MENTAL RETARDATION Vol. 35, No.2, 114-123, April 1997

Aging Parents' Residential Plans forAdult Children With Mental RetardationRuth 1. Freedman, Marty Wyngaarden Krauss, and Marsha Mailick Seltzer

Abstract: Future residential plans and placement preferences of 340 mothers ofadult children with mental retardation living at home were examined and find~ings from a 3~year follow~up discussed. Four subgroups of families were com~pared based upon residential plans and preferences for continued home resi,dence for the next 2 years. Significant group differences were found for back~ground characteristics, maternal psychological well~being, and support systems.Less than 50% had made residential plans, and the majority believed their childwould still be at home in 2 years. At 3,year follow~up, 22% of the families withshort' term residential plans had achieved a placement compared to 14% amongfamilies without a plan who wanted a placement.

P lanning for the future is a pervasive con- in the family (Seltzer, Krauss, Choi, & Hong,cern of aging parents who have adult chil- 1996; Wikler, 1986).

dren with mental retardation living at home. Either in spite of, or because of, familialThey worry about what will become of their son concerns, anxiety, and stress about the future.or daughter when they are no longer able to pro- parents of adults with mental retardation oftenvide care. Perhaps the most challenging aspect do not make concrete long-term plans (Hellerof future planning is to make decisions about & Factor. 1991; Kaufman, Adams, & Campbell,where the adult child with mental retardation 1991; Seltzer & Krauss, 1994). Although par-will eventually live. Smith, Tobin, and Fullmer ents may assume that another child will take(1995) characterized residential decisions as responsibility, many parents do not discuss theseth t ' II I d f " I arrangements with their other children (Good,e mos emotlona y a en component 0 Iuture p an-ning because the parents must acknowledge that their man, 1978; Heller & Factor, 1991; Kaufman etson or daughter may some day not reside in their life- al., 1991; Krauss, 1990). Similarly, few parentslong home. (p. 487) have discussed future plans with their sons or

R 'd ' I I ' rf I d daughters with mental retardation or obtainedesl entla p annmg su aces unreso ve or h ' C C f I '. t elr prelerences lor uture lvmg arrangements

unspoken ~oncerns of the parents, the son or (Heller & Factor, 1994; Smith & Tobin, 1989).daughter wlth mental retardation, siblings, and L k f I ' " f ' d ' ff ' I '

, , , ac 0 p annmg creates Slgru lcant 1 lCU tlesother relatlves, including such concerns as con, C C . 1 b h ., d, lor laml y mem ers w en a CriS1S oes occurtmuing family responsibility, separation, and in- (such as the death or incapacity of a parent)dependence. Making residential plans may and has repercussions for the service deliverysignify the beginning of the launching stage for System (J anicki Otis Puccio Retti &h ' h' h h I' , , , g,t ~se pare,nts. l~ w lC t .ey prepare to re m- Jacobson, 1985).qulsh the!r actlve parenting role, (Carter ~ Investigators have examined factors asso-McGoldrick, 1989). The launching stage lS ciated with future planning or with families'among the most stressful transitions for parents preferences or requests for out-of-home place-of adults with mental retardation and is often ment (Black, Cohn, Smull, & Crites, 1985;accompanied by interpersonal turmoil, fluctua- Black, Molaison, & Smull, 1990; Heller & Fac-tions in parental well-being, and disequilibrium tor, 1991; Kaufman et al., 1991; Kobe, Rojahn,L

