Older Adults with Mental Retardation and Their Families

Older Adults with Mental Retardation and Their Families TAMAR HELLER INSTITUTE ON DISABILITY AND HUMAN DEVELOPMENT UNIVERSITY OF ILLINOIS AT CHICAGO CHICAGO, ILLINOIS 60608

I.

INTRODUCTION

Until the last decade, aging was a largely neglected issue in the mental retardation field. Changing demographics resulting in increased numbers of older adults with mental retardation and heightened recognition that these older adults have age-related changes and services needs has resulted in a growing body of research and service programs. In recent years there have been several journal issues (e.g., Mental Retardation, volume 26,1988;Australian and New Zealand Journal of Developmental Disabilities, volume 15, 1989; Irish Journal on Aging, 1993) and books devoted to this topic (Janicki & Wisniewski, 1985; Moss, 1992; Roberto, 1993; M. Seltzer & Krauss, 1987; M. Seltzer, Krauss, & Janicki, 1994; Stroud & Sutton, 1988; Sutton, Factor, Hawkins, Heller & Seltzer, 1993). In addition, the National Institute on Disability and Rehabilitation Research (NIDRR), Rehabilitation Research and Training Center on Aging with Mental Retardation was funded specifically to advance research in this field. This chapter addresses aging from both a biopsychosocial model that examines age-related changes among individuals and a broader perspective that examines demographic and service trends affecting this population. More specifically it reviews (a) changing demographics, (b) conceptualizationof aging, (c) age-related changes, (d) family caregiving issues, (e) personal empowerment and choice making, and (f)service trends and programmatic research. II. CONCEPTUALIZATION OF AGING

Gerontological definitions of aging can be viewed from several perspectives: (a) chronological age, (b) functional aging, and (c) legal definitions. Each of these INTERNATIONAL REVIEW OF RESEARCH m MENTAL RETARDATION. Vol. 20 00747750/97 s25.00

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definitions could result in large differences in estimated numbers of older persons with mental retardation. Most gerontologists have defined old age in years, with the various demarcations varying from age 60,62,65, to 72 (Siegel. 1980). Some gerontologists also differentiate among “young-old” (ages 65-74) and “old-old” (75 and older) (Streib, 1983). More recently, the group 75 and older had been categorized as “mid-old” (75-84) and “old-old” (85 years and up). Using a functional definition of aging, Birren (1959) conceptualized three components of aging: (a) biological aging-an individual’s progressive loss of physiological reserves and capacity for survival; (b) psychological aging-changes in a person’s adaptivecapacities; and (c) social aging4hanges in the extent to which an individual fulfills societal er.pectations regarding social and cultural roles. These functional definitions when used together take into account substantial individual differences in the pattern and rate of aging across each of these dimensions. For example, some persons may physically age earlier, but not perceive themselves as elderly or may continue to fulfill expected social and cultural roles of a younger person. Hence, chronological age is often a poor demarcation of aging, as there is such great individual variability in the extent of aging along each of the functional dimensions. However, the functional definition of aging is often difficult to apply to persons witlh mental retardation, as limits in psychological and social functioning, which are aspects of adaptive behavior, are defining characteristics of mental retardation (American Association on Mental Retardation, 1992). Legal definitions of aging link entitlement benefits to chronological age with minimum age criteria varying fiom age 60 under the Older American Act (OAA) and ages 62-65 for the Social Security Administration. The difficulty in applying the functional conceptualization of aging to mental retardation has resulted in reliance on chronological age demarcations for this group. However, even with regard to chronological age there has been a lack of consensus regarding what ages, to use, with the onset of old age being described anywhere from age 40-75 (Seltzer & Krauss, 1987). Policy analysts have generally preferred to use the criteria of 60 years because it is most in line with provisions of the OAA. Because of precocious aging among some subgroups of persons with mental retardation, the age of 55 years has been recommended by Seltzer and Krauss (1987). However, they warn that the use of this age cutoff results in considerable misclassifications.Hence, some individuals over the age of 55 would be classified as “elderly” despite the fact that their current physical, psychological, and social abilities would not be considered “elderly” in a functional sense. On the other hand, persons with precocious aging, such as some persons with Down’s syndrome, may show functional aging in their mid-40s (Zigman, Seltzer, & Silverman, 1994). This chapter examines age-related changes in biological, psychological, and social functioning, achowledging that different age cutoffs are necessary for various subgroups and across various dimensions of aging.

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THE CHANGING DEMOGRAPHICS

The demographics of aging persons with mental retardation are affected by several major trends in the United States: (a) the aging of the general population, (b) rapid growth rates among minority groups, and (c) the changing structure of the family.

A.

Aging of the Population

There has been a significant demographic shift with the percentage of persons age 60 and over increasing from 9% in 1960 to nearly 17% in the 1990 census. By the year 2010 the percentage of persons 60 and over is expected to increase to nearly 20% (U.S. Bureau of the Census, 1991). Demands upon the nation’s services for older persons are expected to increase, particularly as the “baby boom” generation, currently in middle age, begin to enter the older age group. The number of older people with mental retardation is not known, but it is estimated that the increase in the general population will be mirrored by similar patterns in the population of aging persons with mental retardation. Historically, persons with mental retardation have had relatively short life spans, as many of these individuals died before reaching adulthood (Eyman & Borthwick-Duffy, 1994).In the last two decades improvements in diets, medication, and in environments have increased the longevity of people with mental retardation in general (from 15 years and 22 years for males and females in 1931-1935 to 58 years and 60 years in 1976-1980) (Carter & Jancar, 1983). In particular, the survival of people with Down’s syndrome has increased by more than 30 years (Thase, 1982).Among persons with mental retardation receiving state services, who tend to have moderate to profound levels of mental retardation, the life expectancy ranges from 4 years for those with more profound disabilities to 55 years for those with less disabilities. The life expectancy of persons with mental retardation not in the service system and who have less disabilities is likely to be in the 70s, as in the general population (Eyman & Borthwick-Duffy, 1994). The estimated number of persons with mental retardationage 55 and over (based on the 1980census) has ranged from 1,417,320(based on a 3% mental retardation prevalence rate) to 472,440 (based on a 1% mental retardation prevalence rate) (Seltzer & Krauss, 1987). However, using statistics gathered by mental retardation and developmental disabilities (MR/DD) state agencies, Jacobson, Sutton, and Janicki (1 985) estimated that the number of people age 55 and over with mental retardation in the United States was 196,000 or .396% of the total 1980 census population, and the number age 60 and over was 150,000. Using the 1990 census, Janicki (1991) estimated that the number of persons with mental retardation age 55 and over is 208,730, and the number over age 60 is 166,140.

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Estimates of the number of older persons with mental retardation are needed by service planners and budget aniilysts. However, it may be invalid to use estimates based on known service recipients because many older persons with mental retardation are not currently known to the service system. Krauss (1986) estimated that 40% of older persons with mental retardation are not known to the formal mental retardation service system. In Eidgerton’s most recent follow-up study (Edgerton, 1994) not a single member of the sample (all but one of whom were over age 50) was receiving any service from the mental retardation service system. As they age, this currently underserved group may be in greater need of services as their own health declines and as family caregivers die or become too frail to maintain care. They are most likely to become known to the service system during crises (Janicki, Otis, Puccio, Rettig, & Jacobson, 1985). B.

Growth of Minority Groups

The rapid growth rate of racial and ethnic minority groups in the United States would be expected to result in concomitant growth rates of minorities among older persons with mental retardation. Braddock’s (1991) analysis of the 1990 census data indicated that since 1980, the Asian-American population grew most rapidly (108%) among the racial and ethnic groups. The growth rate was 53% for Hispanics, 13% for African-Americans, and 38% for American Indians, whereas the non-Hispanic White population increased by only 6%. Copeland (1988) has estimated that from 1990 to 2000, racial and ethnic minority populations in the United States will grow seven times faster than the non-Hispanic White population, and by the year 2000, one-third of this country’s population will be other than nonHispanic White. The data generated by mental retardation state agencies on the number of minority persons who are older is likely to be an even greater underestimate than for other older persons with mental retardation, since the agencies’ data are restricted to the number of persons who have been served, and there is some evidence to suggest that the health service systems are not meeting the needs of racial and ethnic minority groups. According to Bowe (1983), only 400,OOO of the 2.3 million African Americans with disabilities are receiving health or social services. In the rare studies that have examined racial and ethnic differences in families’ use of services, there are indications that Hispanic families (Heller, Markwardt, Rowitz, & Farber, 1994; Meyers, Borthwick, & Eyman, 1985) and African-American families are less likely to use or seek residential services (Heller & Factor, 1988b; Markwardt, Rowitz, Heller, & Farber, 1993). These findings suggest that among minority groups there will be a growing number of family caregivers, many of whom currently receive no services from the mental retardation service system. The extent to which these families and their relatives with mental retardation have unmet needs for services is unknown.

