a follow up study of a behavioral program for young people with learning disabilities and...

Behavioral Interventions, Vol. 9, No. 3, 157-167 (1994)

A FOLLOW UP STUDY OF A BEHAVIORAL PROGRAM FOR YOUNG PEOPLE WITH LEARNING DISABILITIES

AND CHALLENGING BEHAVIOR

Angela Kent Dept. of Clinical Psychology, University of Birmingham, Edgebaston, Birmingham, UK

Jackie Bird Social Work Department, St Andrew’s Hospital, Billing Road,

Northampton NNI 5DG, UK

This paper describes a pilot follow-up study of a behavioral program for 20 young people with learning disabilities and challenging behavior. Eighteen participants made good overall improvement during the treatment period, and this was partially maintained at follow-up. Eight had continued to improve, eight had deteriorated slightly and four had deteriorated markedly. Adaptive skills were generally maintained. The reemergence of challenging behaviors explained the difference between the Good and Poor Outcome groups. Those participants in the Good Outcome group were younger on admission, scored lower on adaptive skills and higher on challenging behaviors. In addition they had remained on the treatment programme for 12-18 months and had been discharged from the Unit for longer. The overall level of independent living had increased from preadmission and the majority of participants were living in less restrictive placements, These results confirm and extend the findings of previous research. The paper concludes by highlighting the need for more detailed longitudinal follow-up studies in this area.

INTRODUCTION

The Government policy to close down the large mental handicap hospitals and the implementation of Community Care Legislation does not adequately address the problems associated with the resettlement to the community of young adults with learning disabilities and challenging behavior. While earlier studies make a strong case that institutionalisation may result in cognitive and affective deficits (Wing & Brown, 1970), a move to a community placement does not in itself guarantee either increasing the individual’s satisfaction with their new accommo-

This research was funded by St. Andrew’s Hospital Research Committee. We are grateful to Dr. Clive Hollin and Dr. Marie Midgeley for their helpful comments and encouragement. Thanks also to Ms. Lynda Collier for sharing with us her extensive knowledge of the clients and Mrs. Pauline Preston for her secretarial services. N.B. This paper has joint authorship. Copies of all measures are available on request.

CCC 10724847/94/030157-11 0 1994 by John Wiley & Sons, Ltd.

158 A. Kent and J. Bird

dation (Allen, 1989) or the new learning or maintenance of skill acquisition (Hemming, Lavender, & Pill, 198 1). The process of deinstitutionalization is complex, with a rationale based on the idea that community environments are more “normalizing” than institutions. Indeed, institutions may be detrimental to clients’ emotional and social growth (Wolfensberger, 1972). A study by Kleinberg and Galligan (1 983) suggests that improvements in functioning of adaptive skills at follow up are only apparent in those areas already in the client’s repertoire.

Therapeutic programs for young people with learning disabilities need to be set up to teach adaptive skills. These will allow young people to function in a socially acceptable manner, and provide adequate living skills to enable them to make the best use of a new environment. The treatment program evaluated was designed to uphold and respect basic human needs and rights, and has its foundations in the principles of applied behavior analysis and normalization. These principles are integrated in a constructional approach using the principle of the least restrictive alternative. The unit program includes a highly structured individualized positive reinforcement schedule involving the collection of points at a rate dependent upon the client’s abilities.

A previous long-term study of aprogram similar to that reported here, but with a client group without learning disabilities, suggests that challenging behaviors whilst not being extinguished can be minimised to a manageable and socially acceptable level (Moyes, Tennent, & Bedford, 1985). The M.I.E.T.S. follow-up study (Clare & Murphy, 1993) looked at the first six clients to leave that particular service, and found that not only was there a reduction in the key challenging behaviors for five of the six clients, but that all made gains in their levels of social and living skills and were living in less restrictive facilities than prior to admission.

