MENTAL RETARDATION

Vol.

34, No.2, 83-93, April 1996

Marty Wyngaarden Krauss, Marsha Mailick Seltzer, Rachel Gordon, andDonna Haig Friedman

caregivers or sources of support and describingtheir current roles in the lives of their brotheror sister with mental retardation constitutes animportant agenda on which future policy de-velopment may be based (Griffiths & Unger,1994; Stoneman & Berman, 1993).

Our focus on siblings emanates from a rec-ognition of the centrality of the family in thelives of persons with mental retardation. Mostchildren and adults with mental retardation(85%) live with or under the supervision oftheir parents for most of their lives (M. Seltzer& Krauss, 1994). However, the rate of out-of-home placement increases with advancing age(Eyman, O'Connor, Tarjan, & Justice, 1972),and, therefore, the prevalence and durability offamily-based care warrant close scrutiny. Al-though studies of parental involvement andconcerns at different stages of the life courseare now available (Heller & Factor, 1994; M.Seltzer & Krauss, 1989; Shonkoff, Hauser-Cram,Krauss, & Upshur, 1992; Smith, Fullmer, &Tobin, 1994), there is far less research on theeffects on siblings of continued family care-giving throug,hout the adulthood of theirbrother or sister with mental retardation.

Research has shown that the informal sup-

I n this paper, we have examined the charac-teristics and current involvement of adult sib-

lings who have a brother or sister with mentalretardation co~residing with their aging parents.We also examined the nature of the futurecaregiving roles that siblings anticipate forthemselves when their parents are no longerable to provide full-time home-based care.These two issues (current involvement of sib-lings and the potential intergenerational trans-mission of care giving) are of critical importanceto policy makers, family members of personswith mental retardation, and the service pro-viding community.

Siblings have been virtually ignored in theresearch and policy literatures as sources of sup-port for adults with mental retardation. Instead,the focus has been more sharply focused on pa-rental care giving across the life course (Heller& Factor, 1991, 1993; M. Seltzer & Krauss,1994; Suelzle & Keenan, 1981). The impactson mothers and fathers of sustaining a "career"as an active parent is an important area for re-search. However, the inevitability of the endof~bis~~r~er,~br9~gh ~ jtherp~r~nt~l Jnfirmi tyor death, is a painful reality. Understanding theperspectives of adult siblings as potential future

83Mental Retardation, April 1996

the involved siblings. Indeed, there is evidencethat active involvement with a brother or sis-ter with mental retardation has salutary effectson mother's well-being (G. Seltzer, Begun, Selt-zer, & Krauss, 1991).

After the parents are no longer able to bethe primary caregivers, adults with mental re-tardation may either move in with a sibling orlive in a nonfamily setting, such as an apart-ment or group home. The potential intergenera-tional transfer of care giving responsibility fromparents to other children (without disabilities)is an issue of increasing importance (Powell &Ogle, 1985). In their study of actively involvedsiblings, Griffiths and Unger (1994) reportedthat almost half (44%) of 41 adult siblings ofpersons with mental retardation were willing rotake on future caregiving responsibilities if nec-essary. They found that family communicationand parental approval were associated with sib-lings' future plans to be direct caregivers.

In our longitudinal study of aging familiesof adults with mental retardation, we have ex-plored a variety of aspects of current sibling re-lationships and expectations regarding futurecaregiving roles. In the present paper we havefocused on a subs ample of 140 siblings whosebrother or sister with mental retardation livesat home with their aging parent(s). Results arepresented with respect to two groups of fami-lies: (a) those in which a sibling expects to livewith the brother or sister with mental rerarda-tion after the parents are no longer able to pro-vide care and (b) those in which the siblingexpects to live apart from the brother or sister.We proposed three research objectives. First, weexamined differences in the two groups of fami-lies with respect to characteristics of the sib-lings, the adult with mental retardation, and theaging mother. Our second objective was to de-termine current patterns of involvement andsupport provided by the sibling to the brotheror sister with mental retardation and to ascer-tain whether these patterns were related to sib-lings' future role expectations. Finally, wedeveloped a multivariate model predicting sib-lings' future role expectations as either intend-ing to co-reside with their brother or sister withmental retardation or ro live apart.

port networks of adults with mental retardationwho live at home are composed primarily ofother family members, particularly parents andsiblings (Krauss, Seltzer, & Goodman, 1992).Thus, information about the context and qual-ity of relationships within the family during theadulthood of a person with mental retardationis critical to an understanding of their life ex-perience and may be extremely useful in plan-ning supportive services. The likelihood and/orwillingness of adult siblings to assume more di-rect and personal responsibility in the future fortheir brother or sister with mental retardation maywell be affected by their current patterns of inter-action (Griffiths & Unger, 1994; Powell & Ogle,1985; Stoneman & Berman, 1993).