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Changing Structure of the Family

Demographic trends affecting the family include an increase in primarily female-headed, single-parent families compared to the past generation (Masnick & Bane, 1980). Contributing factors are the high rates of divorce and the higher life expectancy of women versus their husbands (Rossi, 1987). Hence, persons with retardation are less likely to live in two-parent households than in the past. Furthermore, the previous discussion of life expectancy noted that persons with mental retardation and their families are likely to live longer. Because many persons with mental retardation (particularly those with mild mental retardation) have a life expectancy similar to that of the general population, it is increasingly common for them to outlive their parents. It also increases the likelihood that parents of a person with mental retardation also will be caring for their own parents who in turn are living longer. A more recent trend is the prevalence in the general population of coresidence of adult children with their aging parents (Seltzer & Krauss, 1994).In 1980,at least one child coresided with 35% of 55-year-old married (or previously married) mothers and 18% of 65-year-old mothers (Sweet & Bumpass, 1987). Data from the 1988 National Survey of Families and Households indicated that 45% of parents between the ages of 45 and 54 who had an adult child coresided with at least one of their adult children (Aquilino, 1990). These demographic trends have resulted in the following impact for families caring for an adult relative with mental retardation: (a) the period of family responsibility for that relative is now longer and the likelihood that the relative will outlive his or her parents is greater; (b) siblings and other extended family members are more likely to inherit caregiving roles; and (c) there are fewer potential family caregivers and more potential care recipients, as a mother of an adult with mental retardation also is more likely to be caring for her own parents and to have fewer siblings with whom to share the task (Seltzer & Krauss, 1994). Demands and stress for single-parent and dual-career households may further decrease the ability of families to continue lifelong caregiving. IV.

AGE-RELATED CHANGES

There is a common assumption that persons with mental retardation undergo precocious aging. However, research to date indicates that this is only true for some subgroups of persons with mental retardation. Hence, research on age-related changes needs to be discussed in terms of degree of mental retardation and the presence of Down’s syndrome, cerebral palsy, or epilepsy. This review will examine research on biological, psychological, and social changes among older persons with mental retardation with discussions of subgroup differences when they are presented by researchers.

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A.

Life Expectancy and Health Status

Persons who have profound mental retardation and who are not ambulatory remain at high risk for an early death from respiratory infection (Carter & Jancar, 1983). Other persons with mental retardation who tend to have shorter life expectancies include those with Down’s syndrome, epilepsy, cerebral palsy, major medical problems, lack of feeding skills, and incontinence (Eyman & BorthwickDuffy, 1994). Regression of basic skills among individuals with mental retardation 55 years of age or older has been associated with increased mortality (Eyman, Call, & White, 1989). This finding suggests that maintaining functional self-help skills among older persons with mental retardation would improve their health status. However, there has been lititle research examining the specific effects of medical, specialized therapies and assistive technology interventions on longevity for this group. In addition to a shorter life span, persons with more severe mental retardation have additional medical problems such as scoliosis, dislocated hips, respiratory disease, and chronic otitis media, vision, and hearing deficits (McDonald, 1985). Persons with lifelong histories of antiseizure medication appear to be at increased risk for osteoporosis and could experience a higher risk of fractures as they grow older (Adlin, 1993). Persons with less severe mental retardation appear to experience similar physical health changes as they age to persons without mental retardation, such as sensory losses, cardiovascular diseases, confusion, immobility, constipation, and bladder difficulties (Adlin, 1993). There have been very few studies documenting the health status of older persons with mental retardation. These have mostly comprised cross-sectional studies relying on registry data. In a study of persons receiving mental retardation services in New York, Janicki and Jacobson (1 986) found that age was associated with increased cardiovascular,digestive, musculoskeletal, special sensory, and respiratory systems conditions. A study conducted in Wessex, Great Britain (Hogg & Moss, 1993), of over 3000 persons with mental retardation across the life span indicated that chronic diseases increased from age 50 years on, hearing loss from age 60 on, and mobility loss and incontinence from age 70 on. A smaller, more intensive study of adults age 50 and over with mental retardation (94% moderate to profound level of retardation) in Oldham, Great Britain (Moss, Goldberg, Patel, & Wilkin, 1993). included analyses comparing the health status of this group with that of a comparative group drawn from the same community’s general elderly population (Wilkin, Durie, Wade, Jolley, & Stout, 1984). The group with mental retardation had a higher rate of incontinence and obesity and a lower rate of angina. Due to the cross-sectional design of these studies, they did not account for group differences in mortality rates. An example of the interaction of aging and differential mortality is Moss et al.’s (1993) finding that incontinencepeaks around

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the age of 40 years and later around 80 years. Those who were incontinent at age 40 were more likely to have severe or profound mental retardation and were never toilet trained, whereas those who become incontinent in their 80s did so as a result of aging. With age there was also a lower prevalence of epilepsy. Hence, persons with mental retardation who survive into older age are less likely to have severe or profound retardation and epilepsy and more likely to have relatively good health. The impact of differential mortality is likely to be less among the general population (Moss, 1991). In one of the rare longitudinal studies of older adults with mental retardation Anderson (1993) examined a national database of adults with mental retardation over 62 years of age living in residential facilities. The national character of the database was important because states differ widely in their practices, including the utilization of different community-based and institutional options. A 4- to 5year follow-up study was conducted with 213 residents to determine whether health status changes occurred over time (Anderson, 1993). Information was obtained about residents still living in their initial residences and about residents who had transferred or died during this period. Over time there were significant increases in heart disease and arthritis for people still in their original residences (Anderson, 1993). 6.

Behavioral Changes

Although some literature supports the hypothesis that adults with Down’s syndrome older than 50 years are subject to losses in adaptive skills, the research on persons with mental retardation who do not have Down’s syndrome is less clear. One of the difficulties is that many studies of older persons with mental retardation do not specify etiology. Reported declines may be smaller if persons with Down’s syndrome were not included. These primarily cross-sectionalstudies have reported mixed results, with some finding older adults less dependent in activities of daily living than younger adults (Hauber, Rotegard, & Bruininks, 1985; Krauss & Seltzer, 1986) and others finding greater dependence in older adults with mental retardation than in younger adults (Janicki & MacEachron, 1984; Seltzer, Seltzer, & Sherwood, 1982). However, these studies used different age cutoffs to demarcate the older group, with the first two using the ages of 54 and 62 respectively, and the latter two studies using the age cutoff of 54 and 72, respectively. In contrast, the studies that differentiated between persons with mental retardation with and without Down’s syndrome showed age-related adaptive declines among persons with Down’s syndrome. For example, one cross-sectional study of 509 adults with mental retardation in the Netherlands (Haveman, Maaskant, & Sturmans, 1989) found that among adults without Down’s syndrome, people over 50 years of age had a small but nonsignificant increase in motor problems and an increase in linguistic skills. No other age-related changes in adaptive skills were not-

