- Email: [email protected]
The impact of deinstitutionalization on family contact
Research in Developmental Disabilities 23 (2002) 202±210
The impact of deinstitutionalization on family contact$ Scott Spreata,*, James W. Conroyb a
Clinical Services, Woods Services, Langhorne, PA 19047, USA b Center for Outcome Analysis, Narberth, PA 19072, USA
Received 7 July 2001; received in revised form 28 November 2001; accepted 7 January 2002
Abstract Indices of family contact were reviewed across four cohorts of persons with mental retardation who were transferred from a large public institution to small supported living arrangements. In this longitudinal study, it was found that family contact increased subsequent to community placement, and that these increased levels of contact were maintained for as long as 4 years. # 2002 Elsevier Science Ltd. All rights reserved. Keywords: deinstitutionalization; supported living arrangements; family contact
1. Introduction Quality of life must be viewed as multidimensional in nature (Conroy & Elks, 1999). Factors such as community integration, job satisfaction, and friendships all seem to be essential components, but family contact must also be considered a signi®cant element of life quality (Schalock & Lilley, 1986). Not only are there the social components of family linkages, there is the fact that the greatest advocates and protectors for individuals who have mental retardation are most often their families. As a general rule, family contact must be viewed as both bene®cial and protective of persons with mental retardation (Zetlin, 1986). $ Data have been obtained through a cooperative agreement with the Oklahoma State University (OSU) Department of Sociology's Developmental Disabilities Quality Assurance Research Project. Since 1989, the Sociology Department at OSU has conducted yearly independent assessments of consumer outcomes for approximately 3700 individuals receiving services from the Oklahoma Department of Human Services Developmental Disabilities Services Division. * Corresponding author. Tel.: 1-215-750-4015. E-mail address: [email protected] (S. Spreat).
0891-4222/02/$ ± see front matter # 2002 Elsevier Science Ltd. All rights reserved. PII: S 0 8 9 1 - 4 2 2 2 ( 0 2 ) 0 0 0 9 8 - 7
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
203
When individuals enter residential placement, family contact becomes an even greater concern. In past generations, parents were advised to sever their ties with children who were placed in residential settings. Such advice is rarely given today, yet there is the observation that family contact diminishes as time passes (D'Onofrio, Robinson, Isett, Roszkowski, & Spreat, 1980; Intagliata, Willer, & Wicks, 1981). This loss of contact, sometimes called detachment, involves not only the loss of emotional support, but also the loss of advocacy and protection. A number of studies have examined family contact with persons who had been placed in residential programs. Blacher, Baker, and Fein®eld (1999) reported monthly visits by 83% of the studied families after 3.5 years of residential placement. Similarly, Baker, Blacher, and Pfeiffer (1996) found no evidence of detachment associated with residential placement; they reported that children and adults in residential placement averaged 21 family contacts per year. In an earlier study, Baker and Blacher (1994) found that family contact was high and stable for at least 2 years after residential placement. The authors (Baker & Blacher, 1993) also reported that 81% of the children placed in a residential program still experienced at least monthly visits with family members 2 years after placement. Skeie (1989) later reported that older persons with mental retardation had less family contact than did younger persons in institutional settings. Skeie's (1989) ®nding syncs with the earlier observation (D'Onofrio et al., 1980) that both increased age and increased years of institutionalization were correlated with diminished visitation. Dalgleish (1985) reported a similar ®nding with respect to age, but also noted that contact diminished when families lived more than eight miles from the residence. Baker et al. (1996) reported that lower visitation rates were associated with increased distance, the expectation that the child will remain in placement, and greater degrees of cognitive impairment. Transfer to community-based homes has yielded mixed results with respect to family contact. Spreat, Conroy, and Rice (1998) compared family contact for persons with mental retardation who either remained in nursing homes or transferred to community-based programs. Family contact increased by about 31% for persons who transferred to the community, but it was unchanged for persons remaining in the nursing homes. Similar ®ndings were reported by Latib, Conroy, and Hess (1984) in a study of persons transferred from a large institution to community-based alternatives. A pattern of increased family contact was also observed subsequent to community placement by de Kock, Saxby, Thomas, and Felce (1988). In contrast, Grimes and Vitello (1990) reported a decrease in family visits to the residential placement subsequent to transfer from a large public institution to smaller community alternatives. The picture that emerges from the literature is unclear. There is contradictory evidence about the family visitation impact of both initial residential placement and transfer to the community. The court ordered closing of Hissom Memorial Center (Ellison, 1987) in Oklahoma afforded the opportunity to examine the impact of sequentially introduced community placement on rates
204
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