letlin (1986) described a considerablerange in the degree of emotional connectednessamong adult siblings and their brother and sis-ter with mental retardation. After participantobservation of 35 adults with mental retarda-tion and their siblings, she characterized fivetypes of relationships, ranging from intenselyclose relationships (where siblings assumed sur-rogate parent roles) to extremely acrimoniousrelationships (where siblings maintained virtu-ally no contact with their brother or sister withmental retardation). None of the relationshiptypes was balanced (i.e., evenly reciprocal) inthe exchange of emotional and instrumentalsupport. Rather, sibling relationships were hi-erarchical (rather than egalitarian), sensitive toparental expectations and influences, and in-cluded a strong emotional dependency of theadult with mental retardation on his or her sib-ling without mental retardation.

Grossman's (1972) seminal study of siblingsrevealed that there is often one sibling withina family who develops a particularly strong bondwith the brother or sister with mental retarda-tion. This "most involved" sibling is often anolder sister who reports having spent a great dealof time helping in the care of her brother orsister with a disability during her childhood.Although some studies portray siblings of per-sons with mental retardation as affected nega-tively by their experiences and as being at riskthemselves for psychological distress (Breslau,1982; Lobato, 1983; McHale & Gamble, 1989),there is accumulating evidence regarding thepositive and valued aspects of having a siblingwith a disability (Cleveland & Miller, 1977;Wilson, Blacher, & Baker, 1969l.Sibling in-volvement during adulthood may have positiveeffects on the parental generation as well as for

Method

SampleOur longitudinal study of aging families was

begun in 1988 and thus far has included five

84 Mental Retardation, April 1996

due to co-residence. We also excluded 41 sib-lings whose brother or sister with mental retar-dation had moved away from their parents'home to a nonfamily setting prior to the thirdwave of data collection because the sibling'scurrent involvement and anticipated futurecaregiving roles may be constrained by the ser-vices and supports provided in the post-placement setting.

The siblings who participated in our studywere asked to describe their plans for future in-volvement with their brother or sister withmental retardation after the parents are nolonger able to provide primary care. Three cat-egories of plans for future involvement were (a)having the brother or sister with mental retar-Qation move to the sibling's home, (b) livingapan (including having the brother or sist~r livewith another family member, in a communityresidence, independent living), and (c) no firmplans at the present time. Siblings were thenasked where they thought the best setting wasfor the brother or sister with mental retarda-tion to live. On the basis of the responses tothese two questions, we identified three groupsof siblings. Group 1 consisted of 51 siblings(19.0%) who expected to co-reside with theirbrother or sister with mental retardation andfelt that this was the best arrangement. Group2 consisted of 89 siblings (33%) who expectedthat their brother or sister would live in an out-of-home setting or with another relative, andthey felt that was the best arrangement. Group3 consisted of 129 siblings (48%) who said they"don't know" where their brother or sister withmental retardation will live or gave inconsis-tent responses to the two questions (e.g., saidtheir brother or sister would live with familybut said the optimal placement was a commu-nity residence). Because one of our central goalsin this p~per was to identify predictors of fu-ture role expectations, only those 140 siblingswho had a clear plan to either co-reside with orlive apart from the brother or sister were in-cluded in this analysis (ns = 51 and 89, respec-

tively).

Procedure and Measures

A self-administered questionnaire wasmailed to all participating siblings. Demo-graphic information was collected on gender,birth order, age, level of education, marital sta-tus, parental status, employment status, andfamily income. Codes for all study variables are

in-home visits (once every 18 months). Thesample initially included 461 families, all ofwhom volunteered to participate. In each ofthese families, the mother was at least 55 yearsof age (mean age = 66) and had an adult son ordaughter with mental retardation living at homewith her when the study began. Half of themothers live in Wisconsin and half live in Mas-sachusetts. Their sons or daughters with men-tal retardation were, on the average, 33 yearsof age when the study began. The majority ofadults have mild (29.7%) or moderate (44.2%)retardation; the remaining have severe (18.1 %)or profound (8.0%) retardation.

