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Post-adoption needs of families adopting children with developmental disabilities
019&74oQF)Is3.ab.al
Chihrn md YcwhServica Reimv. Vd. 13. pp. 413424. IS91 F’tinted in the USA. All tigltta tuavcd.
Copyright Q 1991 Pergattton Ptru plc
Post-Adoption Needs of Families Adopting Children with Developmental Disabilities Maureen 0. Marcenko Hahnemann University Linda K. Smith Wayne State University
The post-adoption service use and needs of 125 families who had adopted children with developmental disabilities were examined using a structured mail questionnaire. Although satisfaction with services used was generally high, many families did not have access to basic family support services such as respite care, life planning and support groups. Income was the only demographic variable which correlated with service need. Middle income families (mean = $30,000 to $34,999) were more likely to need support groups and babysitting for other children than either lower or higher income groups. Of particular note in this study is the relatively high incidence of transracialadoptions. Thirty-one percent of the sample had adopted children of a different race than the family. The implications of the findings and service recommendations are discussed.
In the past of children tices is the movement,
twenty years, there has been increasing emphasis on adoption with developmental disabilities. This shift in adoption pracresult of two concurrent trends: 1) the permanency planning which sought to place children living in foster care homes into
permanent homes; and 2) a decrease available for adoption (Hardy, 1984).
in the number
of healthy
infants
This research was fun&d in part by a grant from the Department of Health and Human Services, Administration for Children, Youth and Families, Grant Number 9OCOO353. The authors would lie to thank Janice Dady-Jordan and the staff of Spaulding for Children for their assistance in conceptualizing and distributing the questionnaire and the families for providing us with the information. Requests for reprints should be addressed to Maureen Marcenko. Hahnemann University, 1427 Vine, M.S. 988. Philadelphia, Pennsylvania 19102-l 192.
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Experience over time has shown that children with developmental disabilities are adoptable. In Michigan, adoption of children with disabilities rose over 30% in the period from 1979 to 1981 (Michigan Department of Social Services, 1982) and has continued to increase. On a wider scale, a survey of adoption agencies across the United States and Canada revealed that between 1979 and 1980 alone, almost 1600 children with developmental disabilities were placed in adoptive homes by 324 agencies (Coyne & Brown, 1985). Descriptive information obtained for 693 of the children in this study indicate that a vast majority (92%) had mental retardation and/or cerebral palsy and that approximately 23% were considered severely or profoundly impaired (Coyne & Brown, 1985). Children with developmental disabilities present a number of caregiving demands to the adoptive family, most of which will persist throughout the life of the child. Therefore, specialized, ongoing support for the child and family is necessary. In concept and practice, postadoption services parallel family support services provided to families of children with developmental disabilities. The goal of family support services is to provide the social and financial support necessary to maintain healthy family functioning and reduce the daily stress of caring for a child with disabilities (Ago&r & Bradley, 1985). In the case of adoptive families, not only are they in need of support services, but they also require assistance dealing with the adjustment issues which accompany adoption. Post-adoption services emanating from the adoption agency are not typically available because agency resources are likely to give precedence to children in pre-adoptive status. Consequently, families are left to negotiate the generic system of services designed for those with family members who have a developmental disability, a system which has been characterized as fragmented, uncoordinated, slow to respond and cumbersome (Bryne & Cunningham, 1985; Krauss, 1986). Providers in the developmental disabilities service system also may not be knowledgeable about the particular issues confronting adoptive families such as bonding, reattachment, and changes in family structure. Given the caregiving demands of children with developmental disabilities and the apparent lack of an effective system of family support services, it is not surprising that disruption of adoptions has been frequently reported among these families. Disruption rates ranging from 7% to 20% were reported in studies by Benton, Kaye, & Tipton (1985), Festinger (1986), Groze (1986), & Tandberg & Bombeck (1984). While several studies have explored characteristics of families and children which are associated with adoption outcome (Barth, Berry, Carson, Goodfield, & Feinberg, 1988; Groze, 1986; Rosenthal, Schmidt, & Conner, 1988; Zwimpfer, 1983), few have examined the impact of post-
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Post Adoption Needs
adoption services and supports on that outcome, particularly over the long term. Nelson (1985) notes that families participating in her study were heavy consumers of services, utilizing formal as well as informal networks. Adoption subsidies and away-from-home care were deemed especially important, but Nelson notes that many other services were difficult to obtain or unsatisfactory for some families. A number of other researchers have indicated a need for post-placement services (Coyne & Brown, 1985; Graze, 1986; Macaskill, 1986; Rushton, 1989), but little is known about what families are actually receiving and what they perceive as their greatest needs. The present study was undertaken to identify the post-adoption service use and needs of families who have adopted children with developmental disabilities. Also examined are satisfaction with current services and differences in both use and need by family demographic characteristics. As a further indicator of possible service need, the relationship between the family’s expectations of the child’s caregiving demands and behavior prior to adoption and the actual experience of families post-adoption is explored. Methodology
