The British Journal of Developmental Disabilities Vol. 47, Part 1, JANUARY 2001, No. 92, pp. 3-13

FOSTER CARE FOR CHILDREN WITH MENTAL RETARDATION AND CHALLENGING BEHAVIOUR: A FOLLOW-UP STUDY N. M. A. Laan, G. M. P. Loots, C. G. C. Janssen and J. Stolk

Introduction The International Treaty on the Rights of Children states that every child has the right to be brought up in a family. For various reasons children can not always grow up in their family of origin. Growing up in a foster family can be an alternative. An interesting question is, if foster care is an adequate alternative for children with mental retardation and challenging behaviour. A literature search on foster care for persons with mental retardation yielded 40 titles, dating from 1978 till 1997. Nine articles dealt only with adults. Most of the other articles were concerned with characteristics of the people living in foster

homes and/or the characteristics of foster care as compared to other forms of care, in particular small group homes. Little systematic research on longer-term results of foster care has been reported. An exception is the study by Borthwick-Duffy et al. (1992). They did a three-year study to determine the factors that influence the development and quality of life of people with mental retardation. The main findings were: the people living in foster homes formed a very mixed group and their development and quality of life were rather stable over the three year period. Reagan et al. (1980) did a follow-up study on community placement of students with challenging behaviour and IQs between 40

Drs. N. M. A. Laan Researcher in Orthopedagogy, Free University, Faculty of Psychology and Pedagogy, Amsterdam *G. M. P. Loots, Ph.D. Associate Professor of Orthopedagogy, Free University, Faculty of Psychology and Pedagogy, Van der Boechorststraat 1, 1081 BT, Amsterdam, The Netherlands. Tel: 0031 20 4448904 Fax: 0031 20 444 8745 E-mail: [email protected] C. G. C. Janssen, Ph.D. Associate Professor of Orthopedagogy, Free University, Faculty of Psychology and Pedagogy, Amsterdam. J. Stolk, Ph.D. Associate Professor of Orthopedagogy, Free University, Faculty of Psychology and Pedagogy, Amsterdam. * For Correspondence

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and 95. It was found that students living in their natural homes showed more stability of placement than students in either foster home or group home placements. The persons who showed unstable placements (change homes) differed from the group with stable placements on: lower caregiver involvement, higher social maladaption and lower quality of relationships. Apart from these studies results have only been reported in the form of case histories (e.g. Stelk and Richards (1992); Stevens et al. (1987); Rosenberg (1985)). Despite the intentions of the Dutch parliament that stated in 1986 that bringing up children with mental retardation in foster care is a good alternative to care in an institution, hardly any policymaking has resulted to further this form of care. When children with mental retardation have to be outplaced, they usually go to live in residential facilities. This is especially the case when these children also display challenging behaviour. Foster placements were initially meant for children that had to be outplaced from their natural families, although now foster care on a voluntary basis, as an alternative for residential placement, is also possible. A national organisation, the William Schrikker Stichting (WSS) launched a special project: the Project Intensieve Pleegzorg (Project for intensive foster care) PIP for short. Besides children with mental retardation and challenging behaviour the project is also meant for children who are seriously ill and for children with evident medical risks. The children in question have often been seriously traumatised and/or neglected and therefore have not been able to fulfil their expected potential. In 1998 WSS took care of 777 children in foster placements. PIP can deal with 20 children at a time, although the demand is much higher. Placing these children with

