 60 +• In 1950 - 200 mil. • In 1975 - 350 mil. • In 2000 - 590 mil. • In 2050 - 1,000 mil.• In 50 years, older

people will be 13.7% of the world’s population

Why Changes?

• Decrease in perinatal and infant mortality

• Decline in birth rates• Improvement in

nutrition• Better basic health

care• Control of infectious

diseases

Percent of national population age 65 and older

Hong Kong - Population: 2000 – 7.1m Population: 2020 – 8.7m Population >65 – 12%

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Proportion of older populationof adults w/intellectual disabilities

• Currently about 75% of all older adults with intellectual disabilities are in the 40-to-60 age group

• Expectations are that the 60+ age group will increase threefold over the next 20 years

40-59

60+

Age

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What is contributing to longevity?

• Available and effective health care (medical training in disabilities, better nutrition, disease prevention)

• Research about growing older (richer medical and social science literature enabling better services)

• Cohort differences (40-year-olds born in the 1960s – different life experiences)

• Public policy attention (governmental financing of services, laws, regulations)

• Education (academic interest in gerontology and greater awareness among administrators, educators, and professionals)

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Demographers and researchers tell us

• The older population will increase dramatically in the next 10-20 years

• Current and future older adults will be healthier and better educated than previous generations

• There is a low expectation that families will be able to absorb all the older persons who will need care at home

• Although older adults will be healthier, those adults with disabilities will still need health and social services

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W.H.O. concerns of aging people with disabilitiesWhat are the key concerns and issues?

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Wellness & social capacities

independency dependency

Encourage continuedindependency

Forced dependencyOlder age

Beginning impact of effects of interaction

of lifelong disability and aging

Continued good health and function

Early disease or dysfunction

Delayed

emergence of

disease or

dysfunction

interdependency

Contingencies staffing supports living setting barrier removal

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Ageing and Ageing and Intellectual Intellectual Disabilities – Disabilities – Improving Longevity Improving Longevity and Promoting and Promoting Healthy AgeingHealthy AgeingJournal of Applied Research in Intellectual Disabilities (JARID), 2001, Vol. 14(3), 171-275

Healthy Ageing – Adults Healthy Ageing – Adults with Intellectual Disabilitieswith Intellectual Disabilities

Ageing & Intellectual Disability – Improving Longevity and Promoting Healthy Ageing – Summative report (WHO, 2000)

The WHO The WHO RReportseports

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Physical health concerns

• Alzheimer’s disease and related dementias

• Physical deconditioning and loss of stamina

• Obesity-related diseases

• Sensory impairments• Poly-pharmacy and

adverse medication reactions

• Mobility impediments

• Tobacco or second-hand smoke

• Exposure to toxicity in work place

• Contagious diseases• Abuse and violence• Poor nutrition (lack of

availability or by choice)

• Non-medical drug use• Passive lifestyle

[Source: Prasher, V., & Janicki, M.P. (2002). Physical health and adults withintellectual disabilities. Oxford: Blackwell Science]

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Mental health concerns• Misunderstanding of

differences between mental illness and intellectual/ cognitive disability

• Biological vs. social factors causing mental illnesses or psychiatric conditions

• Psychiatric diagnostic inadequacies

• Bias toward institutionalization – or the lack of adequate community supports

• Life-course stressors

• Loss of family or friends (reactive depression)

• Medical condition affecting mental health

• Psychiatric condition affecting physical health

• Social unrest – life disruption - violence

• Not understanding age-related changes

• Discordance over older age role expectations

[Source: Davidson, P.W., Prasher, V., & Janicki, M.P. (2003). Mental health, intellectual disabilities, and the aging process. Oxford: Blackwell Science]

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Health concerns of womenwith disabilities

• Discrimination against women with disabilities – denial of services & devalued status

• Abuse and neglect• Variability of health care• Lack of screening for age-associated

conditions due to disability• Inadequate research & education

[Source: Walsh, P.N., & Heller, T. (2002). Health of women with intellectual disabilities. Oxford: Blackwell Science]

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WHO – ‘Promoting Healthy Aging’ >> the Barriers <<

Barriers to ‘Longevity’• Disease/malnutrition/poverty in

childhood• Lack of (or deficient) health

services• Poor population health status• Poor nutrition and hygiene• Lack of employment or activities• Unavailable rehabilitation

supports• Inadequate housing

Impediments to ‘healthy aging’• Myths and stigma associated with

disability• Poor general or national health

status • Specialty health systems lacking

for persons with disabilities• Poorly organized state

mechanisms for supports to persons with disabilities

• Scant information or research

[Source: WHO. (2000). Ageing & Intellectual Disability – Improving Longevity and Promoting Healthy Ageing – Summative report.Geneva: World Health Organization]

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What lifelong factors help produce an healthier old age?

