Positive behavioural support in schools for children and adolescents with intellectual disabilities whose behaviour challenges

Abstract

Decision-makers with limited budgets want to know the economic consequences of their decisions. Is there an economic case for positive behavioural support (PBS)? A small before–after study assessing the impact of PBS on challenging behaviours and positive social and communication skills in children and adolescents with intellectual disabilities and behaviours that challenge was followed by an evaluation of costs. Results were compared with the costs of alternative packages of care currently available in England obtained from a Delphi exercise conducted alongside the study. Children and adolescents supported with PBS showed improvement in challenging behaviours and social and communication skills, at a total weekly cost of GBP 1909 (and GBP 1951 including carer-related costs). PBS in schools for children and adolescents with intellectual disabilities and behaviours that challenge may help to support them in the community with potential improvements in outcomes and also cost advantages.

Keywords

intellectual disabilities challenging behaviours positive behavioural support school children economic analysis

Introduction

There are 40,000 children with intellectual disabilities and behaviours that challenge in England (Cooper et al., 2014), many of whom are accommodated in residential care facilities or schools (Gore et al., 2015). Challenging behaviours and disruptive behaviours have been reported as the main reason for placement in residential schools (McGill et al., 2006). These placements are associated not only with a reduction in contacts with families and an increase in the already higher vulnerability to abuse and neglect in children with mental or intellectual disabilities (Jones et al., 2012) but also with high costs: GBP 107,987 for a 38-week and GBP 171,176 for a 52-week residential school placement, 2012–2013 prices (Clifford and Thobald, 2012).

Consistent with the growing emphasis on provision of care for children with intellectual disabilities and behaviours that challenge outside of the residential settings and within the community (DH, 2012a, 2012b), positive behavioural support (PBS) has emerged as a promising approach (British Psychological Society, 2004; LGA and NHS England, 2014; NICE, 2015). Advocated since the mid-1980s (Allen et al., 2005), PBS is:

a multicomponent framework for (a) developing an understanding of the challenging behaviour displayed by an individual, based on an assessment of the social and physical environment and broader context within which it occurs; (b) with the inclusion of stakeholder perspectives and involvement; (c) using this understanding to develop, implement and evaluate the effectiveness of a personalised and enduring system of support; and (d) that enhances quality of life outcomes for the focal person and other stakeholders. (Gore et al., 2013: 15)

PBS is characterized by specific values (stakeholder participation, quality of life and inclusion, using a constructional approach to prevent and reduce challenging behaviour), theory and evidence base (understanding the functions of challenging behaviour, primary use of applied behaviour analysis and secondary use of other evidence-based approaches) and process (data-driven approach, functional assessment, multicomponent interventions, monitoring and evaluation) (Gore et al., 2013). Built on person-centred planning, applied behavioural analysis (ABA) and inclusion, PBS uses educational and systems change methods to increase the overall quality of life in people with intellectual disabilities and behaviours that challenge living within the community and simultaneously decrease challenging behaviours (Carr et al., 2002).

PBS interventions in both school and non-school settings have been proven to be effective in decreasing challenging behaviours and increasing positive skills in children with intellectual disabilities (Carr et al., 1999; Durand et al., 2013; Davis et al., 2012). A recent meta-analysis of PBS in school settings found effectiveness in both reducing challenging behaviours and increasing appropriate skills, though with moderate effect sizes (Goh and Bambara, 2010). Notwithstanding the evidence on effectiveness, the economic evidence on PBS in schools is scarce. In the United States, PBS has been implemented in special and mainstream schools in the majority of states (OSEP, 2015), and the application of cost analysis and economic analysis to PBS programmes in schools is well described (Blonigen et al., 2008), though economic evaluations are missing. A cost–benefit analysis of a PBS programme in Maryland found saving in staff time, both administrative and instructional (Scott and Barrett, 2004). An unpublished document estimates the costs of implementation of PBS programmes in schools under three different scenarios, where the lack of details on methods hinders the interpretation of the results (Horner et al., 2012). A cost-effectiveness analysis of PBS programmes in eight schools in Philadelphia is currently ongoing (Eiraldi et al., 2014). In the United Kingdom, use is still confined to a few schools and the evidence is scarce but is consistent with the findings from the United States. In a small study conducted in one English locality, a school-based positive behavioural support service (PBSS) for children with intellectual disabilities and behaviours that challenge in the community and at risk of school breakdown was found to improve challenging behaviours and developmental skills in three children, for which case studies were described (Jackson Brown et al., 2014).