The archives of Michigan’s Spaulding for Children served as the major source of names of families who had adopted children with developmental disabilities. Project staff searched the records of all families who had adopted children since Spauldings’ inception in 1968 and attempted to identify families who had adopted children with disabilities. The term, “developmental disabilities,” has only been in common use for approximately the last ten years, therefore it was necessary to decipher whether the children had disabilities from the case records. Furthermore, since adoption agencies have historically had little contact with families once the adoption was finalized, some of the addresses were as much as twenty years old. A second source was other agencies in metropolitan Detroit that place children with developmental disabilities. Questionnaires were sent to agencies known to place children with developmental disabilities, with a request to forward the forms to appropriate families. A final source of subjects was those families identified through a self-help parent group consisting of parents who had adopted children with disabilities. Families received a letter explaining the purpose of the study, a questionnaire, and a stamped envelope addressed to the researchers. In total, approximately 300 questionnaires were distributed. The actual number of usable completed questionnaires was 125. It is not possible to
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know how many families actually received the questionnaires, therefore a response rate is invalid in this situation. The questionnaire consisted of basic demographic data, questions regarding the disability and health problems of the children, the family’s understanding of the child’s disability at the time of adoption, and the accuracy with which the child’s problems were presented by the adoption agency. Families were also asked to indicate, from a list of 25 services, which they had used, their satisfaction or dissatisfaction with those services and, if not used, whether they needed the service. Although the questionnaire was designed primarily in a closed-ended format, families were asked to offer suggestions which would help develop programs for adoptive families of children with special needs. Data were collected for all adopted children, however, the results reported here relate only to the first adopted child. This is because the experience and expectations of families subsequent to the first adoption may be sufficiently different to skew the results. For instance, families may have obtained information about services with their first adopted child leading to greater use of services with the addition of other adoptive children. Characteristics of the Sample The 125 families had adopted a total of 308 children. As seen in Table 1, most had adopted one child (41%) and the mean number of adopted children was three. Thirty one percent of the sample had adopted children of a different race than the parents. Of that 31% (n = 39), all the parents were white, with the exception of one Black family who had adopted a white child. Thirty eight white families had adopted children who were either Black (29%), Asian (13), or Hispanic (3%) and 45% of the 38 families had adopted children representing two different minority groups. Family income ranged from less than $8,000 per year to greater than $50,000, with the median income between $30,000 and $35,000. Questionnaire respondents were primarily mothers (93%), although 7% of the respondents were fathers. More than half of the respondents (55%) had at least some college and 51% classified themselves as homemakers. At the time of the survey, the mean age of the first adopted children was 12.75 while the mean age at adoption was 6.26. Consequently, the mean number of years the first child had been in adoption placement was 6.5. Ninety two percent of these children were involved in special education. The most common disability of the children was mental retardation (70%) followed by severe speech impairment (34%), cerebral palsy (30%) and
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Post Adoption Needs
seizure disorders (30%). Several of the children had behavioral problems, with temper tantrums (39%), defiance (36%). and picking on others (28%) mentioned most frequently. It appears that our sample is similar demographically to other studies of families who adopt children with developmental disabilities. Nelson, in her 1985 study of eight voluntary and public adoption agencies in the United States found that most were married (83%) and had adopted a mean of four children. In terms of the child’s disability, Coyne and Brown (1985) found that the most common disability was mental retardation, followed by cerebral palsy. Results Families were generally satisfied with those services they had used or, if they had not used the service, they felt that it was not needed (see Table 2). However, there were some essential family support services which families needed but had not used. The service families named as needing most frequently (23%) was respite care. This may actually underestimate the families in need of respite care because there was not a response category which read “used, but needed more.” Therefore, those families satisfied with the respite services they did receive, but requiring more of it, did not have a category in which to note that. In fact, in the open-ended section of the questionnaire many of the families identified the need for more respite care. This need was closely followed by life planning for the child (22%), support groups (20%) and babysitting for the other children (17%). The services which families were most often dissatisfied with were educational services (13%) and counseling for the child (10%). In general families reported high levels of satisfaction for those services they had used.