of family contact for persons who have mental retardation. The purpose of this study is to longitudinally assess family contact across four groups of individuals who are transferred from a congregate care facility to small homes in the community. 2. Methods 2.1. Characteristics of study participants The participants in this study were those individuals who were discharged from Hissom Memorial Center to supported living arrangements and for whom annual data were available from 1991 through 1995. This represents a sample of the Hissom Focus Class who were ordered placed in small community residences. We de®ned four study cohorts, based on year of discharge from Hissom. There were 33 individuals who left Hissom in 1992, 56 who left in 1993, 38 who left in 1994, and 50 who left in 1995. Statistical analysis detected no cross cohort differences with respect to race or age. Chi-square analysis was used to compare the listed level of mental retardation for the cohorts (F 3; 173 5:41, p :01), and it was learned that individuals in the 1992 cohort exhibited lesser degrees of mental retardation. In addition, the 1992 and 1994 cohorts had relatively more males than did the 1993 and 1995 cohorts (w2 3 9:15, p :05). Table 1 summarizes demographic data for the four cohorts. Table 1 Demographic characteristics of longitudinal sample by discharge cohort Variable
Discharge year 1992
1993
1994
1995
Mean age in 1992 Percent male
27.0 73
27.0 54
25.9 74
27.0 48
Level of retardation Percent mild Percent moderate Percent severe Percent profound Percent other Percent with seizure activity
6.0 12.1 21.2 60.6 0 45
0 1.8 17.9 78.6 1.8 66
2.6 0 10.5 86.8 0 79
0 4.0 6.0 90.0 0 64
Race/ethnicity Percent white Percent black Percent American Indian Percent other
69.7 21.2 6.1 3.0
85.7 5.4 8.9 0
73.7 13.2 13.2 0
72.0 14.0 12.0 5.0
Total
33
56
38
50
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
205
2.2. Experimental design The institutional cycle design (Campbell & Stanley, 1966) was to assess the impact of community placement on family contact. Readers unfamiliar with this design might appropriately consider it to be a nomothetic analogue of the multiple baseline design. Treatment, in this case, movement to community homes, was sequentially introduced across the cohorts. This design enabled us to evaluate the effects of an ongoing intervention (i.e., movement to the community) as it was sequentially introduced across cohorts. Members of each cohort provided data during every year of the study, whether they lived in the institution or the community. Our primary interest was in whether there was a change in family contact following community placement for each cohort. 2.3. Instrumentation Oklahoma administers the Developmental Disabilities Quality Assurance Questionnaire (DDQAQ) (Oklahoma State University, 1992) for all service recipients within its mental retardation system on an annual basis. This assessment device includes major sections of adaptive behavior, challenging behavior, living site conditions, health, social interactions, community integration, service planning, family contact, and personal satisfaction. Fullerton, Douglass, and Dodder (1999) have reported satisfactory research reliabilities for all indices in the instrument. A copy of this comprehensive assessment device is available from the authors. Of particular interest to this study is the section on family contact. There are three questions in the questionnaire that address family contact. These three questions are answered by knowledgeable informants who work with the individual. Summing these three scores yields a brief family contact scale that has an internal consistency reliability of .87. A score of 18 on this scale would indicate maximal family involvement, while a score of 3 (lowest possible) would indicate that the individual had no family contact within the past year. People who had no families were not included in the analysis. Only persons who had families and who transferred to supported living arrangements were included in the analysis. Table 2 lists the three family questions. 2.4. Data collection procedures Data were collected by graduate students and staff from the Sociology Department at Oklahoma State University. The University conducts annual 2day training sessions on data collection methods to prepare the collectors. Data collection required access to: (a) the participant, (b) whomever knew the participant best on a day-to-day basis (typically, this individual was an aide in the home), (c) the participant's residence, and (d) records concerning the participant's services and supports. Inter-rater agreement is collected on a sample of items, including one of the family contact items. For the family contact item, we found a .75 correlation between different raters.
206
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
Table 2 Family contact items 1. In the past year, how often has there been contact by phone/mail/letters with the individual's family? 2. How often did family member(s) (biological/adoptive) visit him/her in the individual's home in the past year? 3. How often did s/he visit in the family's biological/adoptive home or on outings in the past year? All questions answered with: Lives with family About once a week or more About once a month About every 3 months Twice a year or less Never in the past year No family
3. Results Table 3 presents the mean family contact scores for each discharge cohort across the 5 years of the study. Because treatment was introduced at different times for each cohort, we elected to run separate repeated measures analyses of variance for each discharge cohort, adjusting the alpha level per the Bonferroni correction. Statistically signi®cant increases in family contact over time were noted for each cohort (cohort 1: F 1; 23 209:68, p < :01; cohort 2: F 1; 45 534:98, p < :01; cohort 3: F 1; 35 338:37, p < :01; and cohort 4: F 1; 44 334:05, p < :01). Family contact increased over the 5 years of data for each cohort. These data are presented in Table 3. With the recurrent institutional cycle design, the issue in this study is not simply whether there was change in the dependent measure, but whether that change was temporally contiguous with the experimental condition. That is, was the increase in family contact associated with placement in the supported living arrangements? Post hoc analyses (Tukey HSD) revealed a consistent pattern. For the discharge cohorts from 1993, 1994, and 1995, the only statistically signi®cant changes in family contact occurred immediately after placement to the Table 3 Mean family contact scores for the four discharge cohorts over time Discharge cohort
Year of data collection 1991
1992 1993 1994 1995
(N (N (N (N
24) 46) 36) 45)
7.9 7.7 7.9 6.9
(4.3) (3.1) (3.6) (3.2)
1992
1993
1994
a
a
a
10.7 8.1 7.9 7.3
(4.2) (3.8) (3.9) (3.8)
Standard deviations are listed in parentheses. a Data collected in supported living arrangements.
