Healthy Ageing - Adults with
Intellectual
Disabilities
Ageing
& Social Policy
Senior
Authors
J.
Hogg, R. Lucchino, K. Wang, M. Janicki
A Report of the Aging Special Interest Research Group of the International
Association
for the Scientific Study of Intellectual Disabilities
January
2000
Submitted to the World Health Organization
Geneva,
Switzerland
Acknowledgments
Working Group Members: The Report was prepared by a core team composed of C
Bigby (Australia), M Björkman (Sweden), A Botsford (USA), M J Haveman
(Netherlands), J Hogg (UK) (Senior Working Group Leader), R Lucchino (USA), MP
Janicki (USA), B Robertson (South Africa), H San Nicholas (Guam), L Smit (South
Africa), R Takahashi (Japan), A Walker (UK), K Wang (Taiwan)
Partial support for the preparation of this
report and the 1999 10th International Roundtable on Aging and
Intellectual Disabilities was provided by grant 1R13 AG15754-01 from the National
Institute on Aging (Bethesda, Maryland, USA) to M. Janicki (PI).
Suggested Citation
Hogg, J., Lucchino, R., Wang, K., Janicki,
M.P., & Working Group (2000). Healthy Aging - Adults with Intellectual
Disabilities: Aging & Social Policy. Geneva: Switzerland: World Health
Organization.
Report Series
1 #1 Evenhuis, H., Henderson, C.M., Beange,
H., Lennox, N., Chicoine, B., & Working Group. (2000). Healthy Aging -
Adults with Intellectual Disabilities: Physical Health Issues. Geneva,
Switzerland: World Health Organization.
#2 Walsh, P.N., Heller, T., Schupf, N., van
Schrojenstein Lantman-de Valk, H., & Working Group. (2000). Healthy
Aging - Adults with Intellectual Disabilities: Women's Health Issues.
Geneva, Switzerland: World Health Organization.
#3 Thorpe, L., Davidson, P., Janicki, M.P.,
& Working Group. (2000). Healthy Aging - Adults with Intellectual
Disabilities: Biobehavioral Issues. Geneva, Switzerland: World Health
Organization.
#4 Hogg, J., Lucchino, R., Wang, K., Janicki,
M.P., & Working Group (2000). Healthy Aging - Adults with Intellectual
Disabilities: Aging & Social Policy. Geneva: Switzerland: World Health
Organization.
#5 Janicki, M.P., & Breitenbach, N.
(2000). Healthy Aging - Adults with Intellectual Disabilities: Summative
Report. Geneva: Switzerland: World Health Organization.
1.0 Background: Ageing and Social Policy
- Barriers and Goals
1.1 Perspectives of International
Organizations
1.1.1 The International Plan of Action on
Ageing was the first international instrument on guiding the formulation
of policies and programs on ageing throughout the world, most recent update
[1]. It was endorsed by the United Nations General Assembly in 1982 (resolution
37/51). The resolution set out to strengthen the capacities of Governments and
society to deal strategically with ageing populations and to address the
developmental needs of older people themselves. In 1991, the United Nations
General Assembly adopted the United Nations Principles for Older Persons
(resolution 46/91), the eighteen principles of which fall into five clusters
concerning their status:
• independence
• participation
• care
• self-fulfilment
• dignity
1.1.2 Support for these principles has been given
added impetus In the proposal for 1999 as the International Year of the
Older Person. The United Nations has urged the adoption by member states
of the basic principles set out in the 1982 resolution, in order to ensure that
policies are designed in such a way that they address the needs of older
people.
1.1.3 It is intended in the above
documentation to include all people as they age, and implicitly those with
intellectual disabilities should benefit equally as age-related policies and
practices evolve. Older people with intellectual disabilities should therefore
have equal entitlement to medical treatment for both physical and mental
disorders and good quality social provision as their peers within the society
of which they are members. To ensure that such development is explicit in
future work, delegates meeting recently in Cyprus, (29 March 1998), urged:
(i) that the Secretary General of the United Nations, within the framework of
the 1999 International Year of Older Persons,
encourage the inclusion of older persons with intellectual and developmental
disabilities, and
(ii) that national and international
organizations across the world advocating for persons with intellectual and
developmental disabilities communicate their support for such a resolution to
the Secretary General of the United Nations.
"The Larnaca Resolution" Journal
of Intellectual Disability Research, 1998, 42(3),
p.262.
1.1.4 The fundamental principle underlying
this resolution is an emphasis on the inclusion of older persons with
intellectual disabilities in both health and social services and the wider life
of the community in which they live. Such a view is entirely consistent with
the progress towards inclusion that is being made for all people with
intellectual disabilities across the lifespan, but requires special
consideration in relation to the later years of life.
1.2 World Health Organization Initiative
1.2.1 As a pending non-governmental
organization (NGO) under the World Health Organization, the International Association
for the Scientific Study of Intellectual Disabilities (IASSID) has been
requested to develop a summative paper on the health needs of people with
intellectual disabilities, together with recommendations for effective
intervention to improve the health status of such older adults.
1.2.1 Four Working Groups were established concerned with
Ageing & Social Policy, Physical Health & Impairment, Biobehavioural
Issues and Women's Health & Related Issues. The present report should be
seen as providing the wider context in which the specific health and biological
issues dealt with in these papers have relevance, and in which women's needs in
particular require consideration. Similarly, issues of health and well-being
must be located in the wider comprehensive social framework of community care
in which people lead their lives and offered suitable support.
1.3 Inclusion
International and the Ageing Initiative
1.3.1 Working cooperatively with the IASSID and the WHO to accommodate this
global policy issue, Inclusion International (II) (formerly known as the
International League of Societies for Persons with Mental Handicap) has also
formulated a formative statement on the inclusion of older persons with
intellectual disabilities within the fabric of their society (57). II
recognizes that the variations among the countries of the world pose the most
significant obstacle to establishing universal principles that address ageing
and intellectual disabilities. II recognizes the cultural gulf between and within
industrialized societies and developing countries, but also recognizes that
respect and dignity are the rights of all human beings and pursues four
elemental guiding principles: inclusion, full citizenship, self-determination,
and family support. These guiding principles define good ageing, social and
health public policies and practices and provide a standard for all nations in
their activities related to the ageing of people with intellectual
disabilities. They also form the standard for the recommendations found in this
report.
1.4 Ageing, Social and Health Policy
1.4.1 The present paper is concerned with the
first of these issues, ageing, social and health policy as it affects people with
intellectual disabilities as they get older and live into old age. Here we
consider the necessary policies and practices conducive to ensuring that older
people with learning disabilities are treated in a manner that is acceptable to
them and is compatible with the International Plan of Action on
Ageing.
1.4.2 During the course of the paper
reference will be made to the five areas dealt with in the UN statement noted
above, i.e., Independence, Participation, Care, Self-fulfilment
and Dignity.