We are attempting to understand familywell-being using a multidimensional frameworkthat includes the perspectives of the mother,the father, up to two siblings in each family, andthe son or daughter with mental retardation.In this paper we have used data collected fromthe mother and from one sibling in order tomaximize the size of the sample. Many mothersin our sample are widows (28%) or divorced(6%), and 35% of the adults with mental retar-dation could not be interviewed due to limita-tions in their communication skills. Thus, inorder to maintain as large a sample of mothersand siblings as possible, we did not include datafrom fathers or from the adults with mental re-tardation in this paper.

During the third wave of interviews, themothers were asked to identify one of their otheradult children with whom their son or daugh-ter with mental retardation had an especiallyclose relationship. Of the 431 families studiedat Time 3, 329 participated in our sibling study.Of the nonparticipants, 31 of the mothers hadno other children and, thus, were not includedin the study of adult siblings, 47 mothers de-clined to name one of their children for thisstudy, and 24 siblings declined to participate.Of the 329 participating families, in 253 fami-lies the participating sibling was designated bythe mothers as being "most involved" with thebrother or sister with mental retardation, andin 76 families, there was only one other childin addition to the child with mental retarda-tion, and this sibling was invited to participate.Thus, the sample of siblings included 329 adultbrothers and sisters.

For this paper, we excluded 19 siblings whocurrently .live in the parental home with thebrother or sister with mental retardation be-cause their day-to-day involvement is elevated~

85Mental Retardation, April 1996

presented in the tables that appear later and arebriefly summarized here.

Information regarding the characteristics ofthe brother or sister with mental retardation andtheir mothers was collected during interviewswith the aging mothers. Measures of the char-acteristics of the brother or sister with mentalretardation were age, gender, number ofbehav-ior problems, health status, level of mental re-tardation, and whether he or she was on awaiting list for residential placement. Measuresof the mother's characteristics were age, mari-tal status, health status, and number of childrenin her family in addition to the adult with men-tal retardation.

Measures of adult siblings' current involve-ment with their brother or sister with mentalretardation were a rating of the frequency of.their visits and telephone contact as well as thenumber of shared activities during the preced-ing year (e.g., going to a restaurant, accompa-nying to doctors' visits, spending an overnightvisit in the responding sibling's home). Alsoassessed was the distance between the sibling'shome and that of their mother and whether thesibling had a discussion during the precedingyear with the parents regarding the future needsof their brother or sister with mental retarda-tion. Siblings rated their level of knowledgeabout their brother or sister's skills and needsin eight areas (e.g., the ability to perform dailyliving skills, his or her residential needs). Fi-nally, siblings indicated whether they expectedto become the legal guardian of their brotheror sister with mental retardation.

HypothesesWe posed a number of specific hypotheses

to investigate the first research objective forwhich characteristics of siblings, adults withmental retardation, and aging mothers werecompared in families in which the sibling in-tended to co-reside with the brother or sisterwith mental retardation and families in whichthe sibling intended to live apart. We hypoth-esized that sisters would be more likely thanbrothers to expect to co-reside with the brotheror sister with mental retardation and would beolder than siblings who expected to live apart.We also hypothesized that the expectation offuture co-residence would be more commonamong siblings who had established their adultlives, as indicated by being married, havingchildren of their own, and being employed.

Engagement in these primary adult roles mayprovide the residential, familial, and economicstability necessary to sustain additional care-giving roles.

Regarding differences between the twogroups of families in the characteristics of thebrother or sister with mental retardation, wehypothesized that those siblings whose brotheror sister had less severe retardation, was in bet-ter health, and had fewer behavior problemswould be more likely to plan future co-resi-dence. These characteristics translate into fewerdaily care giving needs, which would be easierto accommodate within siblings' adult lives. Wealso hypothesized that siblings would be morelikely to plan to co-reside with a sister withmental retardation than with a brother. In ad-

., dition, we hypothesized that siblings would beless likely to plan to have their brother or sisterwith mental retardation live with them if theirparents had added the brother or sister's nameto a waiting list for residential placement. Fi-nally, we hypothesized that the sibling's expec-tation of future co-residence was more likelywhen the mother was older, widowed, in poorerhealth, and had fewer children because an adultsibling would be more likely to anticipate co-residence when his or her mother's physical andsocial circumstances were more precarious.

In conjunction with our second researchobjective, we first hypothesized that siblingswho expected to co-reside in the future wouldhave a higher level of current involvement withtheir brother or sister with mental retardationthan would those who expected to live apart.That is, we hypothesized that they would livecloser to the mother's home, have more frequentcontact with their brother or sister, participatein more activities with him or her, be morelikely to have had a recent discussion with theirparents regarding future planning, and be moreknowledgeable about their brother's or sister'scurrent needs in order to position themselvesfor a future primary caregiving role. Further, wehypothesized that siblings who plan to live withtheir brother or sister would be more likely toplan to be his or her legal guardian.