10.3 (4.4) 10.3a(3.7) 8.3 (3.2) 7.3 (3.1)
9.7 (4.3) 10.1a (3.9) 10.4a (3.2) 6.6 (2.6)
1995 9.5a 9.5a 9.7a 8.7a
(4.3) (3.8) (3.8) (3.9)
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
207
community, and these higher rates of contact were maintained. Data from the 1992 cohort are a little more complicated. There was a statistically signi®cant increase in family contact subsequent to community placement. In addition, family contact in 1995 in the community was indistinguishable from either the previous 3 years of community data or the 1991 Hissom data. The data seem to suggest an asymptotic function with respect to family contact over time. These data are illustrated in Fig. 1.
Fig. 1. Mean family contact scores plotted over time for each discharge cohort. Data to the left of the break line are institutional; data to the right are community.
208
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
In this limited sample, we found that the overall family visitation score for institutional data was 7.55 (of 18 possible), while the overall family visitation score for SLA data was 9.82. Lack of independence precludes more detailed analysis of these ®gures; the question can be better addressed by referencing the larger Oklahoma data base. In doing this, we found that in 1997, the average resident of an Oklahoma institution had a family visitation score of 7.9, while the average resident of a community-based program had a family visitation score of 11.7. These values were signi®cantly different (t 2272 21:5, p 0). Scale score increases are interesting, but it is important to attempt to assess the meaningfulness of the observed increases. The construction of the three family contact questions enabled us to estimate the actual number of family contacts per year for each individual. We estimated that persons living in Hissom had about nine family contacts per year, while persons living in the community had about 18 family contacts per year. 4. Discussion The data reveal that there was an increase in family contact subsequent to placement in supported living arrangements. Unfortunately, we cannot identify the cause for this increased family contact. It is conceivable that families initiated greater contact because of increased concern about the new residential site. Under such circumstances, one might expect an increase in contact, but one would probably expect this increased concern to dissipate over time and levels of contact to return to baseline levels. Latib et al. (1984) noted that parental dissatisfaction with community placement seemed to not only end, but completely turn around after about 6 months of placement. Thus, if increased concern were the likely cause of increased visitation, one would have expected visitation to decline over time. The data from our 1992 cohort seem to offer some preliminary suggestion of this trend, but there is not enough evidence to endorse this model. We can merely say that family contact seemed to increase subsequent to placement in the community, a ®nding that parallels the work of Spreat et al. (1998) regarding persons with mental retardation who left nursing homes for community placements. We estimated that family contact, in terms of actual contacts, essentially doubled subsequent to transfer to the community. It would seem, at face value, that the doubling of family contact would be meaningful to the lives of the persons involved. More importantly, it represents an increase opportunity for advocacy on behalf of the family member. As was noted above, parents have consistently been the greatest advocates and protectors of persons with mental retardation. Perhaps the greatest quality assurance mechanism that can support community placement is a high level of family involvement. We saw no appreciable evidence of detachment. Like the Baker and Blacher (1993) study of residential placement, we found greater than monthly family contact subsequent to transfer to the community. Examining only those cohorts who remained in the community for 2 or more years, we saw modest declines in
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
209
contact that failed to reach statistical signi®cance. Family involvement seemed to be best described as an increase in level of contact, and this increased level was maintained over time. It should also be noted that we saw no evidence of declining involvement for those who remained longer at Hissom. Of course, we lack data on the early period of their stay at Hissom, so it is conceivable that initial family contact levels were higher. The use of the recurrent institutional cycle design warrants discussion. Individuals were not randomly assigned to community placement, and it is reasonable to assume that persons discharged earlier were probably speci®cally selected for some reason. Our demographic data revealed differences with respect to gender and functioning level. In most experimental analyses, this lack of random assignment would be a signi®cant threat; however, with the recurrent institutional cycle design, it can actually be a strength. If a consistent response to community placement is evident across notably different groups, generalizability