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Table 1 Characteristics of the Sample Variable Total # of Adopted Children 1 child 2 children 3 children 4 children > 5 children Race of Family All white All black Mixed Family Income $8,ooO to 14,999 15,000 to 24,999 25,000 to 34,999 35,000 to 49,999 > 50,000 Marital Status of Respondent Mal-lied Single Education of Respondent < High School High School Some College Employment Status of Respondent Employed Homemaker Unemployed Age of First Child at Adoption 1 to 3 years 4 to 6 7 to 9 10 to 12 13 to 19 Current Age of First Adopted Child 2 to 5 years 6to 10 11 to 15 16 to 20 > 21 N= 125
% 41 19 12 15 12 57 12 31 6 26 26 31 11 76 24 8 37 55 36 51 13 35 24 16 15 10 11 27 30 23 10
Post Adoption Needs
419
Table 2 Service Use and Satisfaction
Service Respite Care Life Planning Support Groups Babysitting(other children) Homemaker Services Advocacy Training Training to Care for Child Day Care Residential (child) Family Counseling Home Nursing Legal Aid Counseling (child) Transportation Educational Services Health Insurance (child) Dental Care Speech Therapy Occupational Therapy Physical Therapy Routine Medical Care
Not Satisfied Dissatisfied Needed Needed % 96 % 46 19 7 27 13 3 7 17 6 6 8 4 3 15 26 48 53 80 43 40 40 85
6 5 4 7 1 3 4 4 3 5 0 1 10 3 13 7 3 8 5 9 4
23 22 20 17 13 11 10 9 9 8 7 7 6 5 4 3 3 3 3 3 1
52 66 49 63 84 79 69 81 81 78 88 89 68 66 35 38 15 46 52 48 7
We tested whether there were differences in service need by selected demographic variables. The analysis was limited to the first seven services, which represented needed services by at least 10% of the families. The “used and satisfied” response category was combined with “used and dissatisfied” to form a “used” category because there were few families in the “dissatisfied” cell. The two remaining response categories, “not used, but needed” and “not used, not needed,” were preserved. Oneway analysis of variance was performed to determine differences between the three categories by income, total number of family members or education of the respondent. The analysis revealed no significant differences in the level of need for respite, life planning, homemaker
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Marcenko and Smith
services, advocacy training or training to care for the child by any of the variables tested (is greater than .05). Income was the only demographic variable which correlated with support groups and babysitting for other children. Higher income families (mean = $35,000 to 39,999) used support groups and babysitting for other children more often, middle income families (mean = $30,000 to 34,999) were more likely to need but not have support groups or babysitting for other children, and lower income families (mean = $25,000 to 29,999) were more likely to report that they did not need either service. (Support groups: F(2, 106) = 3.35, c .04); Babysitting for other children: F (2, 106) = 3.96, < .02). A similar analysis utilizing chi-square was conducted to test the relationship between the seven services identified above and marital status. There were no significant differences between the three categories of service need and marital status on any of the services tested with the exception of advocacy training. Single respondents (25%) were more likely to have used advocacy training than married respondents (5%) and married subjects (84%) were more likely to state that they did not need the service than single subjects (64%) ( 2 (2, N = 121) = 9.40, < .Ol). Eleven percent of both groups stated that they needed but had not received advocacy training. In an open-ended format, families were asked, “Do you have any comments or suggestions which would help us in developing programs for adoptive families?” Several themes emerged from the responses to this question. Families reiterated the need for respite care, support from other parents and life planning services. Typical of the statements regarding respite care were: “Vacation respite and easier access or availability of respite persons; in home respite care with a responsible adult who isn’t afraid of seizures; follow-up care such as providing alternate care persons for vacations and/or weekends.” With respect to support from other parents, families had several suggestions. These included: “Butting families in touch with other families whose child has similar problems; adoptive families should meet together on a regular basis to share ideas.” Some families stated that their adopted teenagers could also benefit from support groups. The necessity for life planning services was apparent in the case of the parent who said “Our main concern right now is what happens when our adopted children turn 18.” Families also felt that there should be more affordable counseling available; that greater financial support should be provided; and that more and better information should be provided on the adopted child’s background. There were a number of open-ended responses which could be grouped under the rubric of “information.” These included information about services, various disabilities, how to deal with difficult behaviors,
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Post Adoption Needs
and how to care for a child with special needs. Finally, many families felt that there should be follow-up services once the child has been adopted. This was summed-up by one parent who stated, “Someone to listen and understand the problems adoptive parents face without having to fear the removal of the children when problems arise.” Although a number of service needs were identified by the families surveyed, often parents are not sure about what is available or even what would be helpful. This point was well-made by the parent who wrote, “We don’t always know what (services) might help make our children’s and our lives easier, even if we’re long time parents!” Adoption agencies are interested in an assessment of how well they prepare adoptive families for the caregiving demands of a child with disabilities. We asked parents “Do you feel you understood at the time of adoption the problems your child might have, based on his/her disability?” Seventy-nine percent felt that they understood the child’s potential problems and 21% stated that they did not have an adequate understanding. In the same vein, we asked “Has your child’s behavior been better, worse or about the same as you expected?” Forty-three percent of the respondents indicated that the child’s behavior was better than expected, 24% thought it was worse, and 33% felt that it was about the same.
