1

Healthy Ageing ~ Adults with

Intellectual Disability

Physical Health Issues

Core Authors

Heleen Evenhuis

C. Michael Henderson

Helen Beange

Nicholas Lennox

Brian Chicoine

A Joint Report of the Health and Aging Special Interest Research Groups of the

International Association for the Scientific Study of Intellectual Disabilities

January 2000

Submitted to the World Health Organization

Geneva, Switzerland

Acknowledgements

This report was initially developed at the 3rd International Roundtable on Health Issues in Manchester England. It was then circulated to both Health Issues and Aging SIRG working group members and selected others for commentary and amendments. The amended document became part of the working drafts circulated to delegates at the 10^th International Roundtable on Aging and Intellectual Disabilities in Geneva in 1999, and was discussed and amended further at this meeting. A set of summative broad goals was developed by the group and appears in this paper, which itself became part of the comprehensive WHO document on aging and intellectual disability (WHO, 2000). The primary goal of this paper is to organize information on physical health issues in older people with intellectual disabilities, and to present broad summative goals to direct further work in this area.

Partial support for the preparation of this report and the 1999 10^th 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

Evenhuis, H., Henderson, C.M., Beange, H., Lennox, N., & Chicoine, B. (2000). Healthy Aging - Adults with Intellectual Disabilities: Physical Health Issues. 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. Introduction: A lifespan, developmental perspective on healthy ageing and intellectual disability

The majority of people, including people with intellectual disability, live in the world's less developed countries. Because of the paucity of information regarding the health status and needs of persons with intellectual disabilities in less developed countries, it is hard to make universal statements regarding "healthy ageing" for people with an intellectual disability. The highest priorities for the majority of people with intellectual disabilities in all countries likely include basic health care, adequate nutrition and housing, education, civil rights, and political, social and economic stability. An international perspective on healthy ageing for persons with intellectual disabilities must acknowledge that the available literature largely reflects the experiences of clinicians and researchers in industrialized countries. Nelson and Crocker in 1978 called for affiliations between academic developmental physicians and physicians serving persons with intellectual disabilities in large institutions. A current high priority should be the development of alliances between policy makers, advocacy groups, physicians, educators and other professionals serving people with intellectual disabilities in less developed and industrialized countries (for an example, see Helm, Crocker & Rubin, 1999).

Recommendation 1

To develop a worldwide perspective on healthy ageing and intellectual disabilities through affiliations between interested parties in industrialized and developing countries that promote advocacy, trans-cultural and cost-effective clinical practices, research, and the exchange of information and expertise.

Although there is more information regarding the health status of people with intellectual disabilities in industrialized countries, it remains difficult to make general statements regarding strategies for healthy ageing. Large, industrialized countries- such as the USA- may exhibit profound regional differences in the prevalence rates for intellectual disabilities (MMWR, 1996). These differences reflect socioeconomic factors, differences in the definition of intellectual disabilities, and case-finding techniques (Schrojenstein Lantman-de Valk, 1997). People with intellectual disabilities constitute a heterogenous population. The "two group" model is an attempt to point out that people with mild cognitive impairment may have different etiologies and clinical issues than people with more severe cognitive impairment (who may be more likely to have associated syndromic conditions and other developmental disabilities) (Capute & Accardo, 1990). Furthermore, industrialized countries exhibit variations in the way that health care and other services are organized and delivered to people with (and without) an intellectual disability, and these pre-existing differences in service delivery have an impact on the relevance of specific strategies to promote healthy ageing.

Industrialized countries are witnessing an increase in the longevity of adults with an intellectual disability (Janicki et al, 1999). As more people with intellectual disabilities attain older age, it is important to note that excess functional impairment, morbidity, and even mortality can result from the consequences of early age-onset conditions, through their long-term progression or their interactions with older age-onset conditions. An example of the potential consequences of long-term progression is the high incidence of esophageal reflux in children with cerebral palsy and severe motoric compromise. If childhood-onset esophagitis is not identified and treated, it can lead to high rates of esophageal stricture or cancer in adulthood (Roberts et al, 1986; Bohmer et al 1996, 1997a,b; Cook, 1997). An example of the interaction of early-age onset and later-age onset conditions is, in persons with Down syndrome, the superimposition of adult-onset sensorineural hearing loss on childhood-acquired conductive hearing loss resulting from inadequately treated middle ear infections (Evenhuis, 1995a,b). The long-term consequences of therapeutic interventions also need to be considered- examples are movement disorders that may result from the prolonged use of neuroleptic medications (Haag, Ruther & Hippius, 1992; Wojcieszek, 1998), and bone mineralization disease that may occur secondary to the chronic use of certain anticonvulsants (Bikle, 1996; Phillips, 1998). Although more research needs to be done, it is apparent that healthy ageing for people with an intellectual disability requires a dynamic, lifespan clinical approach.

Recommendation 2

Health care providers caring for people with intellectual disabilities of all ages should adopt a lifespan approach that recognizes the progression or consequences of specific diseases and therapeutic interventions

2. Special issues in health care, healthy ageing, and intellectual disability

Research indicates that specific populations of people with intellectual disabilities have particular health risks. These populations may be defined by the presence of specific syndromes (hence termed syndrome-specific), or by the extent of the central nervous system compromise that has caused the intellectual disability (leading to associated developmental disabilities such as epilepsy, cerebral palsy, and some forms of visual impairment). In addition, populations may be defined by their placement within specific habilitative and residential programs and access to basic health care services. The resulting lifestyle and environmental issues and health promotion/disease prevention practices may directly cause, or interact with, hereditary factors, to protect against or confer specific health risks. Finally, the increased longevity of persons with intellectual disabilities in industrialized countries leads to the definition of populations by chronological older age- and a subsequent increased risk of acquiring adult and older-age associated conditions.

3. Syndrome-specific conditions

Persons with specific syndromes constitute a clinically and numerically important portion of the population with an intellectual disability. These syndromes can be caused by toxins, injuries, infections, and genetic/metabolic disorders which affect the central nervous system and, in some cases, other organ systems, during the developmental period. Moreover, these effects can become manifested, and clinically anticipated, at different stages of the lifespan. Down syndrome is a relatively common chromosomal disorder that, in addition to causing an intellectual disability, results in a relatively high risk for a number of conditions. In the neonatal period, Down syndrome can be associated with congenital defects of the heart, gastrointestinal tract, eyes, and other organs (Pueschel & Pueschel, 1992). Throughout the lifespan, persons with Down syndrome manifest higher risks for specific endocrinological (especially hypothyroidism), infectious, dermatologic, oral health, cardiac, musculoskeletal and other organ system disorders (Murdoch et al, 1977; Sare et al, 1978;Dinani & carpenter, 1990; Pueschel & Pueschel, 1992; Song, Freemantle & Selicowitz, 1993; Marino & Pueschel, 1996). In addition, they exhibit high rates of disorders of the special senses of vision (Pires da Cunha & Belmiro de Castro Moreira, 1996) and hearing (Strome & Strome, 1992; Roizen et al, 1993). Older adults with Down syndrome have an increased risk of the early development of age-related visual and hearing disorders (Buchanan, 1990; Evenhuis et al, 1992), epilepsy (McVicker, Shanks & McCleeland, 1994) and dementia (Wisniewski et al, 1985; Lai & Williams, 1989; Evenhuis, 1990; Burt et al, 1995; Zigman et al, 1995; Devenny et al, 1996). Adults with Down syndrome have decreased longevity compared to the general population of people with intellectual disabilities (Janicki et al., 1999). Fragile X syndrome is the most common inherited disorder associated with an intellectual disability. People with Fragile X syndrome exhibit relatively high rates of mitral valve prolapse (Loehr et al, 1986; Sreeram et al, 1989), musculoskeletal disorders (Davids, Hagerman & Eilert, 1990), early female menopause (Conway et al, 1998; Murray et al, 1998), epilepsy (Ribacoba et al, 1995) and visual impairments (Maino et al, 1991). Adults with Prader-Willi syndrome are prone to high rates of cardiovascular disease and diabetes arising from morbid obesity (Greenswag, 1987; Lamb & Johnson, 1987). Other syndromes may not be as common or easily identifiable as Down syndrome, Fragile X syndrome, or Prader-Willi syndrome; however, the same principle of knowledge of syndrome-specific issues may lead to the enhanced functional and health status of persons who have them. Examples are the deafness and eye abnormalities that occur in people with intrauterine toxoplasma, cytomegalovirus infections or foetal alcohol syndrome (Evenhuis & Nagtzaam, 1998).

Knowledge of the specific age-related health risk factors associated with Down syndrome and other syndromes can lead to enhanced prevention or early diagnosis of potentially impairing conditions and, possibly, increased life expectancy. Other relatively common syndromes associated with an intellectual disability that can have an impact on health status across the lifespan include Williams syndrome, Angelman syndrome, and tuberous sclerosis.

In addition, prenatal medical practices (such as the prevention of premature delivery) and the early identification of metabolic syndromes through neonatal screening (such as those that detect phenylketonuria or congenital hypothyroidism) have already led to treatments that can prevent or mitigate intellectual disabilities. Genetic counseling also helps to prevent inherited disorders that are associated with intellectual disabilities. In the future, the field of biomolecular genetics may provide further advances in the prevention or treatment of intellectual disabilities and other impairments that are caused by genetic/metabolic syndromes.

Recommendation 3

Children presenting with intellectual disabilities should have thorough diagnostic searches for etiologies and syndromes to optimize their current and future health care.

4. Associated developmental disabilities arising from central nervous system compromise

A significant number of persons with intellectual disabilities do not have specific syndromes, but exhibit associated developmental disabilities that reflect central nervous system compromise. These associated developmental disabilities may result in both primary and secondary diseases or impairments; they constitute a large component of mortality during childhood (Boyle, Decoufle & Holmgreen, 1994). An important example is cerebral palsy (Rosen & Dickinson, 1992). Children and adults with intellectual disabilities and cerebral palsy with severe motoric and functional impairments have decreased life expectancies compared to the general population (Evans, Evans & Alberman, 1990; Crichton, Mackinnon & White, 1995; Strauss & Shavelle, 1998; Strauss, Shavelle & Anderson, 1998). In addition to these motoric impairments that can adversely affect speech, mobility, and survival, children with intellectual disabilities and cerebral palsy present with high rates of strabismus and cerebral visual impairment (Schenk-Rootlieb et al, 1992; Erkkila, Lindberg & Kallio, 1996) and bladder dysfunction (Boone, 1998). Spasticity may require medical or neurosurgical treatment to alleviate pain, prevent deformities, and enhance function (Russman & Romness, 1998): orthopedic surgery can also be required (Renshaw et al, 1996). Children and adults with intellectual disabilities and cerebral palsy also exhibit a high risk for a number of secondary disorders. Upper gastrointestinal dysmotility, resulting in dysphagia, esophageal reflux and gastric emptying disorders, may lead to dental erosion, esophagitis, anemia, feeding, problems, aspiration and pneumonia (indeed, respiratory disease is the leading cause of death in people with cerebral palsy and severe motoric impairments) (Reilly & Skuse, 1992; Arvedson et al, 1994; Mirrett et al, 1994; Rogers et al, 1994; Bvhmer et al, 1997b, Shaw, Wetherill & Smith, 1998). People with intellectual disabilities and cerebral palsy are also prone to lower gastrointestinal dysmotility; this may cause constipation and fecal impaction (Cathels & Reddihough, 1993), and death due to bowel obstruction and intestinal perforation (Jancar & Speller, 1994). Bone demineralization with consequent fractures and decubitus ulcers may occur secondary to long-standing immobility and nutritional deficiencies (Brunner & Doderlein, 1996; Wagemans et al, 1998). Children and adults with cerebral palsy and severe or multiple impairing conditions require multidisciplinary care (Lowes & Gries, 1998). In later life, the chronic abnormalities of muscle tone may lead to chronic myofascial pain, hip and back deformities (including degenerative vertebral spine disease that may cause myelopathy); worsening bowel and bladder function is also seen (Harada et al, 1996; Mikawa Y, Watanabe R & Shikata J, 1997;Turk et al, 1997; Saito et al, 1998). The optimization of function and survival for people with cerebral palsy throughout life depends on the anticipation and identification, and prevention or treatment, of both primary and secondary disorders.

People with intellectual disabilities and epilepsy have other health risks. Children with intellectual disabilities and intractable epilepsy present with higher rates of cerebral palsy, visual impairment, and severe cognitive impairments (Steffenberg et al, 1995). In addition to the risk of status epilepticus (which is more common in children with co-existing neuro-impairments such as cerebral palsy), epilepsy is associated with injuries such as fractures (Desai, Ribbans & Taylor, 1996; Jancar & Jancar, 1998). People with intellectual disabilities and epilepsy have an increased mortality due to sudden death, aspiration episodes, and pneumonia (Forsgren et al, 1996). Unrecognized or inadequately treated seizures can impair cognitive function (Aldenkamp, 1997). Epilepsy syndromes associated with an intellectual disability (Dulac & N'Guyen, 1993: Ohtsuka, 1998) may prove difficult to treat and lead to a worsening of seizure control (Udani et al, 1993; Branford, 1998) and progressive cognitive impairment (Oka et al, 1997). However, some people with an intellectual disability and epilepsy exhibit a remission of the epilepsy in later life- the need for anticonvulsant medication needs to be regularly reappraised (Goulden et al, 1991; Brodtkorb, 1994). A coordinated and comprehensive approach to the management of epilepsy in people with intellectual disabilities may result in optimal management (Coulter, 1997)- health care service models do not always foster this type of approach.