For the third research objective, for whichwe developed a multivariate model of futureplans, we examined four domains of predictorsof future role expectations: characteristics of themother, characteristics of the adult with men-tal retardation, characteristics of the sibling,and the level of current involvement of the sib-

86 Mental Retardation, April 1996

ling and the brother or sister with mental re-tardation. This multivariate model reflects ourview that the decision by a sibling to have abrother or sister with mental retardation livewith him or her is complex and a function ofmultiple family and individual forces. There-fore, we examined how the characteristics ofeach family member-mother, adult with men-tal retardation, and sibling--contribute to asibling's future intentions either to co-reside orto live apart.

Table 1Sibling Characteristics by Future Role

Co-reside ApartCharacteristic. (n = 51) (n = 89)

Gender (%)Male (0) 23.5 40.4Female (1) 76.5 59.6

Birth order (%)Older (0) 66.7 68.5Younger (1) 33.3 31.5

Age (mean) 38.8 40.0Education (%)High school graduate (0) 23.5 22.5Post high school (1) 76.5 77.5

Marital status (%)Not married (0) 19.6 20.2Married (1) 80.4 79.8

Parental status (%)Has no children (0) 25.5 24.7

'Has children (1) 74.5 75.3Employment status (0;0)Not employed (0) 13.7 15.7Employed (1) 86.3 84.3

Family income (mean annual) $39,783 $39,779

.Numbers in parentheses are codes.

mother's physical and social circumstances weremore precarious (i.e., they had poorer health,were widowed, were old, and had fewer adultchildren). Also, we hypothesized that siblingswould be less likely to plan to co-reside with abrother than with a sister with mental retarda-tion and when the adult was on a waiting listfor residential placement. The comparisons arepresented in Table 2.

As we hypothesized, there were gender dif-ferences between the two groups, with a higherproportion of those who expected to co-residebeing sisters than those who expected to liveapart, r = 4.75, P = .030. Those whose siblingsexpected them to co-reside had significantlyfewer behavior problems than those whose sib-lings expected them to live elsewhere, t( 133) =2.17, P = .032. Counter to our hypotheses, therewere no differences between the two groupswith respect to the health status or level ofmental retardation of the brother or sister. Con-sistent with our hypotheses, adults whose sib-lings expected to co-reside were significantlyless likely to be on a waiting list for residentialplacement than were adults whose siblings ex-pected them to live in separate households, Xl= 4.11, P = .043. It was noteworthy, however,that even among the group of siblings who in-tended to co-reside, 22% had parents who hadput the adult's name on a waiting list for pub-licly supported community residential services.

Results

Characteristics of Family Members andExpected Future Roles of Siblings

Of the 140 siblings with definite plans toeither co~reside with the brother or sister withmental retardation or to live apart, two thirds(68%) were sisters and the same percentage(68%) were older than their brother or sisterwith mental retardation. In general, the modalsibling was an .older sister (45%), about 40 yearsof age (range = 23 to 60), with some educationbeyond high school (77%), married (80%), withchildren of her own (75%), working either full~time (73%) or part~time (11 %), and having anannual family income of over $40,000 per year.

We compared the 51 siblings who intendedto co~reside with their brother or sister withmental retardation and the 89 siblings who in~tended to live apart with respect to these back-ground characteristics (see Table 1). We foundthat, counter to our hypotheses, the two groupswere remarkably similar, with no significantdifferences with respect to birth order, age, levelof education, marital status, whether they havechildren of their own, whether they are cur~rently employed, or annual family income. Theonly characteristic on which the groups signifi-cantly differed was gender, Xl = 44.12, P = .04.More than 75% of the siblings who plan to livetogether were sisters as compared with 60% ofthose who plan to live apart.