Discussion
The results of this study indicate that many families who adopt children with developmental disabilities have unmeet service needs. For instance, almost a quarter of the families surveyed did not have access to respite care, the most basic family support service. Families were also concerned about the future of their children, as indicated by their need for life planning services. The service most frequently used by families was support groups, still 20% of the sample stated that they needed but had not received this service. Families, for the most part, were satisfied with the services they did receive. It was interesting to note that higher income families ($35,000 to $39,999) were more likely to have support group services and families in the $30,000 to $34,999 range were more likely to indicate the need for a support group. Agencies providing this service may have to reach out to middle income families to assure accessibility. The same relationship held true for babysitting for the other children. This may be an issue of economics, whereby families with incomes in the mid-range are unable to afford babysitting for their other children, although lower income families did not indicate that they needed babysitting services.
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Also of note is that single parents used advocacy training more frequently than married parents. It may be that parents confronting the care of the child and the service system alone feel the need for assistance in advocacy. The reasons for these differences by income and marital status are not clear, but require further research. The parents who responded to this survey were predominantly white, but 31% of them had adopted children of a different race than themselves. We could not locate Michigan or national data on the incidence of transracial adoption for 1982, which would have been the mean year for placement of the first adopted child in our sample. However, between October 1988 and September 1989, 12% of all Michigan adoptions of state wards were transracial. This included both children with and without developmental disabilities. If our sample is representative of families who adopt children with disabilities, then the data suggest that the incidence of transracial adoption is higher among children with developmental disabilities. The current philosophy and practice in the adoption field recommends against transracial adoption except in cases where a same race family cannot be identified. It appears that this practice is not being as consistently adhered to in the placement of children with developmental disabilities as it is with non- disabled children. Further investigation is required to determine whether children with disabilities are actually treated differently and if so, what the implications are for these children. Greater than three quarters of the families felt that they were prepared for the behavior or caregiving demands of their child. However, a third of the sample felt that the negative behavior of the child had been overstated before the adoption and in actuality the child’s behavior was better than they had expected. Presenting perspective adoptive parents with realistic information about the child’s behavior and capabilities is a challenge for the adoption agency. It appears that they are likely to paint the picture more negatively than parents experience rather than the other way around. Caution should be exercised in generalizing from the results of this study. Potential bias is introduced because families voluntarily responded to the survey. Furthermore, data are not available on those who chose not to respond. The results of this study should be of interest to agencies providing post-adoption services to families who have adopted children with developmental disabilities. Recommendations to policy makers and program planners concerned about families adopting children with developmental disabilities include: 1. Linking families with essential family support services at the time of adoption. These would include respite care, life planning services,
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Post Adoption Needs
support groups, babysitting for the other children, homemaker services, advocacy training, and ongoing training in how to care for the child. 2. Recognizing that adoption agencies may not have the resources to provide post-adoption services or that families may be reluctant to disclose problems to them, the adoption agency should work in conjunction with community agencies which can make planned, periodic contact with the family to identify service needs and assist with referrals. This is necessary because service needs will change across the life cycle of the child and family. 3. For families whose expectations of the behavior or caregiving demands of their child do not match the realities, ongoing support and training in how to deal with the issues confronting them. 4. Further research should address the barriers families experience in accessing services, the gap that some families experience between their expectations and the capabilities of the child, and the incidence of transracial adoption of children with disabilities.
References Ago&, J., & Bradley, V. (1985). Family care for persons with developmental disabilities: A growing commitment. Boston, MA: Human Services Research Institute. Bryne, E. A., & Cunningham, C. C. (1985). The effects of mentally handicapped children on families: A conceptual review. Journal of Child Psychology and Psychiatry and Allied Disciplines, 26, 847-864. Coyne, A., & Brown, M. E. (1985). Developmentally disabled children can be adopted. Child Welfare, 65,607-615. Festinger, T. (1986). Necessary risk: A study of adoptions and disrupted adoptive placements. New York: Child Welfare League of America. Graze, V. (1986). Special needs adoption. Children and Yourh Services Review, 8.363-373.
Hardy, D. (1984). Adoption of children with special needs: A national perspective. American Psychologist. 39,901-904. Krauss, M. (1986). Patterns and trends in public services to families with a mentally retarded member. In J. J. Gallagher & P. M. Vie&e (Eds.), Families of handicapped persons: research, programs and policy issues, (pp. 237-250). Baltimore: Paul H. Brookes Publishing.
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Macaskill, C. (1986). Against the odds: Adopting mentally handicapped children. London: British Agencies for Adoption and Fostering. Michigan Department of Social Services. (1982). Adoption - Fiscal Year 198081 Report. Lansing: Michigan Department of Social Services. Nelson, K. (1985). On the frontier of adoption: A study of special needs adoptive families. New York:. Child Welfare League of America. Rosenthal, J., Schmidt, D., & Conner, J. (1988). predictors of special needs adoption disruption: An exploratory study. Children and Youth Services Review, IO, 101-l 17. Rushton, A. (1989). Annotation: Post-placement services for foster and adoptive parenting: Support, counselling, or therapy? Journal of Child Psychology and Psychiatry 30, 197-200. Tandberg, M., & Bombeck, B. (1984). Colorado Prevention Adoption Disruption Project. Denver: Colorado Department of Social Services. Zwimpfer, D. (1983). Indicators of adoption breakdown. Social Casework, 64, 169-177.