114 Mental Retardation, April 1997

, & Schroeder, 1991; Sherman, 1988; Tausig, White families to make residential or financi1985). In other studies researchers have inves- plans. Sherman (1988) found that larger famtigated the stages or process of future planning lies headed by a single parent and suff~rir(Blacher, 1990; Blacher & Baker, 1994; greater disruption of family life were more likePruchno, Michaels, & Potashnik 1990) and to decide to place a family member in reside!have concluded that "placement" is an ongo- tial care. Black et al. (1990) found that t~ing process rather than a single discrete behav- number of caregiver stressors (e.g., caregi~,ior, with predictable and ordered stages of health problems, financial concerns, other chidecision-making and deliberation occurring car~ Q~milnd~) Wil~ the §trong~§t pF~di~ftjt :prior to the actual placement. Smith et al. urgency of community living request.(1995) identified five stages in residential plan- Findings regarding the role of formal anning; no discussion of future residence, early informal support systems in families' futurdiscussion but not serious in nature, alternatives plans also have been mixed. Heller and Fac~9considered without resolution of choices, pro- (1991, 1993) found that increased utilizatiOIvisional or tenuous plans made, and definite of formal services and informal supports anI, residential plans established. Researchers have high levels of unmet service needs were associ' also examined the degree of urgency behind ated with family preference for out-of-homtfamilies placement requests. Families in the placement. Smith et al. (1995) found thaBlack et al. (1990) study rated the urgency of greater service use and help from other relative:their requests for community living services, were significant predictors of stage of futurtranging from urgent and in crisis; urgent, but situ- planning in families. However, Black et alation stable; services highly desirable; services (1985) and Sherman (1988) found that low ser.wanted in the future; and unsure of urgency. vice utilization was associated with out-of-homfThese studies point to the complexities and placement requests an~ decisions.multidimensionality of residential planning and To summarize, results of these studies sug.the variability of families' preferences and de- gest the saliency of maternal, family, and sup-cisions regarding future plans. Families' future port system characteristics, in addition to thoseresidential plans are linked to parental hopes of the adult with mental retardation, in under-and desires for the adult child's future, stage in standing families' future plans and preferences..the planning process, and the perceived urgency However, only limited attention has been givenof the current circumstances. Factors associated to maternal psychological well-being and fam-with future planning, placement preferences, ily functioning as potential factors related toand urgency of requests include characteristics future planning. Heller and Factor (1991) foundof the adult with mental retardation, charac- that caregiver burden was a significant predic-t;teristics of the parents and the family, and for- tor of families' preferences for out-of-homeal and informal support system characteristics. placement. Similarly, T ausig (1985) found thatIn terms of characteristics of the adult, more stressors within the family, caregiver burden,~ere levels of mental retardation, poorer func- and disruption of family relationships contrib-.at skills, aM ~~ ~~~"--- ~-~ ~,--.~~ -"'~"havlors are relatea to future planning and viduals with mental retardation who were OVf,\acement preferences. for example, ma\adap- 11 years of age. .d fP,bh' 'dt'f'edbyBlack et al Other critical aspects of caregiver an alllive e avlor was I en I I. , I d .I'(1990)Heller and Factor (1991), and Sherman ily well-being such as ma~ernafehPre:sl°.nI' I , .~' dPerceptions 0 t e laml y Sl(1988) as a significant predictor of families ur- sa tis action, an , d' d'gency of request for community living, prefer- cial climate have no~ been e~mme !n s~u cll'ence for out-of-home placement, and decision of futurefPla~dnin~.Iilven ,t e emdotlo~o~Oge ,I' I aspects 0 resl entia p annmg an psyc to place in residentia care, respective y.IIb'l' ,tdI'

th the launchin

h b d d ca vu nera I Ity assocla e w Mixed results ave een reporte regar - (s Itzer et al., 1996; Smith et al., 1995': in characteristics of the parents and the fam- stage e " , I~ il gin relation to future plans and preferences. the relation between families futur,e pans anj H:ller and Factor (1991) f04nd that older preferences and par~ntal ~syc~ologlcal and socaregivers of higher socioeconomic status were cial factors warrant mvestlgatlof~. d' b .' l'k I t make financial plan-s, and Afri- In this article we present m mgs a ou:~eA~~rrca: families were less likely than families' residential plans and placement prefMental Retardation, April 1997 11:

,erences based upon a longitudinal study of older analysis were (a) 52 families whosmothers caring for adult children with mental by Time 3 of data collection had been placedretardation. We distinguished families' residen- outside the parental home, (b) 22 cases in whichtial plans along two dimensions: whether the either the mother or the adult with mental re-parents (a) have a residential plan and (b) pre- tardation had died prior to Time 3, (c) 20 casesfer an out-of-home placement for their son or in which the mother declined to participate atdaughter within 2 years. Exploration of these Time 3, and (d) 27 cases with missing data ontwo dimensions yields insights into the preva- residential plans and/or preferences.lence of planning and short-term intentions of At the third time period of data collection,parents, thus signaling the immediacy or ur- the mothers ranged in age from 58 to 87 yearsgency of their plans and preferences. (mean = 68.1, standard deviation [SD] = 6.5).