Other examples of associated developmental disabilities that can result from central nervous system compromise, with obvious health status and functional repercussions, include autism, mental health issues, and some disorders of vision.

Recommendation 4

Persons presenting with an intellectual disability should have expert care to identify and treat associated developmental disabilities such as cerebral palsy, epilepsy, autism, and disorders of vision.

5. Conditions related to lifestyle and environment and health promotion/disease prevention practices

Industrialized countries have varying habilitative and residential philosophies and practices for persons with intellectual disabilities. In the North America, Australia, and in many European countries, many governments have implemented measures to close large publically -operated institutions and move residents into a variety of small community-based settings. Other countries have opted to modify the institutional model. In addition, countries exhibit wide variation in expenditures for supports and services for people with intellectual disabilities (for USA, see Braddock et al, 1998). It is important to note that, throughout the industrialized world, many people with intellectual disabilities have experienced or continue to experience placement in large institutions. Previous or current residence in large institutions place many people with intellectual disabilities at risk for past or present exposure to a number of infectious diseases, including tuberculosis (Lemaitre et al, 1996), hepatitis B (Hayashi et al, 1989; Stehr-Green et al, 1992; Cramp et al, 1996), and Helicobacter pylori (Bohmer et al, 1997).

Recommendation 5

People with intellectual disabilities with current or previous histories of life in large institutions should be evaluated for evidence of infectious diseases such as tuberculosis, hepatitis B, and Helicobacter pylori.

As people with intellectual disabilities, particularly those with milder cognitive impairments, are offered more lifestyle choices, there is the potential that some of these choices may result in a higher potential for risky behaviors and conditions that result from the lifestyle choices, or the interaction of lifestyle and hereditary factors. People with intellectual disabilities living in the community may engage in tobacco use (Burtner et al, 1995; Hymowitz et al, 1997; Tracey and Hoskin, 1997), other substance abuse (Westermeyer, Phaobtong & Neider, 1988; Moore & Posgrove, 1991; Christian & Poling, 1997), violent behavior (Pack, Wallander & Brown, 1998), and high-risk sexual activity (Cambridge, 1996). Behavioral factors of people with intellectual disabilities and their carers contribute to the high rates of peridontal disease noted in people with intellectual disabilities (Beange, McElduff & Baker, 1995; Lucchese & Checchi, 1998; Scott, Marsh & Stokes, 1998). A sedentary lifestyle, with consequent risks of deconditioning, obesity, (and diseases related to obesity including coronary artery disease, hypertension and diabetes) has been noted in people with intellectual disabilities in a variety of residential settings (Rimmer, Braddock & Marks, 1995; Beange, McElduff & Baker, 1995; Fujiura, Fitzsimmons, Marks & Chicoine, 1997). For people with intellectual disabilities, targeting lifestyle issues (Turner & Moss, 1996) may result in substantial gains in longevity and older-age quality of life and functional capability. Special programs that target healthy behaviors such as safe sex practices (Ager & Littler, 1998), avoidance of tobacco and other harmful substances (Tracy & Hosken, 1997), good oral hygeine (Nicolaci & Tesini, 1992), optimal exercise and dietary habits (Pitetti, Rimmer & Fernhall, 1993, Golden & Hatcher, 1997), and fire safety education (Janicki & Jacobson, 1985; MacEachron & Krauss, 1985), need continued development.

Recommendation 6

People with intellectual disabilities, and their carers, need to receive appropriate and ongoing education regarding healthy living practices in areas such as nutrition, exercise, oral hygeine, safety practices, and the avoidance of risky behaviors such as substance abuse and unprotected or multiple partner sexual activity.

Presently, however, there is no research to suggest that preventative health practices that are recommended for the general population, throughout the lifespan, should be withheld from people with intellectual disabilities. Standard immunization schedules and age-appropriate screening protocols for conditions such as dental disease, sensory impairments, various forms of cancer (with the possible exception of PAP smears in women who have no history of sexual activity), glaucoma, hyperlipidemia, and hypertension, should be offered to people with intellectual disabilities.

Recommendation 7

People with intellectual disabilities should receive the same array of lifespan preventative health practices as those offered to the general population.

6. Older age-related conditions

A number of recent studies have addressed the health status of middle-age and older adults with intellectual disabilities. These studies vary in methodology, and include longitudinal residence carers surveys (Anderson, 1993), interviews with subjects with intellectual disabilities and their carers (Cooper, 1998), carers interviews combined with medical chart reviews (Kapell et al, 1998), health status questionnaires of physicians providing care to subjects (Hand, 1994), questionnaires of direct care staff and physicians (Schrojenstein Lantman-de Valk et al, 1997), comprehensive medical assessment of subjects by a developmental physician (Beange, McElduff & Baker, 1995), and comprehensive and longitudinal assessment of subjects by a developmental physician (Evenhuis, 1995a,b; Evenhuis, 1997a). Only one of these studies attempted to identify subjects who were not previously registered or residing within the intellectual disabilities service system, resulting in a 15% segment of the older population with an intellectual disability (Hand, 1994). It is significant that the study that utilized comprehensive medical assessment by a developmental physician (of subjects who were being managed by community-based primary care physicians) uncovered a high number of previously undiagnosed conditions (Beange, McElduff & Baker, 1995). The cumulative research suggests that older adults with intellectual disabilities have rates of common adult and older age-related conditions that are comparable to or even higher than that of the general population (Minihan & Dean, 1990; Anderson, 1993; Hand, 1994; Beange, McElduff & Baker, 1995; Evenhuis, 1997: Schrojenstein Lantman-de Valk et al 1997; Kapell et al, 1998; Cooper, 1998). For many people with intellectual disabilities, the risk of a variety of chronic diseases that are acquired during adulthood, and that are associated with older-age morbidity or functional impairment, reflects the same interplay between hereditary predisposition and environment that is present in other older persons. However, as discussed above, factors related to syndromes, associated developmental disabilities, and lifestye and environmental issues, may account for higher rates, compared to the population without intellectual disabilities, for a number of conditions. Previously noted examples include obesity, dental disease, gastroesophageal reflux and esophagitis, constipation, and deaths due to bowel obstruction and intestinal perforation and gastrointestinal cancer. Other examples include non-atherosclerotic heart disease (Kapell et al, 1998; Cooper, 1998), mobility impairment (Kearny, Krishnan & Londhe, 1993; Evenhuis, 1997), thyroid disease (Kapell et al, 1998), osteoporosis (Center, Beange & McElduff, 1998) psychotropic drug polypharmacy (Tu, 1979; Gowdy, Zarfas & Phipps, 1987; Schrojenstein Lantman-de Valk et al, 1997), and deaths due to pneumonia (O'Brien, Tate & Zaharia, 1991; Janicki et al, 1999).

Recommendation 8

Health care providers serving older adults with intellectual disabilities should recognize that adult and older-age onset medical conditions are common in this population, and may require a high index of suspicion for clinical diagnosis.

Sensory impairments appear to constitute an area of special vulnerability for older adults with intellectual disabilities (Warberg M & Rattleff J, 1992;Wilson & Haire, 1992; Schrojenstein Lantman-de Valk et al, 1997). Although causes of visual and hearing loss may be present in rates similar to those in the general population (presbyacusis, cataract, presbyopia, macular degeneration, glaucoma, diabetic retinopathy), the resulting impairment may be more severe because of pre-existing, childhood onset visual and auditory pathology (Schrojenstein Lantman de-Valk et al, 1994; Evenhuis, 1995a,b).

Functional decline in older adults with intellectual disabilities warrants careful evaluation; a decline in functional status should not be peremptorily attributed to behavioral issues or dementia (Prasher & Chung, 1996; Burt et al, 1998). Comprehensive evaluations of older adults presenting with changes in state or functional decline and intellectual disabilities have yielded high rates of (often-concurrent) treatable conditions. Examples include affective disorders, sensory impairments, delirium, and undiagnosed medical conditions (Evenhuis, 1997b; Evenhuis, 1999; Thorpe, 1999; Chicoine, McGuire & Rubin, 1999; Henderson et al, in press). It is important to note that, because of communication difficulties, medical and mental health disorders may present atypically. Even people with an intellectual disability and dementia may have a relatively high burden of treatable medical conditions that may have an additive effect on disability (Cooper, 1999). The reversal of functional decline should be sought for people with intellectual disabilities of all ages, and not solely for functional or quality of life issues- severe functional impairment is related to decreased life expectancy in people with intellectual disabilities of all ages (Eyman et al, 1990).

Recommendation 9

Functional decline in older adults with intellectual disabilities warrants careful medical evaluation; undiagnosed mental health and medical conditions can have atypical presentations in people with limited language capabilities. Regular screening for visual and hearing impairments should be implemented for people with intellectual disabilities during the childhood and late-adulthood years.

7. Barriers to health care services in healthy ageing and intellectual disabilities

In theory, people with intellectual disabilities living in industrialized countries have equal access to essential health care services. As mentioned previously, countries (and regions within countries) vary in their models of health care delivery for people with intellectual disabilities. However, it is worth noting the general barriers that exist in providing care to people with intellectual disabilities (see Seltzer & Luchterhand, 1994), although the significance of these barriers may vary by region and type of health care system. It is important that health care providers and policy makers acknowledge that many people with intellectual disabilities have special needs that may require modification of standard health care practices and service models.

Communication difficulties arising from intellectual disabilities or associated motor impairments can serve as barriers to accurate medical evaluation. The medical history, in many cases, is derived from carers observations. In these cases, the health care provider is dependent on the verbal or written reports of carers that know the patient. People with intellectual disabilities can benefit from the training of carers in health-related issues- particularly basic assessment skills (Crocker & Yankauer, 1987). There is evidence that, in places where deinstitutionalization has led to placement of people with intellectual disabilities in the community, health care has deteriorated because carers were not familiar with the individuals (Linaker & Nottestadd, 1998). Carers need to be able to recognize signs of distress in persons with severe cognitive impairment (LaChapelle, Hadjistavvropoulos & Craig, in press); at the same time, individuals who have potential communication skills need to be educated in the effective communication of pain or distress (Bromley, Emerson & Caine, 1998). In addition, unresolved concerns about informed consent for or refusal of health services may, at times, prove to be a barrier for some people with intellectual disabilities (O'Donnell, 1994). Even in optimal circumstances- when the ill person with an intellectual disability is accompanied by knowledgeable carers- informant-based medical history taking takes time. Concepts of health care productivity need to be altered when considering the population of people with intellectual disabilities and significant communication difficulties.

Physical barriers may constitute a problem for many persons with intellectual disabilities and other disabling conditions. Older women with cerebral palsy, with and without an intellectual disability, have reported difficulties obtaining dental and gynecologic care because of accessibility problems (Turk et al, 1997). Health care facilities should be easily accessible to persons with an intellectual disability who may have a variety of physical and sensory impairments.

Behavioral issues constitute another potential barrier. Persons with intellectual disabilities may have difficulty cooperating with examinations and procedures. Health care providers need to be educated regarding the confusion, fear, and frustration that many people with intellectual disabilities may experience when they access health care services. Again, more time may be necessary to reassure someone with an intellectual disability. Habilitative programs or health care providers should address the issue of health care- not just in terms of healthy living, but also by increasing understanding and confidence in using health services (McRae, 1997; Lunsky, 1999). Protocols for safe conscious sedation may be helpful for some people with an intellectual disability. In other cases, general anesthesia may be necessary to enable safe and thorough health maintenance exams and procedures.

Behavioral issues can also play an important role in successful acute rehabilitation after disease, insults or injury. Also, teaching persons with an intellectual disability how to use assistive or prosthetic devices, such as canes, walkers, wheelchairs, braces, dentures, eyeglasses and hearing aids, may require more time and special techniques.

For many people with intellectual disabilities, the most important barrier to effective medical care is case complexity. People with intellectual disabilities may access a variety of medical subspecialists, dentists, audiologists, mental health providers, and other health care professionals. Case management is crucial for the optimal utilization of health care services for people with intellectual disabilities who have complex needs requiring multidisciplinary expertise (Walsh, Kastner & Criscione, 1997).

It is worth noting that, in some countries or states, health care rationing or reimbursement schedules may constitute barriers to basic health services. In addition, administrators and policy makers need to understand that, in some cases, clinically indicated and relatively expensive techniques and expertise may prove cost-effective in the long-term.