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ed. In contrast adults over age 50 with Down’s syndrome displayed adaptive skill loss. Similar findings were reported by Zigman, Schupf, Lubin, and Silverman (1987)in a study comparing adults with mental retardation with Down’s syndrome (n = 2144) and without Down’!; syndrome (n = 4172) in New York. In a noninStitutiOndized sample, Silverstenn et al. (1988) found an age-relateddecline in m e tor behavior among adults with Down’s syndrome over age 60 years. However, interpretation of these studies is hampered by the cross-sectional nature of these studies, which are confounded by cohort and differential mortality effects. Differences among age groups could be due to attrition of the most disabled and to differences in life experiences and treatment received. Several recent longitudinal studies have begun to examine adaptive behavior over time. In the Anderson (1993) study discussed previously, the average level of adaptive behavior declined only slightly in the 5-year follow-up of persons living in residential programs. A 1-year follow-up study of 128 persons with mental retardation (including 64 persons with Down’s syndrome) over age 30 in Indiana (Hawkins, Eklund, & Martz, 1991) noted few health and adaptive behavior changes among persons overall. It did, however, note improvement in some aspects of cognitive functioning over time (memory, analysis-synthesis,and global cognitive scores). There were sex differences, with females showing an increase and males showing a decrease in vocabulary over time (particularly for those in their 60s and 70s). In a 4-year follow-up study of nearly 7000 adults with mental retardation (including over 900 with Down’s syndrome) Schupf, Silverman, Sterling, and Zigman (1989) found greater behavioral declines among adults with Down’s syndrome compared with other adults with mental retardation. The authors suggested that these behavioral regressions could be influenced by acute conditions occurring prior to death. One aspect of age-related changes that has been studied through cross-sequential and longitudinal analyses is cognitive functioning. Generally, these studies have found that for adults with mental retardation without Down’s syndrome, overall intellectual capability remains stable until approximately age 65 (Fisher & Zeaman, 1970; Walz, Harper, h Wilson, 1986), after which there are gradual declines. For individuals with Down’s syndrome there is evidence of intellectual decline after the age of 45 to 50 years (Fenner et al., 1987; Hewitt, Carter, & Jancar, 1985). Among adults with merital retardation with or without Down’s syndrome gradual age-related declines in performance can be due to gradual changes characteristic of the majority of individuals. An alternative explanation is that the majority of these older adults maintain their intellectual capabilities but that with age an increasing minority may be affected by a dementia disorder, such as Alzheimer’s disease, significant sensory impairments affecting performance, or other impairments (Zigman et id., 1994). Studies that examine individual profiles more thoroughly and prospectively will allow us to better understand the nature and progression of age-related changes in cognitions and behavior.

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Mental Health Changes

Little is known about the relationship between age-related changes in physical health, adaptive behavior, and emotional well-being for persons with mental retardation. Like their age peers, older persons with mental retardation face emotional challenges related to physical and social support losses (G. Seltzer, 1985). Cross-sectional studies have indicated lower maladaptive behaviors for older versus younger adults in MR/DD settings (Jacobson, 1982), in community and hospital-based settings (Moss, Hogg, & Home, 1992). and in nursing homes (Heller & Factor, 1993b). However, these findings should be examined cautiously as they could be due to survivor effects. The age-specific prevalence of psychiatric diagnoses is not known for persons with mental retardation. A study of over 30,000 adults with development disabilities (Jacobson, 1982) found no age-related differences in overall prevalence rates of mental illness. The Oldham study discussed earlier (Moss, Goldberg, & Patel, 1991) indicated that 11% of the sample had a psychiatric disorder, excluding dementia. Most of the diagnoses were depression and generalized anxiety. However, this sample was quite small and included few persons with mild mental retardation.There is clinical evidence that older persons with Down’s syndrome have higher rates of depression; however, it is not clear to what extent depression in this group is related to dementia (Sovner & Hurley, 1983).Little information is available on the risk for mental health problems in other subgroups of persons with mental retardation or on the effects of various therapeutic interventions in increasing the mental health status of this population. D.

Aging and Down’s Syndrome

In comparison with other etiologies of mental retardation, Down’s syndrome is the only one that has been widely studied in regard to age-related changes. As indicated earlier, in comparison with the general population and with other adults with mental retardation, research has indicated that persons with Down’s syndrome are more likely to experience premature aging in intellectual and sensory losses (Hawkins et al., 1991; Zigman. Seltzer, Adlin, & Silverman, 1991). They have other age-related health problems, including hypothyroidism,premature aging of the immune system, and sleep apnea (Adlin, 1993). Other characteristics of premature aging in this population may include changes in skin tone, graying or loss of hair, cataracts, hypogonadism, increased seizures, incidence of neoplasms, and degenerative vascular disease (Brown, 1985; Oliver & Holland, 1986). Virtually all individuals with Down’s syndrome develop neuropathological changes similar to those seen in Alzheimer’s disease (reviewed in Zigman, Schupf, Zigman, & Silverman, 1993).However, the age-specific risk for displaying symptoms of Alzheimer’s dementia in adults with Down’s syndrome is lower than would be expected given the Alzheimer’s neuropathology. In Zigman et al.’s re-

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view estimates of the prevalence rate of Alzheimer’s dementia across retrospective, cross-sectional,and longitudinal studies have ranged from 15% in adults over age 30 (Ropper & Williams, 1980) to 39% in adults over age 50 (Hewitt, Carter, & Jancar, 1985). with a 100% prevalence rate in a study limited to a neurological clinic population (Lott & Lai, 15182). Cross-sectional studies have found increases in dementia with age (Thase, Liss, Smeltzer, & Maloon, 1982). Given that most studies of Alzheimer’s in this population are cross-sectional and limited to institutional populations, the generalizability of these findings are limited (Zigman et al., 1994). Also, diagnosis is complicated by the higher rate of depression among people with Down’s syndrome, which can also lead to lower adaptive and cognitive functioning (Sovner & Hurley, 1983).Although conclusive results regarding the association between dementia and depression awaits further research, investigators in this area recommend the treatment for all persons with depression regardless of seventy. Szymanski (1988) has concluded that the precipitous diagnosis of dementia may be disastrous and may lead to lack of treatment of persons who may actually have a treatable depression. Hence, there is a need for studies of age-related changes that differentiate persons with Down’s syndrome from other persons with mental retardation. In order to obtain accurate diagnoses these studies need to have standard diagnostic criteria and multiple measures, including memory and cognitive loss, adaptive skill, and neuropsychological testing. Furthermore, there is a need for research on interventions aimed at improving the health and psychosocial well-being of older persons with Down’s syndrome. E.

Aging and Cerebral Palsy

Very little is known about the health and wellness of aging persons with mental retardation and cerebral palsy. Several recent cross-sectional studies point to trends regarding older persons with cerebral palsy, notably that they may have earlier age-specific mortality, increases in rate of impairment in sensory and motor abilities, and decreases in rates of seizures with advancing age (Brown, Bontempo, & Turk, 1991; Janicki, 1989). Clinical data suggest that persons with cerebral palsy may be at an increased risk for problems with mobility, osteoporosis, increased fracture rates, speech and ventilation, and sensory losses as they age. In their study of 341 residents (94 with cerebral palsy of which 90% had mental retardation) age 30 years and over living in nursing homes, Heller and Factor (1993b) found that in comparison with other residents with developmental disabilities, the residents with cerebral palsy had a higher level of intellectual functioning and less maladaptive behaviors, but a lower level of adaptive behavior. They were more likely to be nonambulatory and had a greater prevalence of arthritis and fractures. During a 2-year follow-up period residents with cerebral palsy

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were less likely to transfer into community-based settings other than nursing homes than the other residents. These data lend credence to Adlin’s (1993) warnings that persons with cerebral palsy are at risk for increased dependency as they reach older adulthood. However, there is little informationdocumenting the extent to which these conditions may be related to general or pathological aging, or to preventable secondary conditions.Also, there has been little documentationof the effects of preventative or ameliorative interventions, such as exercise programs and assistive technologies (Adlin, 1993). In summary, this discussion of the state of knowledge regarding age-related changes suggests different patterns of biological, psychological, and social aging among subgroups of older adults with mental retardation. Although precocious aging may occur for some persons in some subgroups (e.g., Down’s syndrome) (Zigman et al., 1993), for most persons with mental retardation, as with their counterparts who do not have mental retardation, functioningoften remains stable or may potentially improve in various aspects of functioning well into advanced ages. Gerontologists have noted that in the general population, there are many examples of older persons improving various aspects of their physical, psychological, or social functioning with age. In fact, there is a wide body of literature indicating that in some fields (e.g., science), creativity is highest in old age (Dennis, 1966). In a study of 100 adults (age 15 years and older) with moderate to mild mental retardation, Bell and Zubeck (1960) reported significant increases in intellectual functioning over a 5-year period among adults in their 50s and 60s who were relocated to a more stimulating residential environment. In addition to further studying age-related changes over time among subgroups of persons with mental retardation, future research needs to examine the influence of environmental factors and intervention techniques on the prevention and amelioration of age-related changes. These factors include (a) caregiving provided by families, (b) opportunities for empowerment and choice making, (c) availability of formal services and programs, and (d) use of assistive technologies.