We conceptualized four types of families: Three fourths (75.6%) rated their health asthose who (a) have a residential plan and who good or excellent; 18.8%, as fair; and 5.6%, asprefer that the adult child move out of the home poor. The majority (61.0%) were married, onewithin 2 years; (b) have a residential plan but third (33.3%) were widowed, and 19 (5.7%)prefer that the adult remain at home at least were divorced, separated, or single. Their aver-for the upcoming 2 years; (c) do not yet have a age family income was $28,538 (SD = $12,986).

plan but who prefer placement outside of the With respect to education, 15.9% had less thanhome within 2 years; and (d) do not have a plan a high school education, 42.4% graduated fromand who prefer that the adult child remain at high school, and 41.7% had some post-highhome at least during the next 2 years. Our first school education (trade school, college, orobjective was to explore whether these four graduate school).types of families differ in their characteristics, Their sons (54.1 %) and daughters (45.9%)functioning, well-being, and formal supports. with mental retardation ranged in age from 18

Our second objective was to assess the out- to 69 years (mean = 36.8, SD = 7.3). Over one

comes of families' residential plans and prefer- third (38.2%) had Down syndrome. Four fifthsences over a 3-year period, based on a follow-up (80.5%) had mild or moderate levels of mentalof individuals subsequently placed out of home. retardation and one fifth (19.5%) had severeWe were interested in whether families who had or profound levels. The majority of the adultdeveloped plans and preferred out-of-home children (87.9%) were reported to be in eitherplacement within 2 years were more likely to good or excellent physical health.

have achieved these goals at follow-up (3 years. .,later) than were families without plans or pref- Data Collection and Measures t

erences for placement outside of the home. At each data point, the mothers partici-

pated in a structured interview in their homesMethod and completed self-administered standardizedSample assessments. Residential planning was measured

, , , "along three dimensions. First, mothers were,This analysis is base~ ~n an ongoing long~- asked whether they had a specific plan for where

tu~mal study of 461 families who ,met two cn- their son or daughter would live in the futuretena at the outset of the study m 1988: the (coded as 0 = no residential plan and 1 = havemother was age 55 or older and had a son or residential plan). Second, mothers were askeddaughter with mental retardation living at home where they thought their son or daughter would(see Seltzer & Krauss, 1989, for study method- be living 2 years from now (coded as 1 = sameology). Data have been collected every 18 place as currently and 2 = in a different set-months. Thus far, data have been completed at ting). Mothers were also asked the kind of set-six time periods. The sample for the present ting they ideally wanted their son or daughteranalysis consisted of 340 mothers with sons or to be living in 2 years from now (coded as 1 =daughters who still lived at home in 1991, at same setting as currently and 2 = different set-the third stage of data collection, during which ting).time extensive information was collected on The data used in this analysis included fourfuture planning. Slightly more than half of the domains of variables: (a) characteristics of thefamilies (n = 181) lived in Wisconsin; the other adult with mental retardation, (b) characteris-

159 lived in Massachusetts. Excluded from the tics of the parents and family, (c) maternal psy-

116 Mental Retardation, April 1997 .

chological well-being, and (d) characteristics. 72). (The specific items from the Question.of the adult child's formal support systems. The naire on Resources and Stress-F that werecharacteristics of the adult with mental retar- summed for this subscale were Item 4 [I worr~dation that we considered were age, level of about what will happen to -when I can ncmental retardation, number of behavior prob- longer take care of him /her]; Item 7 [I have ac.lems, and decline in health or functional skills cepted the fact that might have to liveover the prior 18 months. Level of mental re- out his/her life in some special setting, e.g., in-tardation was coded as 0 (severe/profound) or stitution or group home]; Item 12 [In the fu-1 (mild/moderate). The Inventory for Client and ture, our family's social life will suffer because

Agency Planning (Bruininks, Hill, Weatherman, of increased responsibilities and financial stress];& Woodcock, 1986) was used to measure the num- Item 13 [It bothers me that -will alwaysber of behavior problems (maximum = 8). Moth- be this way]; Item 32 [I worry about what willers indicated whether there had been a decline in happen to -when he/she gets older); Itemtheir son's or daughter's health and/or functional 43 [I worry about what will happen toskills since the last interview (coded as 0 = no when I no longer can take care of him /her]; Itemdecline and 1 = decline). 47 [- will always be a problem to us]).