Recommendation 10

Health care providers and policy makers need to eliminate attitudinal, architectural and health care reimbursement barriers that interfere with the provision of high quality health services for people with intellectual disabilities.

Recommendation 11

Carers need training in assessing and communicating the basic health status of the adults with intellectual disabilities.

Recommendation 12

Health care case management needs to be provided to adults with intellectual disabilities who have complex needs.

8. The role of the physician in healthy ageing and intellectual disabilities: Primary care and developmental physicians

Physicians can play a pivotal role in the functional attainments and quality of life of many persons with intellectual disabilities. However, successful habilitation and community placement may depend on the prevention or identification of a variety of health issues. Accordingly, the physician is one member of a health care team. Other important team members include nurses, audiologists, nutritionists, dentists, mental health specialists, and rehabilitation specialists. An interdisciplinary approach may be required for a number of health issues, including visual and hearing impairment (Evenhuis, 1995a,b), swallowing disorders (Kennedy et al, 1997), urinary incontinence (Bradley, Ferris & Barr, 1995), dental care (Editorial, 1998), and geriatric assessment (Carlsen et al, 1994).

Many adults with intellectual disabilities do not need special medical attention. It is important for primary care physicians to recognize that, in general, adults and older persons with an intellectual disability have the same needs for disease prevention, diagnosis, and treatment as other members of the population. For routine care, health status can improve by ensuring regular encounters with primary care physicians (Martin, Roy & Wells, 1997), and through "opportunistic" health assessment at the time of encounters (Jones & Kerr, 1997). However, some persons with intellectual disabilities and specific health risks (because of syndrome-specific issues, associated developmental disabilities, and complex neuropsychiatric conditions) may require regularly scheduled, easily administered screening protocols (Cohen, 1997; Piachaud, Rohde & Pasupathy, 1998).

It is noted that, in many countries, the relatively frequent contact between adults and older persons with an intellectual disability and primary care physicians based in the community is a new and largely unplanned phenomenon arising from the deinstitutionalization and increased longevity of persons with intellectual disabilities. Evidence suggests that community-based primary care physicians in some regions may not provide access or have the expertise or professional back-up to care for people with intellectual disabilities who have severe or complex impairments (Strauss & Kastner, 1996; O'Brien & Zahari, 1998; Strauss et al, 1998). Primary care physicians need to be able to get access to information through a variety of means: formal consultations, telephone consultation systems, internet communication, clinical guidelines, training seminars, and written materials such as texts (see Lennox, 1999). In complex cases, established referral paths to developmental physicians and other specialists with intellectual disabilities expertise can be crucial.

Developmental physicians, trained with a lifespan approach to developmental disabilities, can provide valuable expertise to primary care physicians and other health care providers serving people with intellectual disabilities. The influence of this specialty can range from preparing written guidelines and training programs for primary care physicians and other health care providers, to providing formal and informal consultation services for complex patients. In addition, they can provide leadership in the area of clinical research.

Health care providers need evidence-based practice standards (Lennox & Kerr, 1997), similar to the international guidelines for the screening and diagnosis of visual and hearing impairments in persons with intellectual disabilities, recently developed by the IASSID Special Interest Research Group on Health Issues (Evenhuis & Nagtzaam, 1998). Comparable standards need to be developed for other specific interventions, conditions, diseases, and syndromes. Most important is a need for leadership to more fully introduce people with an intellectual disability of all ages- who comprise a substantial portion of the human population- into basic and postgraduate medical education.

Lastly, there is a need for medical specialists with interest and expertise in intellectual disabilities. Psychiatrists, neurologists, physiatrists, otolaryngologists, ophthalmologists and other specialists with intellectual disabilities knowledge can be enormously helpful to colleagues in their own disciplines, as well as to primary care specialists and developmental physicians.

Recommendation 13

An interdisciplinary approach is required for a variety of clinical issues involving people with intellectual disabilities.

Recommendation 14

Health care systems need to provide educational and clinical practice supports for primary care physicians caring for people with intellectual disabilities.

Recommendation 15

The development of the discipline of lifespan developmental medicine is necessary to provide medical education, practice standards, clinical expertise, research, and professional leadership regarding the special needs of people with intellectual disabilities of all ages.

9. Conclusion: Areas for future research

The development of research to enable healthy ageing in persons with intellectual disabilities represents a new and complex area. Previously mentioned is the need to provide evidence-based practice standards to enhance health status, longevity, functional capability, and quality of life. Other high priority research areas include:

The acquisition of additional clinical and epidemiological knowledge regarding specific syndromes, with linkages to basic science research in biomolecular genetics and metabolism.

The development of adapted diagnostic and therapeutic methods for people who have difficulties with cooperation or communication.

The development and evaluation of interdisciplinary interventions for complicated conditions (e.g. sensory impairment, dysphagia, communication, and functional decline).

The development of clinimetric measures in a number of areas -functional capability, quality of life, mental health, pain assessment, and clinical diagnosis- that are sensitive and specific, easy to administer, and applicable to persons with a wide range of mental and physical capabilities.

The evaluation of clinical guidelines- including referral protocols- to support community-based primary care physicians, within specific health care systems, to care for people with intellectual disabilities.

The evaluation of the applicability of a new discipline of lifespan developmental medicine to lead in interdisciplinary care, health care education, service delivery, and research for people with intellectual disabilities.

The development of the knowledge base regarding the health status and needs of people with intellectual disabilities living in less developed countries.

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Healthy Aging - Adults with Intellectual Disabilities

Biobehavioral Issues

Senior Authors

L. Thorpe (Canada), P. Davidson (USA), M. Janicki (USA)

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

Genhve, Switzerland

Acknowledgements

This report was developed primarily with input from: N. Bouras (UK), K. Drummond (UK), S. Moss (UK), K. Bishop (USA), V. Prasher (UK), D. Burt (UK), N. Schupf (USA), G. Weber (Austria), S. Vicari (Italy), A. Dalton (USA), J. Jacobson (USA), K. Wang (Taiwan), P. Ladrigan (USA), C. M. Henderson (USA), H. San Nicolas (Guam), K. Hauser (USA) and secondarily from delegates present at the 10^th International Roundtable on Aging and Intellectual Disabilities, World Health Organization, Geneva, Switzerland, April 20-23, 1999. This document was developed initially in draft form in 1998 by L.Thorpe and P. Davidson after the 9^th International Roundtable on Aging and Intellectual Disabilities in Cambridge, England. It was then circulated to Aging SIRG working group members and selected others for commentary and amendments. The amended document became part of the working drafts circulated to delegates at the 10^th International Roundtable on Aging and Intellectual Disabilities in Geneva in 1999, and was discussed and amended further at this meeting. A set of summative broad goals was developed by the group and appears in this paper, which itself became part of the comprehensive WHO document on aging and intellectual disability (WHO, 2000). The primary goal of this paper is to organize information on biobehavioral issues in older people with intellectual disabilities, and to present broad summative goals to direct further work in this area. These are included within the text and at the end of this document.

Suggested Citation

Thorpe, L., Davidson, P., & Janicki, M.P. (2000). Healthy Aging - Adults with Intellectual

Disabilities: Biobehavioral Issues. Geneva, Switzerland: World Health Organization.

Report Series

#3 Thorpe, L., Davidson, P., Janicki, M.P., & Working Group. (2000). Healthy Aging - Adults with Intellectual Disabilities: Biobehavioral Issues. 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. Background

In nations with established market economies, most adults with intellectual disabilities who live past their third decade are likely to survive into old age, and experience the normal aging process. As in the general elderly population, in spite of gradual declines in a variety of domains, they can still have active and varied lifestyles with an excellent quality of life. Age associated, functional declines must be separated from specific losses due to physical illness, dementia, depression, sensory loss, and social and environmental factors. The interaction between biological, psychological and social aspects of aging remains the most important factor in the functional outcome of a person with intellectual disabilities.

Very little empirical data exists about normal psychological functioning developmental processes throughout the life-span in people with intellectual disabilities. Seltzer (1993) presents the best model, linking behavioral, cognitive and affective outcomes to the negotiation of developmental tasks of aging in the context of a variety of interacting individual, social and environmental antecedent conditions, such as intellectual ability, social competence, personality, physical condition, environment and learning history. Every person has his/her own individual set of antecedent conditions, and has different opportunities to successfully negotiate the developmental tasks of aging.

Goal 1 To improve the understanding of normal psychological functioning throughout the life-span of people with intellectual disabilities

People with intellectual disabilities in general have restricted social roles and more limited social networks, and thus fewer opportunities to experience and learn from some of the tasks commonly experienced by those without intellectual disabilities, particularly those who have spent considerable time in more restricted institutional environments. Mid to older life changes such as bereavement may thus have a greater impact, and with a greater likelihood of adverse functional outcome. The acceptance of mortality for example, which is an integral part of aging in people without intellectual, is often hindered by a lack of exposure to rituals such as funerals in an attempt to shield the person from unpleasant events.

Furthermore, the magnitude of individual adverse reactions to stressors may be accelerated because of cognitive impairment (pre-existing and/or degenerative, as in the dementias), poor self-esteem and poor perception of self-competence due to repeated adverse life experiences over the life-span, and poor social support.

Goal 2 To improve knowledge and awareness of age-related stressors and their impact on older people with intellectual disabilities

2. Psychiatric and behavioral disorders

For the purpose of this paper we have defined mental disorders as disorders that can be classified into diagnostic systems such as the ICD10. Biological, psychological and social factors disorders may all contribute to their expression. Behavioral disorders on the other hand are patterns of maladaptive behaviors (usually as perceived by an informant) that interfere with typical life functioning. They may be related to another mental disorder in the individual, biological vulnerability, longstanding learned behaviors, or a mismatch between environmental expectations and resources with the individual's capabilities and wishes: for example, a behavioral problem such as wandering in a demented person may be maladaptive if the individual lives in an open facility close to a busy highway, but contribute to the maintenance of physical abilities in a well-designed dementia unit due to regular exercise.

Major mental disorders, although less common than behavioral disorders, are still fairly frequent in elderly people with intellectual disabilities. Day and Jancar (1994) reviewed this topic and found an overall prevalence of about 10%. Some disorders such as dementia increase with age, which is particularly noticeable in those with Down Syndrome (DS). As in the general elderly population, psychotic disorders also increase with age, but are less frequent than mood and anxiety disorders. Interestingly, due to "differential mortality" or the tendency for healthier people to live longer, older cohorts may actually be healthier in many domains than younger cohorts (Janicki, Dalton, Davidson & Henderson, in press), and show greater functional abilities than the young until the oldest ages.

Most studies find that, compared to the general population, behavioral disorders are more common in people with intellectual disabilities at all stages of the life span. There seems to be an association with age mostly in those individuals that have dementing disorders (Moss & Patel, 1995).

3. Etiology

Social, cultural, environmental and developmental factors and stressors have significant impact on the expression of both psychiatric and behavioral disorders in older people with intellectual disabilities (Day & Jancar, 1994). Stressors may be multiple, and include separation from or death of a parent, loneliness and sudden relocation. Unfortunately, little is known about quantifying these influences on age-related changes in persons with intellectual disabilities. However, the general consensus of clinicians in the filed is that all perceived symptoms need to be evaluated in a broad context, and not necessarily attributed to one individualized factor but explored as part of a complex interaction of the individual with the environment.

Goal 3 To understand and appreciate the social, cultural environmental and developmental context of behaviors and their functions in older people with intellectual disabilities

Biological contributions to mental and behavioral disorders are also important, and often increase with age. Examples include sensory loss and dementia in DS, feeding abnormalities in those with cerebral palsy due to reflux, and a variety of other behavioral changes related to chronic medical illnesses (Lantman de Valk et al., 1998; Davidson et al., 1995). Of course, genetic risk factors for the major mental illnesses such as schizophrenia or bipolar disorders continue to be present in old age as in the general population, and specific behavioral clusters associated with developmental syndromes may persist from younger years into old age.

4. Detection and assessment of mental disorders

Major mental disorders in older people with intellectual disabilities may have considerable negative impact on cognitive, affective and general functioning as well as on the quality of life of the person. It is important therefore to detect and optimally treat these, especially treatable disorders such as depression. However, diagnosis is already more difficult in older people in general due to higher rates of comorbidity, polypharmacy and a reduced tendency to voice psychological compared to physical complaints, and this is magnified in the intellectual disabilities group, particularly in the most disabled segment. The presence of seizure disorders and their treatments additionally complicates the assessment of mental functioning, although this may be more pronounced in younger age groups that tend to be more multiply disabled. Other challenges in the intellectual disabilities group include communication barriers, baseline behavioral abnormalities (secondary to brain abnormalities, learned maladaptive behaviors, and environmental deprivation) overlapping with core mental illness symptomatology, and more florid stress related decompensation.