V. A.

THE FAMILY AS THE LARGEST PROVIDER OF CARE

Life Span Caregiving Issues

Family members are the most consistent source of social support for persons with mental retardation throughout their life span. With at least 85% of persons with mental retardation living at home with their families, the families have become the major providers of care in this nation (Fujiura & Braddock, 1992). As parents age, out-of home placement is more likely, although it is not the primary residential option, at least while the parents are still alive (Meyers, Borthwick, & Eyman, 1985).

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The life span impact of caregiving for a person with mental retardation has been rarely investigated either cross-sectionally or longitudinally across various life stages. A life span perspective takes into account changing roles, functions, and smssors over the life span. Mental retardation, family development, and gerontological researchers have proposed theories that can shed light on the long-term impact of caregiving for family members with mental retardation. Birenbaum (1971) and Farber (1959) hypothesized lhat coping by family members becomes more difficult as the child ages and as parents continue caregiving over a longer period of time. With age, these caregivers are more likely to play nonnormative roles, a phenomenon Farber has termed “arrest in the family life cycle.” Several studies found that parents of older children with mental retardation experienced more stress and less supports than parents of younger children (Bristol & Schopler, 1984; Suelzle & Keenan, 1981). Similarly, researchers examining caregiving among families of impaired elderly persons have suggested the “wear-and-tear” hypothesis, which predicts that long-term exposure to stress results in depletion of physical or psychological resources (Johnson & Catalano, 1983; Pearlin, Lieberman, Menaghan, & Mullan, 1981). On the other hand, other gerontological researchers proposed an adaptational model of caregiving (Townsend, Noelker, Deimling, & Bass, 1989), which hypothesizes better adjustment to the caregiving role over time. For example, they found improvement in psychological health of children caring for elderly parents over time. Seltzer and Krauss’s (1989) study of 462 older mothers caring for an offspring with mental retardatiaa provides preliminary support for this hypothesis. They found that these mothers were healthier, had better morale, and reported no more burden than did mothers in studies of younger families of persons with mental retardation or in studies of family caregivers of elderly persons. In one of the only studies to examine family adaptation to a family member across the life cycle (Heller, Rowitz, & Farber, 1992). interviews with 489 mothers of persons with moderate to severe mental retardation indicated that family burden was perceived as lowest among caregivers of the older (age 30 years and over) members with mental retardation. They concluded that perhaps at this stage there is greater acceptance of the family member and greater reciprocity in caregiving as the child with mental retardation often becomes a strong support resource for an aging parent. In a study focusing on such caregiving reciprocity, Heller and Factor (1993a) found that among 85 parents of dults age 30 years and older, parents who received greater support (across seven functional areas of instrumental and socioemotional support) from their offspring with mental retardation perceived less burden in caring for that offspring. Other factors that have been associated with the wellbeing of older mothers include characteristics of the adult child (physical health, maladaptive behavior) and aspects of the family social environment and support network (Heller & Factor, 1993c; Seltzer & Krauss, 1989). The impact of these factors are not well understood .and warrant further research that examines family adaptation across the life span and across various life transitions.

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Sibling Caregiving

Despite the fact that sibling relationships are one of the most durable relationships among people (Cicirelli, 1992), relationships among adults with mental retardation and their siblings have been largely neglected by researchers. Seltzer and Krauss (1994) suggested that sibling relationships in which one of the siblings has mental retardation may be similar to other sibling relationships in many aspects. Yet, they also may be characterizedby basic differences in the degree to which siblings experience the “same” family environment (due to differences in their own perceptions and cognitions or to differences in parental behaviors towards them) and the degree to which the siblings’relationship is egalitarian (resulting from different roles assumed by siblings). Furthermore, in families of adults with mental retardation there is often an expectation that a nondisabled sibling will take over parental responsibility when the parents can no longer maintain care (Heller & Factor, 1988a; Krauss, 1993). Several recent studies have examined the nature and quality of the sibling relationships when there is an adult sibling with mental retardation. In an observational study of 35 adults with mild mental retardation, Zetlin (1986)found that these sibling relationships were most commonly hierarchical, with the adult with mental retardation being more emotionally dependent on the nondisabled sibling. Begun (1 989) found that sisters of adults with mental retardation tended to have relationships that were positive but not intimate. In a large-scale study of sibling relationships (N = 326) that builds on their ongoing research on family caregiving for adults with mental retardation, Seltzer and Krauss examined siblings’ current and future patterns of support (Seltzer, 1993) and caregiving roles (Krauss, 1993).They found that siblings are much more likely to provide affective rather than instrumental support to their sibling with mental retardation, with 86%providing affective support and only 25%providing instrumental support. The factors determining whether siblings provided support differed for each of these support function domains. Current affective support was associated with the past interpersonal climate of the family of origin (retrospectively recalled by the sibling), which included more cohesion and expressiveness. On the other hand, current instrumental support was associated with objective need for support, including a mother who was older and widowed. A surprising finding was that siblings were more likely to provide instrumental support to a sibling with less severe mental retardation. In regard to future caregiving roles when the parents can no longer continue these roles, Seltzer (1 993) found that nearly three-fourths of the mothers expected a sibling to take over the responsibility. Nearly one-quarter of siblings expected to eventually coreside with their sibling with mental retardation and another 14%expected to assume legal guardianship for their sibling (Krauss, 1993). Affective rather than instrumental support influenced the degree to which a sibling was expected to be a successor caregiver (Seltzer, 1993).Also, siblings expecting

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to coreside with their sibling were more likely to have had the closest relationship with their brother or sister both currently and historically, and perceived lower needs for support in caring for their sibling. Other critical factors that seem to shape the quality of sibling relationships are parental attitudes, expectations, and behaviors (Cleveland & Miller, 1977; Zetlin, 1986),and living arrangements (Begun, 1989). Zetlin (1986) reported greater conflict among siblings who coresided than among ones who lived apart. To date there have been no studies that have examined the issue of sibling caregiving prospectively. We do not know if the family’s expectations about future caregiving will match actual future caregiving roles. Similarly, the correlates of expected caregiving may differ firom correlates of actual caregiving when the parents can no longer assume this rgole. Furthermore, there is a need for research on caregiving reciprocity between the sibling with mental retardation and other siblings and on the impact of the sibling relationship on the well-being of the siblings. One study (Seltzer, Begun, Seltzer, & Krauss, 1991)did indicate that having a sibling involved with the brother or :sisterwith mental retardation was associated with positive maternal well-being. The effect of this relationship on other family members has not been examined.

C. Future Planning For older family caregivers of adults with mental retardation a major concern is future planning for the time when they can no longer provide care for their relative due to age-related incapacities or death. Only recently have researchers begun to examine these caregivers’ planning needs and the factors associated with family decision making and planning (Heller & Factor, 1993~). Future planning encompasses residential, legal, and financial arrangements in addition to other domains affecting quality of life, such as health care, vocationallleisure activities, and community supports. Studies examining this issue have consistently reported high ambivalence, anxiety, and frustration of families in making such long-term plans (Gold, Dobrof, & Torian, 1987; Heller & Factor, 1991; Roberto, 1988; Turnbull, Summers, & Brotherson, 1985). However, recent studies conducted in different states have noted variation in the percentage of families making residential, financial, and legal plans. 1. RESIDENTIAL PLANS

In regard to residential plans for their relative with mental retardation, the percentage of families making concrete plans have ranged from one-quarter in Heller and Factor’s (1991) study of 100 caregivers (mean age of 63 years) in Illinois to 45% in Smith’s (1992) study of 235 caregivers (mean age of 70 years) in New York. A study conducted in New York City (Gold et al., 1987) found that although nearly two-thirds of the 42 caregivers interviewed (mean age of 72 years) had ap-