Characteristics of the mother examined The mean score of mothers was 4.50 (SD =were age, marital status, and decline in health. 1.86). Finally, mother's purpose in life (havingMarital status was coded as 0 (widowed, di- goals in life and a sense of direction) was mea-vorced, or separated) and 1 (married). Mater- sured using the Scales of Psychological Well-nal decline in health over the past 18 months Being (Ryff, 1989), which consists of fivewas coded in the same way as for the son or statements, with response categories rangingdaughter with mental retardation. The family from strongly disagree (1) to strongly agree (6)characteristics were annual income and having (alpha = .70). The mean score of mothers wasother living children (coded as 0 = no other 23.82 (SD = 4.55).living children and 1 = other living children). Formal support system characteristics of theThe Family Relations Index was calculated for adult with mental retardation consisted of twoeach family, based upon maternal report for measures: the total number of services receivedthree subscales of the Family Environn;1ent Scale by the adult (range from 0 to 16) and the total(Moos, 1974): Expressiveness, Cohesion, and number of services needed, but not receivedConflict (higher scores indicate more positive (range from 0 to 16).family relationships). The alpha reliability was.67. Data Analysis

Four self-report measures of maternal psy- Two-way analyses of variance were con-chological well-being were obtained. To mea- ducted using SPSS-X (SPSS, 1991) to detectsure subjective burden, we used the Zarit Burden significant main and interaction effects in theScale (Zarit, Reever, & Bach-Peterson, 1980), residential plans (plan, no plan) and placementwhich consists_of 29 items, each scored on a 3- preferences of families (preference for living inpoint scale (alpha = .83). The Center for Epi- the same place, different place) in terms of the

demiologic Studies-Depressed Mood Scale four domains described earlier. In all analyses,(Radloff, 1977), a measure of the frequency of an alpha level of at least .05 was used to assess20 depressive symptoms that had occurred over significant effects. We note that the cross-sec-the last week, each rated on. a 4-point scale, was tional nature of our data preclude making causalused to assess depressive symptoms. The mean inferences from our study's findings.score of mothers was 29.30 (SD = 6.74). Scoreson this scale range from 0 to 60, with higher Results~I:.~'-~ ~~'-~ ~~~'- ~~'-~\.~~ 'b'\~~'-~~ "De.~m\>tio1\ o~ "Re.~i(\e.1\tio.\ \>\a1\~ 0.1\<\ \>Te.~eTe1\Ce~(alpha = .88). The mean score of our samplewas 9.20 (SD = 8.44). Less than half (45.3%) oft~e 340 mothers

To assess worry about the future, we had a specific plan for where their son ,or daugh-summed seven items from the revised version ter would live in the future, as manifested byof the Questionnaire on Resources and Stress putting their name on a waiting list for residen-by Friedrich, Greenberg, and Crnic (1983), with tial programs such as group homes or ap~rt-higher scores indicating more stress (alpha = ments, planning for siblings or other relatives

Mental Retardation, April 1997 117

..,to take the adult child into their own homes, significantly more likely to have engaged in resi-or planning for siblings to move back to the fam- dential planning than were those who wantedily home to care for the family member with the same setting, X2 = 9.28, P = .002.mental retardation. Further, the vast majorityof mothers (94.0%) thought that their son or Comparison by Family Type and Residentialdaughter would still be living at home 2 years Planshence. However, when asked where they ide-ally wanted their adult child to be living in 2 A key objective was to compare four typesyears, more than one third (37.9%) indicated of families based upon their future plans andthat they wanted their child to be living in a preferences: (a) families with residential plansdifferent setting. Of the 129 mothers who ide- who prefer out-of-home placement within 2ally wanted a different setting in 2 years, only years (short-term planners); (b) families with17 (13.2%) expected that a placement would plans but who prefer continued home placementactually occur within that time frame. for the next 2 years (long-term planners); (c) i

We next examined the relation between families who do not have plans but prefer out-families' residential plans and placement pref- of-home placement within 2 years (wishfulerences in 2 years. Of the 154 parents who had thinkers); and (d) families who do not haveresidential plans, 82 (53.2%) ideally wanted plans and prefer continued home placement fortheir son or daughter to be living at home in 2 the next 2 years (the status quo). These fouryears, while the remaining 72 of the planners groups were compared with respect to charac-(46.8%) wanted a different setting in 2 years. teristics of the adult with mental retardation,For the 186 parents who did not have residen- maternal/family characteristics, maternal psy-tial plans, 129 (69.4%) wanted the same set- chological well-being, and support system char-ting in 2 years, and the remaining 57 parents acteristics (see Table 1). We were particularly(30.6%) indicated that they wanted a different interested in examining interaction effects,setting for their son or daughter in 2 years. Par- which indicate a different pattern of resultsents wanting a different setting in 2 years were based on specific types of families.