1.4.3 Implicit in the philosophy underlying this paper is
the view that ageing is a life long process. There is no fixed cut-off point at
which people with intellectual disabilities become old, and the studies on
which this report draws vary considerably with respect to the lower age-band
defining their study populations. Typically, however, consideration of ageing
takes the sixth decade when people are in their 50s as a starting point for
determining age-related change. This picture is complicated by the occurrence
of premature age in some individuals with intellectual disabilities, most
obviously those with Down syndrome. The present report, therefore, uses the
expression "older people with intellectual disabilities" refer to
people in the 50s through to 'old-old' age. With age 60 years as a somewhat
arbitrary but necessary marker. We are also mindful that biological ageing may
pre-date this age and social ageing occur later than it.
2.0 Ageing in the
Developing and Developed World: Myths, Cultural Stigma Vs. Human Rights and
Valued Status
2.1 Throughout both the developing and developed worlds, improved health and
social care have led to dramatic increases in the life expectancy of both men
and women. In some western countries life expectancy has doubled during the
20th Century while those surviving to 65 years do so in better health than in
the past [2]. It is estimated in the UN
International Plan of Action that between 1975 and 2025 world
population will double, with a 224% increase in the number of people over 60
years of age. By that date, it is estimated that 72% of over 60s will live in
developing regions, and the proportion of over 60s in those regions will by
then approximate levels observed in developed regions in the 1950s.
2.2 Several studies have indicated an increased incidence of intellectual
disability in developing relative to developed regions, in some cases double of
more. For illustrative studies see: [3] with reference to Bengal and Bangladesh
and also: [4] in Pakistan. In combination with an increasing life expectancy,
prevalence rates of intellectual disability are high in developing regions. In
considering policy and programs in developing and developed regions, therefore,
it is clear that the need for positive initiatives is and will increasingly be
equally pressing. While the basic principles already noted will also be just as
relevant, it is clear that their realization will have to reflect regional and
cultural differences. The UN International
Plan of Action on Ageing asserts that each country must respond to
demographic trends and the resulting changes: "In
the context of its own traditions, structures and cultural values..."
. This view will be equally applicable to older people with intellectual
disabilities, though for some regions people with intellectual disabilities may
not at present constitute a priority given the wider social problems some
communities face. In focusing on ageing
and intellectual disability,
therefore, it is important to ensure that policies affecting all people with intellectual disabilities
are developed in a positive way as a background to improving their situation
when they pass 60 years.
2.3 We must also at the outset caution against any implication that issues and
models of services evolved in developing countries are naturally translatable
to developing regions. The failure of Western models of rehabilitation to take
root in developing regions has been reported by [5] where it is noted that they
are often not sustainable economically and are essentially urban-based. This
last point is of particular importance as 70-80% of people in developing
regions live in rural settings. In addition, both the health and economic
conditions in some societies are far removed from those in the affluent
developed regions. Endemic diseases and epidemics present enduring problems in
such regions and a focus for health and social services. Poor neonatal
facilities and lack of adequate services for older people mean that vulnerable individuals
with disabilities will have high mortality and will not live to later life. A
direct concern with older people with intellectual disabilities may therefore
be peripheral to efforts to improve health and social care for the wider
population of all ages.
2.4 Bearing the foregoing in mind, the position adopted in the present paper is
that each country must develop strategies for older people with intellectual
disabilities that are commensurate with its stage of social and healthcare
development, and which reflect wider demographic factors. However, the argument
is also advanced that those who are older and have intellectual disabilities
should be included within policies and approaches designed for the betterment
of the older population generally, and should receive whatever additional
support they require to lead a healthy and fulfilled life.
2.5 In evolving inclusive policies in developing regions it is crucial to
acknowledge the wider social context in which disability and poverty can go
hand in hand. In the absence of family support, the lack of safety nets can
result in extreme outcomes such as starvation, See [6] and [7]. In addition,
further barriers may be presented by myths related to disability and cultural
stigma attached to people with disabilities, as well as overall poor health
status in the population as a result of inadequate health services. In many
cases, these wider influences will have led to poorly organized or non-existent
mechanisms for supporting people with intellectual disabilities.
2.6 In a broad sense, in developed nations, ageing-supportive social and health
policies should be focused on promoting productive or successful ageing (58).
Whilst, in developing nations ageing-supportive public policies should be
focused on more basic functions, such as promoting healthy ageing and
encouraging survival into old age. Once such basics are achieved, then the
higher level goals of productive or successful ageing should also be
incorporated into the national public policy structure. Similar processes
should apply to how nations construct their public policies involving the
ageing of adults with intellectual disabilities.
3.0 Ageing and Intellectual
Disability: Health & Social Systems - Lack of Speciality Input and
Improving Quality of Life
3.1 Longevity and intellectual disability
in developed regions
3.1.1 The social and medical factors leading to the increase
in longevity described above have also significantly increased the life-span of
people with intellectual disabilities in both developed and developing
countries [8]. Increased longevity among people with intellectual disabilities
has been reported in European countries including Austria, Germany and
Switzerland [9], Denmark [10], France [11], Netherlands [12], and Ireland [13]
and the United Kingdom [8] as well as in the United States [14] [15] and
Australia [16]. While there is documentation that people with severe or
profound intellectual disability, multiple disabilities (e.g. cerebral palsy,
epilepsy, severe motor handicap, inborn heart defect), and persons with Down
syndrome [17]; [18]; [19] still have a reduced life expectancy, age-specific
mortality rates among people with mild intellectual disability and adults
within the general population in developed countries are comparable [20]; [21].
3.2 Longevity and
intellectual disability in developing regions
As noted above (Section 2.2) increased incidence of intellectual disability
coupled with greater life expectancy will result in a growing population of
older people with intellectual disability in developing regions. Nevertheless,
population data from developing regions comparable to that available in
developed regions are typically lacking e.g. [22].
With respect to policy and planning,
it is unrealistic in the context of developing services for older people to
split this emerging population off from the wider field of ageing. The need is
to develop infrastructures for health ageing which can be accessed by older
people with intellectual disabilities. In this way, natural inclusion can be
facilitated, supported by relevant training for both professionals and the
wider public.
Finally, any given
culture may have its own valued means of improving the health and quality of
life of its members, including ways that have only recently attracted the
interest of developed societies. These may include the use of local healers and
medicinal plants and may offer approaches quite distinct from those familiar to
western advisors.
3.3 The relevance of data on the older population
3.3.1 In proposing the development of positive programs for older people
generally, the UN International Plan of
Action on Ageing asserts that: "Data
concerning the older sector of the population -- collected through censuses,
surveys or vital statistics systems -- are essential for the formulation,
application and evaluation of policies and programs for the elderly and for
ensuring their integration in the developmental process." Such
data bases will deal with the 60 years plus population and will entail data
collection specifically relevant to planning both health and social services.
Governments and organizations in a position to undertake such data collection
are urged to do so. However, it is also acknowledged: "In some developing countries, the trend towards
a gradual ageing of the society has not yet become prominent and may not,
therefore, attract the full attention of planners and policy makers who take
account of the problems of the aged in their overall economic and social
development planning and action to satisfy the needs of the population as a
whole."