Health care providers that are not familiar with intellectual disabilities have difficulty making accurate mental health assessments, yet carers that are most able to report changes in the usual functioning generally do not have the necessary knowledge of mental disorders. Unfortunately, in most parts of the world there are few specialists with both intellectual disabilities and psychogeriatric expertise that would be able to bridge that gap. Cultural perspectives on normative behavior may further color how seemingly "deviant" behavior, which may be attributable to intellectual disabilities, may be perceived. Tests and assessment instruments are often not available in local languages.

In many cases the combination of the above individual, environmental and care system difficulties leads to a lack of differentiation between mental illness and intellectual disability, with both over and under diagnosis of mental illness, each of which can lead to adverse consequences. Although florid and disruptive behaviors are likely to come to the attention of mental health services, milder symptoms such as early depression and cognitive impairment may be missed, whereas there may be an overdiagnosis of disorders like schizophrenia due to the diagnosticians' unfamiliarity with the presentation of older people with intellectual disabilities and stress decompensation, for example.

Ideally, assessment of biobehavioral issues involves interviewing the person as well as their carers, and exploring the environment as a potential contributor to the symptoms. Interactions between the older person's cognitive, affective and general functional abilities with the environment and care system must be explored. Frequencies of symptoms and possible correlation to other environmental events can be analyzed by charting identified behaviors and symptoms. A thorough medical evaluation, including visual and auditory assessments should precede a final mental health diagnosis.

Screening instruments exist for various mental disorders in intellectual disabilities, but must be developmentally and culturally appropriate. General instruments include the Psychopathology Instrument for Mentally Retarded Adults (PIMRA; Matson), and the Reiss screen (Reiss, 1987). The Mini-PAS-ADD (Prosser et al., 1997) and the PASS-ADD Checklist (Moss et al., 1998) have been developed specifically to improve case recognition in this population. These instruments are not sufficiently specific or sensitive to make a diagnosis, but are useful to indicate the need to obtain further mental health assessment.

Instruments designed for specific disorders, such as the Beck Depression Inventory (Beck, Ward, Mendelson, 1961) and the Zung Self-Rating Depression Scale (Zung, 1965) have been adapted and simplified for use in intellectual disabilities by Kazdin and associates (Kazdin, Matson, Senatore, 1983). These, as well as others such as the Hamilton Rating Scale for Depression (Hamilton, 1960) have been used successfully to assess depression in people with intellectual disabilities and mental disorders.

The diagnosis of dementia in intellectual disabilities has been discussed at length, as people with DS are at very high risk of developing this. The instruments used in the general population are difficult to use due to floor effects, and furthermore, baseline abilities in intellectual disabilities are so varied that only repeated measures over time are likely to result in an accurate assessment of dementia. It is suggested that behavioral measures should be repeated at set intervals after age 40 in DS, and after age 50 in others with intellectual disabilities to detect functional changes, which can then be further evaluated clinically. The IASSID/AAMR practice guidelines give more detail on assessment and care management in dementia (Janicki et al, 1996).

Auxiliary diagnostic tools such as computerized tomography (CT), positron emission tomography (PET), single photon emission computerized tomography (SPECT) and magnetic resonance imaging (MRI) may be helpful diagnostically, and might eventually become more routinely used, at least in developed nations.

Goal 4 To improve the detection and holistic assessment of mental disorders such as depression, anxiety and dementia in older people with intellectual disabilities.

Goal 5 To increase mental health knowledge and skills in professionals, carers and families of older people with intellectual disabilities.

5. Interventions

Interventions in general must embody the best information from two separate bodies of evidence; the mental health-intellectual disability (dual-diagnosis) literature, and the psychogeriatric literature. Data from the psychogeriatric literature is important as it considers physical and mental changes developing longitudinally with the aging process. Data from the mental health-intellectual disability literature is important because it identifies issues specific to or more prevalent in people with intellectual disabilities, and focuses on interventions that have particular use in this area. Both fields are now starting to address the role of autonomy and choice-making by adults in the development and treatment of mental health symptoms.

Ideally, interventions for behavioral and mental disorders should first consider prevention: primary, i.e., strategies implemented to prevent all occurrence of the problem; secondary, i.e., early treatment of a problem to prevent its full expression; and tertiary, i.e., strategies to minimize functional impairment due to the problem once firmly established. (It should be remembered that the "problem" referred to is not necessarily only directly related to the older person with an intellectual disability, but is really the interaction of multiple variables as described earlier, culminating in the perception of their being a "problem" by some person, usually in the care system or the community.)

Primary prevention strategies for behavioral and mental disorders are not comprehensively understood, but some issues are known to be associated with a reduced prevalence. Decreased use of large congregate care such as institutions reduces the frequency of a variety of maladaptive behaviors, infectious diseases as well as polypharmacy, which is responsible for many other secondary adverse effects. Increased work on communication skills and identification of sensory deficits often reduces the development of maladaptive behaviors such as aggression, and increases adaptive behavior. Increased availability of rewarding activities, and increased provision for autonomous choice making in various domains is also associated with positive behavioral outcomes, although systematic studies are difficult to perform. Humane, non-abusive living environments sensitive to the needs of their older residents with intellectual disabilities likely also foster reduced development of maladaptive behaviors. Finally, staff that are trained to understand and deal with the emotional needs and stresses of their residents will better provide an emotionally supportive environment that will minimize the occurrence of challenging behaviors or the perception of the person as "a problem."

Primary prevention of the major mental disorders such as schizophrenia is less likely, as there is a large biological and genetic component to most of these. However, the recurrence of individual episodes of illness can be minimized by reducing stressors if possible, providing sensitive support for those that do occur, and ensuring appropriate medication use.

Goal 6 To develop living environments that are responsive to the mental health needs of older people with intellectual disabilities.

Secondary prevention of mental and behavioral disorders involves appropriate early detection, assessment and treatment of the designated problem, by careful involvement of biological, psychological and social interventions. It is crucial to involve the person themselves, staff, family and community in the holistic treatment planning process, and provide sufficient training to allow carers to continue therapeutic interventions after any professional involvement has ended. Modifications may need to be made to the home and work environment and/or staff approaches to the person. Needs that may be expressed in a maladaptive behavioral way must be met more productively, and alternate expressions taught. Supportive therapy, individual or group behavioral therapy, family therapy and social skills training might all be of help, as might be the involvement of spiritual elders or healers, depending on the cultural milieu. Unfortunately, there are too few clinicians, even in the developed world, who have the skills to undertake psychotherapy for individuals with intellectual disabilities. There are fewer still who are aware of the psychological issues related to functional decline, grief secondary to loss of family or friends, and other life changes that take place as people age.

Pharmacotherapy is most often used in the most severe, potentially harmful behavioral syndromes or in the more biologically driven mental disorders, and must be tailored to age related vulnerability. Medication pharmacokinetics, including drug volume of distribution, protein-binding, hepatic metabolism and renal clearance need to be considered in formulating psychotropic regimens. Treatment response time often lengthens with old age, and strange environments such as inpatient settings may result in significant stress that makes the assessment of change difficult. In addition, some older adults with intellectual disabilities may be receiving medications for chronic medical conditions, and the potential for drug interactions should be carefully considered. Thorough knowledge of the biomedical state of each older adult, as well as close coordination with primary health care providers, is necessary for the safe prescription of psychotropic medications. Adverse effects such as sedation, increased confusion, constipation, postural instability, falls, incontinence, weight gain, sex steroid dysregulation and other endocrinologic or metabolic effects, impairments of epilepsy management, and movement disorders must be minimized.

There must always be the awareness of risk and benefit calculations that require detailed knowledge of the specific adverse effects and drug interactions of each particular agent. The potential for acute and long term adverse effects should be determined and discussed with adults and carers at the time of initial prescription and during regularly scheduled psychotropic medication reviews.

Tertiary prevention, or the treatment of established disorders with the goal of minimizing further functional disabilities, becomes more important with the increasing age of the person. Although older people, as do young people, have the right to safe, effective treatment, at times the aging process has brought about so many changes that a realistic goal becomes modified from cure to maximization of overall psychosocial outcomes. The maintenance of mobility, the preservation of meaningful social interaction, and the maximizing of cognitive and affective functioning becomes paramount. Possible hazards and unpleasant side effects of treatments must balance the reasonable likelihood of positive response, resulting in difficult end-of-life decision making for the person and significant caring others.

Goal 7 To promote mental health and minimize negative outcome of mental health problems in older people with intellectual disabilities

6. Service provision

Formal services that specifically provide mental health care to older people with intellectual disabilities are minimally to nonexistent throughout the world. Service provision needs to be adapted to best deal with the local cultural and health care environment, and this is very variable. In some areas basic life necessities, let alone mental health delivery to the general population are not yet available, and the disabled population is often last to benefit when this does come about. The primary need may be basic supports in these areas, whereas in other more privileged areas sophisticated education about the assessment and treatment of behavioral and mental disorders to care providers may be a reasonable goal. An overriding goal, however, in the development of any of these diverse services is to include the acceptance of basic principles. These include maintenance of respect for the individual and their families, involvement of the person's own needs and wishes in any treatment plan, and finally development of treatment plans that are minimally restrictive, culturally sensitive, and that foster the growth and autonomy of the person. All treatment programs should be broadly based with biological, psychological and social components.

Goal 8 To increase mental health services and supports in their own communities for older people with intellectual disabilities.

Goal 9 To collaborate with older people with intellectual disabilities and their support system in developing culturally sensitive, humane, and least restrictive mental health interventions with an integrated bio-psycho-social orientation.

7. Quality of life issues

During the past decade there has been increasing concern regarding the outcomes of treatment and involvement in intellectual disability services in the assessment of the social value of services. A similar shift has also occurred in other sectors, such as child and adult social services, public health, youth corrective activities, senior services and mental health. This type of reorientation in most sectors represents a substantial change in how the benefits of human services and other public or humane enterprises are gauged. The intended end result is tailoring of the services and supports to each individual in ways that encourage and promote the participation of that particular person with an intellectual disability in valued social roles. This is achieved by focusing the benchmarks for effective services upon outcomes with evident lifestyle impacts.

These desirable lifestyle impacts are usually embodied by the expression"quality of life," but are informed by philosophical implications of human and disability rights developments in many nations. From this standpoint, the value of professional services delivered in a high quality manner, the effects of those services, and the efforts of social groups, service groups, and advocates are ascertained with regard to impacts on lifestyle and related personal and social opportunity.

Valued outcomes that serve as a basis for demonstrating the social value of intellectual disability services, but which may vary in their particulars within different cultures, may include: (1) Increased practical, leisure, or life enhancing skills, such as those involved in making choices between alternative activities, and those which allow a person to access community opportunities (e.g., work or retirement activities), including enduring benefits; (2) Improved or maintained dietary and general health status that prevents physical health factors from becoming an untoward hindrance on typical activity; (3) A varied rhythm of life involving preferred activities and recognition that challenge and productivity must continue throughout old age; (4) Participation on a regular and full basis in the general life of their community and with friends and acquaintances of one's preference; and (5) An increased and well-established social network of acquaintances, friends and valued social amenities.

With increasing age, gerontological research has validated the expected belief that engagement and minimization of life stressors have health preventive value and can lead to prolonged life and stable health status. Life factors that provide for sound nutrition, access to valued activities, safe and pleasant domicile, and intellectual challenge can minimize stress, organic or environmentally derived psychopathology and reactive behaviors. A quality old age among persons with intellectual disabilities will be based on the same factors that provides for a quality old age among other persons.

Goal 10 To improve the quality of life in older people with intellectual disabilities and mental health problems

8. Research

Most research in the area of mental or behavioral disorders or problems has had treatment as its focus. Much less has been done about the causes and risk factors of such disorders and their prevention. Almost all of the data available comes from populations of persons with intellectual disabilities from nations with established market economies, where research funding has been most available and there has been a critical mass of workers who specialized in this field. For instance, prevalence data for psychiatric and behavioral disorders may differ between nations with established market economies and developing nations and treatment outcomes may vary where the cultural ethos may inhibit referrals and special resources or services are limited. Improved health status and prevention in developing nations, the principal goal of WHO, must depend on identification of special issues pertaining to developing nations and application of techniques that permit information to be gathered free of cultural or other restraints.

Well-controlled research in mental and behavioral disorders as they occur in persons with intellectual disabilities is limited. Most of the work over the past 30 years addresses treatment issues; fewer focused on diagnosis or etiologic factors, or prevention. Only a small number address basic mechanisms. These disappointing data probably reflect several things, including a well-known lack of a research focus or funding. As a consequence, there are limited numbers of scientists in the field and a lack of programmatic efforts in research centers addressing any relevant issue related to intellectual disabilities. Without specific attention from health planners and ministerial level policy makers, as well as a critical mass of investigators working on a common problem in programmatic ways, little converging data can emerge and, quite likely, few if any major discoveries will appear quickly.

Promising lines of inquiry relate to both treatment strategies and biological determination and regulation of behavior. Rigorous methodologies are available to undertake controlled or randomized clinical trials for behavioral and pharmacologic interventions. Recent advances in molecular genetics and neuropharmacology provide new opportunities for linking severe behavioral and psychiatric disorders to brain neurochemistry. The field must move toward a research focus that includes a better balance of studies of basic mechanisms, translational and clinical outcome studies.