Table 1Analysis of Variance of Domain Variables by Residential Plan and Placement Preference ;,

Residential plan No residential plan.,Same Diff't Same Diff't F; F; ,

setting setting setting setting residential placement F;Characteristic (n=82) (n=72) (n=129) (n=57) plan preference interactionAdult with mental retardationAge 36.70 36.04 36.05 34.92 1.08 1.18 .08Level of retardation .87 .85 .79 .69 5.94* 1.54 .74Behavior problems 1.29 1.94 1.53 2.32 2.53 15.14*** .14Decline in health .06 .15 .09 .04 .70 .24 5.47*Declin~ in skills .08 .21 .11 .19 .05 6.51** .36

Mother/familyAge of mother 68.38 69.11 67.50 68.00 1.78 .68 .03Marital status .53 .56 .64 .72 5.96* 1.00 .18Decline in health .23 .28 .18 .25 .96 1.45 .05Family income (in thousands) 27.83 27.40 29.69 28.39 1.13 .35 .09Has other living children .90 .97 .96 .93 .57 .51 3.75*Family Relations Index 12.37 11.22 12.13 10.88 .54 9.5** .02

Maternal psychological well-beingBurden of care 27.19 31.60 28.79 30.60 .66 16.75*** 2.97Depression 7.26 11.38 8.75 10.31 .26 7.94 ** 1.65Worry about future" 3.79 5.25 4.36 4.78 .53 19.02*** 6.00*Purpose in life 25.30 23.13 23.27 23.80 3.34 2.14 6.12**

Formal support systemNo. of services received byadult with mental retardation 4.60 4.76 4.71 4.86 .25 .57 .001

No. of unmet service needs ofadult with mental retardation 1.00 1.61 .87 1.70 .08 18.10*** .43

,Note. The n varied between 297 and 340 for the analyses. ~"As measured with the Questionnaire on Resources and Stress-F. '*p<.05.**p<.01.***p<.001. ,t

~ 118 M t ..,~dation, APriI199~- -~

The analysis yielded five significant inter- of whether they had a residential plan) weraction effects. Regarding characteristics of the more likely to have a son or daughter with beadult with mental retardation, the short-term havior problems and declining functional skillplanners (i.e., families who had residential plans than were families who preferred the home setand wanted a different placement in 2 years) ting in 2 years. The families who wanted a differwere most likely to have a son or daughter who ent setting also had poorer family relationship!had experienced a decline in health over the as measured by the Family Relations Index.past 18 months. In contrast, wishful thinkers Maternal psychological well-being vari(no residential plan and preferred a different abIes were also salient in differentiating famisetting in 2 years) were least likely to have an lies who wanted a different setting in 2 yearadult child who declined in health. In terms of from families who wanted the same placementfamily characteristics, the short-term planners Mothers in families who wanted placement ilwere most likely to have other living children. 2 years were more burdened and depressed thaIIn contrast, long-term planners (i.e., had resi- were mothers in families who wanted the samdential plans but preferred their child to remain setting. In terms of support system characterisat home in the next 2 years) were least likely to tics, families preferring different placements ha,have other living children. In terms of mater- adult children with higher levels of unmet neednal psychological well-being, the short-term across various types of services.planners had the poorest well-being, whereasthe long-term planners had the most positive Follow,Up of Families' Plans and Preference,outcomes. Specifically, the short-term planners By TIme 5 of data collection (3 years aftewere most likely to be worried about the future th S d tl' m I' d) the st ' I' te econ e per 0, va major y cand least likely to experience a sense of pur- the adults with mental retardation (n = 29pose in their lives. In contrast, the long-term [85.3%]) still lived at home with their parent:planners h~d t?e highest levels of psychologi- Two adults (0.6%) had died, and no in formEcal well-beln~ ,In these areas. tion was available for 6 others (1.8%). Regarc

The fa~lltes who had no ~lans (and who ing the other families, 42 individuals (12.3%preferre~ ,eIther the, home settl~g-:-the status had been placed outside the home during thquo famlltes-~r a dlffe,rent setting In the next intervening 3 years. In order to examine th

-2 years-the wIshful t~l~ke,rs) fell between the relation between families' residential plans another two ,types of famIlIes In terms ofwell~be- preferences as expressed at Time 3 and substmg, That IS, bo,t? the status quo ~nd the wlsh- quent placement outcomes at Time 5, we cor~ ful thmker famllt~s were less worned abo,ut t~e ducted a follow-up analysis of these 42 case

-future ,and expenenced more purpos,e, In lIfe At follow-up, 21 adults lived in supervised conthan dId the short~term planner familIes, but munity residences, 6 were in semi-independerthey had more wornes about the future and less residential programs, 5 were in institution:purpose in life than did the long-term planner settings, 3 were in nursing homes, 4 lived witfamilIes. " "other relatives (typically a sibling), 2 lived i