3.3.2 Both the requirement to collect data and the constraints on undertaking
such an exercise are clearly of equal relevance to older people with
intellectual disabilities. Such surveys need to be carried out within the
cultural framework of the society which itself will influence the definition
and perception of intellectual disability. It is unlikely that a common
scientific framework of criteria defining the population on an international
scale will prove feasible. It is essential, however, that data collection is
formally tied into service planning and development [23]. It should also be
noted that evidence exists from developing regions that more reliable data can
be achieved once services are established [24].
While use of international classification systems should be considered, it may
well be that criteria for inclusion will be determined more by administrative
and service-based criteria in the first instance. However, a review of such
procedural issues is called for and noted in the following recommendations.
Recommendation 1
[Establishing data bases (3.1-3.3)]
1a Governments should be encouraged to include older people with intellectual
disabilities as part of any surveys of their ageing populations.
1b International and governmental agencies in
developed regions should be encouraged to provide technical support to
developing regions on the type of data needed on this population which will
inform the setting up of appropriate services.
1c Attention should be given by relevant
international agencies to developing compatible methodological and practical
approaches with respect to such data collection in order to enable the
development of an international database.
3.4 Increasing awareness of ageing and
intellectual disability
3.4.1 Professionals, policy makers and
academics working in the field of intellectual disability in developed regions
have become thoroughly aware of the issues involved in demographic changes
associated with intellectual disability. Awareness is also increasing in
developing regions, particularly in urban areas where economic pressures are
making it more difficult for younger family members to sustain older members
with intellectual disabilities. However, wider acknowledgment of the challenges
arising from such demographic change by significant agencies is limited. The UN
International Plan of Action on Ageing draws attention to the role of governments
in developing short-, medium- and long-term action to implement the Plan of
Action as well as the role of international and regional co-operation.
Technical co-operation, the exchange of information and experience, and the
formulation and implementation of international guidelines are proposed. Such
strategies have equal relevance to older people with intellectual disabilities
and their encouragement is suggested in the following recommendations:
Recommendation 2
[Increasing awareness of ageing and
intellectual disability (3.4)]
2a WHO, IASSID, and II, together with other
relevant international organizations should collaborate in arranging and
supporting technical assistance for providers and practitioners addressing the
service needs of older persons with intellectual disabilities in developing
regions.
2b Formal presentations should be made to governments and
the relevant service commissioners by professionals from their respective
countries and by outside representatives on the need to include the assessment
of older people with intellectual disabilities on policies on ageing.
2c IASSID and II, together with its relevant
working parties and committees, should explore opportunities for global
co-operation in enhancing the quality of life of older people with intellectual
disability through the development of informed policies and programs.
2d IASSID and II should give technical
assistance to providers and practitioners in developing regions.
3.5 Ethnicity, culture and ageing
3.5.1 While the foregoing deals essentially
with an international continuum of regions defined with respect to economic
development, it is important to bear in mind two further issues that extend
these considerations with respect to both ethnicity and culture:
3.5.1.1 Most developed countries have
ethnically diverse populations which have increasingly become the focus of
social gerontologists. Issues of ethnicity have already been identified as
highly relevant to a consideration of ageing and intellectual disability [25];
[26].
3.5.1.2 The social context in which people
age is not only diverse across cultures, but is also subject to change, not
least with respect to family structure [27], a situation of considerable
importance with respect to continued family caregiving.
Recommendation 3
[Ethnicity, culture and ageing (3.5)]
3a In suggesting policies and programs to
different governments on issues related to ageing and intellectual disability,
full cognisance must be taken of ethnic and cultural differences both within
and across regions that affect attitudes to older people generally, and those
with intellectual disabilities in particular
3.6 Health problems in older people with
intellectual disabilities
The chance of people with intellectual disabilities being affected by health problems is higher than that in people without intellectual disability. Indeed, some conditions may be related to the aetiology of a person's cause of intellectual disability. As people age, "normal" ageing problems add to these congenital disorders [28]. As in older citizens in general, prevalence is increasing in older age groups for some disorders such as visual and hearing disorders, dementia, affective disorders, hypertension and other cardiovascular disorders [29]. Older age, however, is clearly not the only risk factor for contracting disease in people with intellectual disabilities. People with more serious levels of intellectual disability and people with Down syndrome are at a higher risk for some chronic conditions than those with a more milder level of intellectual disability and those with intellectual disability resulting from causes other than Down syndrome.
When considering prevalence, the significance
of morbidity, and the possibility of early detection and treatability [30],
some disorders have priority above others [29].
Recommendation 4
[Screening for health problems (3.6)]
4a The following disorders should be
considered when developing screening instruments and procedures: visual and
hearing problems, gastro-intestinal disorders, dementia, depression and
hypothermia.
4b While conditions such as hypertension,
diabetes and chronic urinary tract infections may proceed symptom-free into old
age in people who have difficulty in verbalizing their health problems, timely
and adequate assessment and treatment should prevent secondary conditions
4.0 Access to Health Services: Improving
Poor National Health Status Through More Responsive Systems and Better Training
4.1 Central to the policies and programs referred to above is the need to
ensure that older people with intellectual disabilities have access to health
services that include health promotion and support services that will guarantee
the greatest possible health quality of life as they age. This will be
dependent upon their inclusion within existing systems of health service
provision, and will also be heavily influenced by the quality of such provision
in their region. Marked differences in such quality be found along the
continuum of regional development. Access to health services by people with
intellectual disabilities can present problems in both developed and developing
regions. Common to both are the difficulties arising from the responsibility of
family and professional carers to access health services on behalf of the
person with intellectual disabilities. Other barriers also have to be overcome,
however.
4.1.1 Primary healthcare provision:
Developed regions
Because of "cohort" and "healthy survivor" effects many of
the older adults with intellectual disability tend to be more able and in
better health than is the case for children with intellectual disability.
Contrary to the wealth of evidence pointing to the existence of age-related
adaptive decline in adults with Down syndrome, data regarding similar decline
in intellectually disabled adults without Down syndrome are less conclusive
[21]. Advancing age of persons with intellectual disability is no reason to
exclude them from community integrated health service provision by supplying
specialized residential health care.
Access to primary health care provision in the community is still a problem for
young and old persons with intellectual
disabilities. Such difficulties may be particularly in evidence where
significant deterioration is observed in chronic diseases of old age,
particularly where dementia is suspected.
In many countries there is a tendency towards community living of older persons
with intellectual disability and to separate living arrangements from
institutional care provision. Big residential facilities are being divided into
smaller decentralized units, which are quite often located in populated areas.
People living is such settings should be on the list of general practitioners with
an active consultation attitude and health screening policy [31]; [32].
Adequate in-home services for both nursing care and assistance in activities of
daily living and management of household activities, should be offered to let
them stay as long as they wish in their original living environment.