There is a paucity of literature available on outcome studies with this client group. It is not difficult to account for the lack of research as there are few specialist units that provide a treatment program and rehabilitation service for such a specialist group of young people. There are also the added practical difficulties of tracing people after their discharge as many inevitably move on to a number of placements (Laslett, 1982).

This study was designed to address several issues both to provide outcome measures and to identify those behavioral problems that can be most successfully addressed in this type of unit. Specifically, the study focuses on: the characteristics of the participants on admission which may be indicative of a good or poor outcome; the changes in adaptive skills and challenging behavior between admission discharge and follow-up and the success of the post discharge placements.

Learning disabilities & challenging behavior 159

METHOD

Participants

The unit studied has an average discharge rate of 12 young people per year. A total of 26 patients, who had been assessed and treated on the Unit, were discharged from the hospital between August 1990 and December 1992. At the time of the study all the participants had been discharged for a minimum of 5 months. Consent letters were sent out to these people and their key workers. Of these 26, the Responsible Medical Officers of 2 who were in long-stay hospitals refused to give their consent, and 4 other participants who did not reply proved to be untraceable. The remaining 20 young people and their key workers gave their consent to take part in the study. Whilst in hospital they were detained on a locked unit, either on a section of the 1983 Mental Health Act or Section 25 of the 1989 Children Act (Secure Accommodation Order).

The follow up sample comprised 14 males and 6 females, aged between 17 and 34 years at follow up (Mean Age, 23.50 years). The level of intellectual functioning as measured by the WISC-R or the WAIS-R was between 52 and 88 (Full Scale 1.Q) and therefore ranged from moderate learning disabilities to low average range.

The challenging behaviors on admission included aggression (90%), self harm (65%), inappropriate sexual behavior (65%), absconding (55%), theft (35%), psychotic illness (loyo), and arson (5%). All participants also suffered from a high degree of psychological problems as measured by scoring over 80% on question 13 (Psychological Disturbances) of the Adaptive Behavior Scale, (A.B.S.) part 2 (Nihira et al., 1974).

The severity of the challenging behavior meant that the majority had been institutionalized more than once prior to admission to the Unit. Of the 20, 11 came from residential care homes, 6 from hospital, 2 from the family home and 1 from prison.

The length of stay on the treatment program was from 3 to 66 months (Mean 20.30 months) and 10 young people moved on to the rehabilitation unit for between 3 to 28 months (Mean 14.30 months).

Procedures

For this study we gathered qualitative and quantitative information concerning preadmission, admission and follow-up placements using the A.B.S. and three questionnaires designed specifically for this project. The A.B.S. provides a clear, comprehensive picture of an individual’s daily functioning. It consists of two


parts: Part One is divided into 10 sections ( e g , Domestic activity, social and money skills) which look at the individual’s personal independence in daily life. Part Two is divided into 13 sections (plus medication level) and looks at those behaviors which are related to personality and behavior disorders (i.e., violent and destructive, antisocial and self-injurious behavior). Question 35, Section 12 (homosexual tendencies) was not included in this study and has since been removed from the revised A.B.S. Questionnaire 1 is comprised of 19 questions that address the characteristics of the participants prior to admission, including details such as age, gender and behavioral problems. Questionnaire 2 focuses on the admission data. Part A of Questionnaire 3 focuses on the characteristics of the follow-up placement, i.e., structure, daily activities and support available to the residents. Part B gathers more qualitative information concerning the appropri- ateness of the placement according to the keyworker and the feelings and thoughts of the participant about the placement. The details for each participant were collected from the clinical notes, which included a patient assessment record similar in format to the A.B.S. This comprised personal characteristics of the participant, details of their adaptive skills and challenging behavior, both on admission and discharge. These details were then transferred to the first A.B.S. for admission and the second for discharge. Questionnaires 1 and 2 were also completed at this stage. Whenever necessary, this information was then corrob- orated by the Sister on the treatment unit, the Charge Nurse of the rehabilitation unit and/or the Senior Social Worker, (author) all of whom knew the participants well. This treatment group was then followed up 5-32 months (Mean-17.50 months) after leaving the hospital. Semistructured individual interviews were carried out, each lasting about 1 hr at their present placements, with the two researchers and the key carer and following this, with the participant. The structure of the interviews whenever possible, remained consistent and were carried out in an open, friendly nonjudgmental atmosphere.