of ®ndings is enhanced (see Hersen & Barlow, 1976 for a discussion of this matter with respect to multiple baseline designs). There was greater family contact in the supported living arrangements than in the institution, and this pattern was consistently observed across cohorts with noteworthy demographic differences. This ®nding suggests a broader generalizability of the ®ndings than might have been presumed if equivalent groups had been studied. One threat to generalizability must be acknowledged. Due to the data requirements of a longitudinal design, there was some subject mortality in the study. Approximately 15% of the cases were unable to provide data in each of the 5 years of study. It was necessary to drop these individuals from the study. There is a potential threat to any such study that employs raters to collect data. If the raters had some sort of collective pro-community bias, it is conceivable that they might skew the results. We would argue that this threat is mitigated by the fact that other analyses of this Oklahoma data set (cf. Spreat & Conroy, 2001) have reported some areas in which raters reported more favorable scores in institutional settings. References Baker, B., & Blacher, J. (1993). Out of home placement for children with mental retardation: Dimensions of family involvement. American Journal on Mental Retardation, 98, 368±377. Baker, B., & Blacher, J. (1994). Family involvement in residential treatment of children with retardation: Is there evidence of detachment? Journal of Child Psychology & Psychiatry & Allied Disciplines, 35(3), 505±520. Baker, B., Blacher, J., & Pfeiffer, S. (1996). Family involvement in residential treatment. American Journal on Mental Retardation, 101, 1±14. Blacher, J., Baker, B., & Feinfield, K. (1999). Leaving or launching? Continuing family involvement with children and adolescents in placement. American Journal on Mental Retardation, 104(5), 452±465. Campbell, D., & Stanley, J. (1966). Experimental and quasi-experimental designs for research. Chicago: Rand McNally.
210
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
Conroy, J., & Elks, M. (1999). Tracking qualities of life during deinstitutionalization: A covariance study. Education and Training in Mental Retardation and Developmental Disabilities, 34, 212± 222. Dalgleish, M. (1985). Family contacts of mentally handicapped adults in different types of residential care. British Journal of Mental Subnormality, 31, 114±116. de Kock, U., Saxby, H., Thomas, M., & Felce, D. (1988). Community and family contact: An evaluation of small community homes for adults with severe and profound mental handicaps. Mental Handicap Research, 1, 127±140. D'Onofrio, A., Robinson, B., Isett, R., Roszkowski, M., & Spreat, S. (1980). Factors related to contact between mentally retarded persons and their parents during residential treatment. Mental Retardation, 18(6), 293±294. Ellison, J. (1987). Court plan and order of deinstitutionalization. Homeward Bound Inc. versus the Hissom Memorial Center, United States District Court, Northern District of Oklahoma. Fullerton, A., Douglass, M., & Dodder, R. (1999). A reliability study of measures assessing the impact of deinstitutionalization. Research in Developmental Disabilities, 20(6), 387±400. Grimes, S., & Vitello, S. (1990). Follow-up study of family attitudes towards deinstitutionalization: 3 to 7 years later. Mental Retardation, 28, 219±225. Hersen, M., & Barlow, D. (1976). Single case experimental designs. New York: Pergamon Press. Intagliata, J., Willer, B., & Wicks, N. (1981). Factors related to the quality of community adjustment in family care homes. In R. Bruininks, C. Meyers, B. Sigford, & K. Lakin (Eds.), Deinstitutionalization and community adjustment of mentally retarded people (Monograph no. 4, pp. 215±230). Washington, DC: American Association on Mental Deficiency. Latib, A., Conroy, J., & Hess, C. (1984). Family attitudes toward deinstitutionalization. In N. Ellis & N. Bray (Eds.), International review of research in mental retardation (Vol. 12, pp. 67±93). Orlando, FL: Academic Press. Oklahoma State University (1992). Developmental Disabilities Quality Assurance Questionnaire. Stillwater, Oklahoma: Oklahoma State University Department of Sociology. Schalock, R., & Lilley, M. (1986). Placement from community-based mental retardation programs: How well do clients do after 8 to 10 years? American Journal of Mental Deficiency, 85, 478±488. Skeie, G. (1989). Contact between elderly people with mental retardation living in institutions and their families. Australia and New Zealand Journal of Developmental Disabilities, 15, 201±206. Spreat, S., & Conroy, J. (2001). Community placement for persons with significant cognitive challenges: An outcome analysis. The Journal of the Association for Persons with Severe Handicaps, 26(2), 106±113. Spreat, S., Conroy, J., & Rice, M. (1998). Improve quality in nursing homes or institute community placement: Implementation of OBRA for individuals with mental retardation. Research in Developmental Disabilities, 19, 507±518. Zetlin, A. (1986). Mentally retarded adults and their siblings. American Journal of Mental Deficiency, 91, 217±225.