In developed regions, however, access to
primary healthcare provision in the community is restricted by a wide range of
factors [33].
4.1.1.1 lack of pertinent information on medical history
4.1.1.2 lack of training concerning the health issues relative to older person
with intellectual disabilities
4.1.1.3 difficulty in undertaking medical examination because of communication
problems or in some instances, behavior problems
4.1.1.4 absence of specialized back-up for complex medical conditions
4.1.1.5 lack of understanding on doctor's part of informed consent issues
4.1.1.6 difficulty in dealing with sexual issues related to contraception.
The above problems will continue to be present as consultation on age-related
medical problems is sought. Such difficulties may be particularly in evidence
where significant deterioration is observed, particularly where dementia is
suspected.
Despite the above difficulties a policy of inclusion requires that conditions
that encourage access to generic health services, information and education is
put in place. Specific recommendations to achieve this (again drawing on [33])
include:
Recommendation 5
[Primary healthcare provision in
developed regions (4.1.1)]
5a Clarify the "information
problem" and develop guidelines in pamphlet form for carers to ensure they
provide adequate medical history information
5b Make available to health professionals
information on specialists in aspect of intellectual disability that may
require referral.
5c Establish continuing medical education
programmes related to behavioural difficulties, use of psychotropic medication,
specific syndromal issues.
5d Under the auspices of WHO, prepare easily
translatable protocols and education material for physicians and other health
care providers in developing countries.
5e Provide information on informed consent by
patients with intellectual disabilities.
5f Develop common health care protocols on
common disorders applicable to all individuals and identify areas of health
maintenance and promotion and alternative programmes that are developed jointly
by primary health care teams and the relevant social agencies.
More generally, the inclusion of issues
related to ageing and intellectual disability in the curricula of primary
healthcare professionals is called for with respect to physicians, therapists
and nurses as well as providers of social services.
4.1.2 Primary healthcare provision:
Developing regions
In developing regions the issue of
accessibility relates to wider issues to do with access to food, clean water
and acceptable shelter, as well as good quality healthcare for the whole
population, See [5]. General shortcomings in healthcare systems will be
accompanied by an absence of specialist intellectual disability practitioners
such as nurses, therapists and physicians.
Against this background, inclusion of older
people with intellectual disabilities in primary healthcare and habilitation
services must be viewed in the context of the inclusion of all people,
regardless of age, in the wider service framework. To achieve this the
following steps should be taken as health services for the whole population are
progressively developed:
4.1.2.1 screening from infancy onwards to establish the nature of individuals'
disabilities and determination of the ways in which these can best be met
4.1.2.2 surveillance across the life course
with respect to conditions associated with specific risk factors
4.1.2.3 development of provision within
evolving health and social services that will facilitate access of people with
intellectual disabilities
4.1.2.4 in-service training of relevant professionals
and aids to meet these needs in inclusive services including specialist
information on ageing and intellectual disability, medication and specific
syndromal issues
4.1.2.5 support for family and other
caregivers to identify the healthcare needs of those for whom they provide to
ensure appropriate referral
4.1.2.6 information to carers on special
concerns with respect to ageing of person with Down syndrome or cerebral palsy
Recommendation 6
[Primary healthcare provision in
developing regions (4.1.2)]
6a Governments and service planners in
developing regions should be encouraged to consider service design and
structures that will optimise the inclusion of people with intellectual
disabilities in mainline health and social services
6b IASSID make available to governments and national and local service planners
information and advice that will facilitate such inclusive policies
4.2 Premature ageing among people with
intellectual disabilities
While people with Down syndrome shown earlier
decline in abilities than their non-Down syndrome peers [39],[40], it is
important to emphasise that since the 1950s the longevity of people with Down
syndrome has increased dramatically. Appropriate healthcare and social support
to enhance quality of life from 40 years onwards has therefore become a key
element in service provision for this population.
Clearly, where premature ageing is possible,
age-related support needs to be put in place well in advance of conventional
chronological age. Medical surveillance of people with Down syndrome from 40
years onwards will ensure that intervention and support is offered with respect
to specific areas of decline at the earliest possible time. Briefing for staff
in immediate contact on anticipated difficulties will increase the probability
of intervention at the earliest possible time.
Though premature ageing in people with Down
syndrome has been distinguished from the on-set of dementia, it is known that
individuals with this condition are particularly at risk for dementia.
Guidelines for health and social care management over the course of this
illness, applicable to both people with and without Down syndrome, are
available [41].
Recommendation 7
[Premature ageing among people with
intellectual disabilities (4.5)]
7a In developing health services for older
people with intellectual disabilities, policy makers and providers should take
into account the probability of premature ageing in people with Down syndrome
and cerebral palsy and include them in ageing population data bases.
7b Staff and families supporting people with
Down syndrome require specific information and/or training to enable them to
identify areas in which premature decline is occurring.
7c Physical and mental health surveillance
relevant to older people in the general population should be considered for
people with Down syndrome from 40 years onwards.
7d Policies should be implemented to diagnose
Alzheimer dementia accurately in the general population with the inclusion of individuals
with developmental disabilities and employ suitable care management practices.
7e In line with the overall policy of
inclusion in mainstream services advocated in this document, consideration
should be given to the inclusion of Down syndrome individuals with dementia in
services for people with dementia in the wider population.
4.3 Additional medical
and social support
In every country, there have been long standing difficulties for people with
intellectual disabilities in accessing services for hearing, vision, and dental
care, as well as other health-related services. These difficulties are
exacerbated in developing regions where access to such services are limited for
the entire population. Lack of services to address these needs often allows
easily remedied conditions to increase barriers posed by disabilities and
reduces the participation of people with intellectual disabilities in daily
life. Also, the need for these vision, hearing, dental and other health-related
services remains and may increase as people with intellectual disabilities age.
Attention to the need for such services for people with intellectual
disabilities must be included in the training of general physicians, and the
development of generic health and health-related services. Moreover, the needs
of the ageing person with intellectual disabilities must be taken account of in
the preparation of dentists, audiologists, ophthalmologists, chiropodists and
other health related service personnel in developed regions. Such needs must
also be addressed in the assessment, planning, training and education and
supportive services and their delivery in developing regions.
Recommendation 8
[Additional medical support (4.3)]
8a Where appropriate and possible health and
social service providers in a given administrative area should audit the extent
to which general health care, for example dental, chiropody and sensory deficit
services are meeting the needs of older individuals with intellectual
disabilities within the generic ageing services provision.
8b The extent to which generic dental, chiropody and sensory deficit services
have the expertise to meet the needs of older people with intellectual
disabilities should be determined and steps taken to increase the inclusiveness
of such services.
4.4 Care and age-related difficulties
Age-related decline and the development of chronic and acute illnesses
characterise ageing in general as well as people with intellectual disabilities
as in the wider population. The latter typically use a number of different
types and sources of care simultaneously [34], and opportunities for those with
intellectual disabilities to access these services in the same way are
required. The continuum of care should embrace preventative measures as well as
acute services (typically involving nursing care), while post-acute care will
require recuperative support and possibly rehabilitation services. With respect
to the latter, specialist gerontological services, including relevant
therapies, will be required. Long term care will involve enduring provision in
a managed setting or family home.