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plied for a residential program, most had been on waiting lists for years. Some of the differences across these studies could be due to differences in sample composition (such as minority composition and number of sibling caregivers) and in various state service systems. Although concrete planning may be limited, a sizable number of respondents in the above studies desired placement in their lifetime, ranging from 3040% of the family caregivers (Gold et al., 1987; Heller & Factor, 1991; Heller, Smith, Kopnick, & Braddock, 1992). Among families desiring placements the vast majority preferred community residences with family-like social climates (Baker & Blacher, 1988; Gold et al., 1987; Heller & Factor, 1991). Many older caregivers were wary of the residential system, expressing significant concerns about resident abuse, uncaring staff, meal quality, degree of supervision, neighborhood safety, program stability, and community acceptance (Heller & Factor, 1988a). Across studies an estimated one-third to one-half of families preferred eventual placement with another relative when they could no longer provide care (Goodman, 1978; Heller & Factor, 1991; Roberto, 1988).The most likely future family caregiver is a sibling of the person with mental retardation (Heller & Factor, 1988a; Krauss, 1993). Cole (1986) proposed a theoretical model for understanding the roles of family stressors and resources in influencing families’ decisions to place a member with mental retardation out of the home. Stressors related to the child and other life stressesjointly produce a crisis. A family may cope by accommodation and maintenance of the child in the family home or by placement out of the home. Family resources and positive appraisals of the circumstance buffer the impact of these stressors, enabling the family to maintain the child at home. A number of studies have examined the influence of the factors in Cole’s model on placements of children out of the home. These have generally found that characteristics of the child (maladaptive behaviors, intellectual functioning) (e.g., Blacher, Hanneman, & Rousey, 1992; Borthwick-Duffy, Eyman, &White, 1987; Sheman, 1988) and of the families’support resources (e.g., Sherman, 1988) to be associated with placement decisions. Only a few studies have examined the influence of these factors on placement decisions for adults. Black, Cohn, Smull, and Crites (1985) found that families who were most likely to request out-of-homeplacements were more likely to have greater health problems and caregiving strain, low levels of service use, and high levels of dependent and maladaptive behaviors among the adults with mental retardation. Heller and Factor (1991) also found that both maladaptive behaviors of the adult with mental retardation and perceived family burden were associated with families’ future placement preferences. In a 2-year longitudinal follow-up (Heller & Factor, 1993c) of this study, the key variable affecting desire for future out-of home placement was the degree to which needed services were not met. However, the impact of service use in Heller and Factor’s (1992) study was op-

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posite of that predicted by Cole’s model. Greater use of formal service was related to the family’s preference for placement. One explanation is that families’ use of services places them in closer contact with the residential service system and is potentially a first step toward placement. In a study examining both predictors of placement desire and actual placements over a 2-year period (Heller &Factor, 1991), the key variable associated with both outcomes was the high perceived unmet need for formal services. High maladaptive behaviors of the adult child irelated to placement desire, whereas low level of adaptive behavior related to actual placements made. This finding underscores the importance of conducting longitudinal studies of larger samples that can examine the family dynamics and the role of informal and formal supports on families’ placement decisions and actual placements. Families have frequently refrained from discussing future care plans with other family members, including the person with mental retardation (Goodman, 1978; Gold et al., 1987; Heller & Factor, 1988a; Heller et al., 1992; Roberto, 1988; Smith & Tobin, 1989). In a study of a family support program for adults with developmental disabilities, over 61% of family caregivers never discussed the service plan with their relative (Heller et al., 1992). Researchers also have focused little attention on the preferences of people with mental retardation regarding their future plans. One study of 37 adults with moderate and mild retardation a,ge 30 and over living with their families (Heller & Factor, 1990) found that the majority (63%) wanted to continue living with their parents. A study conducted in Illinois and Ohio with 103 adults with moderate to severe mental retardation age 35 and over found that adults who were living at home were more likely to express a desire to move out of their family home after participating in a later life planning training program (Heller, Factor, Sutton, & Stems, 1996). The extent that persons with mental retardation can make future plans and the extent that training in later life planning can expand their capacities to make choices and future plans is an area warranting further research. 2. LEGAL AND FINANCIAL PLANNING

Future planning also entails providing for the relative financially, without jeopardizing government benefits, and providing for guardianship when the relative is deemed incompetent. Studies of financial planning have shown discrepant results, with some indicating that less than 20% of families made any estate plans (Gold et al., 1987;Roberto, 1988) and others indicating that about two-thirds had made some financial arrangements (Heller & Factor, 1991; Smith, Fullmer, & Tobin, 1994).As with the studies of residential planning these discrepant results could be due to d e mographic differences between the samples and to differences in family awareness, training about these issues, and differences in what constitutes financial planning. Lack of information and misirifomtion has often lead to inappropriate efforts to obtain guardianship, in derogation of the individual’s rights, and to inefficient

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use of family financial resources and governmental benefits (Freedman & Freedman, 1994). Heller and Factor’s (1988a) study indicated that about one-quarter of the families had made plans for guardianship. Smith et al.’s (1994) study, comparing families who were using day programs for their relative with mental retardation with those who were not, reported that 56% of the user group and 32% of the nonuser group had made guardianship plans. These studies of future planning show considerable discrepancies in estimates of families’ degree of planning for future residential, legal, and financial arrangement. However, across studies there is a clear indication that a sizable number of families have not made concrete plans and that many express a high need for future residential placements outside of the family home. 3. CULTURALAND SOCIOECONOMIC CONTEXT

The family’s cultural and socioeconomiccontext influences the nature and extent of the family’s future plans for their relative. Comparisons of African-American and white families in Heller and Factor’s (1988b) study found that the African-American families were less likely to make residential or financial plans, and were more likely to prefer future placements within the family network. These findings could be explained by both economic and sociocultural differences. The African-American caregivers in their sample tended to be of lower socioeconomic level, were younger, were more religious, and were more likely to be sibling caregivers. Positive attitudes to caregiving by extended family members (particularly siblings) likely enabled families to continue caregiving within their homes. In a study examining family caregiving across the life span conducted in Chicago, both Hispanic (Heller et al., 1994) and African-American families (Markwardt et al., 1993) were less likely to use residential services than other family caregivers. One reason could be attributed to difficulties of minority families in accessing services (Vidal de Haymes, 1989). For example, Heller et al. (1994) found that Hispanic caregivers of persons with mental retardation experienced significantlymore problems with the service system, especially in finding needed information and in being able to participate in support groups. Lack of bilingual services and discrimination contribute to lower service accessibility for minority groups (Rosenthal & Carty, 1988). D.

Family Support

For families of adults with mental retardation there is a need for (a) support programs that bolster their capacity to continue caregiving in the home and (b) residential options for those seeking placements. This section discusses the family support needs and evaluations of support programs for those families who continue to maintain care in the home. Residential options will be discussed in the section on service trends.

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1. ASSESSMENT OF NEEDS Major unmet service needs of families caring for adults with mental retardation include financial assistance (Fujiura, Roccoforte, & Braddock, 1994),information and referral regarding future planning (Louro & Miller, 1988), and case management and respite (Heller & Factor, 1994). In one of the only studies that detailed families’ actual cash expenditure.s(Fujiura et al., 1994), families spent an average of 20% of their pretax annual income on unreimbursed expenses for their adult relative with mental retardation living with them. The key case management needs of families’reported by Heller and Factor (1993c) were for information regarding residential programs, financial plans, and guardianship. Despite the fact that nearly 80% of persons with mental retardation live with family members (Fujiura, 1996), total spending for family support services is low, representing only 2% of fiscal year 1992 expenditures for mental retardation services (Braddock, Hemp, Bachelder, & Fujiura, 1995). Braddock et al. (1995) found that most states had discrete family support initiatives, but many states limited their initiatives to children, and few states provided cash subsidies to adults. 2. FAMILY SUPPORT EVALUATIONS

There have been very few empirical studies evaluating the effectiveness of family support initiatives, and even fewer examining family support initiatives for adults. Evaluations of cash subsidy programs in Michigan and Minnesota for families of children with developmental disabilities have shown less stress, more life satisfaction (Herman, 1991 ; Meyers & Marcenko, 1989; Zimmerman, 1984), and lower needs for out-of-home placement (Herman, 1991; Meyers & Marcenko, 1989) among families receiving the subsidies. However, these studies are limited by methodological constraints, :such as reliance on retrospective data (Zimmerman, 1984) and lack of adequate:comparison groups. In Illinois an evaluation study of a family support program for adults with severe developmental and mental disabilities was conducted using a longitudinal 6month follow-up design with comparison groups obtained randomly through lottery from the applicant pool (Heller, Smith, Kopnick, & Braddock, 1992; Heller, Smith, & Kopnick, 1992).This program (Home-Based Support Services Program) provided a flexible array of services to families at a cost of about $1200 per month. At the 6-month follow-up, participants in the programs were more likely than nonparticipants to have increased service use and satisfaction, decreased unmet formal service needs, and increased community integration of the adult with disabilities. An 1%month follow-up compared program participants with a new group chosen randomly from previous applicants. As in the earlier evaluation. participants were more likely to have greater service use and satisfaction and less unmet formal service needs. Additionally, they were less likely to need out-of-home placement for their relative.