Next, we examined whether the character~is tics of the brother or sister with mental retar~dation and of the aging mother were related toadult siblings' future role expectations. As notedearlier, we hypothesized that siblings would bemore likely to expect to co-reside when thebrother or sister with mental retardation posedfewer caregiving demands (i.e., they were inbetter health and had less severe retardation andfewer behavior problems) and when the

R7

Mental Retardation. Aoril1996

Table 2Characteristics of the Brother/Sister WithMental Retardation (MR) and of the Aging~other by Future Role Expectations

Co-reside(n= 51)

Apart~89)Characteristic.~

Brother/sister with MR-Gender (%)

Male (0)Female (1)

Behavior problemsb (mean)Age (mean)Health status (%)

Not excellent (0)Excellent (1)

Level of MR (0;0)Severe/profound (0)Moderate (1)Mild (2)

Waiting list (0;0)No (0)Yes (1)

Aging motherAge (mean)Marital status (%)

Not married (0)Married (1)

Health status (%)Not excellent (0)Excellent (1)

No. other children (mean)

45.154.9

1.2736.6

64.036.0

1.9136.6

65.334.7

62.837.2

20.438.840.8

29.247.223.6

78.421.6

61.838.2

69.1 69.4

42.657.4

38.661.4

72.028.03.98

86.513.54.24

"Numbers in parentheses are codes. bRange = 0 to 8.

Whether this represents a back-up plan or adifference between parents and siblings in theirview of the optimal future living arrangementof the adult cannot be determined from thesedata. It does suggest, however, that in somefamilies, multiple perspectives and plans mayco-exist regarding what will happen when theparents are no longer the primary care provid-ers. The last set of comparisons we conductedfor the first research objective concerned moth-ers' characteristics. Counter to our hypotheses,no differences were found between the twogroups with respect to the age, marital status,health status, and family size (number of otherchildren) of the mothers.

the sibling and the brother or sister with men-tal retardation. Fully 30% of the siblings saidthat they spoke to their brother or sister on thephone at least weekly, and 41 % said they vis-ited at least weekly. Only a few (2%) said thatthey had not seen their sibling during the pre-ceding year. Over half (58%) of the siblingslived within a 30-minute drive from their par-ents' home.

With respect to shared activities during thepast year, most of the brothers or sisters withmental retardation (78%) visited at the sibling'shome at least once, and almost half (44%) werereported to have had at least one overnight visit.The most common shared activities were going.to a restaurant (63%), shopping (56%), visit-;ng another relative or friend (44%), and goingto a movie (44%). The least common activitieswere going on a vacation together (14%) or toa doctor's appointment (15%).

Given the pattern of regular and variedactivities between adult siblings and theirbrother or sister with mental retardation, weexamined the degree to which adult siblingsperceived themselves as informed or knowledge-able about the current skills and service needsof their brother or sister with mental retarda-tion. Over half felt "very well informed" aboutthe daily living skills (59%), residential needs(54%), and interpersonal skills (49%) of theirbrother or sister. Fewer felt as well informedabout the following kinds of needs of theirbrother or sister: social/recreational (37%),physical health (33%), vocational (32%), fi-nancial (31%), or mental health (28%). Manyof the siblings (67%) expected to be the legalguardian of the brother or sister with mentalretardation.

As shown in Table 3, we found a strongpattern of differences with respect to currentlevel of involvement between siblings who ex-pected to co-reside with the brother or sisterwith mental retardation in the future and thosewho expected to live apart. As a group, thosewho expected to co-reside had more frequentcontact (in person and by telephone) with theirbrother or sister, r = 7.95, P = .005, and par-ticipated in more activities with him or her thandid siblings who planned to live apart, t = 4.01,P < .001. Siblings who expected to live togetherwere more likely to report having had a discus-sion during the preceding year with their par-ents regarding the needs of their brother or sisterwith mental retardation, r = 6.38, P = .012, to~

Current Patterns of Involvement and Supportand Siblings' Future Role Expectations

For our second research objective. we ex-amined current patterns of involvement andsupport provided by the sibling to the brotheror sister wichmental retardation and investi-gated whether these patterns were related tosiblings' future role expectations. There was ahigh level of current personal contact between

88 Mental R..rn..tlnr;"n A n~; I 1001;

feel knowledgeable about the brother or sister'sskills and needs, t = 2.17, P = .031, and to plan

to be his or her legal guardian than those whoplanned to live apart, X2 = 34.71, P < .00 1, allconsistent with our hypotheses. There was nodifference between the groups in the distancebetween the sibling's and the mother's home.

Table 3Siblings' Current Involvement and Support fortbe Brotber/Sister Witb Mental Retardation byFuture Role Expectations---~

25.574.5

51.348.7

5.55 4.07

62.737.3

55.144.9

19.680.4

40.459.6

2.38 2.17

Frequency of contact withsibling (%)bLess often than once/week (0)Weekly (1)

No. of shared activities in past

year (mean)CDistance to mother's home (%)<30 minutes (0)>30 minutes (1)

Recency of discussion withparents(%)

Over 1 year (0)Within 1 year (1)

Knowledge of skills andneedsd (mean)

Plan to be legal guardian (%)No (0)Yes (~

2.098.0

50.649.4

Predictors of Future Role Expectations

For our third research objective, we con-ducted a multivariate analysis of the predictorsof siblings' future role expectations-either co-residence or living apart (see Table 4). We in-cluded variables from each of four domains thatwe hypothesized would be related to these ex-pectations: characteristics of the mother, thebrother or sister with mental retardation, andthe sibling as well as current involvement ofthe sibling with the brother or sister with men-tal retardation.