Goal 11 To develop a research agenda that will provide evidence concerning each goal for all nations.

9. Conclusions

Aging issues in older persons with intellectual disabilities still remain to be appropriately identified, assessed and resolved. The complex interaction between biological, psychological and social aspects is arguably the most important area of need at the start of the next millennium. Psychiatric and behavioral disorder prevalent among adults with intellectual disabilities may be both transnational and culture bound. The prevalent literature is based in the nations with established market economies where the longevity of adults with intellectual disability is more pronounced and has become a normative phenomenon. To what extent this same longevity and prevalence of psychiatric and behavioral disorders is shared among nations, other than those with established market economies is unknown.

The analyses in this paper rely heavily on research results from nations with established market economies. For developing countries, sufficient medical systems or well-trained physicians may be limited. Also, health care systems in developing countries often do not sharply distinguish between people with mental illness and people with intellectual disabilities. Thus, data from nations with established market economies may not be easily translated to social policy in other countries. From a policy perspective, developing nations may have to choose between allocating limited resources to such practices as diagnosis and treatment of psychiatric and behavioral disorders in persons with intellectual disabilities and improving the nutritional status of the general population, perhaps preventing some types of intellectual or developmental disabilities. Establishing reliable diagnostic practices that might permit effectively treatment and tracking people with mental illness and people with intellectual disabilities may require resources beyond the indigenous capabilities of some developing nations.

Consistent with the Standard Rules of the United Nations, if recognition is to be given to the value of persons with intellectual disabilities and to the provision of resources to improve their general health status so that longevity becomes a norm, nations will also have to devote resources to aiding in treatment of psychiatric and behavioral disorders that impede or distort normal aging. However, first nations will have internalize beliefs that value human life and the productivity of persons with intellectual disabilities. With valued status, resources will aid in promoting sound practices in ameliorating psycho-geriatric issues prevalent in the population. To this end, at minimum, there should be a core of professionals and clinicians with specialized training in intellectual disabilities and all mental health, psychiatric, or psycho-geriatric professionals or clinicians should also receive training in intellectual disabilities. Such training must stress the differentiation of intellectual disabilities from mental illnesses. Further, specialized resource centers need to be available to which clinicians, families and other carers can seek information and referral. Two main aspects to any new service focus on this subject: information and the appropriate training of practitioners.

10. Future goals developed at the 10^th International Roundtable on Aging and Intellectual Disabilities

1 To improve the understanding of normal psychological functioning throughout the life-span of people with intellectual disabilities

2 To improve knowledge and awareness of age-related stressors and their impact on older people with intellectual disabilities

3 To understand and appreciate the social, cultural environmental and developmental context of behaviors and their functions in older people with intellectual disabilities

4 To improve the detection and holistic assessment of mental disorders such as depression, anxiety and dementia in older people with intellectual disabilities.

5 To increase mental health knowledge and skills in professionals, carers and families of older people with intellectual disabilities.

6 To develop living environments that are responsive to the mental health needs of older people with intellectual disabilities.

7 To promote mental health and minimize negative outcome of mental health problems in older people with intellectual disabilities

8 To increase mental health services and supports in their own communities for older people with intellectual disabilities.

9 To collaborate with older people with intellectual disabilities and their support system in developing culturally sensitive, humane, and minimally restrictive mental health interventions with an integrated bio-psycho-social orientation.

10 To improve the quality of life in older people with intellectual disabilities and mental health problems

11 To develop a research agenda that will provide evidence concerning each goal for all nations.

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Janicki, M.P., Heller, T., Seltzer, G. & Hogg, J. (1996). Practice guidelines for the clinical assessment and care management of Alzheimer's disease and other dementias among adults with intellectual disability. Journal of Intellectual Disability Research, 40, 374-382.

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Schapiro, M.B. (1993). Neuroimaging in adults with Down syndrome. In Berg, J.M., Karlinsky, H., and Holland, A.J. (Eds). Alzheimer disease, Down syndrome and their relationship. Oxford: Oxford University Press.

Seltzer, G.B.(1993) Psychological adjustment in midlife for persons with mental retardation. In Sutton E. (ed.), Older adults with developmental disabilities (pp.157-184) Baltimore, USA: Paul H. Brookes Publishing Co.

Healthy Aging - Adults with

Intellectual Disabilities

Women's Health and Related Issues

Walsh, P.N., Heller, T., Schupf, N., & van Schrojenstein Lantman-de Valk, H.

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 Tamar Heller (USA), Nicole Schupf (USA), Henny van Schrojenstein Lantman - de Valk (N L), and Patricia Noonan Walsh (IRL) working in collaboration with the following colleagues: Kathie Bishop (USA), Nancy Breitenbach (FR), Allison Brown (USA), Janis Chadsey (USA), Orla Cummins (IRL), Carol Gill (USA), Loretto Lambe (UK), Barbara LeRoy (USA), Yona Lunsky (CA), Michelle McCarthy (UK), Dawna Mughal (USA), Jenny Overeynder (USA), Pat Reid (NZ), Heidi San Nicholas (GUAM), Janene Suttie (AUS), and Kuo-yu Wang (TAIWAN). The authors gratefully thank Robert Cummins, Deakin University, Australia, for his careful reading of an earlier version of this report and his very helpful comments; Marianne Vink for information communicated personally; and all those contributors who held focus group meetings in a variety of nations (including Australia, Canada, the United Kingdom, South Africa, and the United States) and who shared the results of these focus group meetings with us. We are especially grateful to the participants in the Geneva Roundtable in April 1999 for their advice and support

This report was developed as a draft and circulated to both Health Issues and Aging SIRG working group members and selected others for commentary and amendments. The amended document became part of the working drafts circulated to delegates at the 10^th International Roundtable on Aging and Intellectual Disabilities in Geneva in 1999, and was discussed and amended further at this meeting. A set of summative broad goals was developed by the group and appears in this paper, which itself became part of the comprehensive WHO document on aging and intellectual disability (WHO, 2000). The primary goal of this paper is to organize information on women's health issues in older women with intellectual disabilities, and to present broad summative goals to direct further work in this area.

Suggested Citation

Walsh, P.N., Heller, T., Schupf, N., & van Schrojenstein Lantman-de Valk, H. (2000). Healthy Aging - Adults with Intellectual Disabilities: Women's Health Issues. Geneva, Switzerland: World Health Organization.

Report Series

#3 Thorpe, L., Davidson, P., Janicki, M.P., & Working Group. (2000). Healthy Aging - Adults with Intellectual Disabilities: Biobehavioral Issues. 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

1.1 This report is concerned with issues which are important for the health of women with intellectual and developmental disabilities as they grow older and age. The specific focus on women's health is in no manner meant to be dismissive or designed to minimize concerns related to men's health issues. However, it is the position of the SIRG on aging that women's health issues have not received appropriate and sufficient attention, that women as they age are subject to sex-related conditions and changes, and that in many instances the interests and needs of aging women and women with disabilities are overlooked or neglected. Thus, this report is designed to explore factors related to well-being and quality of life for women, to examine and define sex-linked differences in their life experiences and opportunities and to define their distinctive vulnerabilities -including research on health status and access to health care.

2.0 Women's Health - a Global Perspective

2.1 The human rights of women and girl children are an integral part of universal human rights, according to the UN Vienna Declaration. Ensuring their full and equal participation in all aspects of life in society, without discrimination of any kind, is a priority objective for the international community. The United Nations Commission on the Status of Women promotes the well-being and education of the girl child as a priority for global action in its policy documents (1998). Further, the UN Standard Rules identify the availability of suitable medical and health care as an essential perquisite if people with disabilities are to enjoy equal opportunities in the societies where they live (UN 1994).

2.2 Regional policies have adopted human rights as the basis for all actions related to the lives of persons with disabilities. Social policy within the European Union of 15 countries has replaced traditional care models of disability with a rights-based model. Human rights are expressed as equal opportunities for all citizens, particularly those with disabilities, to take part fully in all aspects of everyday life in their own societies (CEC 1996). A respect for human diversity should thus inform all aspects of social planning.

2.3. The WHO - Global Strategy on the promotion of women's health falls within this rights-based framework: The right of all women to the best attainable standard of health - as well as their right of access to adequate health services - has been a primary consideration of the World Health Organization (OFCHR 1997:10)

2.4 There have been dramatic increases in life expectancy during the 2Oth century, due chiefly to tremendous advances in medicine, public health, science and technology. However, the quality of human life is as important as its length - perhaps even more important. Today, individuals are concerned about their health expectancy - that is, the years they can expect to live in good health (WHO 1997b). Inequalities exist, based on sex, region and social status. The poorest, least educated people live shorter lives with greater ill-health. Globally, while life expectancy increases, disability-free life expectancy seem to be stabilizing.

2..5 Priority areas for international action in health should be: a comprehensive chronic disease control package incorporating prevention, diagnosis; treatment and rehabilitation and improved training of health professionals; fuller application of existing cost-effective methods of disease detection and management, a global campaign to encourage healthy lifestyles; research into new drugs and vaccines and the genetic determinants of chronic diseases; and alleviation of pain, reduction of suffering and provision of palliative care for those who cannot be cured (WHO 1997b:136).

3.0 Lifespan Perspective: Aging and Health

Recently, more attention has been given to the personal and social development of girls and women with developmental disabilities throughout the lifespan. This approach attempts to understand their experiences and their engagement with the tasks considered appropriate in their family and culture at each transitional stage - infancy, childhood, adolescence, early - middle - and late adulthood, and old age. For example, young women in many industrialized societies typically complete formal schooling and/or vocational training, find employment, achieve full citizenship and build personal friendships and intimate relationships. Some may establish homes and start childbearing. Women in late adulthood who have been employed may retire from the active workforce, attend more to personal interests - depending on their income and talents - and perhaps devote themselves to grandchildren or other family concerns. And as they age, women and men increasingly value good health and the independence and mobility it brings.

3.1 Populations are ageing. The number of people aged 65 years and above account for 7% of the world's population: two-thirds (65%) of those aged 80 and above are female. Global strategies must take gender differences into account. A major challenge will be to develop innovative ways of tackling the special health and welfare problems of elderly women (WHO 1997b:11). >From the perspective of the WHO, healthy aging is a global priority. The need to focus on promoting health and minimizing dependency of all older people is a principle of action common both to more developed countries - where 12.6% of the population is elderly - and to developing countries - where only 4.6% is elderly (WHO 1995:2).

3.2 Gender and health. The differential impact of gender on health is not static; rather it reveals itself as the individual grows and develops throughout his or her lifespan. Many risks to health are age-related: Men die earlier, while women experience greater burdens of morbidity and disability. Women constitute the majority of both the carers and the older users in the health sector. Supporting the female carers is a key health policy challenge (WHO 1995:6.1.5).

3.3 UN emphasis. The special situation of women is highlighted in current programs for older persons within development planning. 1999 has been named the International Year of Older Persons with the theme, "Towards a Society for All Ages." A society for all ages recognizes the rights and responsibilities of all age groups and makes it possible for older persons to live healthy, productive, economically secure lives (UN 1997: SG/5M16339 - OBVII 1).

3.4 Gender is recognized as a determinant of health. A gender approach to health includes an analysis of how different social roles, decision-making power and access to resources affect health status and access to health care. The special needs of women and current inequalities in delivery of health care are apparent. The WHO has targeted increasing its efforts towards: (1) advocacy for women's health and gender-sensitive approaches to health care delivery and development of practical tools to achieve this; promotion of women's health and prevention of ill-health; (2) making health systems more responsive to women's needs; (3) policies for improving gender equality; and (4) ensuring the participation of women in the design, implementation and monitoring of health policies and programs, in WHO and within countries (WHO 1997b:83).

3.5 Health status. Data gathered about the health of women living in developed nations indicate that while these women live on average up to about 80 years, many die prematurely before the age of 65 due to accidents or diseases which could largely be avoided by healthier living or early detection. Special health issues are important to women at different stages of their lives. Eating disorders have serious consequences for younger women, adult women confront health problems related to HIV and AIDS, and among elderly women, the rising incidence of osteoporosis has become a chief concern for women (CEC 1997:8). In contrast, the health status of adult women in the developing nations is often compromised, resulting in shorter life expectancies, greater rates of illness or disability-related conditions. poorer nutrition, and a greater incidence of problems more related to earlier life stages.