Analyses of the main effects of resIdentIal foster homes, and 1 lived independently.plans yielded two characteristics that differen- Mothers (or the current primary carltiated families who had plans from those who provider) described the primary reason for tndid not: level of mental retardation of the son placement of the adult with mental retardatior

.or daughter and marital status of the mother. According to their report, 12 had been placeFamilies with residential plans (regardless of because of problems associated with parent:placement preference in 2 years) were more aging (i.e., fatigue, recognition of the inevit:likely to have an adult child with moderate or bility of a residential change). Ten were place~:. mild levels of mental retardation. Further, explicitly due to failing parental health and

.mothers in families with residential plans were to increase their independence as adults. Simore likely to be widowed or divorced than were placed following the death of their mothe)1 those in families without residential plans. Three were placed because of increasing stre:

3 , In terms of f~milies' preferences for residen- in the parent-adult child relationship, and tn-11al placements In the next 2 years, there were remaining 2 individuals were placed because (

ix significant main effects. Families who their own failing health or problematic beha,anted a different setting in 2 years (regardless ioral issues.

Mental Retardation, April 1997 11

The four types of families differed in their In order to ~xplore the relation between agej'

placement rates. The highest placement rate of the adult child and out-of-home pl~ce.ment,was among the 72 short-term planner families, we compared three age subgroups wIthin our jin which 16 adults (22.2%) were placed by fol- sample in terms of their out-of-home placement .1low-up. The primary reasons for placement in rates: age 30 and under (n = 90),31 to 45 years I !

this group included parental illness (n = 5), old (n = 219), and over 45 ye~rs (n = 31). The

parental aging (n = 5), desire for more in?e- over-45 age group had the hIghest placementpendence by the adult with mental ret~rdatlon rate of 6 (19%). People age 30 an? u~d~r had a j(n= 3),declininghealth in the adult wIth men- placement rate of 12.2% (11 indIvIduals), jtal retardation (n = 2), or stressful relationship whereas 11.4%, or 25 people, between the agesbetween parent and adult child (n = 1). In con- of 31 to 45 years were placed out-of-home.

trast, among the 57 wishful thinker families,only 14.0% of their sons or daughters had been Discussionplaced at follow-up. Placement among these There are two critical challenges facingfamilies was ~ttributed ~o materna! death_(n = families of adults with mental retardation who .I

2), parental illness (n -1) or aging (n -2), live at home. First, there is the need to make 1desire for more ~ndependence by the adult ,:,ith plans for the future. Second, families need tomental retardatIon (n = 2), or stressful relatlon- understand the utility of such plans. We noteship between parent and adult child (n = 1). that these challenges are fraught with uncer-

These data indicate that a~on~ families who tainty for families and for the service systemspreferred an out-of home settmg m 2 years, hav- into which adults with mental retardation areing a residential p~an increased the likelihood placed. Our focus on parental plans and prefer-of placement consIderably (22.2% vs..14.0%). ences reveals the complexity of the process and

Families ~ho pref~rred that th~lr son or the multiple factors associated with the verydaughter continue to hve at home m 2 years diverse range of situations in which families(regardless of whether or not they had a resi- exist.dential plan) were least likely to experience a Overall we found that less than half of theplacement. The lowest placement rate (7.3%) families had'made residential plans for their sonwas among the 82 long-term planner families. or daughter with mental retardation, and theOne individual was placed following the vast majority believed he or she would still bemother's death, 3 because of maternal aging, and living at home in 2 years. Indeed, only slightly2 in order to increase the adult's independence. more than a third indicated a desire for place-The 12 placements that occurred in the status ment within 2 years. Of those who desired aquo families (who had a placement rate of9.3%) placement, only 13% believed that a placementwere attributed to maternal death (n = 3), pa- would, in fact, occur. These findings alone re-rental illness (n = 4) or aging (n = 2), stressful veal the durability of family-based care, evenparent-adult child relationship (n = 1), and when the parents are in the elder years. Despitedesire for more independence (n = 2). the increased emphasis within the service sys-

Maternal death and illness loom large as terns to engage in person-centered planningprimary reasons for placement. For the 11 moth- (Bradley, Ashbaugh, & Blaney, 1994), and forers who died between Time 3 and the follow-up parents and adults with mental retardation toperiod, placements occurred in 6 cases, 5 of be active participants in such planning (Dyb-whom had no residential plans at TIme 3. (One wad, 1990), there appears to be substantial re-person was placed several months prior to his luctance among caregiving families to alter ormother's de~th.) Precipitous changes in mater- plan for a change in residential setting.nal health, including death, is an obvious cata- Based on parental plans (or no plans) andlyst for residential change among adults with desire for out-of-home placement within 2 yearsmental retardation. In the remaining 4 families (or no such desire), we identified four types ofin which there was a maternal death during the families. The group that had the greatest pro-study period, the care for the adult with mental pensity for placement (i.e., the short-term plan-retardation was assumed by the surviving par- ners who had a residential plan and wanted aent or siblings, but without a change of resi- placement within 2 years) had the poorest well-dential location for the adult with mental being. They were most likely to have a son orretardation. daughter in declining health, to have mothers!