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Analyses comparing the program’s impact on older (age 55 and over) versus younger caregivers indicated that at the Cmonth follow-up older families were more likely to benefit from the program in each of the above outcomes (with the exceptions of increased community integration).Also, only among the older caregiver group were there increases in establishingguardianshipand decreases in perceived caregiving burden. These findings illustrate the importance of including older families in family support initiatives. However, there is a need for more empirical studies that evaluate the effectivenessof different types and aspects of family support programs in other states and among diverse families.

VI.

INCREASING PERSONAL EMPOWERMENT AND SELF-ADVOCACY

Personal empowerment and self-advocacy has only recently been recognized as an important goal for persons with mental retardation (Abery & Bruininks, 1990; National Conference on Self-Determination, 1989; Pederson, Chaikin, Koehler, Campbell, & Arcand, 1993). Since the mid-1950s parents have provided leadership in planning and service development in the field of mental retardation. In the 199Os, leadership opportunities are expanding to include both families and individuals with mental retardation. The number of People First and other self-advocacy chapters for persons with mental retardation in the United States has grown considerably from 55 chapters in 1985 (Amado, Lakin, & Menke, 1990) to over 505 chapters in 1992 (Longhurst, 1994).There are a substantial number of adults in middle age and older years in these groups (Longhurst, 1994). Of the 368 1 members in the 27 1 groups surveyed, 39% of the members were age 36 to 50 years and 13% were 5 1 years and older, Although there is a tendency toward greater autonomy and independence in community living, in most settings persons with mental retardation still have limited choice in many aspects of their daily lives. Limited opportunities for making choices were noted in two recent studies (Heller et al., 1993; Lakin, Burwell, Hayden, & Jackson, 1992). Lakin et al. (1992) found that among 130 adults in Minnesota with mental retardation living in community and family homes, a majority of adults had no personal choices regarding when they went out with friends (54%) and when they would spend money for personal items or entertainment (57%). About 40% were not given the opportunity to decide their social-recreational activities. Adults living at home with family members were least likely to make choices. The Heller et al. (1993) study of later life planning indicated that over 60% of the older adults with mental retardation interviewed reported never making choices about the work they do. At least one-quarter reported making no choices regarding what to eat, when to use the phone, and whether or not to clean or decorate their rooms. Two other studies have found that adults with mental retar-

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dation have little direct involvement in the decision-making process and choices related to retirement from work (Sutton, Stems, & S c h w a , 1993) and future living arrangements (Heller & Factor, 1993a). Little is known about how personal empowerment may be systematically developed, nurtured, and enhanced. Rappaport (1987) defined empowerment as a “belief in the power of people to be both the master of their own fate and involved in the life of their several communities” (p. 121). Empowerment strategies include both a focus on help-seeker’s behaviors and skills and help-givers’ roles in helping relationship (Dunst, Trivette, & Deal, 1988). A broader ecological approach focuses on both individual skill development and the creation of opportunities to display competencies in one’s community. Researchers examining choice making among persons with mental retardation have found that the actual observed choice making behaviors of these individuals often do not reflect their known preferences (Shevin & Klein, 1984). Some of the factors that could account for this are the “acquiescence” that has been evident in research on persons with mental retardation, expressive language impairments, and lack of experience in articulating preferences. Limited research does exist indicating that assertiveness training and training for decision making among adults with mild or moderate retardation can develop skills in the area of choice making (Bregman, 1984; Tymchuk, Andron, & Rahber, 1988), but they are limited in scope. The Later Life Planning Intervention Project (Heller, Stems, Sutton, & Factor, 1996) examined the effectiveness of a 15-week training for persons age 35 years and over in choice making and later life planning. Using a baseline and 6month follow-up comparison group design, they found that the training resulted in increased knowledge on choice making and aging and increased the leisure activities among those participants who lived at home. On the other hand, this training also increased participants’dissal.isfactionwith their residential environments.The authors attributed this latter finding to participants’ increased awareness of other options. For example, the participants were more likely than the comparison group to have increased desire to move into less restrictive settings or out of their family homes. More long-term longitudinal studies are needed to examine the impact of choice-making training on actual later life plans made and goals attained. The authors note that in addition to direct instruction in choice making, any choicemaking intervention needs to systematically integrate choice making into the individuals’ daily lives and needs to provide opportunities and environmental supports so that they can use and maintain these skills in their natural settings.

VII.

SERVICE TRENDS AND PROGRAMMATIC RESEARCH

Services and programs addressing the needs of older adults with mental retardation are a relatively recent plhenomenon. A 1985 national survey (Seltzer &

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Krauss, 1987)identified 327 community-based and 202 institutional day and residential programs in 43 states serving a substantial percentage of older adults (55 years and older) with mental retardation. The large majority of these programs were established after 1980.About one-half of these programs were created specifically for this population, and the other half were existing programs that made modifications to meet the needs of older adults with mental retardation. The factors shaping services for this population include (a) emerging service paradigms, @) federal legislation, and (c) states’fiscal and programmaticcommitments.

A.

Emerging Service Paradigms

Over the past 25 years, services to persons with mental retardation have been in a state of flux (Bradley & Knoll, 1990) driven by changes in the dominant theoretical paradigms. Bradley and Knoll described three phases: (a) institutionalization and segregation (ending in the mid-1970s); (b) deinstitutionalizationand community development (1976 to 1986); and (c) community membership (the emerging paradigm). The first phase emphasized the medical model and segregation of people with disabilities.The second phase was characterizedby a shift from the medical model to the developmental model, with services being offered in specialized settings that prepared individuals for eventual integration into less restrictive settings.The community development phase, which is only beginning to shape services, emphasizes individualized functional supports to enhance community inclusion and quality of life. Service delivery is being transformed to incorporate greater (a) commitment to community and family, (b) emphasis on human relationships and friendships, (c) person-centered programming, and (d) choice and control by people with disabilities. Services to older persons with mental retardation are likely to mirror these same trends. In Seltzerand Gauss’s (1987)survey the pattern of residential services was structurally similar to programs for younger adults. In contrast with the residential models, they found that the community-based day programs were characterized by innovations geared specifically to the older population, including leisure and outreach services and supplemental retirement programs. A recent national survey of innovative day, residential, and case management services for older adults with mental retardation identified techniques agencies had developed to foster person-centered planning and community inclusion and systemic factors affecting these outcomes (Anderson & Factor, 1993;Factor & Anderson, 1992).State developmentaldisabilities planning councils. providers associations, and state mental retardation agencies and consumer agencies nominated 189 programs. Analyses based on responses from 102 of these programs indicated that an exemplary feature across these programs was a commitment to personcentered planning and programming. Specific features included training individuals on choice making, sensitizing staff and families to the importance of autonomy in choicemaking, providing information about community resources

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and service options to individuals with mental retardation, and providing assistive technologies. Factors facilitating person-centered approaches were flexibility in hours of day program attendance and use of volunteers to enhance community participation. The major obstacle lo person-centered planning was the inability of funding to follow the individual rather than the program and the individual’s lack of income to participate in community activities. Although nearly every MIUDD state agency surveyed (87%) espoused individualized person-centered planning, the actual degree of person-centered planning diverged widely from this philosuphy. Over 40% of the states noted that habilitation planning remained driven by the professional interdisciplinatyteam and that service options were limited so that individuals and families in reality had little input. B.