3.6 Policy focus on women's health. Policy-makers may embed the distinctive health needs of women throughout the lifespan in national health strategies. For example, in Ireland, the Department of Health formed a plan for women's health in consultation with many individual women and women's groups throughout the country. The plan, which is in keeping with WHO targets for the health of women, recognizes that some groups of women - those with disabilities, for example -face particular challenges to maintaining good health. Lack of information, lack of access to services and special difficulties related to advice about sexual and reproductive health were identified. The Irish Government document recommends direct consultation with women who have disabilities themselves in order to develop appropriate services (Government of Ireland 1997:63)

4.0 Health, Ageing and Intellectual Disabilities : Cross-Cultural Contexts

4.1 Increased longevity and improved services of all kinds have led to an unprecedented growth in the population of persons with intellectual disabilities. It is estimated that as many as sixty million persons in the world may have some level of intellectual disability (WHO 1997b). Older people with intellectual disability have significant physical health needs (Cooper 1998; van Schrojenstein Lantman-de Valk 1998, inter alia). The health of individual men and women with disabilities as they grow older will reflect the social and economic circumstances shaping their daily experiences. Their fortunes may be especially at risk relative to those of their peers or family members. "It is in situations of dire poverty that household members are subjected to neglect, and people with disabilities are particularly vulnerable (Whyte and lngstad 1998: 43).

4.2 Access to health care. Informants from developing, rural or remote regions report that greater access to health care, information, proper treatment protocols, and the like, would all greatly enhance longevity. Many individuals with more severe disabilities do not survive the early childhood years. There may be no surgeons, or no facilities for neonatal care, and poor health outcomes for the elderly. In the Pacific region, for example, diseases such as Hanson's disease (leprosy), measles, and dengue fever may be lethal. Given generally poor access to health resources, the population of people with intellectual and developmental disabilities is more likely to be stricken and affected by threats from disease. Cultural differences also influence health care across the lifespan. Local healers and natural medicines may be a mainstay for a community. Further, cultures vary in their understanding of, and attitudes toward, elders, as well as toward women. Such attitudes may influence the availability and accessibility of health care for older women.

4.3 Socioeconomic contexts. Thus, healthy ageing does not arise and maintain itself in a vacuum. Social, political and economic environments interact with the daily lives and experiences of individuals in a given society. Efforts to promote their health and well being reflect this complex interaction. The quality of daily life experienced by individuals both reflects and contributes to the quality of the society in which they live. Providing political environments which foster healthy social relationships, trust, economic security, sustainable development and other factors related to advancing the health and well-being of citizens has been identified as a priority for governments. The quality of social relationships in a society has been documented as part of health outcomes: healthier communities with greater social cohesion produce healthier citizens (Lomas 1997). These and other factors make up a country's social capital, an essential factor if states are to achieve the priorities for effective health promotion which are listed in the Jakarta Declaration, such as increased investment in health development particularly for needy groups (Cox 1997:3).

5.0 Health and Aging: Women's Health and Related Issues

5.1 In preparing this report, two key questions were posed in order to inform those charged with implementing global, regional and national health strategies including the needs of women with intellectual disabilities. These questions were (1) What is the current knowledge base about the health of women with intellectual disabilities across the lifespan, especially among older women? (2) What are the practices most effective in promoting good health and satisfaction with services among women with intellectual disabilities?

Three kinds of evidence were used to compile this report. First, information about global and regional trends, demographic patterns and socio-economic indicators were drawn from a range of policy and research documents published by bodies such as the World Health Organization and other groups (Sections 2,3 and 4). Second, research literature in scientific publications was reviewed and three summaries were prepared: these appear in Sections 6.1, 6.2 and 6.3. Third, colleagues in many countries contributed background information about local conditions in their parts of the globe. Qualitative data were yielded by focus groups and other consultative meetings of women with intellectual and developmental disabilities, their families, advocates and professional workers in many countries. The themes which emerged about their experiences of health care and promotion appear in Section 7.

The final section of this report, Section 8, includes recommenda-dations for research, policy and practice.

6.0 Summary Reviews Of Literature

Research summaries related to women's health and aging are organized across four topic areas and appear in the following three sections. The editors' initials appear in parentheses. The first section (6.1) reviews evidence about cancer and sexual health (H. van S L- de V) and reproductive health (NS). The second (6.2) focuses on promoting health among ageing women with intellectual disabilities (TH), and the third section (6.3) addresses the social, economic and cultural contexts of health (PNW).

6.1 Physical Health And Ageing

6.1.1 Menstruation

6.1.1.1 Among women with intellectual disabilities, the average age at onset of menarche is similar to that of women in the general population. Most appear to have regular menstrual cycles. Recent studies of gonadal function in women with Down syndrome have found distributions of age at menarche and frequencies of women with regular menses that are much closer to those found in the general population than had been presumed from earlier studies (mostly of institutionalized women). Between 65% and 80% of women with Down syndrome have regular menstrual cycles, while 15 to 20% have never menstruated.

6.1.1.2 Methodological problems in studies of hormonal status during menstrual cycles in women with Down syndrome and other intellectual disabilities include small sample sizes, sampling of only a few cycles, and lack of control for the stage of menstrual cycle at which the blood sample was drawn. Nonetheless, international studies have generally supported the conclusion that most cycles show evidence of ovulation and formation of a corpus luteum, suggesting that gonadal endocrine function is within normal ranges in the majority of women with intellectual disability.

6.1.1.3 Many women with intellectual disability are treated with psychotropic medication and/or anti-epileptic drugs (AEDs). Psychotropic medications can interfere with a number of hormonal and metabolic functions. A common finding is hyperprolactinemia in association with neuroleptic drug use. Prolonged elevations in prolactin can lead to declines in follicular (FSH) and luteinizing hormone (LH) release, leading to declines in ovarian function. Reduced gonadal function may lead, in turn, to menstrual disturbances, including amenorrhea or infertility and reduced estrogen release which may increase risk of age-related disorders associated with reduced estrogen levels. Seizures and AEDs may also influence memory and cognition through changes in neuroendocrine function. Elevated levels of sex-hormone binding globulin, FSH and LH have been described and long-term AED therapy has been associated with primary gonadal dysfunction and increased risk of polycystic ovarian syndrome.

6.1.2 Sexual Health

6.1.2.1 Women with intellectual disability have the same sexual needs and rights and responsibilities as do other women. However, care personnel and other carers are not always adequately educated on this issue and may seek to limit opportunities for sexual activity. Older parents may tend to ignore the sexual needs of their children. In many societies, general attitudes toward persons with disabilities and toward women specifically may further serve to deny or trivialize sexual health concerns. Unfortunately, such attitudes may also carry over to women of older age and thus deny access to health services related to gynaecological concerns and functions and may lead to a dearth of health professionals who are willing or trained to address reproductive health issues.

6.1.2.2 People who are sexually active are prone to sexually transmitted disease (STDs). Education on symptoms of STDs and early treatment is necessary to avoid further transmission and development of late-stage complications of the infection. Some STDs are characterized by chronic pelvic pain, vaginal discharge and abdominal pain, but other STDs may be present without clinical manifestations (e.g., 65% of Clamydia infections). However, even when they are symptom-free, infected women may transmit their infections and, untreated, may develop severe complications. Infection with the HIV virus and development of AIDS is of special concern. Currently, it appears that HIV in persons with intellectual disability is mainly spread by men who have sex with men. However, because many of these men also have sex with women, heterosexual spread of HIV may be increasing, following the pattern seen in the general population.

6.1.2.3 Women with intellectual disabilities need to be educated about safe sexual practices. Line drawings or pictures, or other effective teaching materials, may be helpful in presenting safe sex precautions and in initiating discussion about sexual activity in persons with limited conceptual or verbal capacities. Women with intellectual disabilities may have poor skills in negotiating safe sex even if they are motivated to practice safe sex to avoid sexually transmitted diseases. Women with intellectual disabilities are subjected to the same power discrepancies as women in the general, and requests for safe sexual practices (e.g., condom use) may be difficult to impose. Furthermore, many women with intellectual disability have low self esteem, making negotiations surrounding sexual activity more difficult. Practical skills may also be a problem. Many persons with intellectual disabilities have motor problems which limit their ability to use condoms effectively, as well as poor understanding of their proper use. Sexual education needs to include practice in condom diaphragm/pill use with instruction adapted to the capacity of this population. It is crucial to recognize profound cultural differences in sensitivity to the content of such education for women and in recruiting and preparing care staff and instructors.

6.1.3 Vulnerability and Protection

6.1.3.1 In addition, both men and women with intellectual disability are more often victims of sexual abuse than are persons in the general population. Most offenders are known to their victims and may include care personnel and other carers, family members or fellow residents who take advantage of the person's inability to defend themselves or their lack of knowledge about their sexual rights. Because of poor communication skills and lack of knowledge about their rights, people with intellectual disabilities make also experience difficulty in telling carers about the abuse. Such abuse may continue for years before any signs are given. Education about sexual abuse should take place in settings provided by carers who are familiar and respectful of the person with an intellectual disability and who can encourage full and frank discussion about abuse (see: McCarthy and Thompson 1998).

6.1.4 Fertility and Contraception

6.1.4.1 In a number of countries, women with intellectual and developmental disabilities are as likely to marry and to bear children as are their peers. While little research has addressed fertility in women with intellectual disability, it is reasonable to assume that most adults are fertile unless they have a disorder that affects genital organs or brain regions responsible for hormones that regulate ovarian function. For example, only a few births to men and women with Down syndrome have been documented. In addition, in some countries a majority of women with intellectual disabilities use some form of contraception. Oral contraception is preferred, with low dose combinations of progestins and estrogens. Depot progesterones are also widely used as contraceptives. Their advantage stems from the fact that they need to be administered only four times a year. However, irregular vaginal bleeding ("spotting") and effects on cholesterol metabolism that might increase risk for coronary heart disease need to be considered.

6.1.5 Therapeutic Amenorrhea

6.1.5.1 Therapeutic amenorrhea may be used in women with intellectual disability who are unable to manage menstrual hygiene effectively or in women who show self-injurious behavior related to menstruation. The most common form of therapeutic amenorrhea is suppression of menstrual cycles with lynestrenol. In one report, a Finnish gynaecologist noted that 66% of his patients with intellectual disabilities had been prescribed lynestrenol at some time in their life. Alternatively, endometrial ablation, abrasion of the inner layer of the uterus, may be used to suppress menstruation and establish therapeutic amenorrhea. More radical procedures, such as hysterectomy (removal of the uterus) may also be used to prevent pregnancy. In the past, sterilization was widely used to prevent pregnancy, often without the consent of the person with an intellectual disability. In more developed countries, guidelines for sterilization now require extensive documentation of the medical rationale for the treatment, including documentation of informed consent procedures.

6.1.5.2 Endometrial ablation, hysterectomy and sterilization, while effective, are irreversible, raising legal and ethical concerns about these procedures. Determination of the perceived problems surrounding management of menstruation and/or fertility should be medically documented and should be undertaken as much for the information of the women herself as for the convenience of the carer.

6.1.6 Menopause

6.1.6.1 Very little is known about menopause in women with intellectual disability. Limited studies have reported on the median age at menopause and no study has systematically tracked changes in hormones and ovarian function with age in a large group of women with intellectual disabilities. Thus, there is very little information on how decreases in hormones after menopause may affect health and cognitive ability. Studies of menopause have found that the median age at menopause was 3 to 5 years earlier in women with intellectual disability compared with women in the general population. Women with Down syndrome and women with Fragile X appear to have especially early onset of menopause.

6.1.7 Age-Related Health Problems

6.1.7.1 Osteoporosis. Osteoporosis is considered to be characteristic of disorders that increase after menopause and are related to estrogen loss. In addition, long-term use of anti-convulsants is a risk factor for osteoporosis. In women with osteoporosis₁bone mass slowly declines over the years to produce thinner and more porous bones, which are weaker than normal bones. Post-menopausal bone loss is associated with wrist fractures in about 15% of women and with spine fractures in 20-40%. The most serious complication of osteopenia is hip fracture, which occurs in 15% of older fair-skinned women and causes high rates of morbidity and mortality. Clinical trials of estrogen and bone density have consistently shown that estrogen prevents or delays bone loss when taken within 5 years of surgical or natural menopause. Osteoporosis and an increased risk for fractures was also found in younger women with intellectual disabilities who had either hypogonadism, a small body size, or Down syndrome.