Of equal importance is appropriate social
provision, typically involving long term caregiving and/or support in community
settings. In later life these will be managed settings, e.g. group homes or
supported living, with an important, but decreasing number of older adults
still living with family carers. The extent of both types of support will
depend upon the kind of service provision available in the society, as well as
cultural attitudes towards family responsibility. Where family care continues,
then the social and health needs of caregivers should be viewed as a priority
and met through appropriately focused services.
Recommendation 8
[Care and age-related difficulties (4.4)]
8a Older people with intellectual disabilities with chronic and often multiple
medical problems are entitled to the full continuum of acute and long term care
as the rest of the population
8b Older people with intellectual
disabilities should be entitled to specialist services where their condition
requires such input
8c The contribution of good quality social
and community support provision to quality of life should be acknowledged and
met through appropriate support and services
4.5 The medical consequences of significant
life transitions
Older adults with intellectual disabilities are likely to face major
transitions in their living situations as they and their families age. For
adults who live with family members, death or frailty of parents or age-related
changes of the person with a disability can necessitate a move to a different
setting. For adults who live in out-of-home residential settings, both changes
in social policy and changes in their own health can result in relocation to
other settings. In the developed world over the last three decades thousands of
older adults with intellectual disabilities have been moved from institutions
to community placements [35]. This has been in response to shifting ideologies
of care which now emphasise community inclusion over previous more segregated
approaches. The major life transition of moving from one setting to another can
have significant health consequences for adults who move [36].
When people are relocated, increases in morbidity and mortality are a concern.
This phenomenon, termed "transfer trauma" has been noted among people
in nursing homes and in facilities for those with intellectual disability. In
particular it is a concern for persons in frail health. However, research in
the fields of both ageing and intellectual disabilities has indicated that
these transitions can be successful with proper attention to the relocation
process and to the quality of care provided in the new residence [37]; [38]. To
promote better socio-emotional outcomes, there is a need for psychological
preparation, attention to self-determination and individual preferences, and
continuity in friendships and caregivers. To better meet the medical needs of
older adults experiencing residential transitions it is important to ensure
sufficient access to medical care, transmission of relevant medical
information, and seamless continuity of treatment.
Recommendation 9
[The medical consequences of significant
life transitions (4.4)]
9a Prior to a change in living setting, attention needs to be paid to
psychological preparation for the change and to consideration of the
individual's preferences.
9b Prior to a change in living setting , a
full assessment of the current and anticipated medical needs and of the future
healthcare network's ability to meet medical needs should be determined and
well documented. This information should follow the adult into the new setting.
9c Intensive monitoring should be undertaken
in the period following relocation.
9d Continuity in treatment and in personal
relationships with friends, families, and carers can help ease transitions.
9e New settings need to have sufficient
access to health and social care and front line staff need to be adequately
trained in emergency medical procedures.
4.4.1 More recently there has been concern to facilitate transitions for
individuals living at home to similar community settings, both to expand their
independence and community participation. This transition can also prepare the
person and the family for new challenges concerned with the ageing process.
Although greater emphasis is now being placed on greater participation in
decision-making for such persons, the reality is that these transitions are
often imposed without consideration for the person's wishes or future health
needs. It is important that in considering such transitions their impact on the
health of the individual is paramount, whatever the ideological viewpoint
driving such service developments.
Some developing regions have relied on institutional settings but most, in the
absence of resources, rely on families to provide care. As the life expectancy
of persons with intellectual disabilities increases, and new resources must be
identified to support in-home and community based care. Decisions about when to
maintain in-home care or to plan for transitions to another setting should be
guided by considerations of cultural factors, service needs, consumer choice,
service availability, current and future health needs and the potential
consequences of transitions.
4.6 Healthcare education
4.6.1 Increase in health risks in community
settings have been reported [42]; [43]. These relate to both the less
restrictive ethos of many community settings involving greater exercise of
choice and in some cases increased disposable income. Specifically increased
smoking, alcohol consumption, poor diet and lack of food and inadequate
physical exercise all pose health risks. Community life is also likely to
increase risk of sexually transmitted diseases and HIV/AIDS regardless of the
whether the person is living independently, in a managed setting, or in the
family home.
4.6.2 There is a need, therefore, to develop health
education programmes which will compensate for risks associated with poor
health habits. In particular, improved nutrition and dietary habits require
attention. There is a need to inform health education programmes for older
people with intellectual disabilities by drawing on the wider literature on
health education. However, individual choice as to whether to engage in such
education remains the right of the individual, as in the wider population of
older people.
4.6.3 In developing regions, the health risks listed above, particularly with
respect to nutrition, will be considerably greater than in developed regions.
Here improvement will only occur to a significant degree as the wider condition
of the society improves. This issue of personal choice may here be of less
relevance than ensuring that older people with intellectual disabilities gain
from wider public health improvements to the same extent as their peers without
intellectual disabilities.
Recommendation 11
[Healthcare education (4.6)]
11a Health education and preventative
intervention programmes should be available to older people with intellectual
disabilities and to their families to the same extent as they are for the wider
population.
11b All health education programmes should
include people with intellectual disabilities.
11c Health education information should be
designed to be intellectually accessible to older people with intellectual
disabilities and their families.
11d Strategies for intervention should draw
on the wider literature on behavioural and cognitive programmes with this
population.
5.0 Health, the Social Context: Short
Comings in State Input and Improving Social Support
5.1 An individual's health extends beyond
biomedical explanations that relate to the physical body [44]. The World Health
Organisation [45] stated a well known and much broader view indicating "health
is a state of complete physical, mental and social well-being and not merely
the absence of disease and infirmity." Although such a position has
been criticised as being idealistic, it draws attention to the need to view
health as the outcome of influences in addition to biomedical health care and
management. Such a view is equally applicable to people with intellectual
disabilities. Without an acceptable individual and social quality of life the
healthcare recommendations noted above are unlikely to contribute fully to
realising the principles described in the UN International Plan of Action
on Ageing in this or the wider population.
5.2 While the framework set by the UN is
equally applicable to older people with and without intellectual disabilities,
it is important to attend to some of the special needs of the former within the
wider agenda. Before dealing with these it will be helpful to note the UN's
social agenda for older people:
"Policies and action aimed at
benefiting the ageing must afford opportunities for older people to satisfy the
need for personal fulfilment, which can be defined in its broadest sense as
satisfaction realised through the achievement of personal goals and
aspirations, and the realisation of potentialities. It is important that
policies and programmes directed at the ageing promote opportunities for
self-expression in a variety of roles challenging to themselves and
contributory to family and community. The principal ways in which older people
find personal satisfaction are through: continued participation in the family
and kinship system, voluntary services to the community, continued growth
through formal and informal learning, self-expression in arts and crafts,
participation in community organisations and organisations for older people,
religious activities, recreation and travel, and participation in the political
process as informed citizens."