The impact of deinstitutionalization on family contact$ Scott Spreata,*, James W. Conroyb a
Clinical Services, Woods Services, Langhorne, PA 19047, USA b Center for Outcome Analysis, Narberth, PA 19072, USA
Received 7 July 2001; received in revised form 28 November 2001; accepted 7 January 2002
Abstract Indices of family contact were reviewed across four cohorts of persons with mental retardation who were transferred from a large public institution to small supported living arrangements. In this longitudinal study, it was found that family contact increased subsequent to community placement, and that these increased levels of contact were maintained for as long as 4 years. # 2002 Elsevier Science Ltd. All rights reserved. Keywords: deinstitutionalization; supported living arrangements; family contact
1. Introduction Quality of life must be viewed as multidimensional in nature (Conroy & Elks, 1999). Factors such as community integration, job satisfaction, and friendships all seem to be essential components, but family contact must also be considered a signi®cant element of life quality (Schalock & Lilley, 1986). Not only are there the social components of family linkages, there is the fact that the greatest advocates and protectors for individuals who have mental retardation are most often their families. As a general rule, family contact must be viewed as both bene®cial and protective of persons with mental retardation (Zetlin, 1986). $ Data have been obtained through a cooperative agreement with the Oklahoma State University (OSU) Department of Sociology's Developmental Disabilities Quality Assurance Research Project. Since 1989, the Sociology Department at OSU has conducted yearly independent assessments of consumer outcomes for approximately 3700 individuals receiving services from the Oklahoma Department of Human Services Developmental Disabilities Services Division. * Corresponding author. Tel.: 1-215-750-4015. E-mail address: [email protected] (S. Spreat).
0891-4222/02/$ ± see front matter # 2002 Elsevier Science Ltd. All rights reserved. PII: S 0 8 9 1 - 4 2 2 2 ( 0 2 ) 0 0 0 9 8 - 7
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
203
When individuals enter residential placement, family contact becomes an even greater concern. In past generations, parents were advised to sever their ties with children who were placed in residential settings. Such advice is rarely given today, yet there is the observation that family contact diminishes as time passes (D'Onofrio, Robinson, Isett, Roszkowski, & Spreat, 1980; Intagliata, Willer, & Wicks, 1981). This loss of contact, sometimes called detachment, involves not only the loss of emotional support, but also the loss of advocacy and protection. A number of studies have examined family contact with persons who had been placed in residential programs. Blacher, Baker, and Fein®eld (1999) reported monthly visits by 83% of the studied families after 3.5 years of residential placement. Similarly, Baker, Blacher, and Pfeiffer (1996) found no evidence of detachment associated with residential placement; they reported that children and adults in residential placement averaged 21 family contacts per year. In an earlier study, Baker and Blacher (1994) found that family contact was high and stable for at least 2 years after residential placement. The authors (Baker & Blacher, 1993) also reported that 81% of the children placed in a residential program still experienced at least monthly visits with family members 2 years after placement. Skeie (1989) later reported that older persons with mental retardation had less family contact than did younger persons in institutional settings. Skeie's (1989) ®nding syncs with the earlier observation (D'Onofrio et al., 1980) that both increased age and increased years of institutionalization were correlated with diminished visitation. Dalgleish (1985) reported a similar ®nding with respect to age, but also noted that contact diminished when families lived more than eight miles from the residence. Baker et al. (1996) reported that lower visitation rates were associated with increased distance, the expectation that the child will remain in placement, and greater degrees of cognitive impairment. Transfer to community-based homes has yielded mixed results with respect to family contact. Spreat, Conroy, and Rice (1998) compared family contact for persons with mental retardation who either remained in nursing homes or transferred to community-based programs. Family contact increased by about 31% for persons who transferred to the community, but it was unchanged for persons remaining in the nursing homes. Similar ®ndings were reported by Latib, Conroy, and Hess (1984) in a study of persons transferred from a large institution to community-based alternatives. A pattern of increased family contact was also observed subsequent to community placement by de Kock, Saxby, Thomas, and Felce (1988). In contrast, Grimes and Vitello (1990) reported a decrease in family visits to the residential placement subsequent to transfer from a large public institution to smaller community alternatives. The picture that emerges from the literature is unclear. There is contradictory evidence about the family visitation impact of both initial residential placement and transfer to the community. The court ordered closing of Hissom Memorial Center (Ellison, 1987) in Oklahoma afforded the opportunity to examine the impact of sequentially introduced community placement on rates
204
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
of family contact for persons who have mental retardation. The purpose of this study is to longitudinally assess family contact across four groups of individuals who are transferred from a congregate care facility to small homes in the community. 2. Methods 2.1. Characteristics of study participants The participants in this study were those individuals who were discharged from Hissom Memorial Center to supported living arrangements and for whom annual data were available from 1991 through 1995. This represents a sample of the Hissom Focus Class who were ordered placed in small community residences. We de®ned four study cohorts, based on year of discharge from Hissom. There were 33 individuals who left Hissom in 1992, 56 who left in 1993, 38 who left in 1994, and 50 who left in 1995. Statistical analysis detected no cross cohort differences with respect to race or age. Chi-square analysis was used to compare the listed level of mental retardation for the cohorts (F 3; 173 5:41, p :01), and it was learned that individuals in the 1992 cohort exhibited lesser degrees of mental retardation. In addition, the 1992 and 1994 cohorts had relatively more males than did the 1993 and 1995 cohorts (w2 3 9:15, p :05). Table 1 summarizes demographic data for the four cohorts. Table 1 Demographic characteristics of longitudinal sample by discharge cohort Variable