This study presents an initial exploration of the economic case for the PBSS in schools for children and adolescents with intellectual disabilities and behaviours that challenge in one English local authority.

Methods

A small before–after study assessing the impact of PBSS on outcomes was followed by an examination of costs. We then made comparisons with costs of alternative packages of care for children and adolescents with intellectual disabilities and behaviours that challenge currently available in England obtained from a Delphi exercise that was conducted alongside the evaluation.

Participants

We studied children and adolescents with intellectual disabilities and behaviours that challenge who were referred and discharged from the PBSS in one English local authority since its inception in 2005 (N = 12). The criterion for referral was that their behaviour placed them at imminent risk of requiring a residential school placement due to school breakdown. A description of the children’s developmental profiles has been provided by Jackson Brown et al. (2014).

Intervention

PBSS provides individually tailored intensive interventions built on PBS/ABA principles to support the school placements of children and adolescents with intellectual disabilities and behaviours that challenge in the community and to increase the ability of carers and professionals to cope.

PBSS started in 2005 and is provided by the National Health Service (NHS) in England. It is funded by a joint commissioning group including the local authority social care and special education needs commissioners and the (NHS) Clinical Commissioning Group. PBSS supports children and adolescents (aged 5–18 years) with moderate/severe intellectual disabilities and severe levels of behaviours that challenge, at imminent risk of requiring a residential school placement due to school breakdown. Children and adolescents are not offered the intervention if it is judged unsafe to work with them. PBSS has three phases: assessment, intensive intervention and support and maintenance/discharge. The assessment phase aims to understand the function of challenging behaviours in children’s life. The intervention and support phase focuses on developing new adaptive skills and behaviours (e.g. emotional literacy, functional communication, continence and self-care) alongside the management of behaviours that challenge. The maintenance/discharge phase seeks to generalize the child’s skills across staff and settings and to embed the intervention programme in the wider school system by jointly working with school teachers and staff. Length and content of the interventions vary according to the children’s needs and circumstances. PBSS is provided primarily, though not exclusively in schools alongside existing supports, such as short breaks. The service is led by a clinical psychologist with the help of graduate assistant psychologists. Further details have been published elsewhere (Jackson Brown et al., 2014; NICE, 2015)

Measures

Challenging behaviours

When in contact with PBSS and after the initial assessment, the number of challenging behaviours was recorded daily for each individual by the clinical psychology team through direct observation as part of the intervention. Because of variability in challenging behaviours over short periods of time, total incident counts were calculated as weekly averages. For this study, the number of challenging behaviours was compared before and after PBSS. In order to allow comparison before and after the PBS programme, data were analysed only for children and adolescents who were supported and discharged from the PBSS (N = 9).

Verbal Behavior Milestones Assessment and Placement Program

The Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) (Sundberg, 2008) is a criterion-referenced assessment tool, curriculum guide and skill-tracking system for children with intellectual disabilities presenting with social communication delays. It has five core components: milestones assessment and tracking, identifying barriers to learning, transitions assessment, task analysis and skills tracking and curriculum placement and planning (including writing Individualized Education Program goals).

The VB-MAPP tool is a 170-item assessment framework capturing positive social and communication skills. The tool is organized across three developmental levels (0–18, 18–30 and 30–48 months) and into 16 skills domains (mand, tact, listener, visual perceptual and match-to-sample, independent play, social and social play, motor imitation, echoic, vocal, responding by feature and function and class, intra-verbal, group and classroom skills, linguistic structure, reading, writing and mathematics). Total score ranges between 0 and 170, with higher scores corresponding to more advanced developmental skills.

As for the number of challenging behaviours, the VB-MAPP was completed by the clinical psychology team every 6 months after the initial assessment and as part of the intervention since 2009, in order to plan and assess learning targets for individual children. For this study, the total VB-MAPP scores were compared before and after PBSS, to capture progress in children’s positive social and communication skills. In order to allow comparison before and after the PBS programme, data were analysed only for children and adolescents who were supported and discharged from the PBSS and for whom the total VB-MAPP data were available (N = 5). Data from the remaining four children were not available, as children were discharged from PBSS before the publication and introduction of VB-MAPP within the service in 2009.