5.3 Consistent with the point made in Section
1 (above), all of these activities entail inclusion in the wider society, and
equally represent aspirations of, and for, older people with intellectual
disabilities. For the present purpose we will consider the activities under
four broad headings: the family (5.4 and 5.5), leisure and learning (5.6),
income security and employment (5.7) and community inclusion (5.8).
5.4 The family and friendship
While there is now an extensive literature on
the family care of people with intellectual disabilities in the developed
regions, such information is generally not available for their developing
counterparts. A similar situation holds true for information on friendship.
Most of what follows, therefore, is derived from studies in developed
countries. Complementary information from developing countries will in future
make an important contribution to the emergence of good quality services for
older people with intellectual
disabilities.
5.4.1 The International Plan of Action on Ageing
acknowledges the family as the fundamental unit of
society, despite its ever changing nature and
widely differing cultural conditions. Its rôle in caring for older people is
acknowledged, as is the family's right to support for undertaking such care.
The presence of a family member with intellectual disabilities does not lessen
the ties within a family. Indeed, it is clear that regardless of the level of
ability or behavioural difficulties, or where a person with intellectual
disabilities lives, family members go to considerable trouble to main active
contact. For many parents, particularly mothers, "non-normative" caring
extends well into adult life [46]. Thus, as the person with intellectual
disabilities ages, she or he continues in the family home of an ageing parent.
Though the percentage of people with intellectual disabilities living at home
declines with advancing years, there remains a small percentage who still live
with parents who are themselves over 60 years, some in their 90s.
5.4.2 While research shows that most parents find extended caring very
fulfilling, the experience has definable stresses and with advancing age
becomes in practical terms increasingly difficult. Service providers are often
unaware of this situation and their response can be unacceptably slow [47]. In
addition, the interests of the adult with intellectual disabilities and family
carers may be in conflict. Here the philosophy and rôle of person-centred
planning provides a way forward by making values and processes explicit in
decision making [48].
5.4.3 Research studies in developed regions have considered many facets of
family caring and it is possible to draw the following conclusions:
5.4.3.1 Family caregivers of adults with intellectual disabilities represent a
unique (non-normative) group of caregivers.
5.4.3.2 Family caregiving is a valued activity for the mother or other relative
involving both satisfaction and stress.
5.4.3.3 For the majority of family caregivers their rôle is fully accepted by
them and is not seen merely as an unavoidable option.
5.4.3.4 A variety of stresses have been demonstrated that increase the burden
of care, and some of which are specifically linked to the ageing of the
caregiver and her adult child.
5.4.3.5 Services to reduce stress and hence the burden of care do contribute
positively, but not optimally, and are often insufficiently tailored to
individual need to do so.
5.4.3.6 Service providers fail to understand and appreciate the nature of long
term family caregiving for adults with intellectual disabilities.
5.4.3.7 There are important cultural differences in attitudes to family care
and what motivates it, of which service providers needs to be acutely aware. In
particular in some ethnic minority groups in developed regions and in families
in developing regions, continued family caregiving rather than the
"launch" of the person into the wider community remains the norm.
5.4.3.8 In the same way that it has been emphasised that adults with
intellectual disabilities are people first,
so caregivers must be considered people
first, and consideration given to their full identity and multiple
rôles.
5.4.3.9 There are marked individual differences among caregivers in their
willingness to plan for the future. While the natural familial commitment to
caregiving can make them reluctant to plan, this situation is exacerbated by
the inadequate response of service providers to their needs.
5.4.3.10 There are cultural differences in attitudes to future planning which
must be understood if appropriate assistance is to be given to family
caregivers.
5.4.3.11 Adults living at home with ageing caregivers can in their own right
become significant resources for their caregiver.
5.4.3.12 Adults living at home may have different views regarding their future
from those of their caregivers, raising complex issues for mediators. The
approach of person centred planning provides a philosophy and context in which
the interests of the older person with intellectual disabilities can be
realised.
5.4.3.13 The wider social and economic context in which caregivers provide has
an important bearing on their well-being, over and above the specific
satisfactions and stresses of caring.
5.4.4 Comparable studies are called for in developing regions in order to
determine how family values and attitudes influence caregiving to adults with
intellectual disabilities.
5.4.5 Within the wider framework of policy on ageing it is clearly important to
see these older family carers as intrinsic to the development of policy and
programmes in the same way as are their daughters and sons. In addition, as a
significant resource for and influence on their adult children, they contribute
directly to her or his well-being.
5.4.6 While the family constitutes a key element in the social networks of
people with intellectual disabilities, such networks are typically restricted
to family members, service providers and peers with intellectual disabilities.
The value of these relationships should not be underestimated or undervalued.
However, the desirability of extending networks to include other adults, both
younger and of similar age, is widely urged. Such an extension has the
potential for enriching the lives of people with intellectual disabilities and
increasing social participation, as well as enhancing the life of the wider
community.
5.4.7 When a person with intellectual disabilities moves from one setting to
another, for example relocation from an institution to the community or to
another neighborhood due to the death of a parent, longstanding friendship
networks can disrupted or lost. Service planners should be mindful of this
undesirable outcome of a change which is otherwise beneficial.
Several recommendations follow from this perspective:
Recommendation 12
[The family and friendship (5.4)]
12a Policies should be developed to provide
or expand support for family and community carers in such a way that it is
sensitive to their own cultural and age-related needs.
12b While all policy development and service
proposals should be developed in consultation with family members and the
individual with intellectual disabilities, all those individuals who are
informally involved should be consulted.
12c Support for future planning should be
responsive to the particular readiness of the parental carer and not be driven
from the outside.
12d In developing services for older people
with intellectual disabilities attention should be paid to offering opportunities
to extend the friendship network of the person and maintain existing
friendships even where significant residential changes occur.
5.5 Cultural influences on family
caregiving
Recently, service providers and researchers
in developed countries have begun to recognise the impact of culture and
ethnicity on both the willingness of people with intellectual disabilities and
their families to seek and accept the services they need, and the perceived and
actual openness of service systems to provide services in an equitable and
welcoming manner. Developing regions also have cultural and ethnic variations
and the dominant service systems and philosophies offered by developed regions
reflect none of them. Slavish adoption of American, Western European, or other
developed region models for services for ageing persons by developing regions
will not succeed. Models must be built anew that reflect the values and
cultures of people with intellectual disabilities and their families in those
regions. Equally, developed regions must be open to modifying service models
and philosophies to reflect, welcome and respect the values and cultures of
people traditionally under- served in their countries. Particular efforts are
needed to welcome and reach out to immigrant communities.
Recommendation 13
[Cultural influences on family caregiving
(5.5)]
13a Planning for individuals with intellectual disabilities must consider and
be sensitive to cultural and ethnic influences that condition attitudes to
family caring.