Discharge year 1992
1993
1994
1995
Mean age in 1992 Percent male
27.0 73
27.0 54
25.9 74
27.0 48
Level of retardation Percent mild Percent moderate Percent severe Percent profound Percent other Percent with seizure activity
6.0 12.1 21.2 60.6 0 45
0 1.8 17.9 78.6 1.8 66
2.6 0 10.5 86.8 0 79
0 4.0 6.0 90.0 0 64
Race/ethnicity Percent white Percent black Percent American Indian Percent other
69.7 21.2 6.1 3.0
85.7 5.4 8.9 0
73.7 13.2 13.2 0
72.0 14.0 12.0 5.0
Total
33
56
38
50
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
205
2.2. Experimental design The institutional cycle design (Campbell & Stanley, 1966) was to assess the impact of community placement on family contact. Readers unfamiliar with this design might appropriately consider it to be a nomothetic analogue of the multiple baseline design. Treatment, in this case, movement to community homes, was sequentially introduced across the cohorts. This design enabled us to evaluate the effects of an ongoing intervention (i.e., movement to the community) as it was sequentially introduced across cohorts. Members of each cohort provided data during every year of the study, whether they lived in the institution or the community. Our primary interest was in whether there was a change in family contact following community placement for each cohort. 2.3. Instrumentation Oklahoma administers the Developmental Disabilities Quality Assurance Questionnaire (DDQAQ) (Oklahoma State University, 1992) for all service recipients within its mental retardation system on an annual basis. This assessment device includes major sections of adaptive behavior, challenging behavior, living site conditions, health, social interactions, community integration, service planning, family contact, and personal satisfaction. Fullerton, Douglass, and Dodder (1999) have reported satisfactory research reliabilities for all indices in the instrument. A copy of this comprehensive assessment device is available from the authors. Of particular interest to this study is the section on family contact. There are three questions in the questionnaire that address family contact. These three questions are answered by knowledgeable informants who work with the individual. Summing these three scores yields a brief family contact scale that has an internal consistency reliability of .87. A score of 18 on this scale would indicate maximal family involvement, while a score of 3 (lowest possible) would indicate that the individual had no family contact within the past year. People who had no families were not included in the analysis. Only persons who had families and who transferred to supported living arrangements were included in the analysis. Table 2 lists the three family questions. 2.4. Data collection procedures Data were collected by graduate students and staff from the Sociology Department at Oklahoma State University. The University conducts annual 2day training sessions on data collection methods to prepare the collectors. Data collection required access to: (a) the participant, (b) whomever knew the participant best on a day-to-day basis (typically, this individual was an aide in the home), (c) the participant's residence, and (d) records concerning the participant's services and supports. Inter-rater agreement is collected on a sample of items, including one of the family contact items. For the family contact item, we found a .75 correlation between different raters.
206
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
Table 2 Family contact items 1. In the past year, how often has there been contact by phone/mail/letters with the individual's family? 2. How often did family member(s) (biological/adoptive) visit him/her in the individual's home in the past year? 3. How often did s/he visit in the family's biological/adoptive home or on outings in the past year? All questions answered with: Lives with family About once a week or more About once a month About every 3 months Twice a year or less Never in the past year No family
3. Results Table 3 presents the mean family contact scores for each discharge cohort across the 5 years of the study. Because treatment was introduced at different times for each cohort, we elected to run separate repeated measures analyses of variance for each discharge cohort, adjusting the alpha level per the Bonferroni correction. Statistically signi®cant increases in family contact over time were noted for each cohort (cohort 1: F 1; 23 209:68, p < :01; cohort 2: F 1; 45 534:98, p < :01; cohort 3: F 1; 35 338:37, p < :01; and cohort 4: F 1; 44 334:05, p < :01). Family contact increased over the 5 years of data for each cohort. These data are presented in Table 3. With the recurrent institutional cycle design, the issue in this study is not simply whether there was change in the dependent measure, but whether that change was temporally contiguous with the experimental condition. That is, was the increase in family contact associated with placement in the supported living arrangements? Post hoc analyses (Tukey HSD) revealed a consistent pattern. For the discharge cohorts from 1993, 1994, and 1995, the only statistically signi®cant changes in family contact occurred immediately after placement to the Table 3 Mean family contact scores for the four discharge cohorts over time Discharge cohort
Year of data collection 1991
1992 1993 1994 1995
(N (N (N (N
24) 46) 36) 45)
7.9 7.7 7.9 6.9
(4.3) (3.1) (3.6) (3.2)
1992
1993
1994
a
a
a
10.7 8.1 7.9 7.3
(4.2) (3.8) (3.9) (3.8)
Standard deviations are listed in parentheses. a Data collected in supported living arrangements.