120 Mental Retardation, April 1997

with greater worries about the future, and to gardless of motivation to place) is affectedhave mothers with a lower sense of purpose in multiple factors, some of which are internallife. The)' were also the most \ike\)' to achieve unique to the {ami\ie.s, some o{ ~hich 'ate.their goal, as 22.2% had secured a placement ternal and affected by federal and state polat the 3-year follow-up. Although parental ill- With respect to the family-based factors.ness or concerns about aging were the reasons found that planning was more likely amfor 10 of the 16 placements, none occurred be- mothers who are no longer married and,cause of maternal death. may feel more pressure as single parents tc

In contrast, the long-term planners (i.e., ticulate their expectations for their deperuthose with residential plans but not seeking offspring. We also found that having a soplacement) had the most positive well-being daughter with mild or moderate retardationamong the four groups and had the lowest place- associated with having a residential plan.ment rate (7.3%) at follow-up. The mothers in ents may perceive more variety in reside!these families had the lowest level of worries options for dependents with more capabilabout the future and the highest levels of sense and may thus be willing to articulate planof purpose in life. With respect to the external factors

More than a third of the families (3 7 .9%) may affect the motivation to plan, thercwere characterized as status quo families, mean- currently tremendous residential waiting 1i1ing they had no residential plans and did not virtually every state in the country. It isdesire an out-of-home setting within 2 years. mated that there are 78,700 individualsThese families were similar to, but slightly less mental retardation in need of residential

i well-off in terms of functioning and well-being vices (Hayden, 1992). Families may be kcthan were the long-term planners. Despite their aware of the arduous process and intense csatisfaction with their present arrangements, at required to secure highly sought after and scfollow-up we found that 9.3% of the adults with openings in publicly financed residentialmental retardation in these families were in an grams. Indeed, we found that among the iout-of-home setting. Most of these placements lies who wanted a placement within 2 .,were attributed to maternal factors, including there were exceptionally low expectationsdeath, illness, or aging concerns. Indeed, of the it would occur. We also noted that parer6 mothers whose death resulted in an out-of- adults with severe or profound levels of m,

y home placement, 3 had been classified in the retardation were less likely to make reside~- status'quo group. plans than were parents of adults witha The wishful thinkers were the smallest of capabilities. These types of families m~\t the four groups, but perhaps the most problem- acutely aware of the constraints in service ~~- atic. These families had no residential plans but ability. Although many states have pla(n wanted a placement within 2 years. Even so, special emphasis on reducing the size ofte however, 14% achieved a change in residential ing lists, short-term resolution is elusive ins- setting at the 3-year follow-up, primarily due of the uncertainties confronting every sta

\g to maternal factors, including death, illness, or garding potential caps in Medicaid fundin,Jr concerns with aging. Both in terms of maternal diminished state resources for human sento well-being and family functioning, the p'rofiles Despite the discouraging prospectb- of these families were similar to (although achieving a residential placement in the se- slightly better off than) those of the short-term term, our findings suggest that active pialor planners. by families can make a difference-22% c

:\d ' The results,suggest that havi~~ a residen- families wit~ a. short-term plan achie,tlal plan results m a greater probability of place- placement Within 3 years compared to 1 ~

lr~ ment than does not having a residential plan, a those who wanted a placement but did not0 finding confirmed in other analyses of these data a plan. Further, our data reveal that among'0-

(Essex, Seltzer, & Krauss, in press). It does not, who wanted a placement and had takenIn- however, guarantee a placement, and the ab- to achieve it (the short-term planners)'ll~ sence of a plan is not a singular barrier to place- mothers were reporting greater worry abol.ment, particularly when parental death or future, a diminished sense of purpose in lifcor illness occur (Gordon, Seltzer, & Krauss, 1997). declining health in their adult dependent'ers

We suspect that the motivation to plan {re- We also found that placement was more