13b Where cultural attitudes are negative
concerning these individuals, programmes should be developed to modify such
beliefs and attitudes towards a more positive approach to family support
5.6 Learning and leisure
The UN International Plan of Action on
Ageing urges the concept of lifelong education as promulgated by the
United Nations Educational, Scientific and Cultural Organization (UNESCO).
Specifically, informal, community-based and recreation-orientated programmes
for ageing people should be promoted with the aid of national governments and
international organisations. Recent years have seen an emerging acknowledgement
of the importance of education and leisure in the lives of older people with
intellectual disabilities [49]. The Plan draws attention particularly
to greater participation in leisure activities and creative use of time, both
aspirations now widely accepted in the field of intellectual disability. Policy
should therefore be directed to the development of programmes of learning and leisure
for older people with intellectual disabilities in inclusive community
settings, in contrast to segregated activities or essentially passive pursuits
such as watching television.
Recommendation 14
[Learning and leisure (5.6)]
14a Programs actively encouraging and
supporting integrated and active learning and leisure engagement should be
promoted with appropriate support for both older people with intellectual
disabilities and those providing these services.
14b Programs providing leisure for the
general ageing population should be inclusive for older individuals with
intellectual disabilities.
14c Leisure education programmes should set
out to enhance psychosocial inclusion as well as well physical integration.
5.7 Employment and Income Security
5.7.1 UN International Plan of Action on
Ageing draws attention to the global contrasts in income security and
employment: "Major differences exist between the developed and the
developing countries and particularly between urban, industrialised and rural,
agrarian economies -- with regard to the achievement of policy goals related to
income security and employment. Many developed countries have achieved
universal coverage through generalised social security systems. For the
developing countries, where many, if not the majority of persons live at
subsistence levels, income security is an issue of concern for all age groups.
In several of these countries, the social security programmes launched tend to
offer limited coverage; in the rural areas, where in many cases most of the
population lives, there is little or no coverage."
5.7.2 While there is little specific information on how this global situation
affects older people with intellectual disabilities, it is anticipated that the
disadvantages affecting some developing regions, particularly in rural
settings, will affect equally and to an increasing extent individuals in this
population.
5.7.3 UN International Plan of Action on
Ageing urges equality of employment opportunities for older people generally,
though attention has been drawn to a global decline in the proportion of older
persons, especially men, in the work force [2]. The situation is more serious
for older people with intellectual disabilities. International studies in
developed countries indicate that less than 1 in 10 older people with
intellectual disabilities over 50 years are in full-time employment, the ratio
for part-time employment being even lower. This ratio drops still further when
the over-60s are considered. Only a small proportion of those who are able to
work have a demonstrated track-record of being in employment. It is clear,
therefore, that these issue of employment of older people with intellectual
disabilities must be seen in the context of much earlier opportunities for people
with intellectual disabilities to have work. While work for the first time in
later life should not be excluded as a possibility, longer term improvement is
likely to come through more comprehensive employment developments.
5.7.4 The situation in many developing regions is even graver, where 70-80 per
cent of people with and without disabilities live in rural areas, and where
income for the employed is extremely low. Self-employment is here the norm,
with farming, fishing, selling and handicrafts the predominant, local
activities. It is in this context that employment for people with disabilities,
including older people with intellectual disabilities needs to be developed,
rather than in specialist, segregated settings [50]. Examples of such initiatives
which encourage and support such employment are available from a number of
developing regions [50]; [7]. The explicit extension of such schemes to older
people with intellectual disabilities has yet to be documented, however.
Recommendation 15
[Employment (5.7.1 - 5.7.4)]
15a In developing policies to increase income security in the wider population
of older people, older people with intellectual disabilities should be included
in planning with a view to their enjoying similar security to their peers
without intellectual disabilities.
15b Employment initiatives should adopt a long term view aimed not only at
improving employment opportunities for younger people with intellectual
disabilities, but with ensuring extension of employment into later life where
this is the individual's choice.
15c Support is required to facilitate local employment initiatives in
developing regions which are integrated into the local economy and reflect the
indigenous pattern of economic activity.
5.7.5 Social security
In developed regions there is usually universal social security support for
those who have retired, are unemployed, or are precluded from employment
because of job availability for people with disabilities. In developing regions
such support may be minimal or non-existent, and indeed, [50] and [7] both
place the emphasis on the availability of loans to develop employment
opportunities rather than social security.
Recommendation 16
[Social security (5.7.5)]
16a In countries where universal or limited social security benefits apply,
older people with intellectual disabilities should be included within the
social security system available to their peers without disabilities.
16b In developing regions, countries introducing limited or comprehensive
benefit s for older people should ensure that older people with intellectual
disabilities are included from the outset.
5.7.6 Retirement options
In developed regions retirement from services is a relatively new phenomenon
and is not necessarily associated the availability of a retirement pension,
particularly in the absence of a universal health or social policy. Retirement
policies in relation to older people with intellectual disabilities in
developing countries have typically been established with respect to the
transition from a day service to non-involvement, or a different type of
involvement, in that service. Reference has been made to "supplemental retirement programs"
in such settings and positive outcomes reported [51]. Such initiatives are to
be contrasted with the use of the concept of "retirement"
as a means of discharging a person from a service without offering further
support for constructive engagement in new activities. Systematic
pre-retirement programmes with older people with intellectual disabilities draw
attention to attitudinal similarities with their peers without intellectual
disabilities [52]. These and other authors urge the need for proper preparation
for retirement, a recommendation directly in line with that of the UN International Plan of Action on Ageing
: "Governments should take or encourage
measures that will ensure a smooth transition from active working life to
retirement . . . ".
In developing regions, retirement for older people with intellectual disabilities,
in the absence of day service provision or employment opportunities, may be
even less clear cut. Where self-employment of the kind referred to in 5.7.4
(above) has been successfully achieved, retirement may be dictated by the
ability or motivation of the person to continuing working, or by cultural norms
related to age and active engagement in work. However, the development of
formal retirement policies consistent with those in place for the wider
population of older people should be encouraged. In many countries the concept
of "the pensioner" is alien, and progress towards pension rights can
only be achieved in step with the development of pension policy in the wider
population.
Recommendation 17
[Retirement (5.7.6)]
17a Where an older person with intellectual disabilities is leaving an existing
service, providers should ensure that age-appropriate, fulfilling alternatives
are made available in line with the person's own choices and preferences.
17b Where retirement from paid part-time or full-time employment is involved,
pre-retirement preparation conducted to the standards deemed appropriate for
the wider population of retirees should be offered to the person.
17c In developed regions where the rights of the older person to retirement
with a pension is available, older people with intellectual disabilities should
be included in these arrangements.
17d In developing regions any retirement policy that has been adopted should be
equally applicable to older people with intellectual disabilities.
5.8 Community inclusion
5.8.1 Much of the preceding is concerned with community inclusion in both
health and social settings. At the heart of an inclusive policy is
acknowledgement of the rights of the person to live in a dwelling appropriate
to her or his culture in the mainstream of that society. As noted in the UN International Plan of Action on Ageing:
"Housing for the elderly must be viewed
as more than a mere shelter. In addition to the physical, it has psychological and
social significance..." Thus in developed regions this may
typically involve an ordinary house or apartment in an urban setting, but in
some developing regions a life in a rural setting in a typical dwelling place.