Both data on challenging behaviours and data describing the development of positive social and communication skills were originally collected to support the clinical process and decision-making for the programmes. Therefore, inter-rater reliability checks were not undertaken and are not available for the presented data.

Client Service Receipt Inventory

The Client Service Receipt Inventory (CSRI) was used to assess service use (Beecham and Knapp, 2001), after adaptation by the authors (available on request) to collect information on socio-demographic and clinical characteristics, utilization of services (education, health and social care) and services (health and social care) used by carers due to children’s behaviours that challenge. Health and social care services included residential, inpatient, outpatient and community-based care. The CSRI was completed by the PBSS lead clinical psychologist retrospectively over the first 6 months during the intensive intervention and support phase, using data from clinical files.

Costs

The cost of the PBSS was calculated from data obtained from the joint commissioning group annual review. The review reported annual cost for five children and included the cost of staff (one clinical psychologist and up to five graduate assistant psychologists depending on child needs and circumstances), clinical supervision costs, administrative and travel costs. Cost averaged GBP 36,405/child/year (2012–2013 prices).

Unit costs for other services were taken from the Personal Social Services Research Unit volume (Curtis, 2013), NHS reference costs (DH, 2013), previous studies (Clifford and Thobald, 2012; McGill, 2008) and directly from the CSRI (see Table 1). Where needed, costs were inflated using the Hospital and Community Health Services Pay and Prices Index (Curtis, 2013).

Table 1.

Unit costs (GBP, 2012–2013).

	GBP (2012–2013)	Source
Education
LEA day school	524 per week	Clifford and Thobald (2012)
Classroom assistant	0/week^a	Clifford and Thobald (2012)
Educational psychologist	134/h	Curtis (2013)
School family worker/educational support worker	0/week^a	Clifford and Thobald (2012)
Health and social care (children)
Inpatient service (ICU)	1373/day	DH (2013)
Accident and emergency	115/contact	DH (2013)
Outpatient service	172/contact	Curtis (2013)
General practitioner	172/h	Curtis (2013)
Psychiatrist	261/contact	Curtis (2013)
Child development centre/community paediatrics	310/contact	DH (2013)
Community nurse	50/h	Curtis (2013)
Speech and language therapist	30/h	Curtis (2013)
Social worker	153/h	Curtis (2013)
Direct payments	105–120/contact	CSRI
Travel costs scheme	4–100/contact	CSRI
Holiday schemes	600–1000/contact	CSRI
Children’s homes	491/night per night	McGill (2008)
Health and social care (carers)
Inpatient service	598/day	Curtis (2013)
Outpatient service	100/contact	Curtis (2013)
General practitioner	172/h	Curtis (2013)
Community nurse	50/h	Curtis (2013)
Social worker	159/h	Curtis (2013)

LEA: Local Education Authority; ICU: intensive care unit.

^aIncluded in LEA day school cost.

Statistical analysis

Socio-demographic and clinical characteristics of the children were described. Total number of challenging behaviours and VB-MAPP scores were compared before and after intervention using the paired Wilcoxon signed rank test.

Cost elements

The economic analysis adopted a public services perspective, including education, and social and healthcare for children and carers. Service costs per week were estimated by combining intensity of use with unit costs. Total costs were estimated by sector (education, health and social care) and service group (residential, inpatient, outpatient and community-based care). Weekly costs were compared with the cost of supporting children and adolescents with intellectual disabilities and behaviours that challenge in the alternative support packages currently available in England identified by the Delphi process (see below). Analyses were performed in STATA 13 and MS Excel 2010.