Chihrn md YcwhServica Reimv. Vd. 13. pp. 413424. IS91 F’tinted in the USA. All tigltta tuavcd.
Copyright Q 1991 Pergattton Ptru plc
Post-Adoption Needs of Families Adopting Children with Developmental Disabilities Maureen 0. Marcenko Hahnemann University Linda K. Smith Wayne State University
The post-adoption service use and needs of 125 families who had adopted children with developmental disabilities were examined using a structured mail questionnaire. Although satisfaction with services used was generally high, many families did not have access to basic family support services such as respite care, life planning and support groups. Income was the only demographic variable which correlated with service need. Middle income families (mean = $30,000 to $34,999) were more likely to need support groups and babysitting for other children than either lower or higher income groups. Of particular note in this study is the relatively high incidence of transracialadoptions. Thirty-one percent of the sample had adopted children of a different race than the family. The implications of the findings and service recommendations are discussed.
In the past of children tices is the movement,
twenty years, there has been increasing emphasis on adoption with developmental disabilities. This shift in adoption pracresult of two concurrent trends: 1) the permanency planning which sought to place children living in foster care homes into
permanent homes; and 2) a decrease available for adoption (Hardy, 1984).
in the number
of healthy
infants
This research was fun&d in part by a grant from the Department of Health and Human Services, Administration for Children, Youth and Families, Grant Number 9OCOO353. The authors would lie to thank Janice Dady-Jordan and the staff of Spaulding for Children for their assistance in conceptualizing and distributing the questionnaire and the families for providing us with the information. Requests for reprints should be addressed to Maureen Marcenko. Hahnemann University, 1427 Vine, M.S. 988. Philadelphia, Pennsylvania 19102-l 192.
413
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Marcenko and Smith
Experience over time has shown that children with developmental disabilities are adoptable. In Michigan, adoption of children with disabilities rose over 30% in the period from 1979 to 1981 (Michigan Department of Social Services, 1982) and has continued to increase. On a wider scale, a survey of adoption agencies across the United States and Canada revealed that between 1979 and 1980 alone, almost 1600 children with developmental disabilities were placed in adoptive homes by 324 agencies (Coyne & Brown, 1985). Descriptive information obtained for 693 of the children in this study indicate that a vast majority (92%) had mental retardation and/or cerebral palsy and that approximately 23% were considered severely or profoundly impaired (Coyne & Brown, 1985). Children with developmental disabilities present a number of caregiving demands to the adoptive family, most of which will persist throughout the life of the child. Therefore, specialized, ongoing support for the child and family is necessary. In concept and practice, postadoption services parallel family support services provided to families of children with developmental disabilities. The goal of family support services is to provide the social and financial support necessary to maintain healthy family functioning and reduce the daily stress of caring for a child with disabilities (Ago&r & Bradley, 1985). In the case of adoptive families, not only are they in need of support services, but they also require assistance dealing with the adjustment issues which accompany adoption. Post-adoption services emanating from the adoption agency are not typically available because agency resources are likely to give precedence to children in pre-adoptive status. Consequently, families are left to negotiate the generic system of services designed for those with family members who have a developmental disability, a system which has been characterized as fragmented, uncoordinated, slow to respond and cumbersome (Bryne & Cunningham, 1985; Krauss, 1986). Providers in the developmental disabilities service system also may not be knowledgeable about the particular issues confronting adoptive families such as bonding, reattachment, and changes in family structure. Given the caregiving demands of children with developmental disabilities and the apparent lack of an effective system of family support services, it is not surprising that disruption of adoptions has been frequently reported among these families. Disruption rates ranging from 7% to 20% were reported in studies by Benton, Kaye, & Tipton (1985), Festinger (1986), Groze (1986), & Tandberg & Bombeck (1984). While several studies have explored characteristics of families and children which are associated with adoption outcome (Barth, Berry, Carson, Goodfield, & Feinberg, 1988; Groze, 1986; Rosenthal, Schmidt, & Conner, 1988; Zwimpfer, 1983), few have examined the impact of post-
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Post Adoption Needs
adoption services and supports on that outcome, particularly over the long term. Nelson (1985) notes that families participating in her study were heavy consumers of services, utilizing formal as well as informal networks. Adoption subsidies and away-from-home care were deemed especially important, but Nelson notes that many other services were difficult to obtain or unsatisfactory for some families. A number of other researchers have indicated a need for post-placement services (Coyne & Brown, 1985; Graze, 1986; Macaskill, 1986; Rushton, 1989), but little is known about what families are actually receiving and what they perceive as their greatest needs. The present study was undertaken to identify the post-adoption service use and needs of families who have adopted children with developmental disabilities. Also examined are satisfaction with current services and differences in both use and need by family demographic characteristics. As a further indicator of possible service need, the relationship between the family’s expectations of the child’s caregiving demands and behavior prior to adoption and the actual experience of families post-adoption is explored. Methodology