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complex problems in foster care carries a higher risk of problems and disappointment (Zandberg, 1997). In order to ensure that the capabilities of the foster parents correspond with the requirements of the children, extra support is needed (Prins et al., 1992, research report in Dutch on demand to author). PIP offers the foster parents this extra support in the form of intensive and specialised counselling. This counsellor may consult an educational psychologist and a psychiatrist/ psychotherapist from the multidisciplinary PIP support team. Before placing the child in a foster family 1) an extensive selection and 2) a matching procedure take place and 3) ample time is taken for the child and its prospective family to get acquainted. The counselling procedure consists of home visits by the specialised counsellor every three weeks and more often if necessary. Systematic individualised plans are made with respect to the relationship between the counselling team and foster parents and with respect to the process of upbringing by the foster parents and the (usually too high) expectations. These plans are evaluated every 6 months. PIP can also be used as intensive support within an existing foster placement to prevent a failure. In this case we speak of crisis management. The following research questions were formulated: 1) What is the background and what are the characteristics of the children who were included in PIP? 2) What was the content of the PIP-counselling (topics and forms)? 3) To what extent were these foster placements successful? 4) In what way is success or failure related to childcharacteristics, to the content of the counselling and what were the formal reasons for ending the placements?

Method Research group The research group consisted of all children who had been entered in the project at least two years before the start of the study in 1998, so they potentially could reach the two years criterion: 78 children (42 boys, 36 girls). The case notes of these 78 children were studied. As an (admittedly somewhat arbitrary) criterion for success was taken that the child had lived in the foster family for at least two years after its inclusion in PIP. The argument: PIP is continued as long as it is judged to be beneficial for the foster child and feasible for the foster parents. The point of view of the WSS is that foster care, even for a relatively short period, can be a very important consistent attachmentexperience for a child. Moreover, a foster placement can help to postpone a residential placement. A postponement of at least two years is judged to be a success. For a variety of reasons the number of potential respondents to receive a questionnaire about satisfaction with care was 64 out of the original 78 (no recent address was known of 5 foster parents; 9 foster parents had two PIP-children in their family and 2 families had three; these families received a questionnaire for only one of the children, two children had lived in two foster families and questionnaires were sent to both families). 42 of these 64 foster parents returned the questionnaire: 66%. The influence of this self-selection on the results is unknown.

Instruments The first instrument, a checklist, was used to analyse the factual data in the case notes: age, gender, level of cognitive

functioning, concomitant diseases or disabilities, psychological, behavioural and attachment problems, situation in family of origin, legal measure if any, place of residence before placement, place of residence after placement, duration of PIP counselling, reason of termination of placement. A second checklist dealt with the topics in counselling the foster parents. The categories were derived from an earlier study concerning difficult foster placements: the problems of the foster child, contact with biological parents/ family of the foster child, problems arising from the foster status of the child, problems the foster parents experienced in bringing up the child, the (emotional and psychological) resources of the foster family, problems stemming from the interactions in the foster family as a system, questions necessitating a choice or the development of a policy, questions concerning PIP counselling. An inter rater reliability for this second checklist was calculated on the basis of the analysis of 10 randomly selected case notes. The percentage agreement between both raters on the scores was 86%. The mean kappa for the main categories of the checklist was .61. The kappa for the individual items ranged from 1.00 to .44, with a mean of .91. To measure the satisfaction of foster parents with respect to the PIP counselling a questionnaire was developed. Questions were asked about: the topics raised in the counselling meetings; the forms of support that the foster parents received; a comparison with the ideal form of counselling; whether foster parents had profited from the PIP counselling and whether they regarded the placement of the child in their family as successful. In addition the foster parents were asked to give a judgement on the various aspects of counselling on a scale from 1 to 10 (Visser, 1984). The literature on research on

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(consumer) satisfaction suggests that respondents have a tendency to give (very) positive judgements, whilst in reality they were not necessarily so satisfied (Janssen and Kars, 1994). Therefore, the foster parents were also asked for an explanation of their judgement. It was then checked whether their score was in accordance with their verbal judgement. Not all the foster parents did indeed give an explanation. Where one was given complete agreement with the judgement as expressed by the score was found. As another check the foster parents were asked to compare the support they received with their own representation of the ideal support. To calculate the internal consistency of the scores an alpha-coefficient was calculated for the 27 questionnaires that were totally completed: .95.