Because there were 24 variables in our bi-variate analyses (see Tables I, 2, and 3), we re-duced the list of potential predictors for themultivariate analysis of the sibling's future roleexpectations. We eliminated variables if theyhad large bivariate correlations with other vari-ables in the model. For example, we includedmaternal age but not the age of the sibling orthe brother or sister with mental retardationbecause these variables were too highlyintercorrelated with maternal age, rs = .697 and.537, respectively, ps <.001. (The full intercor-relation matrix of study variables is availablefrom the authors.) The final model contained15 variables, conforming to the rule of thumbof approximately one variable for every 10 casesin the sample.

The first domain included in the multivari-ate analysis consisted of the characteristics of

"Numbers in parentheses are codes. bTelephonecontacts or visits. cMaximum = 10. dMaximum = 3.

Table 4Lo~istic R~~ion o~e Plans t~Co.Reside Versus Live ApartCharacteristic Model 1 Model 2 MOdel 3 Model 4

-.290

-.808

-.042

-.015

-.021

-1.151.-.064

-.029

.118-1.173"

.-.115

0.014

.230

1.395--.248

-.040

-.228

.5511.291 .-

.-.623.082

-.181.661*

1.158**-.780-.014

-.191

.923**1.242**-.744

-.214

1.094*-.062

.292

-.118

.000

.671

-.448.660

.003

.000

.482***44.63***79.53

MotherMarital statusHealth statusNo. of childrenAge

Brother/sister with mental retardationBehavior problemsLevel of mental retardationGenderWaiting list statusHealth status

SiblingGenderEmployment statusMarital statusBirth orderIncome

Current sibling involvement. no. shared activitiesModel chi square0;0 correctly classified---*p < .05. *.p < .01. *..p < ;001

QOMpntnl R..tn..,j".;,,~ ~~_:I 'oo~

It is interesting that prior to the inclusionof the current sibling involvement variable inthe equation (i.e., in Model 3), sibling genderwas a significant predictor, with sisters morelikely than brothers to plan to co-reside withtheir brother or sister with mental retardation.The gender variable lost its significance inModel 4 because of its shared variance withnumber of shared activities, r = .174, P < .05.

DiscussionThe portrait of sibling involvement yielded

by this study expands our understanding of theinfluence of mental retardation on adult sib-lings' current lives and potential future residen-tial plans. As adults, these siblings havesustained contact with and rather extensiveknowledge about the contemporary needs oftheir brother or sister with mental retardationand have engaged in a variety of familial expe-riences that signal a continuing and meaning-ful sibling role in adulthood.

In many of the families. a sibling expectedthat the brother or sister with mental retarda-tion would eventually live with him or her af-ter the period of parental care has ended. Westated a series of specific hypotheses regardingthe circumstances that predict when this choicewill be made. Although on a bivariate level,there were many differences between those whoexpected to co-reside and those who expectedto live apart, in the multivariate analysis only afew factors differentiated these two groups. Oneof these was gender. Sisters of sisters with men-tal retardation were most inclined to plan toco-reside, more so than any other dyad. Thisgendered differentiation of future caregivingroles is supportive of our hypothesis and con-sistent with past research on family role pa~-terns across the life course in care giving andnoncaregiving relationships (Horowitz, 1985;Spitze & Logan, 1990).

A second factor predictive of a sibling's planto live together was level of mental retardation,with less severe mental retardation predictingco-residence. Thus, as we hypothesized, theanticipated level of care these adults will needpowerfully influenced a sibling's willingness totake on primary caregiving responsibility. Athird factor was the number of activities inwhich the sibling and the brother or sister withmental retardation currently participated to-gether. As we hypothesized, the greater thenumber of current activities, the more likely the

the aging mother, including her marital status,health status, number of other children in thefamily, and age. The second domain containedthe following characteristics of the brother orsister with mental retardation: number of be-havior problems, level of mental retardation,gender, waiting list status, and health status.The third domain consisted of the characteris-tics of the sibling: gender, employment status,marital status, birth order, and family income.The fourth domain was the level of current sib-ling involvement with the brother or sister withmental retardation as measured by the numberof shared activities in the past year.