The archives of Michigan’s Spaulding for Children served as the major source of names of families who had adopted children with developmental disabilities. Project staff searched the records of all families who had adopted children since Spauldings’ inception in 1968 and attempted to identify families who had adopted children with disabilities. The term, “developmental disabilities,” has only been in common use for approximately the last ten years, therefore it was necessary to decipher whether the children had disabilities from the case records. Furthermore, since adoption agencies have historically had little contact with families once the adoption was finalized, some of the addresses were as much as twenty years old. A second source was other agencies in metropolitan Detroit that place children with developmental disabilities. Questionnaires were sent to agencies known to place children with developmental disabilities, with a request to forward the forms to appropriate families. A final source of subjects was those families identified through a self-help parent group consisting of parents who had adopted children with disabilities. Families received a letter explaining the purpose of the study, a questionnaire, and a stamped envelope addressed to the researchers. In total, approximately 300 questionnaires were distributed. The actual number of usable completed questionnaires was 125. It is not possible to
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know how many families actually received the questionnaires, therefore a response rate is invalid in this situation. The questionnaire consisted of basic demographic data, questions regarding the disability and health problems of the children, the family’s understanding of the child’s disability at the time of adoption, and the accuracy with which the child’s problems were presented by the adoption agency. Families were also asked to indicate, from a list of 25 services, which they had used, their satisfaction or dissatisfaction with those services and, if not used, whether they needed the service. Although the questionnaire was designed primarily in a closed-ended format, families were asked to offer suggestions which would help develop programs for adoptive families of children with special needs. Data were collected for all adopted children, however, the results reported here relate only to the first adopted child. This is because the experience and expectations of families subsequent to the first adoption may be sufficiently different to skew the results. For instance, families may have obtained information about services with their first adopted child leading to greater use of services with the addition of other adoptive children. Characteristics of the Sample The 125 families had adopted a total of 308 children. As seen in Table 1, most had adopted one child (41%) and the mean number of adopted children was three. Thirty one percent of the sample had adopted children of a different race than the parents. Of that 31% (n = 39), all the parents were white, with the exception of one Black family who had adopted a white child. Thirty eight white families had adopted children who were either Black (29%), Asian (13), or Hispanic (3%) and 45% of the 38 families had adopted children representing two different minority groups. Family income ranged from less than $8,000 per year to greater than $50,000, with the median income between $30,000 and $35,000. Questionnaire respondents were primarily mothers (93%), although 7% of the respondents were fathers. More than half of the respondents (55%) had at least some college and 51% classified themselves as homemakers. At the time of the survey, the mean age of the first adopted children was 12.75 while the mean age at adoption was 6.26. Consequently, the mean number of years the first child had been in adoption placement was 6.5. Ninety two percent of these children were involved in special education. The most common disability of the children was mental retardation (70%) followed by severe speech impairment (34%), cerebral palsy (30%) and
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Post Adoption Needs
seizure disorders (30%). Several of the children had behavioral problems, with temper tantrums (39%), defiance (36%). and picking on others (28%) mentioned most frequently. It appears that our sample is similar demographically to other studies of families who adopt children with developmental disabilities. Nelson, in her 1985 study of eight voluntary and public adoption agencies in the United States found that most were married (83%) and had adopted a mean of four children. In terms of the child’s disability, Coyne and Brown (1985) found that the most common disability was mental retardation, followed by cerebral palsy. Results Families were generally satisfied with those services they had used or, if they had not used the service, they felt that it was not needed (see Table 2). However, there were some essential family support services which families needed but had not used. The service families named as needing most frequently (23%) was respite care. This may actually underestimate the families in need of respite care because there was not a response category which read “used, but needed more.” Therefore, those families satisfied with the respite services they did receive, but requiring more of it, did not have a category in which to note that. In fact, in the open-ended section of the questionnaire many of the families identified the need for more respite care. This need was closely followed by life planning for the child (22%), support groups (20%) and babysitting for the other children (17%). The services which families were most often dissatisfied with were educational services (13%) and counseling for the child (10%). In general families reported high levels of satisfaction for those services they had used.