10.3 (4.4) 10.3a(3.7) 8.3 (3.2) 7.3 (3.1)
9.7 (4.3) 10.1a (3.9) 10.4a (3.2) 6.6 (2.6)
1995 9.5a 9.5a 9.7a 8.7a
(4.3) (3.8) (3.8) (3.9)
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
207
community, and these higher rates of contact were maintained. Data from the 1992 cohort are a little more complicated. There was a statistically signi®cant increase in family contact subsequent to community placement. In addition, family contact in 1995 in the community was indistinguishable from either the previous 3 years of community data or the 1991 Hissom data. The data seem to suggest an asymptotic function with respect to family contact over time. These data are illustrated in Fig. 1.
Fig. 1. Mean family contact scores plotted over time for each discharge cohort. Data to the left of the break line are institutional; data to the right are community.
208
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
In this limited sample, we found that the overall family visitation score for institutional data was 7.55 (of 18 possible), while the overall family visitation score for SLA data was 9.82. Lack of independence precludes more detailed analysis of these ®gures; the question can be better addressed by referencing the larger Oklahoma data base. In doing this, we found that in 1997, the average resident of an Oklahoma institution had a family visitation score of 7.9, while the average resident of a community-based program had a family visitation score of 11.7. These values were signi®cantly different (t 2272 21:5, p 0). Scale score increases are interesting, but it is important to attempt to assess the meaningfulness of the observed increases. The construction of the three family contact questions enabled us to estimate the actual number of family contacts per year for each individual. We estimated that persons living in Hissom had about nine family contacts per year, while persons living in the community had about 18 family contacts per year. 4. Discussion The data reveal that there was an increase in family contact subsequent to placement in supported living arrangements. Unfortunately, we cannot identify the cause for this increased family contact. It is conceivable that families initiated greater contact because of increased concern about the new residential site. Under such circumstances, one might expect an increase in contact, but one would probably expect this increased concern to dissipate over time and levels of contact to return to baseline levels. Latib et al. (1984) noted that parental dissatisfaction with community placement seemed to not only end, but completely turn around after about 6 months of placement. Thus, if increased concern were the likely cause of increased visitation, one would have expected visitation to decline over time. The data from our 1992 cohort seem to offer some preliminary suggestion of this trend, but there is not enough evidence to endorse this model. We can merely say that family contact seemed to increase subsequent to placement in the community, a ®nding that parallels the work of Spreat et al. (1998) regarding persons with mental retardation who left nursing homes for community placements. We estimated that family contact, in terms of actual contacts, essentially doubled subsequent to transfer to the community. It would seem, at face value, that the doubling of family contact would be meaningful to the lives of the persons involved. More importantly, it represents an increase opportunity for advocacy on behalf of the family member. As was noted above, parents have consistently been the greatest advocates and protectors of persons with mental retardation. Perhaps the greatest quality assurance mechanism that can support community placement is a high level of family involvement. We saw no appreciable evidence of detachment. Like the Baker and Blacher (1993) study of residential placement, we found greater than monthly family contact subsequent to transfer to the community. Examining only those cohorts who remained in the community for 2 or more years, we saw modest declines in
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
209
contact that failed to reach statistical signi®cance. Family involvement seemed to be best described as an increase in level of contact, and this increased level was maintained over time. It should also be noted that we saw no evidence of declining involvement for those who remained longer at Hissom. Of course, we lack data on the early period of their stay at Hissom, so it is conceivable that initial family contact levels were higher. The use of the recurrent institutional cycle design warrants discussion. Individuals were not randomly assigned to community placement, and it is reasonable to assume that persons discharged earlier were probably speci®cally selected for some reason. Our demographic data revealed differences with respect to gender and functioning level. In most experimental analyses, this lack of random assignment would be a signi®cant threat; however, with the recurrent institutional cycle design, it can actually be a strength. If a consistent response to community placement is evident across notably different groups, generalizability of ®ndings is