The multivariate models are presented inTable 4. In Modell, the characteristics of themother are used to predict the future role ex-pectations of the siblings, whereas in Models 2 .and 3, characteristics of the brother or sisterwith mental retardation and the siblings, respec-tively, are brought sequentially into the analy-sis. Finally, in Model 4, in addition to thesethree sets of characteristics, the measure of cur-rent sibling involvement with the brother orsister with mental retardation is included. Thefinal model was significant and correctly clas-sified 80% of the siblings with respect to theirfuture plans to either co-reside or live apart fromtheir brother or sister with mental retardation.

The results show that a sibling's future plansare partly. a function of maternal characteris-tics. A mother's health status was predictive ofwhether the sampled sibUng planned to livetogether with or apart from the brother or sis-ter with mental retardation. The worse themother's health, the more likely was the sib-ling to plan to co-reside. Two characteristics ofthe adult with mental retardation were predic-tive of whether the sibling expected him or herto co-reside: gender and level of mental retar-dation. As we hypothesized, siblings were morelikely to plan to co-reside with a sister who hadless severe retardation.

Although none of the characteristics of thesibling was predictive of future plans to co-re-side, we found that current involvement withthe brother or sister with mental retardation wasa significant predictor. Siblings who shared agreater number of activities with the brotheror sister with mental retardation during the pre-ceding year were more likely to plan to co-re-side. Thus, future plans appear to be a functionof individual characteristics of the mother andbrother or sister with mental retardation and cur-rent patterns of interaction between the siblings.

90 Mental Retardation I April 1996

sibling was to expect co-residence. Finally,mothers of siblings who expected to co-residehad poorer health, a finding that is also consis-tent with our hypothesis that adult siblingswould be more likely to anticipate co-residencewhen their mother was more vulnerable.

Although the plan to co-reside signals ahigher level of current involvement than theplan to live apart, it is noteworthy that siblingswho planned to live apart maintained an im-pressive degree of contact and involvement withtheir brother or sister. We found that at leasthalf of those siblings had contact with theirbrother or sister on a weekly basis, have haddiscussions with their parents regarding futureplans for the brother or sister during the pre-ceding year, and planned to be the legal guard- .

ian of the brother or sister. Thus, although thosewho intended to co-reside were undeniablymore involved with the brother or sister withmental retardation, the involvement of siblingswho planned to live apart was impressive andmore similar to normative patterns of siblinginvolvement when neither has a disability

(Cicirelli, 1988).We have seen that many families preferred

the plan for siblings to co-reside as opposed toa non-family based option (Krauss & Seltzer,1993 )...However, there is debate among profession-als about the desirability of living with family foradults with disabilities. Some professionals areskeptical about the appropriateness of thislifestyle, based on the assumption that there isa constraint on autonomy and independencewhen living in the home of a family member.Others view this living arrangement as ensur-ing a loving, stable, and familiar environmentfor persons with mental retardation~ There maywell be trade-offs between security and inde-pendence for many people with mental retar-dation, as Lawton (1991) suggested with respectto the general aging population. Edgerton's(1994) work reminds us that over the life courseof people with mental retardation, the need forsecurity and the need for independence wax andwane in importance. The critical challenge isto be mindful of the preferences of the personwith mental retardation in the decision regard-ing where he or she will live, in addition to thepreference of family members who may volun-teer to share their home. Regardless of profes-siona.ls'¥iews of the desirability of co-residencebetween a sibling and his or her brother or sis,ter with mental retardation, this is a choice thatwill be endorsed by many families.

There is also evidence of within-family di-versity with respect to the optimal or likely liv-ing arrangement for the family member withmental retardation. In 22% of the families inwhich the sibling expected that the brother orsister with mental retardation would eventuallylive with him or her, the parents also had addedtheir name to a waiting list for publicly sup-ported residential services. As we noted, thismay represent either a back-up plan or a differ-ence of views between parents and siblings regard-ing what is the best plan for the future. We believethat having multiple plans may represent adap-tive coping strategies for some families.

There are a number of limitations of thisanalysis. First, it is based on a selected subsampleof siblings: those who either were designatedby their mothers as the most involved with theirbrother or sister with mental retardation or werethe only other sibling in the family. Further,these siblings had a clear plan in mind regard-ing whether they anticipated living together orapart from their brother or sister. Thus,generalizability is limited to this group. How-ever, we have chosen to report on this samplebecause these individuals are most likely to bethe mainstay of family support beyond the par-ents' lifetime.