6.1.7.2 Breast Cancer. Risks for breast cancer and cervical cancer also increase with age. Whether or not women with intellectual disabilities have the same risk for these cancers as women in the general population is still being debated, and further research is needed to address this question. Women who have never been pregnant - including many women with intellectual disabilities - may be at higher risk and thus screening is especially important (M. Vink: personal communication). But screening for these cancers may present special problems. Current guidelines for screening for breast cancer recommend regular mammography in women over 50 years of age (every I to 2 years). Problems for effective participation in screening programs among women with intellectual disability include difficulties in understanding and co-operating with the procedures, problems of transportation to screening sites and, often, musculoskeletal problems which make accommodation to the mammography machines an uncomfortable and fearful experience. Most physicians experienced with mammography in women with intellectual disability emphasize that health and nursing personnel need to take sufficient time for women to familiarize themselves with the machines and with the procedures to participate effectively. However, economic pressures under extant proprietary or national health care systems in certain nations may limit the willingness of physicians and their staff to provide the necessary time and training to achieve successful levels of co-operation. In the Netherlands, all women within a municipal administration system are invited by postal code and birth date for breast cancer screening, but illiteracy and poor literacy may limit participation. ln other countries, the screening program does not include women who are not able to pay for the procedures. In general, women with intellectual disabilities receive fewer opportunities for screening for breast cancer than do women in the general population. This may be particularly insidious in nations that have no systematic screening procedures as women with intellectual disabilities may be at particular risk since most may have limited access to available health practitioners, and if access is not available, such screenings may never be carried out

6.1.7.3 Cervical cancer. Guidelines for screening for cervical cancer recommend screening by cervical smear testing once every 2 to 5 years for women between the ages of 30 and 60 years. Sexual activity is associated with increased risk for cervical cancer, so that women with intellectual disability who are have no experience of sexual activity may possibly be excluded from screening programs. Poor receptive and expressive language, discomfort and fear may create difficulties in achieving co-operation in pelvic examination and obtaining cervical smears in some women with intellectual disabilities. In some nations, lack of available female physicians may further limit such examinations as societal mores proscribe such contact by male physicians. Further, given sensitivities to genital contact, and lack of familiarities of such procedures by women with disabilities under these circumstances, no such screenings may ever be undertaken in certain nations, further increasing risk.

6.1.7.4 Heart disease. The frequency of heart disease is lower in menstruating women than in men of the same age, but after menopause the frequency of heart disease is the same in women as in men. Many studies have shown that the risk of a coronary event is reduced by about 50% in postmenopausal women using oral estrogen compared with women not taking oral estrogens. It is thought that this decrease in coronary heart disease is related to the ability of estrogen to prevent coronary artery disease and prevent the build-up of some types of cholesterol in the bloodstream. Other age-related conditions that appear to occur with increased frequency in women with intellectual disability are thyroid problems, sensory impairment, heart rhythm disorders and musculoskeletal disorders.

6.1.7.5 Alzheimer's disease. Ovarian hormones such as estrogen are also important to maintain brain function in regions of the brain affected by Alzheimer's disease. Some scientists have suggested that the loss of estrogen after menopause may increase risk for the cognitive declines associated with Alzheimer's disease, although this is still controversial. Several studies have found that women who took estrogen after menopause had a decreased risk and later age at onset of Alzheimer's disease. Epidemiological studies on the sex-linked prevalence of Alzheimer's disease are equivocal, with some showing a higher rate among women with Down syndrome, and others showing no discernible patterns between men and women with intellectual disabilities of other etiologies.

6.1.7.6 Menopause. Women with intellectual disabilities may have an earlier age of menopause which may place them at increased risk for these estrogen-related disorders. In addition, the frequency of estrogen or hormone replacement therapy is much lower in women with intellectual disabilities than in women in the general population, so that they do not receive the same degree of preventive and therapeutic intervention as women in the general population.

6.1.7.7 Psychiatric Illnesses. Older women in general are reported to often experience more instances of depression and other life stressor-related reactive behaviors indicative of psychiatric difficulties. As reported by the WHO/IASSID's report on Biobehavioural Issues, this is often the case among older women with intellectual disabilities as well. This paper should be accessed for a more detailed explanation of this problem area.

6.2 Health Promotion

6.2.1 Health care paradigms are expanding from an historical emphasis on treatment of disease conditions to a more expansive focus on health promotion through healthy lifestyles, preventive health care, and positive environmental conditions. There is a growing body of research associating successful aging and disease prevention with health behaviors and environmental conditions. Among women with disabilities health promoting activities and settings can lead to enhanced useful functioning, prevention of secondary disabling conditions, and an increased quality of life. Researchers have only recently begun to explore the conditions promoting optimum health among older persons with intellectual disabilities, and even less among women with intellectual disabilities. In a national survey conducted in the United States, the most common chronic health problems noted for older adults with intellectual disabilities were high blood pressure, osteoarthritis, and heart disease. Women with intellectual disabilities who survive into old age are most likely to die of heart disease. Older women with intellectual disabilities, particularly women who have a lifelong history of anti-epileptic medicine may be more susceptible to osteoporosis than the general population.

6.2.2 Proper nutrition, exercise, and access to preventive health care can increase health and longevity. Yet women with intellectual disabilities receive less preventive health care than women generally and have highly sedentary lifestyles. Among adults with intellectual disabilities obesity and cholesterol levels are higher than for the general population. This is particularly true for women and for adults living in independently. Among adults with Down syndrome, a United States study reported that nearly half of the women and nearly one third of the men had morbid obesity. A study of women with intellectual disabilities living in residential facilities found that women were more likely than men to have malnutrition or obesity. Data from the United States tells us that older adults with intellectual disabilities living at home exercise less frequently than other older adults. In addition to the negative effects on health, the high levels of obesity and the low levels of physical activity reported among adults with intellectual disabilities can create barriers to successful employment, participation in leisure activities, and performance of daily living activities. Other health behaviors, in addition to diet and exercise, which have been shown to affect health among the general elderly population, such as smoking_,alcohol use, medication management, and stress management, have been rarely studied among women with intellectual disabilities.

6.2.3 Access to preventive health care varies widely by country. Data from the United States indicates very low levels of health screenings for older women with intellectual disabilities, including mammograms, breast examinations, and pap smears, particularly for women living in the community. Reasons for lack of preventive health care include lack of private insurance, attitudinal barriers of health care professionals, insufficient health education, and fear of examinations, and communication difficulties experienced by women with intellectual disabilities.

6.2.4 To promote healthy behaviors and preventive health care among older women with intellectual disabilities, health education is needed for the women with intellectual disabilities and for health professionals. Women with intellectual disabilities may lack basic knowledge about their bodies and about health and aging. They may be unaware of how their current lifestyles and behaviors can have an effect on their overall health and well-being. Also, health professional often do not communicate effective strategies for health promotion to women with intellectual disabilities or their carers.

6.3 The Context Of Healthy Ageing

6.3.1 The socio-economic context - for example, level of income, employment status and family circumstances - and also the cultural environment in which individuals develop and age influence health outcomes. Differences in life expectancy, income and access to health care are conspicuous when outcomes for women in developing countries are compared to those in the less developed countries - where the majority of all persons with intellectual and developmental disabilities live. While these topics have been explored among the general population to some extent, little empirical research is available concerning women with intellectual disabilities.

6.3.2 Very few women with intellectual disabilities marry, even in the more developed countries, and few will have the opportunity to experience gender roles which are typical in their cultural settings. Few bear children. As a consequence, in later life they lack key sources of informal support and care. The importance of the role played by brothers and sisters in the development and well-being of adults with intellectual disabilities across the lifespan has been recognized. Yet the extent and function of such relationships have only recently been studied empirically. Women with intellectual disabilities are also less likely to become primary family carers, although increasingly those who become middle-aged may be called on to care for an elderly or frail parent who has heretofore provided care for them. Some questions remain: for example, can respite care - an important element in formal care - help to maintain or promote health and well-being among women with intellectual disability, either directly or through its impact on family members?

6.3.4 While it is recognized that friendships and social networks contribute to the health and well-being of women in the general population, the specific elements of this contribution in the lives of women with intellectual disability is less well understood. Adults with intellectual disability tend to name significantly fewer individuals and to have more dense social networks than other adults. Those who receive formal services describe social networks filled largely by members of staff. In addition, their networks include more family members than friends - although men with intellectual disabilities are likely to include fewer friends. Adults also tend to name family friends as their own. While empirical evidence suggests that adopting multiple social roles may help to protect women from threats to their well-being, women with intellectual disability are much less likely to have such varied life opportunities.

6.3.5 The favorable impact of employment on the well-being of employees in terms of income, personal satisfaction, esteem, friendships and health has been well-documented in the more developed countries. Less is known about the impact of employment status on the health and well-being of adults with intellectual disabilities, although this has been recognized as an important area for continued research.

6.3.6. The day-to-day experiences of women in the workplace, as well as the expectations of supervisors, employers and co-workers have been explored in a few recent studies. It has been reported in Australian and North American studies that women with intellectual disabilities in community employment are more lonely at work than men. Initial findings of a longitudinal study being carried out in France (GRADIOM) suggests that staff members and medical personnel in sheltered workshops appraise women with intellectual and developmental disabilities as being old some years in advance of the men of similar age with whom they work. Whether this perception is due to cultural factors or to differential working conditions or access to health care has not yet been determined. In general, the uptake of employment, patterns of occupation, and benefits of employment among women with intellectual disabilities across the lifespan have not been investigated systematically and across cultures.

6.3.7 It is not known, for example, whether in developing countries women with intellectual disability share in the "feminization of the work force" trend which has been apparent in more industrialized countries, notably among women with disabilities. Some findings suggest that patterns of employment and employment outcomes differ for women with intellectual disability. Less is known about the employment experiences of women in developing countries, where a priority is to acquire skills so as to contribute to family - and thus, their own - livelihood.

6.3.8. While employment may bring benefits in terms of income, self-esteem and community participation, it may not be without hazard. Because of the generally unskilled nature of the occupations assigned to women with disabilities who may be employed, they are more likely to be exposed to occupational hazards and toxic substances. Many occupational diseases can be prevented through improvements to the work environment and reduction of harmful exposure to toxins and other substances. For example, silicosis is common in many dust-generating activities such as ceramics production, prompting a joint lL-WHO initiative planned to eliminate this disease. The long-term impact of these occupational hazards on the health of women with intellectual or other developmental disabilities who are in the labor force has yet to be investigated.

6.3.9 Although, it is likely that women with intellectual disabilities who have achieved employment in the regular labor force subsequently take a more active part in society, outcomes for them in terms of greater social inclusion - a core social policy within the European Community, for example - have yet to be determined. Accordingly, there is little evidence to indicate how their health and well-being may be promoted through wider participation in society.

7.0 Qualitative Information

This section presents a summary of key issues identified during a range of focus group data collections, as well as at a variety of meetings or consultations carried out with women with intellectual disabilities, their family members, advocates and friends. While the procedures varied slightly, some commonalities emerged when data from all the groups were explored. The issues which arose in several different sites have been blended here, partly to protect the individuals who offered their assistance so readily. The findings appear under five headings selected because they reflect the emergent concerns of the women informants: ageing and disability (7.1), treatment (7.2), training for professional workers (7.3), health promotion (7.4), and personal and practical supports (7.5).

7.1 Ageing and Disability

7.1.1. Determining ones age is often difficult for persons with limited experiences or with intellectual disabilities. For example, only half of the participants in one group could tell their current age. Thus, self-defining aging over the life course may be a difficult skill. Life course changes, such as acknowledgment of the basic physical changes that take place over time, from baby to girl to teenager to woman, such as the body growing bigger as a person gets older and girls getting periods as a teenager; concern over changes in family relations and issues related to aging parents as they get older - sometimes mostly sad experiences (e.g., grief over death of a loved one and negative changes in relationships with family members) can be difficult without outside validation. To some persons with intellectual disabilities, "getting old" evokes notions of becoming sick and dying. However, some adults do recognize that not to do so depends on a person's health status and how often she visits the doctor. In many of the focus groups, there was generally a lack of appreciation of anything that would be considered "good" about growing older.

7.1.2 A related perception emerged in one group, which found that often there is a lack of self-identification among older women as being someone with a disability, or a negative perception of people with disabilities. The desire to bear a child, but a child without any disabilities, was apparent for some women. Another group found that many older women with intellectual disabilities have previously been institutionalized for years. They have grown up with poor diets and a lack of exercise, thus increasing their risk of osteoporosis.

7.2 Medical Procedures and Treatment

7.2.1 Giving consent to undergo medical procedures or treatment raises complex issues which differ from country to country. Consent issues for procedures such as a breast biopsy are a major problem for women who may have difficulty understanding the procedures themselves or the relative merits and disadvantages of a particular form of treatment. Mental health issues in relation to sexual abuse of women are still untreated or under-rated. Alcohol dependency, drug and disorders such as depression among women living alone or with their families tend to be treated as behavioral disorders. As a result, appropriate treatment is not provided. There still is a tendency by doctors to apply a "band-aid" approach - such as prescribing a calming medication - rather than address the underlying problems. Equipment for mammograms and other tests that are recommended for the general population are often not suitable for women with physical disabilities such as spina bifida or for women with disabilities who are very short in stature, who have contractions or similar conditions. Even the examination tables are not accessible for many women with physical disabilities or who are afraid of the examination process.

7.2.2 Dental care for women with disabilities was reported as an issue by a number of groups. Few dentist offices are accessible and the equipment is rarely suitably adapted for adults with physical disabilities. There is also still a fear of the dental process among many women. Care personnel report an increase in swallowing disorders, seizures, asthma, reflux, and functioning loss in older women. These phenomena have only been observed and there is a need for studies to determine whether these observations accurately reflect prevalent health conditions. Little is known about osteoporosis in women with disabilities and little is known whether certain medications such as steroids and epilepsy medications can increase the risk of osteoporosis. Focus groups report a need for training on sexually transmitted disease, especially AIDS.