Congregate care, i.e., the grouping of a large number of people outside the
expected range of people living together should be rejected, as should
dwellings isolated from the main community. Where isolated, segregated
facilities exist, policies leading to transition to community settings are called
for. In nations with undeveloped social and vocational training services and
where enriched opportunities for health and development are only provided in
segregated facilities, then policy should mandate the involvement of each
person within the greater community and the freedom to return to their
community once training or other supports have achieved their goals.
5.8.2 Support in the person's home should be related to the level of dependency
of the person and should be sensitive to, and accommodate to, age related
changes. Personal choice with respect to lifestyle should be central to the
home's ethos as this will determine in a significant way the person's quality
of life [53]. Indeed the UN International
Plan of Action on Ageing emphasises that ageing people should be
involved in housing policies and programmes for the elderly population. In
addition, suitable adaptations to enable the person to cope with functional
difficulties arising as they age should be available.
Recommendation 18
[Community inclusion (5.8)]
18a A person's home should be in a situation typical for members of the
community in which the person lives or has originated from.
18b Support in the home and community should
be sensitive to the person's level of dependency and should adjust to
age-related changes.
18c The ethos of domestic settings should be one of personal
choice for the resident(s).
18d Enriched residential settings, providing remedial or habilitative services,
should permit the person to remain attached to their community and in contact
with family and friends.
18e Old-age housing should only be used if it provides for a more enriched
quality of life than the person's normal habitat.
5.9 Intergenerational solidarity
5.9.1 A further aspect of inclusiveness that has received considerable
attention is that of intergenerational
solidarity. This is advocated as a principle that will ensure
social cohesion and reduce the isolation of ageing people, at the same time
facilitating their contribution to the lives of younger people. The strength
and nature of intergenerational contact varies from country to country, and may
be weakened by a variety of demographic and sociocultural trends. In developed
regions the suggestion that cross-generational contact has weakened in recent
decades has been challenged with respect to people without intellectual
disabilities [54]. However, we know less about trends in the population of
people with intellectual disabilities than we do in the wider field. Certainly
the removal of the institutional option for children with intellectual
disabilities and their continued life in the community has meant greater
contact with both parents, and increasingly with grandparents.
5.9.2 In addition, intergenerational solidarity between younger and older
people with intellectual disabilities must be encouraged where this is of
mutual benefit. The segregation of older people with intellectual disabilities
from younger peers can lead to double segregation by age and disability,
cutting people off from valued contact.
Recommendation 19
[Intergenerational solidarity (5.6)]
19a Policies aimed at encouraging intergenerational solidarity between younger
and older people in the wider population should extend to the full age spectrum
of individuals with intellectual disabilities.
19b In developing services responsive to the specific age-related needs of
older people with intellectual disabilities, care must be taken not to
segregate them from their younger peers.
6.0 Training and Education: Promoting
Social Inclusion Through Training
Both the general public, policy makers and front-line service providers require
information the better to understand older people with intellectual
disabilities. The UN International Plan of
Action on Ageing urges governments and international organisations
to educate the general public with respect to ageing and the ageing process.
Such education needs to encompass older people with intellectual disabilities
and to work against the dual stereotypes associated with both older people and
those with intellectual disabilities.
Staff working specifically with people with intellectual disabilities are
increasingly confronting this emerging population and require training to
integrate age-related information and practice into their existing practices.
With the progressive movement towards the integration of older people with
intellectual disabilities into generic elderly services, staff in those services
require training with respect to both intellectual disability and age-related issues in this population.
The experience of such integration has provided a rich base for undertaking
such training [55]; [56].
6.3 Health personnel in developing
regions
Health and social service personnel in
developing regions require training and support in identifying the specific
social support and healthcare needs of older people with intellectual
disabilities. In particular, it is important to alert staff to the specific
conditions that may affect older people with intellectual disabilities and
ensure appropriate treatment. Further, it is important to expose staff to sound
community support models that enrich older age and sustain productive ageing.
By highlighting people with intellectual disabilities, the pool of personnel
who are both knowledgeable and sympathetic towards those with intellectual
disabilities and their families may be increased.
Recommendation 20
[Education & Training (6)]
20a Public awareness of the nature and needs of older people with intellectual
disabilities must be raised through channels appropriate to the particular
society or culture.
20b Staff working with people with
intellectual disabilities require training to respond to age-relate needs.
20c Where a policy of integration with
generic elderly services is being undertake, part of the preparation should
involve staff training with respect to management of the process of integration
and the nature and needs of older people with intellectual disabilities.
7.0 Research and Evaluation: Scant
Information and the Need for Research
The UN International Plan of Action on
Ageing gives high priority to research related to the developmental and
humanitarian aspects of ageing. It urges research at the local, national,
regional and global levels with a special emphasis on cross-cultural studies
and interdisciplinary work. Among the research topics identified four are of
particular relevance to health and social policy:
The specific agendas for research with older people with intellectual
disabilities in each of these four areas may be derived from the previous
sections 4 to 6. In broad terms, research is called for into:
• Structural practices endemic to developing nations that can more successfully
promote longevity and healthy ageing of persons with intellectual disabilities.
• Practices that promote successful and productive ageing of persons with intellectual disabilties.
•Morbidity and mortality studies of older people with intellectual disabilities.
• The conditions under which the health and social needs of older people with intellectual disabilities can be met within the context of generic services, and the extent to which additional specialist provision is required.
• Evaluation of programmes aimed at maintaining functional abilities and extending competence in later life.
• Factors which lead to increased inclusiveness or exclusion in society with respect to both age-peers and intergenerational solidarity.
• The educational and training needs of those providing services to older people with intellectual disabilities to ensure that quality of life is maintained at the highest possible level.
• Cross-cultural studies that will ensure common aspects of good quality provision are identified as well as specific cultural influences of significance.
Cultural and economic factors that support
family caregiving.
Recommendation 21
[Research and evaluation (7)]
21a A detailed programme of research that takes into account the differing
scientific base and cultural contexts of developing and developed regions needs
to be formulated.
21b The research and informational needs of
developing countries should be defined and the technical and economic
requirements worked out in order to ensure that workers in developed countries
can assist in meeting these goals.
8.0 Future Action
The UN International Plan of Action on
Ageing describes in some detail the rôle of international and
regional co-operation with respect to implementation of the plan. This
encompasses direct assistance - both technical and financial - co-operative
research and the exchange of information and experience. A wide range of
agencies and mechanisms for such co-operation are indicated. It is hoped that
in raising the profile of older people with intellectual disabilities in this
and the accompanying WHO documents, consideration of the ways in which health
and social policies can be improved will benefit from the same support as that
to be offered to their peers without intellectual disabilities.
9.0 References
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