enhanced (see Hersen & Barlow, 1976 for a discussion of this matter with respect to multiple baseline designs). There was greater family contact in the supported living arrangements than in the institution, and this pattern was consistently observed across cohorts with noteworthy demographic differences. This ®nding suggests a broader generalizability of the ®ndings than might have been presumed if equivalent groups had been studied. One threat to generalizability must be acknowledged. Due to the data requirements of a longitudinal design, there was some subject mortality in the study. Approximately 15% of the cases were unable to provide data in each of the 5 years of study. It was necessary to drop these individuals from the study. There is a potential threat to any such study that employs raters to collect data. If the raters had some sort of collective pro-community bias, it is conceivable that they might skew the results. We would argue that this threat is mitigated by the fact that other analyses of this Oklahoma data set (cf. Spreat & Conroy, 2001) have reported some areas in which raters reported more favorable scores in institutional settings. References Baker, B., & Blacher, J. (1993). Out of home placement for children with mental retardation: Dimensions of family involvement. American Journal on Mental Retardation, 98, 368±377. Baker, B., & Blacher, J. (1994). Family involvement in residential treatment of children with retardation: Is there evidence of detachment? Journal of Child Psychology & Psychiatry & Allied Disciplines, 35(3), 505±520. Baker, B., Blacher, J., & Pfeiffer, S. (1996). Family involvement in residential treatment. American Journal on Mental Retardation, 101, 1±14. Blacher, J., Baker, B., & Feinfield, K. (1999). Leaving or launching? Continuing family involvement with children and adolescents in placement. American Journal on Mental Retardation, 104(5), 452±465. Campbell, D., & Stanley, J. (1966). Experimental and quasi-experimental designs for research. Chicago: Rand McNally.
210
S. Spreat, J.W. Conroy / Research in Developmental Disabilities 23 (2002) 202±210
Conroy, J., & Elks, M. (1999). Tracking qualities of life during deinstitutionalization: A covariance study. Education and Training in Mental Retardation and Developmental Disabilities, 34, 212± 222. Dalgleish, M. (1985). Family contacts of mentally handicapped adults in different types of residential care. British Journal of Mental Subnormality, 31, 114±116. de Kock, U., Saxby, H., Thomas, M., & Felce, D. (1988). Community and family contact: An evaluation of small community homes for adults with severe and profound mental handicaps. Mental Handicap Research, 1, 127±140. D'Onofrio, A., Robinson, B., Isett, R., Roszkowski, M., & Spreat, S. (1980). Factors related to contact between mentally retarded persons and their parents during residential treatment. Mental Retardation, 18(6), 293±294. Ellison, J. (1987). Court plan and order of deinstitutionalization. Homeward Bound Inc. versus the Hissom Memorial Center, United States District Court, Northern District of Oklahoma. Fullerton, A., Douglass, M., & Dodder, R. (1999). A reliability study of measures assessing the impact of deinstitutionalization. Research in Developmental Disabilities, 20(6), 387±400. Grimes, S., & Vitello, S. (1990). Follow-up study of family attitudes towards deinstitutionalization: 3 to 7 years later. Mental Retardation, 28, 219±225. Hersen, M., & Barlow, D. (1976). Single case experimental designs. New York: Pergamon Press. Intagliata, J., Willer, B., & Wicks, N. (1981). Factors related to the quality of community adjustment in family care homes. In R. Bruininks, C. Meyers, B. Sigford, & K. Lakin (Eds.), Deinstitutionalization and community adjustment of mentally retarded people (Monograph no. 4, pp. 215±230). Washington, DC: American Association on Mental Deficiency. Latib, A., Conroy, J., & Hess, C. (1984). Family attitudes toward deinstitutionalization. In N. Ellis & N. Bray (Eds.), International review of research in mental retardation (Vol. 12, pp. 67±93). Orlando, FL: Academic Press. Oklahoma State University (1992). Developmental Disabilities Quality Assurance Questionnaire. Stillwater, Oklahoma: Oklahoma State University Department of Sociology. Schalock, R., & Lilley, M. (1986). Placement from community-based mental retardation programs: How well do clients do after 8 to 10 years? American Journal of Mental Deficiency, 85, 478±488. Skeie, G. (1989). Contact between elderly people with mental retardation living in institutions and their families. Australia and New Zealand Journal of Developmental Disabilities, 15, 201±206. Spreat, S., & Conroy, J. (2001). Community placement for persons with significant cognitive challenges: An outcome analysis. The Journal of the Association for Persons with Severe Handicaps, 26(2), 106±113. Spreat, S., Conroy, J., & Rice, M. (1998). Improve quality in nursing homes or institute community placement: Implementation of OBRA for individuals with mental retardation. Research in Developmental Disabilities, 19, 507±518. Zetlin, A. (1986). Mentally retarded adults and their siblings. American Journal of Mental Deficiency, 91, 217±225.