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Table 1 Characteristics of the Sample Variable Total # of Adopted Children 1 child 2 children 3 children 4 children > 5 children Race of Family All white All black Mixed Family Income $8,ooO to 14,999 15,000 to 24,999 25,000 to 34,999 35,000 to 49,999 > 50,000 Marital Status of Respondent Mal-lied Single Education of Respondent < High School High School Some College Employment Status of Respondent Employed Homemaker Unemployed Age of First Child at Adoption 1 to 3 years 4 to 6 7 to 9 10 to 12 13 to 19 Current Age of First Adopted Child 2 to 5 years 6to 10 11 to 15 16 to 20 > 21 N= 125
% 41 19 12 15 12 57 12 31 6 26 26 31 11 76 24 8 37 55 36 51 13 35 24 16 15 10 11 27 30 23 10
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419
Table 2 Service Use and Satisfaction
Service Respite Care Life Planning Support Groups Babysitting(other children) Homemaker Services Advocacy Training Training to Care for Child Day Care Residential (child) Family Counseling Home Nursing Legal Aid Counseling (child) Transportation Educational Services Health Insurance (child) Dental Care Speech Therapy Occupational Therapy Physical Therapy Routine Medical Care
Not Satisfied Dissatisfied Needed Needed % 96 % 46 19 7 27 13 3 7 17 6 6 8 4 3 15 26 48 53 80 43 40 40 85
6 5 4 7 1 3 4 4 3 5 0 1 10 3 13 7 3 8 5 9 4
23 22 20 17 13 11 10 9 9 8 7 7 6 5 4 3 3 3 3 3 1
52 66 49 63 84 79 69 81 81 78 88 89 68 66 35 38 15 46 52 48 7
We tested whether there were differences in service need by selected demographic variables. The analysis was limited to the first seven services, which represented needed services by at least 10% of the families. The “used and satisfied” response category was combined with “used and dissatisfied” to form a “used” category because there were few families in the “dissatisfied” cell. The two remaining response categories, “not used, but needed” and “not used, not needed,” were preserved. Oneway analysis of variance was performed to determine differences between the three categories by income, total number of family members or education of the respondent. The analysis revealed no significant differences in the level of need for respite, life planning, homemaker
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services, advocacy training or training to care for the child by any of the variables tested (is greater than .05). Income was the only demographic variable which correlated with support groups and babysitting for other children. Higher income families (mean = $35,000 to 39,999) used support groups and babysitting for other children more often, middle income families (mean = $30,000 to 34,999) were more likely to need but not have support groups or babysitting for other children, and lower income families (mean = $25,000 to 29,999) were more likely to report that they did not need either service. (Support groups: F(2, 106) = 3.35, c .04); Babysitting for other children: F (2, 106) = 3.96, < .02). A similar analysis utilizing chi-square was conducted to test the relationship between the seven services identified above and marital status. There were no significant differences between the three categories of service need and marital status on any of the services tested with the exception of advocacy training. Single respondents (25%) were more likely to have used advocacy training than married respondents (5%) and married subjects (84%) were more likely to state that they did not need the service than single subjects (64%) ( 2 (2, N = 121) = 9.40, < .Ol). Eleven percent of both groups stated that they needed but had not received advocacy training. In an open-ended format, families were asked, “Do you have any comments or suggestions which would help us in developing programs for adoptive families?” Several themes emerged from the responses to this question. Families reiterated the need for respite care, support from other parents and life planning services. Typical of the statements regarding respite care were: “Vacation respite and easier access or availability of respite persons; in home respite care with a responsible adult who isn’t afraid of seizures; follow-up care such as providing alternate care persons for vacations and/or weekends.” With respect to support from other parents, families had several suggestions. These included: “Butting families in touch with other families whose child has similar problems; adoptive families should meet together on a regular basis to share ideas.” Some families stated that their adopted teenagers could also benefit from support groups. The necessity for life planning services was apparent in the case of the parent who said “Our main concern right now is what happens when our adopted children turn 18.” Families also felt that there should be more affordable counseling available; that greater financial support should be provided; and that more and better information should be provided on the adopted child’s background. There were a number of open-ended responses which could be grouped under the rubric of “information.” These included information about services, various disabilities, how to deal with difficult behaviors,
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and how to care for a child with special needs. Finally, many families felt that there should be follow-up services once the child has been adopted. This was summed-up by one parent who stated, “Someone to listen and understand the problems adoptive parents face without having to fear the removal of the children when problems arise.” Although a number of service needs were identified by the families surveyed, often parents are not sure about what is available or even what would be helpful. This point was well-made by the parent who wrote, “We don’t always know what (services) might help make our children’s and our lives easier, even if we’re long time parents!” Adoption agencies are interested in an assessment of how well they prepare adoptive families for the caregiving demands of a child with disabilities. We asked parents “Do you feel you understood at the time of adoption the problems your child might have, based on his/her disability?” Seventy-nine percent felt that they understood the child’s potential problems and 21% stated that they did not have an adequate understanding. In the same vein, we asked “Has your child’s behavior been better, worse or about the same as you expected?” Forty-three percent of the respondents indicated that the child’s behavior was better than expected, 24% thought it was worse, and 33% felt that it was about the same.
Discussion
The results of this study indicate that many families who adopt children with developmental disabilities have unmeet service needs. For instance, almost a quarter of the families surveyed did not have access to respite care, the most basic family support service. Families were also concerned about the future of their children, as indicated by their need for life planning services. The service most frequently used by families was support groups, still 20% of the sample stated that they needed but had not received this service. Families, for the most part, were satisfied with the services they did receive. It was interesting to note that higher income families ($35,000 to $39,999) were more likely to have support group services and families in the $30,000 to $34,999 range were more likely to indicate the need for a support group. Agencies providing this service may have to reach out to middle income families to assure accessibility. The same relationship held true for babysitting for the other children. This may be an issue of economics, whereby families with incomes in the mid-range are unable to afford babysitting for their other children, although lower income families did not indicate that they needed babysitting services.