Mental Retardation. April 1997

to occur among the oldest age cohort in the community living requests. American Journal ofsample of adults with mental retardation, those Mental Retardation, 95, 32-39.ages 45 and over. We cannot infer from our re- Blacher, J. (1990). Assessing placement tendency in

h h h f d h I .families with children who have severe handicaps.searc t at t ese actors cause t e p annmg R h ' D I P I D . b' l "

11 349 359..esearc In eve 0 menta Isa I Itles, , -.to occur, but our findings suggest that greater Blacher, J., & Baker, B. L. (1994). Out-of-homevulnerability in maternal well-being and health placement for children with retardation: Family

problems in adults with mental retardation may decision making and satisfaction. Family Relations,prompt the family to confront and act on the 43, 10-15.task of residential planning. Bradley, V. J., Ashbaugh, J. W., & Blaney, B. C.

We also found that among those who want (Eds.). (1994). Creating individual supports for

a residential placement in the near future (even PBeoplke with developmental disabilities. Baltimore:.f h h k h.. ) h roo es.I t ey ave ta en no steps to ac leve It ,t ere Bruininks, R. H., Hill, B. K., Weatherman, R. F., &

are a cohesive set of "risk" factors. These fami- Woodcock, R. W. (1986). Inventory for Client and

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presslve sy~ptoms among the moth~r.s. ment: The revolt of parents of children with intellec-

There IS great fear among families about tuallimitations. Cambridge, MA: Brookline Books.

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' II .d ' h . hh tlon.tlCU ar y consl erlng t e Investment t ey ave F . d . h W N G b M T & C .KI d d .. h II b . f h ' fIe rlC, .., reen erg, .., rnIC,.

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1, , " esearc an raining enter or esl enrla,comfort to families and a promise of easier tran- Services and Community Living, Institute onsitions for adults with mental retardation who Community Integration.have always lived with their families, but whose Heller, T., & Factor, A. (1991). Permanency plan-future is dependent on the quality and capacity ning for adults with mental retardation living withof the community-based service system. family caregivers. American Journal on Mental Re-

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, Alzheimer disease victims with caregiving spouses. nal of Mental Deficiency, 90, 703-706.j Journal of Gerontology, 45, S259-S266. Zarit, S., Reever, K., & Bach-Peterson, J. (198C

: .'Radloff, L. (1977). The CES-D scale: A self-report Relatives of the impaired elderly: Correlatesdepression scale for research in the general popu- feelings of burden. The Gerontologist, 20, 649-65lation. Applied Psychological Measurement, 1,385-401. Receitled 12/1//95, first decision 5/20/96, accepted

Ryff, C. D. (1989). Happiness is everything, or is it? 7/5/96.Explorations on the meaning of psychological Editor-in-Charge: John O'Brienwell-being. Journal of Personality and Social Psy-chology, 57, 1069-1081. Support for this research was provided by the Natior

Seltzer, M. M., & Krauss, M. W. (1989). Aging par- Institute on Aging (Grant No. ROl AGO8768), the Suents with adult mentally retarded children: Fam- Center for Mental Retardation at Heller School, Brand,

.' ily risk factors and sources of support. American University, and the Waisman Center at the UniversityJournal on Mental Retardation, 94, 303-312. Wisconsin. We gratefully acknowledge the valuable co

Seltzer, M. M., & Krauss, M. W. (1994). Aging par- tributions of Barbara Larson and Dorothy Robison to tents with co-resident adult children: The impact research on whi~~ this article is based. We also th~nk. tof lifelong caregiving. In M. M. Seltzer, M. W. hundreds of famIlies who gave so generously of theIr tin

Krauss, & M. P. Janicki (Eds.), Life course perspec-titles on adulthood and old age (pp. 3-18). Wash- Authors: RUTH I. FREEDMAN, PhD, Assistaington, DC: The American Association on Professor, Boston University, School of Social WO!Mental Retardation. 264 Bay State Rd., Boston, MA 02215. MARl

Seltzer, M. M., Krauss, M. W., Choi, S. C., & Hong, WYNGAARDEN KRAUSS, PhD, Associate PrJ. (1996). Midlife and later life parenting of adult fessor, Heller School, Brandeis University, PO B(children with mental retardation. In C. D. Ryff 9110, Waltham, MA 02254. MARSHA MAILIC

"i: & M. M. Seltzer (Eds.). When children grow up: SELTZER, PhD, Professor, Waisman Center, 15(Ditlersity and detlelopment in mid-life parenting. Highland Ave., University of Wisconsin-Madiso

i Chicago: University of Chicago Press. Madison, WI 53705.

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