An additional limitation of this analysis isthat it is based entirely on the siblings' projec-tions of future roles. Although we defined thecategories carefully (i.e., including only thosesiblings who voiced a future plan and thoughtthat this was the best plan), it is inevitable thatthese plans will shift in response to changes inthe circumstances of parents, siblings, the adultwith mental retardation, and the service sys-tem. Because our study is longitudinal in de-sign, we are continuing to collect data fromfamilies every 18 months. This paper is basedon the third wave of data collection. We willre-contact these siblings at the sixth wave, withapproximately 4.5 years intervening betweenthe two points of sibling contact. At that time,we will reassess the siblings' plans for the fu-ture, examine actual changes that have occurredwith respect to the living arrangements of theadults with mental retardation, and identify thepredictors of actual (rather than projected) co-residence.

In conclusion, the inevitability of intergen-erational transmission of caregiving is high-lighted by our study of older families as well asthe variety of ways that siblings will assume this

91Mental Retardation, April 1996

responsibility. It is clear that many siblings bringthe resolve and the emotional connectednessto their brother or sister that should underlinea plan to co-reside. It is also clear that manyother siblings anticipate that their brother orsister will ultimately be served within the com-munity residential system. Whether there issufficient elasticity to the service system to carefor the hundreds of thousands of adults withmental retardation who currently live with theirparents is a challenge for policy makers and theservice delivery system. The length of waitinglists for residential services and caregiver sup-ports augurs poorly for those who have lived athome throughout their lives. The contributionsof parents over decades of time should not ulti-mately jeopardize the eligibility of siblings-thenext generation of family caregivers-to receive' .

necessary supports when needed.

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Krauss, M. W., Seltzer, M. M., & Goodman, S. J.(1992). Social support networks of adults withretardation who live at home. American Journalon Mental Retardation, 96, 432-441.

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Seltzer, G. B., Begun, A., Seltzer, M. M., & Krauss,M. W. (1991). The impacts of siblings on adultswith mental retardation and their aging mothers.Family Relations, 40, 310-317.

Seltzer, M. M., & Krauss, M. W. (1989). Aging par-ents with mentally retarded children: Family riskfactors and resources of support. American Journalon Mental Retardation, 94,303-312.

Seltzer, M. M., & Krauss, M. W. (1994). Aging par-ents with resident adult children: The impact oflifelong caregiving. In M. M. Seltzer, M. W.Krauss, & M. P. Janicki (Eds.), Life course perspec-tives on adulthood and old age (pp. 3-18). Wash-ington, DC: The American Association onMental Retardation.

Shonkoff, J. P., Hauser-Cram, P., Krauss, M. W., &Upshur C. C. (1992). Development of infants withdisabilities and their families: Implications fortheory and service delivery. Monograph of the So'ciet)' for Research in Child Development, 57(SerialNo. 230).

Smith, G. C., Fullmer, E. M., & Tobin, S. S. (1994).Living outside the system: An exploration of olderfamilies who do not use day programs. In M. M.Seltzer, M. W. Krauss, & M. P. Janicki (Eds.), Lifecourse perspectives on adulthood and old age (pp. 19-37). Washington, DC: The American Associationon Mental Retardation.

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Center for Mental Retardation and Human Devel-opment at the University of Wisconsin-Madison.Earlier versions of the paper were presented at the118th annual meeting of the American Associationon Mental Retardation, Boston, June 1994, and the47th annual scientific meeting of the GerontologicalSociety of America, Atlanta, November 1994.

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ledin, A. G. (1986). Mentally retarded adults andtheir siblings. American Journal of Mental Defi~ciency, 91,217-225. Authors: MARTY WYNGAARDEN KRAUSS,

PhD, Associate Professor and Director; andDONNA HAIG FRIEDMAN, MA, Research As-sociate, Starr Center on Mental Retardation, HellerSchool, Brandeis University, Box 9110, Waltham,MA 02254. MARSHA MAlLICK SELTZER, PhD,Professor, and RACHEL M. GORDON, MSSW,Research Assistant, Waisman Center and School ofSocial Work, University of Wisconsin-Madison,1500 Highland Ave., Madison, WI 53705-2280..

Received 1/4/95, first decision 5/1/95, accepted 8/4/95Editor~in~Charge: Diane Ferguson

Support for this paper was provided by grants fromthe Joseph P. Kennedy, Jr. Foundation and the Na-tional Institute on Aging (No. ROI AGO8768) andwith support from the Starr Center for Mental Re-tardation at Brandeis University and the Waisman

93Mental Retardation, April 1996