For the purpose of the analysis, significant improvement with regard to challenging behaviors as measured by the A.B.S. is when the overall domain score is reduced to below the 80% percentile cut-off point. This is the point adopted by A.B.S. users above which it is recommended that the behavior is serious enough to warrant further detailed analysis.

RESULTS

Adaptive skills

Between admission and discharge from the unit 18 out of 20 participants had


increased their adaptive skills by a mean of 40.00 points. Of these 9 had continued to improve at follow-up (Mean increase 29.55 points) 1 showed no change, and 6 had decreased slightly (mean 19.33 points). However, 2 participants’ scores had decreased by 37 and 40 points respectively, taking their adaptive scores lower than when admitted to the unit.

Challenging behavior

Between admission and discharge 18 out of 20 participants had also made good progress with regard to their challenging behavior. Of these, 17 had also made progress with regard to adaptive skills. There was a mean improvement of 34.72 points per participant. Of these, 4 had continued to improve at follow-up (Mean 24.50 points), 7 had deteriorated (mean 15.42 points) but remained less challenging than on admission and 7 had deteriorated further (mean 72.28 points).

Nine of the 18 participants who had problems with aggression on admission improved significantly during the treatment period and 5 maintained this improvement at follow-up. Seven of the 13 participants who showed severe self- injurious behavior on admission improved significantly during the treatment period, 4 of whom maintained this at follow-up. Four of the 13 participants who had problems with inappropriate sexual behavior improved significantly during the treatment period and all 4 maintained this at follow-up.

TABLE 1. Changes in challenging behavior.

Behavior Admission % Discharge % Follow-up %

Aggression 90 45 45 Self harm 65 30 30 Inappropriate sexual behavior 65 45 40 Total no. of challenging behaviors

per participant 4 2.2 2.9

Outcome measures-total A.B.S. scores A total of eight participants improved their overall A.B.S. scores from dis-

charge to follow-up (i.e., summarizing the results from Parts 1 & 2). These are classified as the “good outcome” group. The remaining 12 participants can be


divided into those whose scores had decreased but not to the level on admission (the “medium outcome” group N = 8), and those whose scores had decreased to below the level on admission (“poor outcome” group N = 4). Therefore, adding together the good and medium outcome groups, 16 participants had improved from admission to follow-up.

The participants were divided into two groups: the good outcome group ( N = 8) and the remainder ( N = 12). These were significantly different groups (0.05 level) as measured by a [-Test. A number of participant characteristics which could explain these groupings were then analyzed using t-Tests and Fishers Exact where appropriate (Significance measured at 0.05 level).

TABLE 2. Mean scores on participant characteristics.

Characteristic Mean Mean-Good GP Mean-Poor GP (n = 8) (n = 12)

Age on admission

I.Q. (Years)

Time OR unit (Months)

Total time in hospital

Time since disch (Months)

19.70 18.87 (3.48)

66.40 66.37 (4.17)

20.30 14.87 (9.64)

28.80 24.25 (12.55)

17.40 21.62 (6.58)

20.25 (5.02) 66.41

(1 0.06) 24.00

(1 8.67) 31.91

(20.39) 14.58 (7.87) sig.

Note: Standard deviations are in parentheses.

There is a clear difference between the Good and Poor Outcome groups on admission and discharge, the Good Outcome group scoring lower on Adaptive Skills and higher on challenging behavior than the Poor Outcome group. It is the reemergence of challenging behavior which explains the group whereas the Adaptive Skills are generally maintained.

For those who progressed onto the rehabilitation unit their adaptive scores were significantly higher and the challenging behavior scores were significantly lower on admission than the nonrehabilitation group.