Federal Legislation

Recent federal legislation has supported the collaboration and integration of the aging and MR/DD service systems. These have included recent amendments to the Developmental Disabilities Assistance and Bill of Rights Act (P.L. 100-142) and the OAA (P.L. 89-73). These amendments have fostered collaborative program planning and development at the state level and integration of older persons with mental retardation and their families in generic aging programs. Other legislation likely to significantly influence future services for older persons with mental retardation include the Nursing Home Reform Amendments of the 1987 Omnibus Budget Reconciliation Act (OBRA-87) Public Law 100-203, and the Americans with Disabilities Act of 1990 (ADA). The Nursing Home Reform Act addresses the inappropriate placement of people with mental retardation by regulating states to relocate residents to other settings or to provide specialized services. In fiscal year 1988, nursing facilities accounted for 16% (41,000 to 51,000 residents) of out-of home placements for persons with mental retardation (Mitchell & Braddock, 1990). Over half of these people are over the age of 50 (Lakin, Hill, & Anderson, 1991). The ADA prohibits discrimination against individuals with disabilities in enjoyment of goods, services, facilities, privileges, and public accommodation. It has the potential for improving financial well-being through increased competitive employment, which could improve financial security upon retirement. The law also states that a public entity may not deny a qualified individual with a disability the opportunity to participate in service programs or activities. It could affect access to senior centers and to other community support services.

C.

States’ Fiscal and Programmatic Commitments

To date few states have demonstrated a fiscal commitment to serving the needs of older adults with mental retardation. A national study of states’ public spending

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for MRDD services (Braddock et al.. 1995) identified nine states that funded discrete aging initiatives in fiscal year 1988. Factor (1993) conducted detailed case studies of these states to identify the factors contributing to their fiscal efforts in aging. Major catalysts included restructuring of adult day services, large-scale deinstitutionalization movements. mandates regarding mental health services for older persons, and advocacy efforts by specific staff. Seltzer and Krauss’s (1987) earlier national survey had noted that the growth of state programs for older adults was associated with the number of older persons with mental retardation, the size of the community residential services system, and developmental disabilities planning council funding of special aging projects. In their national survey of interagency planning and program developmentfrom the perspectives of State Units on Aging. Factor and Anderson (1992) found that most states are at the formative stage of such joint planning and service provision. The most frequent area of collaboration centers on integrating older adults with mental retardation into senior center activities and nutrition site programs. More recent efforts center on unified approaches to address managed care.

D.

Service Programs

1. RESDENTIAL SERVICES

The nation’s residential service system for persons with mental retardation has undergone a fundamental transformation during the past two decades. Currently, less than 20% of persons with mental retardation live in residential programs (Fujiura, 1996), and typically these persons have more severe levels of disability. Since 1967, the institutional census has been in steady decline as communitybased service networks have expanded. In 1977, a decade after the institutional population peaked in the United States, 84%of persons in MRDD residential programs were still located in large congregate facilities (207,000 in large versus 40,000in small 15-bed or less facilities) (White, Lakin, & Bruininks, 1989). By 1992 more persons were living in smaller versus larger residences (170,077 versus 165,119) (Braddock et al., 1995). In the last two decades the population of the large congregate facilities is considerably older than that served in the past, with the percentage of adults increasing from 49% in 1964 to 83% in 1985 (Scheerenberger, 1979, 1986). This is likely a result of reluctance to place young children in large facilities and reluctance to transfer older persons who have lived in these facilities most of their lives. The characteristics of younger persons in large facilities today are very different than in the past, being a group of persons who are either medically fragile or with severe behavioral problems. Several national and state-wide surveys have documented the residential placement patterns of various age cohorts, including older adults with mental retardation. For example, Janicki and MacEachron (1984) compared residential placements of three age cohorts (53-62.63-72. and 73-79) in New York and found that

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with increasing age, there were increases in the percentage of persons living in institutional settings, foster homes, and adult board and care homes. The percentage of persons living in community-based, family home, and independent living decreased with age. Other studies have noted that older persons with mental retardation are more likely to be placed in more restrictive settings than younger persons despite comparable levels of adaptive behavior (Baker, Seltzer, & Seltzer, 1977; Moss, Hogg, & Home, 1989; Seltzer, Seltzer, & Shenvood, 1982). Seltzer and Krauss’s (1987) national survey found that older adults lived in the following community residential settings: group homes (41%), intermediate care facilities (24%). foster homes (14%), apartments (10%). and mixed residential programs (1 1%). A recent survey, including responses from 47 states (Martinson & Stone, 1993), identified 13,007 older adults (age 60 years and older) with mental retardation residing in state-funded small-scale (less than 15 residents) community living options and another 5426 older adults residing in federally funded community living options. The most common state-funded residential option was board and care (27%) followed by group homes (14%) and personal care homes (14%). The most common federally funded option was intermediatecare facilities for persons with mental retardation (52%) followed by foster care (22%) and by group homes (19%). Despite the increase in fiscal resources, there has been little growth in the residential service system. However, demographic trends suggest an increasing need for residential services, particularly for older adults. Fujiura and Braddock (1992) noted that as the postwar “baby boomers” enter middle age, aging family members will be less able to continue their care. Also, the increased life span of persons with mental retardation will place increased pressure on the residential service system. Hayden’s survey ( 1992) reported that 60,876 persons were waiting for residential services in 37 states. This represents only those people who have had official contact with state mental retardation system, and thus is most probably an underestimation of the potential desire and/or need for services. Furthermore, there are over 165,000 residents of large public and private mental retardatioddevelopmental disabilities facilities and 41,429 nursing home residents with mental retardation, many of whom are expected to move into family-scale residential alternatives (Braddock et al., 1995). Unlike general nursing homes residents, most residents with m e n d retardation were not placed in nursing homes for health reasons and hence are appropriate candidates for an alternative living anangement (Mitchell & Braddock, 1990). Although there have been national and state surveys describing the community and institutional residential service system for older adults, there have been no national epidemiological studies that document the demographics of older persons with mental retardation living independently or with their families.Also, few studies have examined the effectiveness of various living options in improving the functioning and life satisfaction of older persons with mental retardation.

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2. VOCATIONAL, DAY SERVICES, AND RETIREMENT PROGRAMS Many adults with mental retardation lack regular involvement in day activities, A recent national survey (Hayden, 1992) reported 35,095 people on waiting lists for day habilitation or vocational services in 32 states, suggesting a sizable unmet need. Also, most nursing home residents with mental retardation are unemployed with little involvement in vocational or day programs (Heller & Factor, 1993b; Mitchell & Braddock, 1990). In a national survey of persons with developmental disabilities (Jaskulski, Metzler, & Zierman, 1990), 90% of adults over age 16 felt they had the ability to work. Yet the majority assessed their current productivity as low. In their national survey of services for older persons with mental retardation, Seltzer and Krauss (1987) found that the major community day program options included day activity (27%), vocational day activity (26%). supplemental retirement (22%), leisure and outreach (13%), and senior citizens program (12%). Sutton, Sterns, and Park (1993) documented the increase in retirement programs for older adults with mental retardation. Their survey of 63 Ohio counties serving nearly 1500older (age 55 years and over) adults with mental retardation identified 57 retirement programs, whereas in 1984 a similar survey only identified 7 such programs. The retirement programs included 25 full-time and 32 part-time programs. At least two-thirds of these programs included some activities in senior centers and nutrition sites. Existing retirement program models employ a variety of approaches that bridge the aging and MR/DD service systems (Janicki, 1991). These include senior centerkenior companion programs, adult day care, and preretirement education. The senior centerkenior companion model aims to facilitate community inclusion by using staff, volunteers, or friends as mentors to involve older adults with mental retardation in senior centers and other community activities. The Adult Day Care model integrates older adults with mental retardation with severe impairments who cannot participate in senior center activities into the aging network. The Seniors Day Program, which has been used mostly in New York, is primarily based on a medical model targeted for persons with dementia. The third model, preretirement education, aims to orient older adults to later life issues and to expand their awareness of retirement issues, including knowledge of community resources, choicemaking skills, and leisurehecreational activities (Cotton & Cotton, 1992; Heller et al., 1996). Most of the literature on these program models has included case studies and descriptive data. A few studies have reported some evaluation data conducted only on participants. For example, Roberts (1990) reported increased quality of life (on scales developed by the research team) among Senior Companion Program participants. Similarly, Calkins and Kultgen (1987) evaluated a seniors companion program through pretests and posttests, which indicated increases in social inte-

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gration, enhanced self-esteem, increased range of activities, and greater interagency cooperation. The Heller et al. (1996) Later Life Planning study is one of the only studies that has empirically examined the effectiveness of a retirement program model using a comparison pre-posttest design. As noted earlier, this preretirement program resulted in increased competencies and leisure activity participation for participants living ar home, but also included increased residential dissatisfaction. Given that many adults with mental retardation are underemployed or involved in sheltered workshops where they receive low or no pay (Ellis & Rusch, 1991), the prospect of retirement may take on different meaning that it does for persons who have been employed all their lives. Retirement in this context seldom refers to an actual exit from a work role. Unlike the general population, older persons with mental retardation are not likely to have any pension benefits after retirement. In two studies that included interviews with older adults with mental retardation the majority wanted to continue: working rather than retiring (Factor, 1989; Heller et al., 1993).The major reasons were the money earned and the camaraderie of the workplace (Factor, 1989).