Delphi exercise and costs of alternative support

In the absence of a comparison group, we used findings from a Delphi exercise that was conducted alongside the evaluation. The Delphi exercise was a consensus exercise that asked a group of experts on intellectual disabilities and behaviours that challenge about what support would be likely to be provided in their own localities to four children and adolescents with intellectual disabilities and behaviours that challenge described in four ‘case vignettes’ that were provided by clinicians from their clinical practice with names and small details changed to preserve anonymity (Iemmi et al., 2015). The Delphi exercise permitted the identification and estimation of the costs of different support packages currently available in England. The Delphi exercise also enabled to estimate the weighted cost of support packages for children with intellectual disabilities and behaviours that challenge, as the cost of the support package multiplied by the proportion of times that each of them was reported by Delphi participants. The four case vignettes provided by one of the authors (FJB) and clinicians from another locality described children and adolescents with intellectual disabilities and behaviours that challenge supported through PBS programmes in England. The number of vignettes was hopefully adequate to capture the diversity in needs of children and adolescents with intellectual disabilities and behaviours that challenge and small enough to assure completion in a sensible amount of time.

Results

Participants

Table 2 describes the characteristics of the 12 children. Mean age of the sample at start of PBSS was 10 years (SD = 11, range 4–13). Ten were boys; eight were White and four from ethnic minorities (Black Caribbean, Black African, Indian and other); seven were living in social housing and five in owner-occupied accommodation. Nine were living with both natural parents and three with the natural mother only. Half the parents were unemployed. Seven children had a diagnosis of an autism spectrum disorder, one of Down syndrome and one of brain injury and epilepsy; 11 had severe intellectual disabilities and 1 with moderate intellectual disability. All sample members exhibited aggression as the primary challenging behaviour, with a primary function of escape/avoidance for 10 and attention for 2 of them.

Table 2.

Characteristics of the participants.

	Age (years)	Gender	Ethnicity	Accommodation	Parents’ employment status	Severity of intellectual disability	Co-morbidities	Primary challenging behaviour (function)	Length of PBSS (months)
1	12.7	Male	White	Owner occupier	Employed	Severe	Down Syndrome	Aggression (escape/avoidance)	30
2	13.1	Male	White	Social housing	Unemployed	Severe	None	Aggression (escape/avoidance)	24
3	9.8	Female	White	Social housing	Unemployed	Severe	None	Aggression (escape/avoidance)	36
4	5.6	Male	Black African	Social housing	Unemployed	Severe	ASD	Aggression (escape/avoidance)	42
5	8.8	Male	Black Caribbean	Social housing	Employed	Moderate	ASD	Aggression (escape/avoidance)	16
6	10.2	Male	White	Social housing	Unemployed	Severe	ASD	Aggression (escape/avoidance)	27
7	12.3	Male	Indian	Social housing	Unemployed	Severe	ASD	Aggression (escape/avoidance)	8
8	13.3	Male	White	Social housing	Unemployed	Severe	None	Aggression (escape/avoidance)	9
9	12.5	Female	White	Owner occupier	Employed	Severe	ASD	Aggression (escape/avoidance)	7
10	10.7	Male	White	Owner occupier	Employed	Severe	ASD	Aggression (escape/avoidance)	22
11	3.6	Male	White	Owner occupier	Employed	Severe	Brain injury and epilepsy	Aggression (attention)	24
12	5.2	Male	Other	Owner occupier	Employed	Severe	ASD	Aggression (attention)	18

Note: N = 12. ASD = autism spectrum disorder.

Mean length of PBSS intervention was 22 months (range 7–42).

Outcomes

Table 3 summarizes the outcomes before and after PBSS for the 12 children. Among children and adolescents who were supported and discharged from the PBSS (N = 9), the mean number of challenging behaviours per day decreased from 21 (SD = 20, range 5–65) before to 4 (SD = 5, range 0–14) after PBSS. Among children who were supported and discharged from the PBSS and for whom VB-MAPP data were available (N = 5), total scores increased from 28 (SD = 27, range 6–72) before to 53 (SD = 48, range 23–136) after PBSS. Differences were statistically significant for both number of challenging behaviours (z = 2.55, p = 0.01, N = 9) and VB-MAPP total scores (z = −2.02, p = 0.04, N = 5).

Table 3.

Number of challenging behaviours and VB-MAPP of the participants before and after PBSS.