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Also of note is that single parents used advocacy training more frequently than married parents. It may be that parents confronting the care of the child and the service system alone feel the need for assistance in advocacy. The reasons for these differences by income and marital status are not clear, but require further research. The parents who responded to this survey were predominantly white, but 31% of them had adopted children of a different race than themselves. We could not locate Michigan or national data on the incidence of transracial adoption for 1982, which would have been the mean year for placement of the first adopted child in our sample. However, between October 1988 and September 1989, 12% of all Michigan adoptions of state wards were transracial. This included both children with and without developmental disabilities. If our sample is representative of families who adopt children with disabilities, then the data suggest that the incidence of transracial adoption is higher among children with developmental disabilities. The current philosophy and practice in the adoption field recommends against transracial adoption except in cases where a same race family cannot be identified. It appears that this practice is not being as consistently adhered to in the placement of children with developmental disabilities as it is with non- disabled children. Further investigation is required to determine whether children with disabilities are actually treated differently and if so, what the implications are for these children. Greater than three quarters of the families felt that they were prepared for the behavior or caregiving demands of their child. However, a third of the sample felt that the negative behavior of the child had been overstated before the adoption and in actuality the child’s behavior was better than they had expected. Presenting perspective adoptive parents with realistic information about the child’s behavior and capabilities is a challenge for the adoption agency. It appears that they are likely to paint the picture more negatively than parents experience rather than the other way around. Caution should be exercised in generalizing from the results of this study. Potential bias is introduced because families voluntarily responded to the survey. Furthermore, data are not available on those who chose not to respond. The results of this study should be of interest to agencies providing post-adoption services to families who have adopted children with developmental disabilities. Recommendations to policy makers and program planners concerned about families adopting children with developmental disabilities include: 1. Linking families with essential family support services at the time of adoption. These would include respite care, life planning services,
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support groups, babysitting for the other children, homemaker services, advocacy training, and ongoing training in how to care for the child. 2. Recognizing that adoption agencies may not have the resources to provide post-adoption services or that families may be reluctant to disclose problems to them, the adoption agency should work in conjunction with community agencies which can make planned, periodic contact with the family to identify service needs and assist with referrals. This is necessary because service needs will change across the life cycle of the child and family. 3. For families whose expectations of the behavior or caregiving demands of their child do not match the realities, ongoing support and training in how to deal with the issues confronting them. 4. Further research should address the barriers families experience in accessing services, the gap that some families experience between their expectations and the capabilities of the child, and the incidence of transracial adoption of children with disabilities.
References Ago&, J., & Bradley, V. (1985). Family care for persons with developmental disabilities: A growing commitment. Boston, MA: Human Services Research Institute. Bryne, E. A., & Cunningham, C. C. (1985). The effects of mentally handicapped children on families: A conceptual review. Journal of Child Psychology and Psychiatry and Allied Disciplines, 26, 847-864. Coyne, A., & Brown, M. E. (1985). Developmentally disabled children can be adopted. Child Welfare, 65,607-615. Festinger, T. (1986). Necessary risk: A study of adoptions and disrupted adoptive placements. New York: Child Welfare League of America. Graze, V. (1986). Special needs adoption. Children and Yourh Services Review, 8.363-373.
Hardy, D. (1984). Adoption of children with special needs: A national perspective. American Psychologist. 39,901-904. Krauss, M. (1986). Patterns and trends in public services to families with a mentally retarded member. In J. J. Gallagher & P. M. Vie&e (Eds.), Families of handicapped persons: research, programs and policy issues, (pp. 237-250). Baltimore: Paul H. Brookes Publishing.
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Macaskill, C. (1986). Against the odds: Adopting mentally handicapped children. London: British Agencies for Adoption and Fostering. Michigan Department of Social Services. (1982). Adoption - Fiscal Year 198081 Report. Lansing: Michigan Department of Social Services. Nelson, K. (1985). On the frontier of adoption: A study of special needs adoptive families. New York:. Child Welfare League of America. Rosenthal, J., Schmidt, D., & Conner, J. (1988). predictors of special needs adoption disruption: An exploratory study. Children and Youth Services Review, IO, 101-l 17. Rushton, A. (1989). Annotation: Post-placement services for foster and adoptive parenting: Support, counselling, or therapy? Journal of Child Psychology and Psychiatry 30, 197-200. Tandberg, M., & Bombeck, B. (1984). Colorado Prevention Adoption Disruption Project. Denver: Colorado Department of Social Services. Zwimpfer, D. (1983). Indicators of adoption breakdown. Social Casework, 64, 169-177.