Changes in structure The changes in the level of structure between preadmission and follow-up

placements was estimated depending on whether or not the units were locked, the amount of freedom allowed and the stafflclient ratio. 10 participants were in less restrictive placements, 6 were in placements with the same level of structure as

Learning disabilities & challenging behavior

150

163

.....................................................................................................................................

MEAN TOTAL SCORES 250 I I

0 ' I I ADMISSION DISCHARGE F.UP

Figure 1. A.B.S. totals. Parts 1 & 2. (Key: 0, good outcome 1; *, good outcome 2; W, poor outcome 1; 0, poor outcome 2). 1 = adaptive skills; 2 = challenging BHRS; N = 20.

preadmission and the remaining 4 were living in more restrictive placements at follow-up compared to preadmission.

Keyworkers When asked their opinions as to the present placements, 12 keyworkers be-

lieved the participants to be appropriately placed, 5 only on a short-term basis and the remaining 3 thought they were inappropriate. A mix of placement types was found in each group.

Participants Seven participants reported to be happy and settled in their placements. 5 of

these were in residential care homes, 1 in a staffed hostel, and 1 at home. All 7 had been planned discharges.

Eight participants were happy with their placements on a short-term basis, 5 expressed a wish to move in the near future. Of these 5 only 2 had been planned discharges.

Eighty-eight percent of the good outcome group had a full structured program


I 200 ....................................................................................... ................................

150 .................................................................................................................................... t

0 ADMISSION DISCHARGE F.UP

Figure 2. A.B.S. totals. Parts 1 & 2. (Key: 0, rehab. GP1; *, rehab. GP2; W, non-rehab, GP1; 0, non-rehab, GP2.) 1 = Adaptive skills; 2 = challenging BHRS; N = 20.

of daily activities, whereas only 50% of the poor outcome group received a similar level of structure. Participants in both the good and poor outcome groups had been placed in a range of units in terms of number of coresidents.

DISCUSSION

The results from this study suggest that for young people with learning disabilities and challenging behavior good progress can be made during a treatment period on a behavioral unit. Improvements were made both in terms of an increase in adaptive skill levels and a reduction in the frequency of the challenging behavior. It was the reemergence of challenging behavior which accounted for the deterioration of some of the participants’ overall scores at follow-up. This finding supports Clare and Murphy’s (1993) conclusion that it was “not always clear how effective the service was in reducing individual clients’ challenging behaviour and maintaining them at lower levels at follow-up.” The Good outcome group scored


PARTlCl PANTS 12

8

6

4

2

0 PRISON HOSPITALRES CARE HOME HOSTEL

Figure 3. Comparison of placements. (Key: 8, pre-admission; a, follow-up; N = 20).

lower on adaptive skills and higher on challenging behaviors on both admission and discharge but at follow-up these findings were reversed. This continued increase in adaptive skills for those people functioning at a lower level on discharge was also found by Cohen et al. (1977). The rehabilitation group is also distinct in that they score higher on adaptive skill levels and lower on challenging behavior on admission. The good outcome group share the following three characteristics. They are younger on admission, their treatment period shorter, and they had been discharged for a longer period of time (significant). This finding does not support other studies, (Kleinberg & Galligan, 1983; Hemming, Lavender, & Pill, 1981) who suggest that improvements may fade over time. However, the sometimes traumatic effects of a change of placement for people with learning disabilities as documented by Hopsom (1981) may account for the lower scores of the more recently discharged participants in the poor outcome group.

It is a common notion that smaller placements lead to more normalized outcomes (Allan, 1988). This study provides evidence to suggest that this is not


necessarily the case. Seven participants who were involved in the planning of their postdischarge placement reported that they were overall happier and more settled at follow-up. This may have implications for the care and planning of services for this particular group of young people.