	No. of challenging behaviours (per day)		VB-MAPP (total score)
Sample member	Before PBSS	After PBSS	Before PBSS	After PBSS
1	23.5	5.1	NA	NA
2	18.2	4.3	NA	NA
3	6.1	1.0	NA	NA
4^a	10.6	8.0	22.0	47.5
5	5.4	0.2	17.5	29.0
6	6.5	8.0	5.5	22.5
7	65.0	1.4	34.0	53.0
8	6.2	0	8.5	24.0
9	41.0	14.0	NA	NA
10^a	7.0	6.2	24.5	58.0
11	20.6	1.6	72.0	136.0
12^a	2.5	1.0	20.5	115.0
Mean	17.7	4.2	25.6	60.6
Mean (discharged children only)	21.4	4.0	27.5	52.9

Note: N = 12. PBSS = positive behavioural support service; VB-MAPP = Verbal Behavior Milestones Assessment and Placement Program; NA = not applicable.

^aParticipants receiving ongoing support.

All children and adolescents who continued to receive ongoing support from the PBSS (N = 3) were also showing reductions in the number of challenging behaviours and increases in VB-MAPP scores.

Service use

Table 4 summarizes services used by the 12 children and adolescents over 6 months. Most children in this study were living in the community, except one who was living in a children’s home. All attended a public sector day school where they received the daily support of a classroom assistant. Two children saw an educational psychologist once and twice respectively, and one received support from a school family worker. Eleven children experienced respite care (average 29.7 days; SD = 8.1). One child lived in a care home for the entire 6 months. One child used inpatient care, another accident and emergency and another outpatient services.

Table 4.

Service use and cost over 6 months by children and adolescents supported with PBSS (GBP, 2012–2013).

	No. using	No. contacts (mean (SD))	Contact: hours (mean (SD))	Weekly cost (mean (SD))
Education
LEA day school (days)	12	130 (0)	NA	524.0 (0)
Classroom assistant	12	97.5 (0)	7 (0)	0.0^a (–)
Educational psychologist	2	1.5 (0.7)	1.3 (0.4)	1.7 (4.6)
School family worker/educational support worker	1	3 (–)	1 (–)	0.0^a (–)
Total education				525.7 (4.6)
Health and social care (children)
Residential care
Children’s home (days)	1	182 (–)	NA	286.4 (992.2)
Other than children’s home (days)	3	29.7 (8.1)	NA	140.1 (261.7)
Total residential care				426.5 (982.5)
Inpatient care
Inpatient service (ICU; days)	1	10 (–)	NA	44.0 (152.4)
Total inpatient care				44.0 (152.4)
Outpatient care
Accident and emergency	1	1 (–)	NA	0.4 (1.3)
Outpatient service	1	1 (–)	NA	0.6 (1.9)
Total outpatient care				0.9 (2.2)
Community-based care
General practitioner	2	2 (0)	0.5 (0)	1.1 (2.6)
Psychiatrist	9	1.9 (1.7)	1 (0)	11.8 (13.9)
Child development centre/community paediatrics	6	1.3 (0.5)	0.5 (0)	7.9 (9.3)
Community nurse	2	4.5 (2.1)	1 (0)	1.4 (3.6)
Speech and language therapist	2	1 (0)	1 (0)	0.2 (0.4)
Social worker	11	4.9 (3.1)	1 (0)	26.5 (19.2)
Direct payments	2	26 (0)	NA	18.8 (43.9)
Travel costs schemes	10	97.5 (0)	NA	139.1 (175.9)
Holiday schemes	2	1 (0)	NA	5.1 (12.4)
Total community-based care				211.9 (221.0)
Total health and social care (children)				683.3 (1078.0)
Health and social care (carers)
Inpatient service	1	2 (–)	6 (–)	23.0 (79.7)
Outpatient service	1	2 (–)	1.5 (–)	0.6 (2.2)
General practitioner	1	2 (–)	0.3 (–)	0.3 (1.0)
Community nurse	4	5.3 (1.5)	1 (0)	3.4 (5.2)
Social worker	7	4.1 (2.4)	1 (0)	14.8 (17)
Total health and social care (carers)				42.1 (81.6)
Total education and health and social care (children)				1209.0 (1077.9)
Total education and health and social care (children and carers)				1251.1 (1090.6)
PBSS				700.1
Total education and health and social care with PBSS (children)				1909.1 (1077.9)
Total education and health and social care with PBSS (children and carers)				1951.2 (1090.6)

PBSS: positive behavioural support service; LEA: Local Education Authority; ICU: intensive care unit; NA: not applicable; –: not available because based on one case only.