• Exercise and fitness• Nutrition and diet• Disease prevention• Social involvement • Early medical attention• Periodic screenings and immunizations

[Source: WHO. (2000). Ageing & Intellectual Disability – Improving Longevity and Promoting Healthy Ageing – Summative report. Geneva: World Health Organization]

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Childhood

Young adult

Middle age

Old age

Living with familyHelp for familiesSchoolingMedical careRecreation

Living with familyHelp for family carersVocational training and workHealth careCommunity skill development

School leaverPossible living on ownIndependent of family

Transitions and Life Focal Points for People with Intellectual Disabilities

Living on ownChanges in healthLifestyle changesFamily/carer aging

Living on own or with groupRetirementHealth careCommunity involvement

PensioningPhysical & mental declineLoss of carers

Transitions

Life focal points

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Partnerships, planning, and improvingquality of life. . .

How do we address these challenges?

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Social planningPlanning for aging

population• Identifying who are the older

adults and carers• Determining what they may need• Looking at demographic trends• Recognizing that needs are often

linked to age (younger-older vs. older-older)

• Thinking in terms of creative approaches to supports

• Involving the families in the planning

• Working with government for institution of universal models for helping families and people with disabilities

Factors affecting planning• Dynamics of population

demographics – how they change?• Economic security – extant

pensions and financial aid to people with disabilities?

• Presence or lack of “aging-friendly” communities & neighborhoods

• Public policy focus with increasing age – aging or disability?

• Governmental policies and commitment to solving long-term or future problems - what level and whether legislative or administrative?

Extracts from Hong Kong Rehabilitation Programme Plan

►GeneralTo conduct regular statistical surveys to update the data of different categories of persons with disabilities with a view to formulating appropriate rehabilitation policies and services.

►Day Care, Community Support and the Development of Self-helpOrganizationsTo continue to strengthen the day care and community support services provided to persons with disabilities living in the community with a view to improving the quality of life of persons with disabilities and their carers.

►Residential Care

To develop diversified residential services by continuing to provide subvented hostel service to those in need, assisting NGOs in developing self-financing hostels and regulating the service quality of private hostels.

►Prevention and IdentificationTo develop effective measures for disease prevention by carrying out extensive consultation with persons with disabilities, people with chronic illness and self-help organizations.

•

http://www.lwb.gov.hk/eng/advisory/rac/rpp_report.htm

Directions for Sustainable DevelopmentHong Kong Rehabilitation Programme Plan

2005-2007 Rehabilitation Programme Plan Review Working Group

8.3 “With an ageing population, the demand of persons with disabilities for residential services will increase progressively. Moreover, it is envisaged that drastic changes in social environment and increase in work pressure will also lead to a rise in the number of persons with psychiatric disabilities and their demand for residential services. In this connection, it is recommended to:

• formulate long-term plan for persons with disabilities in terms of residential services and develop in a continuous manner various kinds of residential services with different levels of support to meet the needs of persons with disabilities;

• continue to strive to help persons with disabilities to live in the community and to ensure that residential services and community support services complement each other and are developed in parallel…

9.3 …to help persons with disabilities integrate fully into the community [***] day care and community services can help persons with disabilities continue to live at home by developing their abilities to live independently and enhancing the caring capacity of their families, so as to improve the quality of their lives. These services have been playing a very important role in achieving this particular objective of the rehabilitation policy. Hence, it is recommended to:

• continue to develop the day care and community support services, with special efforts dedicated to enhancing people oriented service programs, support to carers, community mutual help networks and multi-disciplinary support, with a view to helping persons with disabilities integrate fully into the community; and

• promote tripartite collaboration among the Government, business sector and the community, and explore and utilize social resources for providing support and services to persons with disabilities in an innovative manner.

Academic institutions

NGOs/charitable organizations/Providers/Business community

National advocacy organizations/ parent associations

Government agencies/departments

Partnerships and collaborations

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Ensuring healthier and productive aging for people with disabilities

• Promote a better understanding of people with aging with a disability and their needs

• Work to make communities “disability friendly”• Assure that services and supports have

“quality” as a defining factor• Promote greater education of personnel• Involve people with disabilities in decision

making• Provide adequate financing for community

services and aid to families

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Societal end products…

• Promoting life-long health to produce healthy aging

• Providing health care and attending to disability related needs

• Having accessible and affordable housing• Continuing involvement in the fabric of

community social situations and experiences

• Addressing problems stemming from pathological aging

• Helping older families who are carers

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Concluding points

• Becoming “enablers”– Educating - stimulating awareness of aging, its physical,

social, and mental components among providers– Planning – understanding the demographics of the ID

population and projecting the trajectories of health status, housing needs, and other supports

– Financing – ensuring that budgets reflect resources for supporting retirement, aging in place, and dealing with pathological aging issues

Matthew P. Janicki, Ph.D.University of Illinois at Chicagomjanicki@uic.edu

Overview on Aging and Related IssuesOverview on Aging and Related Issuesto Adults with Intellectual Disabilitiesto Adults with Intellectual DisabilitiesHong Kong, June 29, 2009Hong Kong, June 29, 2009