The methodological problems of a study of this nature should be acknowl- edged. These relate to its retrospective design, lack of a control group, small subject numbers, and the reliance on a raying scale which relies heavily on the subjective opinions of staff and participants. It was evident, for example, that keyworkers’ interpretations and tolerance of behavior varied considerably and therefore was not consistent throughout. We consider the strengths of this study were firstly the consistency of interviewers being the same throughout, thus reducing the risk of interrater variability (Isett & Spreat, 1979), and secondly, the collection of qualitative information, particularly from the participants them- selves was carried out in a relaxed and neutral atmosphere in an attempt to avoid a high level of acquiescence (Sigelman, Budd, Winer, Schoenrock, & Martin, 1982).

Although the findings of this study may be particular to behaviorally orien- tated settings, the research available suggests that the results are fairly typical. Maintenance and generalization, especially as far as challenging behavior is concerned, are indeed difficult to achieve (Clare & Murphy, 1993) and gains are liable to be slow. Behavioral units, however, can provide a useful short-term service for young people with learning disabilities and challenging behavior and can be a successful stepping stone to the community. Little is currently known however, about which particular features of a treatment program contribute to its success in reducing challenging behavior and increasing adaptive skills. Further research is needed to establish this. In addition the paucity of longitudinal studies needs to be addressed.

REFERENCES

Allen, D., (1989). The effects of reinstitutionalisation on people with mental handicaps: A review. Mental Handicap Research, 2, 18-37.

Clare, I. C. H., & Murphy, G. H. (1993). M.I.E.T.S. (Mental Impairment Evaluation and Treat- ment Service): A service option for People with mild mental handicaps and challenging behaviour andlor psychiatric problems. Mental Handicap Research, 6,7&91.

Clements, P. R., Dubois, Y., Bost, L., & Bryan, C . (1981). Adaptive Behaviour Scale, Part Two: predictive efficiency of severity and frequency scores. American Journal of Mental Deficiency. 85, 433434.

Cohen, H. et al. (1 977). Behavioural effects of inter-institutional relocation of mentally retarded residents. American Journal of Mental Deficiency, 82, 12-1 8.

Crawford, J. L., Aiello, J. R., & Thompson, P. E. (1979). Deinstitutionalisation and community placement: clinical and environmental factors. Mental Retardation, 17, 59-63.


Hemming, H., Lavender, A,, & Pill, R., (1981). Quality of life of mentally retarded adults transferred from large institutions to small units. American Journal of Mental Deficiency, 86,

Hopson, B. (1988). Transition: understanding and managing personal change. In Griffiths, D. (Ed.), Psychology and Medicine. Exeter: MacMillan.

Isett, R. D., & Spreat, S. (1979). Test-Retest and-Inter rater reliability of the AAMD adaptive behaviour scale. American Journal of Mental Deficiency, 84,93-95.

Kleinberg, J., & Galligan, B., (1983). Effects of de-institutionalisation on adaptive behaviour of mentally retarded adults. American Journal of Mental Deficiency, 88, 21-27.

Laslett, R., (1982). Leavers from three residential schools for maladjusted children. Educational Review, 34, 125-137.

Moyes, T., Tennent, G. T., & Bedford, A. P., (1985). Long term follow-up study of a ward-based behaviour modification programme for adolescents with acting out and conduct problems. British Journal of Psychiatry, 147, 300-305.

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Nihira, K., et al. (1974). AAMD adaptive behaviour scale. Washington, DC: AAMD. Sigelman, C. K., Budd, E. C., Winer, J. L., Schoenrock, C. J. & Martin. P. W. (1982). Evaluating

alternative techniques of questioning mentally retarded persons. American Journal of Mental Deficiency, 86 51 1-518.

Wing, J. K., & Brown, G. W. (1970). Znstitutionalisation andschizophrenia: A comparative study of three mental health hospitals 1960-1968 London: Cambridge U.P.

Wolfensbereger, W., Nirje, B., Olshansky, S., Perske, R., Roos, P. (1972). The principle of normalisation in human services Toronto: Natl. Institute of Mental Retardation.

a follow up study of a behavioral program for young people with learning disabilities and...

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