^aIncluded in LEA day school cost.

Eleven children were supported by the allocated social worker. Three-quarters consulted a psychiatrist at least once. Half the children used community paediatrics at least once. Two children had two consultations with the general practitioner, and another two had regular visits with the community nurse. Two children saw a speech and language therapist. Ten children benefited from a local travel costs schemes, two used direct payments and two attended holiday schemes.

Seven carers had regular social worker contacts due to the children’s behaviours that challenge. Four carers had contact with the community nurse. One carer used inpatient care twice; another used outpatient services and the general practitioner twice.

Service cost

Table 4 shows the weekly cost of services for the 12 children and adolescents. Total weekly cost of education, health and social care was GBP 1209 and increased by 2% (GBP 1251/week) when health and social care costs incurred by carers due to the children’s behaviours that challenge were included. Just under half (42%) of the total was education costs (GBP 526/week), almost all for day schools, classroom assistance and school family worker. Educational psychologist costs were small.

Just over half (55%) the costs were for health and social care (GBP 683/week), two-thirds for residential care respite care for three children; a care home for one child. A third of health and social care costs were for community-based care: travel costs schemes, social worker, direct payments, psychiatrist, community paediatrics and holiday schemes and less substantially for community nurse, general practitioner and speech and language therapist. Inpatient care costs were small.

The costs of health and social care used by carers as a consequence of the behaviours that challenge averaged GBP 42/week.

When PBSS cost was included, total weekly cost was GBP 1909 without carer service use and GBP 1951 with these included. Under the assumption of an average duration of the PBSS of 22 months and the same use of services over that period, total annualized cost was GBP 99,273 without and GBP 101,462 with carer costs.

Comparison with Delphi results

During the Delphi exercise, the different packages of care likely to be received by the four children with intellectual disabilities and behaviours that challenge described in the four case vignettes were identified and their weekly cost estimated to vary widely from GBP 85 to GBP 151 for packages of care provided within the community (without any support, with social care or with social and mental health care) and from GBP 2117 to GBP 9373 for packages of care provided in residential-based settings (residential schools, psychiatric hospital and secure unit) (Iemmi et al, 2015). Up to two-fifths of the Delphi participants indicated that the four children would be likely to be supported in residential-based care. After weighting the cost of different support packages by their probabilities (taken from the answers provided by Delphi participants), the estimated weekly cost for each of the four vignettes was GBP 762, GBP 988, GBP 1336 and GBP 1440.

Discussion

PBSS was shown to be effective in decreasing the number of challenging behaviours and increasing positive social and communication skills in children and adolescents with intellectual disabilities and behaviours that challenge. This improvement was associated with total weekly cost of GBP 1909 (or GBP 1951 including costs incurred by carers due to children’s behaviours that challenge).

A high proportion of the service costs (42%) were associated with special education, a proportion that is lower than that reported by Snell et al. (2013) from a national epidemiological survey sample of young people with a range of psychiatric disorders. Costs varied considerably between individuals in our sample and linked to heterogeneity of individual needs, characteristics and circumstances. Our sample was too small to examine these variations statistically, but it is interesting that Allen et al. (2007) found that high-cost out-of-area placements were associated with individual characteristics and clinical history, and Knapp et al. (2015) found significant links between individual characteristics, psychiatric needs and costs.

The cost of supporting children and adolescents with PBSS was higher than the likely cost of supporting children and adolescents with intellectual disabilities and behaviours that challenge in England, as estimated through the Delphi exercise. However, of the 12 children and adolescents initially at risk of residential school placement, only 2 were transferred to specialist residential schools, 7 remained in the community with less service-intensive support and 3 continued to be supported with PBSS (Jackson Brown et al., 2014). Whilst sometimes residential school placements may not be avoided, this suggests that – after an increase in cost during the period of PBSS support – about 22 months – avoiding residential school placements may decrease the long-term cost of care.

The broad diversity in needs of children and adolescents with intellectual disabilities and behaviours that challenge means broad diversity in packages of care and their cost. Thus, the weekly cost of support may vary from GBP 85 for individuals living at home without support (Iemmi et al., 2015) to GBP 3292 for 52-week residential school placement (Clifford and Thobald, 2012), GBP 4529 for psychiatric hospital (Curtis, 2013) and GBP 9373 for a secure unit (Curtis, 2013).