7.2.3 Complex issues such as estrogen replacement are still controversial for the general population of women: it is even more difficult to determine appropriate treatment recommendations for individual women. There is still a tendency to perform possibly unneeded hysterectomies, sterilizations, and procedures such as dilatation and curettage when there is no one to advocate or advise the woman with a disability. Much of the research available has been based on populations of men rather than women - for example, studies on heart disease. It is difficult to monitor and advise women with disabilities or to make decisions about health when the information is not available. Studies are few that involve women themselves and the information from those that are conducted needs to be made available widely for women with disabilities.

7.2.4 Decisions related to pap smear tests include an assumption that women who appear to have been sexually inactive have no need for tests. And yet, who is to decide whether the woman has ever been active or may have been sexually abused in the past? The need for information related to HRT - hormone replacement therapy - including risk factors, cost of ongoing treatment, types of HRT available (e.g., tablets, patches, implants). Women who have been sterilized at an early age (parents have been able to give consent for minors under 18 years of age to have a hysterectomy) may have different needs in older age than women who may choose to be sterilized at a later age.

7.2. 5 It is helpful if older women with intellectual disabilities can recognize the differences between women and men in terms of different body parts (including genitalia); that menstrual periods are something only women have; and that menopause is a time when a woman's period stops. Often, older women do not understand why the menopause takes place. Others may lack a way to describe common physical changes that women experience related to menopause₁ such as hot flashes and irritability, or to understand what is involved taking medication such as HRT. Generally, women with intellectual disabilities experience an overall discomfort about, and reluctance to discuss, traditionally taboo subjects, such as sexuality, and in general talking about their own bodies.

7.3 Training for Professionals

7.3.1 Physicians and their staff do not often understand disabilities or have any education on disabling conditions. Community health professionals may not have experience in health care and concerns related to people with developmental disabilities in general, and older women in particular. The offices where medical care is provided are often rushed with little time spent explaining the service system, health issues and other matters. Many women in the focus groups reported that there is not enough time in the office preparing women with disabilities for examinations and helping each woman understand health related issues. Even family members are rushed through visits to physicians.

7.3.2 Training for health professionals, staff and families on how to better communicate health issues to women with intellectual disabilities was urged by a number of groups. This was defined further as training for health professionals that will sensitize them to the concerns expressed by many of the women with intellectual disabilities (i.e., painful or uncomfortable exams and procedures) and how to facilitate more positive health experiences for them.

7.3.3 There are often many unanswered questions regarding the purpose of having medical examinations, such as ophthalmic, dental and pelvic exams, and mammograms. Many women reported feeling discomfort or pain during mammograms or pelvic exams. They reported being accompanied to physician visits by care personnel, but often the care personnel were not helpful in explaining the physical procedures.

7.3.4 Women in the focus groups noted that health examinations can be made more pleasant, by doing such things as controlling their own behavior (lying still, holding breath), but many were less certain of how the physician or other medical personnel might help. There were mixed reactions on how physicians treated women: some reported that physicians and other health professionals were nice to them, while others disagreed.

7.4 Health Promotion

7.4.1 Focus groups often emphasized the need for prevention of onset or worsening of a disease or condition among women with intellectual disabilities. Proactive lifestyle changes can provide health benefits for women with intellectual disabilities who have not led healthy lives, even at a later age. The systematic use of periodic screening checklists for women has been found to be of benefit to general practitioners.

7.4.2 When health services are available, women often report that they experience general confusion over what procedures physicians would do during both regular and specialized exams, and what was the purpose the different types of examinations. In some nations, aid in preparing for medical examinations is provided by care personnel. In the United States, for example, such personnel -often nurses - help to prepare women for medical examinations and other treatments This is often the case if the woman is enrolled in a residential or day services program. However,it has been noted that if the woman is living on her own in the community, there is no one who takes responsibility for this training or advocacy.

7.4.3 Wellness as a lifestyle was often discussed. Participation in a exercise regime and recognition of the importance of regular exercise for staying healthy as they get older was an apparent need. Many women knew that is important to eat the right foods in order to stay healthy, but were not aware that many of the foods that they currently eat would not fit the model of a "healthy" diet. Efforts to encourage women to understand that smoking can cause cancer and that it is not a healthy behavior were recommended. The fact that older women (and men) with intellectual disabilities are less likely to engage in active sports was noted .

7.4.4 Education for women with intellectual disabilities was recommended, including topics concerning women's health issues and general age-related changes, as well as about specific health issues related to their disability and/or to aging. Many of the women reported watching and/or listening to television and radio. Given this, it was agreed that appropriate health information could be developed utilizing a variety of materials, including audio-visual and related computer-based multimedia - for example, WEB-TV.

7.4.5 Access to health promotion may be constrained if women do not have suitable support. Generally, women who are not affiliated with (service) agencies do not have anyone to help them negotiate the complex health system and payment processes.

7.5 Personal and Practical Supports

7.5.1 Women capable of occupation or employment should be assisted to achieve or maintain optimal functional and employment capacity. With regard to employment and access to health care, women with disabilities should be able to work without compromising their entitlement to health services. To help in managing work assignments, personal assistance services should be provided.

7.5.2 Medical services for women with intellectual disabilities should be provided consistent with current standards of practice and such medical services should be sufficient to achieve their purpose. When income is used to determine eligibility or degree of medical service receipt, medical services for which individuals may be eligible should be provided at no expense or at minimum on a sliding fee scale. Further, with regard to medical services, a patients' bill of rights which addresses the needs of people with disabilities should be available. Person-centered, holistic approaches to health care need to be adopted.

7.5.3 Supports for women with intellectual disabilities are important so that they might be encouraged to explore perceptions of themselves as women and their personal issues related to sexuality in a way that is respectful and breaks the apparent "taboo" surrounding these discussions. They may gain support, further, by learning ways to communicate their concerns, including an understanding that they have the right to express feelings of discomfort and/or to ask questions of health professionals. Finally, women with intellectual disabilities should be helped to understand more fully and develop more positive perceptions about being a women, having a disability, and getting older.

7.5.4 Although some areas on the world are comfortable exploring the myriad of women's issues, others are not There are many important matters related to women's health care that need to be discussed. One is that access to health care is often arbitrary. Even when it is allocated, the requirements of special groups of women with intellectual disabilities may be poorly understood, placing them at a disadvantage. Women with multiple disabilities may have even less access to health care than their peers with minimal disabilities, especially to reproductive health care. Professionals may have had little contact with women who have profound disabilities and little sensitivity to their needs throughout the lifespan and those of their family carers. Often, women with physical or multiple disabilities and their advocates spoke of their distress when they encountered various medical investigations and procedures, and the resulting distress which could prevent them from receiving appropriate treatment.

7.5.5. Ethical issues related to informed consent to medical treatment are far from uniform. Both good and poor practices may be found in all regions. Advances in professional training and adequate financial resources do not guarantee good practice. Too often, prevalent is the belief that women of reproductive age should be sterilized routinely in order to prevent transmission of conditions giving rise to disabilities.

8.0 Policy and Service Recommendations

A number of recommendations related to women's health policy and practices in health and health-related services are proffered:

8.1. Sterilization

In some nations, sterilization is used to control a woman's sexuality or for the benefit of carers and not with regard to the woman's preferences or health. Each nation should adopt guidelines regarding the sterilization for women with intellectual disabilities, especially addressing the issue of informed consent to this procedure. Sterilization should never be applied as a broad social policy and without the woman's consent.

8.2 Evaluating Health Status

Service providers should determine how the health status and health care practices of parents and carers may be associated with those of women with intellectual disabilities so as to evaluate their health needs and plan appropriate interventions within a family context.

8.3 Adopting Health Promotion Strategies

Health promotion strategies which recognize the cultural and social context and which are sensitive to the needs of women with an intellectual disability throughout their lives should be developed in consultation with them. At the same time, a greater understanding of age-related changes should be advanced.

8.4 Training Health Providers

Health care professionals should receive training in order to deal sensitively and effectively with women's health needs. Training should be targeted according to local conditions. In some countries, primary health care workers should be trained to offer essential information and guidance if physicians or other professionals working in health care systems are unable to do so.

8.5 Inclusive Communities

Supports for living and working in the community should take account of the distinctive characteristics and needs of women with intellectual disability at different stages in their lifespan.

9.0 Research Priorities

Several important areas of research in the areas of sexual and reproductive health are suggested. In many instances, these inquiries should be undertaken within the context of large scale multinational studies.

9.1 Menstruation

This topic has received scant research attention and many questions remain unanswered, including: How many women with intellectual disabilities have regular/irregular and fertile/infertile menstrual cycles? How do risk factors such as having Down syndrome, short stature and hypogonadism - and maybe other risk factors- influence this? To what extent do anticonvulsants and neuroleptics influence these?

9.2 Menopause

Life stage related changes affect women with intellectual disabilities in the same manner as they do other women. Yet, little research has been directed toward these critical transition stages. Many questions remain, such as: How many women with intellectual disabilities have an earlier onset of menopause? What are risk factors for that?

9.3 Sexually Transmitted Diseases

STDs are a public health problem at any age. Women with intellectual disabilities are no less vulnerable to them. Yet, research has been negligent in addressing the particular issues related to STDs and women with intellectual disabilities. It is necessary to know more, for example: What are effective strategies for educating women with intellectual disabilities on sexually transmitted diseases?

9.4 Reproductive Health

The area of reproductive health, particular in regard to what practices may affect women as they age is virtually untouched in the literature on women and intellectual disabilities. An important question is, Are women with intellectual disabilities more or less at risk from certain forms of cancer? More information in needed, such as: How can women with intellectual disabilities be guided on making their own choices in having children and/ or using contraceptives? What are the rights and responsibilities of guardians in supporting the choice process?

9.5 Training of Medical Practitioners

In a number of countries, medical personnel are trained to become specialists in the area of intellectual disabilities, yet practically none have emerged as leaders in the area with regard to women's health. The dearth of trained practitioners who can serve as leaders in women's health is an impediment to realizing many health targets. Universities, medical training institutions and other settings should expand their focus in this area, particularly expanding their research efforts. There is a need to know more about how to more effectively deliver services to women with intellectual disabilities. For example: What training packages are effective in educating physicians, and especially gynaecologists on the special needs of women with intellectual disabilities?

9.6 Prevention

What is an appropriate strategy for making PAP smears in women with intellectual disabilities? Are there groups of women with intellectual disabilities who need not to be invited for this preventive measurement? What is known about the prevalence or course of cervical cancer in this population?

9.7 Disease Impact

Research must help to determine the incidence and impact of osteoporosis and osteoarthritis among ageing women with disabilities, notably in terms of their social inclusion and general well-being.

9.8 Lifespan Effects

Long-term effects on health should be investigated among aging women. How diet and nutrition of women with disabilities relate to the incidence of heart disease, and the interface of longitudinal drug therapy with lifelong health are two such areas.

9.8 General Life Status

Overall, to date there have been few empirical studies investigating the impact of their employment status or levels of social inclusion on the health and well-being of women with intellectual disability at different stages in the lifespan, and across different social and cultural settings. Further, no research has been conducted on how to integrate women's health issues into the medical practice of nations where women have a devalued status. This is an important, if often complex, area for continued research.

9.9 Socio-Economic Status and Health

Women with an intellectual disability are generally of low socio-economic status. Research should be undertaken to determine the special needs of such women that need to be met in order for them to achieve an equivalent level of physical and subjective well-being to non-disabled women and men living in similar circumstances.

10.0 Summary

Promoting women¹s health across the lifespan may be seen as part of global strategy. Three major themes arise in this report.

First, our understanding of the distinctive needs, vulnerabilities and sources of well-being for women with intellectual disabilities must be addressed vigorously. There are compelling research priorities in the areas of reproductive and sexual health, and in health promotion practices, if health strategies founded on scientific evidence are to be pursued. Research questions of great importance to the health and ageing process among women generally have not been investigated among women with intellectual disabilities.

Second, a notable feature of WHO policy is the direct involvement of women themselves in informing, shaping and evaluating health interventions. This report offers examples of how women with disabilities may be directly involved as full partners in the formation of health strategies and interventions, and thus as contributors to their own well-being as they age.

Third, it is evident that health resources are finite. The distinctive health care needs and also the relatively low socio-economic status of women with intellectual disabilities must be understood in order to inform the allocation, or the re-allocation, of scarce resources at global level.

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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 Bjvrkman (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)

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

#3 Thorpe, L., Davidson, P., Janicki, M.P., & Working Group. (2000). Healthy Aging - Adults with Intellectual Disabilities: Biobehavioral Issues. 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 andold 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 rtle 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 rtle 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 rtle 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 rtles.

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 use of skills, expertise, knowledge and cultural potential of older people

the postponement of negative functional consequences of ageing

health and social services for the ageing as well as studies of co-ordinated programmes training and education

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 rtle 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.

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