3. HEALTHCARE The earlier review documented the diverse health-care needs of older adults with mental retardation. Persons who have more severe mental retardation and who experience age-related declines in physical health are likely to require more health care. In terms of the service delivery system, health care for institutional residents has improved in recent years (Crocker, 1992). These individuals represent a small minority of the population with mental retardation, but their medical care expenses are much higher than those of persons who live in the community (Rubin, 1987).Hayden and DeFaepe’s (1991)review of health-care studies reports that persons with similar medical conditions to those treated in institutions also can be successfully treated in the community.However, methodologicalproblems, including different categories of health conditions and different sample characteristics across studies limited the: inferences they could make. Major service gaps noted in various studies of persons with mental retardation living in the community have included dental care (.laskulski, Metzler, & Zierman, 1990),home-based medical care, and gynecological care (Minihan & Dean, 1990). A few studies have examined the specific health-care needs and services of older adults with mental retardation. Jacobson, Janicki, and Ackerman (1989) found that adults over age 60 years were not receiving more health-related services than those age 45-59 years. However, there were differences in types of services used, with the older adults using more community practitioner and hospital services and less dental services than the younger adults. Those adults who lived with families had the least access to health services. Edgerton (1994) documented the difficulties that older adults with mild mental

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retardation living in the community have in obtaining appropriate medical care. His longitudinal ethnographic study spanning from 1960 to 1992indicated that inadequate health care is a major threat to their ability to maintain independence. Common problems included recognition that a threat to health exists, locating medical care, communicating symptoms, and understanding and complying with medical instructions. Many adults with mental retardation living in independent settings (in comparison with those in more restrictive settings) have poorer health habits and higher obesity (Rimmer, Braddock, & Fujiura, 1993), with the highest rate of obesity for adults living in the natural home (55%). Responding to the health-care needs of older adults with mental retardation who live in the community presents a number of challenges.A major need is for greater training of professionals in identifying their health-care needs (Jaskulski et al., 1990).A needs assessment of over 40 families who were National Association for Down’s Syndrome members (McGuire, 1991) indicated that their major health concerns for their adult child centered on health-care availability, the need for health screening, and on finding physicians who were knowledgeable about conditions occurring more frequently with Down’s syndrome and who would serve adults versus children. Other major barriers to health care for this population are lack of transportation to medical sites and lack of financial resources (Edgerton, 1994). Although most of these adults are eligible for Medicaid, many providers do not treat Medicaid patients (Minihan & Dean, 1990). Edgerton reported that less than 4% of California’s physicians treat Medicaid patients. 4. TECHNOLOGICALADVANCES There has been a proliferation of technological advances in the rehabilitation field. Assistive technology includes compensatory strategies and adaptive devices that increase, improve, or maintain individuals with disabilities(Galvin & Phillips, 1990). This includes use of equipment (e.g., communication devices, wheelchairs), procedures (e.g., training in using technology), and adaptive strategies (e.g., new ways to perform tasks). Age-related physical declines can lead to functional barriers such as decreased mobility, communication, self-care skills, and ability to work. Technology for persons with mental retardation can provide potential benefits, including facilitation and automation of therapeutic regimens, continuation of physical activities, and increased social inclusion (Parette & VanBiervliet. 1992).They can be assisted to live more independently through devices that make their lives simpler. Assistive technology can also prolong independence in self-care activities as individuals experience age-related losses in functional skills (Galvin & La Buda, 1991).We do not yet know to what extent older persons with mental retardation can benefit from assistive technology. Despite the technological advances made, most elderly persons do not avail themselves of these technologies. In addition to funding concerns and lack of

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knowledge about existing equipment, most older consumers are reluctant to buy products that connote disability (La Buda, 1988). However, Mann, Karuza, Hurren, and Tomita (1993) noted that this trend may be changing. They interviewed 86 elderly, noninstitutionalized nndividualsin the general population regarding the types of assistive devices they needed and used. The average number of devices used included 12 for people with visual impairments, 10 for people with physical impairments,and 6 for people with cognitive impairments (with either acquired or congenital cognitive deficits). They found a high level of unmet need, an average of two needed devices per person. Among these three groups, the persons with cognitive deficits were the most dissatisfied with their assistive devices, with dissatisfaction noted for one-third of the devices they owned. The need for assistive device:samong persons with mental retardation has been noted in several studies. In a survey of Illinois adults with mental retardation receiving home-based support services, the most common item that participants desired to purchase was adaptive equipment (Heller, Smith, Kopnick, & Braddock, 1992).Parette and Vadiervliet (1992) found that persons with mental retardation express a need for devices that assist with self-help, homemaking, work and recreational activities, and mobility. To date there have been very few empirical studies of the unique needs of aging persons with mental retardation for assistive technology. One study (Mendelson, Heller, & Factor, 1995) found that residents with mental retardation in nursing homes had not received needed assistive technology. Fewer than 15% of residents with mobility impairments and 4% of those with communication limitations were using assistive devices. We have little information on how needs change based on severity of diagnosis and associated health conditions, on the effectivenessof these interventions in ameliorating or preventing loss of function or in enhancing independent living, and on the cost of providing these devices and strategies.

VIII.

FUTIJRE RESEARCHAGENDA

This chapter has shown how demographic changes among the general population and among persons with mental retardation and changes in service trends and technology have shaped the research and service programs directed at this population. The research reviewed pointed to major findings in age-related changes among individuals with mental retardation in terms of their health and emotional well-being, their family and other support systems, and their later life preferences. These have included findings thlat age-related health and behavioral changes vary widely between subgroups of persons with mental retardation, with precocious aging only occurring for some subgroups. Furthermore, families, who are the main providers of care for these adults, have also varied widely in their ability to continue caregiving. There remain wide gaps in ow knowledge about aging and mental retardation.

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Methodological limits of many of the studies reviewed in this chapter reduce their generalizability and their explanatory power. These include failure to differentiate subgroups of people with mental retardation, reliance on restricted samples and cross-sectional data, and lack of empirical evaluation of programs serving this population. As indicated in this review there is a need for further research on differential aging patterns of various subgroups,in particular for persons with Down’s syndrome, cerebral palsy, epilepsy, and for varying levels of mental retardation. Much of the past literature on age-related changes has not differentiated these subgroups, resulting in conclusions that are less meaningful. Most of the research that has examined subgroups based on etiology has focused on Down’s syndrome. Age-related changes among other subgroups, such as those with autism or epilepsy, have been rarely studied. Although there is a body of research describing this population’s service needs and the service delivery system, there have been very few studies examining the effectiveness of various program models, therapeutic interventions, or assistive technologies in preventing or ameliorating age-related declines and in improving quality of life. Generalizability of findings would be improved by studies with larger samples that include other populations that have been largely neglected. These include persons living in independent settings,families who are not linked with the service system, and persons of varying socioeconomic status and racidethnic backgrounds. There is a need for studies that take into account multiple perspectives of not only staff and parents, but also of persons with mental retardation themselves. Their perspective is critical in understanding their later life preferences and their life satisfaction. Finally, longitudinal studies including a life span developmental perspective are needed to account for differential mortality effects, sampling biases, and age cohort effects present in cross-sectional studies. Another approach, which is often more feasible, is the use of cross-sequentialstudies that can examine the entire life span over fewer years. Prospective studies can shed light on both the stable and the changing aspects of the lives of persons with mental retardation as they age. ACKNOWLEDGMENTS The p r e w o n of this chapter was supported in part by funds provided by the National Institute on Disability and Rehabilitation Research, Rehabilitation Research and Training Center on Aging with Mental Retardation. Grant No. H133B30069.

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