Results Characteristics and Background of the Children 62% of the 78 children were mentally retarded (32% mildly, 22% moderately, 4% severely and 3% profoundly). 15% were described as having a developmental delay, i.e. it was not clear whether this delay was caused by mental retardation. 23% of the children were said to have normal intellectual potential. In these cases the subjects were seriously physically handicapped or had evident medical risks. Of the 78 children 37% had a physical disability or disease. All children manifested challenging behaviour (TABLE I). Most children (80%) were described as showing deviant contact behaviour. Other

TABLE I Percentages of Children Showing Challenging Behaviour (n = 78) %

Stubborn/acting out Disbalanced/changing moods Passive Self injurious Chaotic Sexually deviant behaviour Deviant contact behaviour Depressive Loyalty problems Enuresis/encopresis Regression Personality problems Extreme anxiety

46 17 6 5 15 23 80 6 19 11 21 9 24

TABLE II Problems (%) in Original Family (n = 78) %

Pedagogic incompetence/multiproblems Physical maltreatment Psychological maltreatment Sexual abuse Extreme neglect Neglect of psychiatric problems of child

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53 19 6 26 67 4

challenging behaviour: stubborn and acting out (46%), extremely anxious behaviour (24%) and sexually deviant behaviour (23%). All children had experienced problems in their family of origin (TABLE II). Often more than one problem was mentioned in the case notes. Extreme neglect was mentioned most often (67%). Pedagogic incompetence in combination with multifamily problems was mentioned in 53%. 26% of the foster children were sexually abused in their original family. The problems of the children are further illustrated by the frequency of legal measures with regard to the children: 72% were placed under legal guardianship, 23% were placed under family guardianship. In only 4 cases were the biological parents the legal guardians in combination with a voluntary foster placement. Before the foster placement 76% of the children lived in residential care. 50% of the children had lived in one institution and 20% of the children had already lived in two institutions. It can be seen from these data

that these children did indeed suffer from severe problems and therefore put special demands on their foster parents.

Content of PIP Counselling In 75 out of 78 cases the main topics in counselling were sufficiently documented in the case notes. As shown in TABLE III, the challenging behaviour of the child was discussed in almost all families. Also important were the problematic contacts with the biological parents and the practical matters concerning the future of the child, the special foster status of the child, the coping skills of and the problems in the foster family system itself. From most of the case notes it could be determined which forms of support had been offered. On the same subject questionnaire data were also available for 37 respondents. We categorised the forms of support into three categories, shown in TABLE IV. The foster parents were asked what forms had been most important to

TABLE III Topics Discussed in Counselling (Case Notes Data: n = 75) %

Challenging behaviour of the child Problematic contacts with biological parents Topics concerning the special foster position or status of the child Decisions on practical matters concerning the future of the child Emotional and practical capabilities of the foster family: coping skills Foster family as a system

96 88 65 88 61 60

TABLE IV Relative Importance of the Various Forms of Support (n of respondents = 37)

Forms of support

Informational support Emotional support Instrumental support

“much help” given according to case notes (n = 75)

“first place” according to questionnaire

40% 63% 32%

14% 72% 8%

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them in rank order. Most of the case notes and questionnaire data showed emotional support to be the most important form of counselling (TABLE IV).

Success of the PIP Placements Seventy four percent of the children still lived in the foster family two years after the inclusion in the PIP. Thus, according to our criterion the large majority of placements can be regarded as successful. The 78 children spent a mean of 5.2 years in foster families. In 26 cases the counselling only started after the child had been living in the foster family for a considerable time. In these foster families problems had arisen that were severe enough to justify the intensive PIP counselling as a form of crisis intervention. Of these 26 children 15 (58%) still received foster care in the original or a new family two years after inclusion in the PIP. PIP counselling can therefore also be seen as a successful means of crisis management. The foster parents were asked whether they thought that the child’ s stay in their family had been beneficial for the child’ s development and to give arguments for their opinion. These questions were answered by 42 (couples of) foster parents.

The vast majority (79%) saw the placement as beneficial and we found a significant relationship with the success rate of two years (Chi-square, p