Strengths and limitations

To our knowledge, this is the first study estimating the use and cost of services by children and adolescents with intellectual disabilities and behaviours that challenge receiving school-based PBS in England.

The study has a number of limitations. First, the collection of data at different times did not allow for comparison of outcomes at two well-defined points before and after the PBSS. This was because data were originally collected as part of the PBS intervention and only later used for this exploratory evaluation. Second, the absence of inter-rater reliability for data relating to the number of challenging behaviours and positive social and communication skills may have led to potential bias. Third, the lack of a control group meant that we cannot attribute the measured improvement in outcomes to PBSS only. Fourth, the absence of data on service use before and after PBSS did not allow us to measure any change in service use and costs over time. Fifth, the high variance in service use for some services may have limited the generalizability of the results. For example, one child was supported in a children’s home for the entire 6 months. Finally, the absence of data on unpaid care and its cost is a limitation; this element has been previously evaluated at 66% of the total societal cost of supporting adolescents with intellectual disabilities and behaviours that challenge (Barron et al., 2013). Moreover, the absence of data on health and social care use by carers before and after PBSS may also have led to underestimation of the potential reduction in public services costs, particularly since challenging behaviours have been found to be associated with carers’ well-being (Hastings, 2002).

Searches for comparable data sets in similar localities and the literature were unsuccessful: there is little routinely collected information on challenging behaviours at local level, the lack of agreement on evaluation tools for challenging behaviours and no definition of ‘usual care’ for children with intellectual disabilities and behaviours that challenge due to the heterogeneity of both service provision across England and children’s individual needs and circumstances. We tried to address this limitation by performing a Delphi exercise that generated information on alternative packages of care likely to be received by children and adolescents with learning disabilities and behaviours that challenge in England and then to estimate their costs (Iemmi et al., 2015).

Implications for practice and research

Following the Winterbourne View report (DH, 2012a, 2012b), the move from residential-based to community-based care for people with intellectual disabilities has highlighted the challenge of finding suitable support in the community. Care for people with intellectual disabilities and behaviours that challenge is being transformed (NAO, 2015), and effective and cost-effective interventions are recommended (NICE, 2015). PBS and person-centred approaches have emerged as a promising intervention within the community (DH, 2014; LGA and NHS England, 2014; NICE, 2015). In the United States, school-wide PBS has been implemented across the entire education system, and a technical assistance centre was established by the Department of Education (OSEP, 2015) to help define, develop, implement and evaluate this model. The United States experience highlighted challenges and positive factors that play a crucial role in the sustainability of the model (Bambara et al., 2012). In particular, the challenges include traditional educational practices and beliefs (e.g. challenging behaviours should be punished, students with behaviours that challenge are better supported in segregated settings and interventions to manage challenging behaviours should result in rapid reductions in challenging behaviours), administrative/organization structure (e.g. lack of leadership and time) and professional development and practice (e.g. lack of training). Whilst the United States have embraced PBS in schools for the management of challenging behaviours in both special and mainstream settings, providing promising evidence to help its implementation, the use of PBS in schools in the United Kingdom is still confined to few localities.

Our small study suggests that PBS in schools for children and adolescents with intellectual disabilities and behaviours that challenge may be an effective way to support them in their local community and leads to improvements in outcomes and potential cost advantages. A larger study is needed to test these tentative findings robustly.

Footnotes

Acknowledgements

We are grateful to Vivien Cooper (The Challenging Behaviour Foundation), Peter McGill (Tizard Centre) and Nick Gore (Tizard Centre) for providing advice during the project and to Jennifer Beecham (London School of Economics and Political Science), Renee Romeo (King’s College London) and Iris Molosankwe (King’s College London) for their valuable advice during the analysis.

Authors’ Note

The views expressed in this article are those of the authors and not necessarily those of the NIHR School for Social Care Research or the Department of Health/NIHR.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical approval

Ethical approval was obtained for the overarching study from the Social Care Research Ethics Committee (12/IEC08/0026).

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was made possible by a grant from the National Institute for Health Research (NIHR) School for Social Care Research.

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