Individual Characteristics and Service Expenditure on Challenging Behaviour for Adults with Intellectual Disabilities

Background English policy argues that people with intellectual disabilities should be supported in their local communities. There is considerable evidence that this aspiration is not being achieved. This paper seeks to look at the subsection of people with intellectual disabilities who have expensive care needs because of challenging behaviour, to identify the decision‐making processes that have led to current service provision and expenditure and to suggest improvements. Materials and Methods We carried out a survey within five North London boroughs to investigate the characteristics of a cohort of people with intellectual disabilities and challenging behaviour in high‐cost accommodation (over £70 000/annum). Postal questionnaires and face‐to‐face interviews were conducted with stakeholders with intellectual disabilities and patterns of current costs were estimated from existing data provided by the commissioning authorities in the five boroughs. Results Two hundred and five individuals with intellectual disabilities and challenging behaviour were identified. They were accommodated in placements provided by 97 separate providers, both in and out‐of‐area. Those more likely to be placed out‐of‐area were younger, had multiple health problems, significant challenging behaviour and mental health problems including autistic spectrum disorders. The local community intellectual disabilities teams identified a number of difficulties in meeting the needs of those service users. Conclusions Expenditure on all placements for service users with intellectual disabilities is significant. There is a notable lack of investment in local service development. A coherent approach is required, often across service boundaries. The authors suggest a model for targeted investment aimed at supporting effective local services, and reducing the need for and expense of out‐of‐area placements.     

OFFENDING BY ADULTS WITH LEARNING DISABILITIES: IDENTIFYING NEED IN ONE HEALTH DISTRICT

The extent to which adults in one health district with intellectual disabilities engaged in offending behaviour and the nature of their need was investigated in a series of three studies. First, the number of adults who reported having learning difficulties or who had attended special needs schools, in a consecutive series of adults charged at a city police station over a two-month period, was identified. Secondly, the extent and nature of offending by those living in residential placements for people with learning disabilities was ascertained retrospectively for the year 1992. In addition, the policies and responses of the residences' managers to offending behaviour were ascertained. Thirdly, a case control study of the outcome in the criminal justice process of those with self-reported learning disabilities identified in Study One was undertaken. Twelve (4.4%) of the 251 people arrested and screened at the city police station had been to a special school for children with mild or severe learning disabilities. Seven (2%) of 358 adults living in residential placements for adults with learning disabilities had been interviewed by police because of an alleged offence. None of this group appeared in Court despite the seriousness of some offences. In Study One, seven (58%) were sentenced by the Courts. None received a prison sentence or were diverted to the health service. The lack of established links between the criminal justice agency and other services and the experience and attitudes of staff in the different agencies both hindered the recognition of the presence of a possible learning disability and also prevented referral across agencies. These and social factors, such as homelessness, all contributed to a failure to provide for the needs of this minority of adults with learning disabilities who became involved in the criminal justice system.     

A Comparison of Adults with Intellectual Disabilities with and without ASD on Parallel Measures of Challenging Behaviour: The Behavior Problems Inventory‐01 (BPI‐01) and Autism Spectrum Disorders‐Behavior Problems for Intellectually Disabled Adults (ASD‐BPA)

Challenging behaviour may not be part of the diagnostic criteria for Autistic Disorder but they are frequently exhibited by children and adults with this condition. Levels of challenging behaviours are highest in individuals with an autism spectrum disorder (ASD) and co‐occurring intellectual disability (ID). The sample for this study consisted of 57 institutionalized adults with ID who either did or did not meet criteria for an ASD on a screening instrument [Autism Spectrum Disorders‐Diagnosis for Intellectually Disabled Adults (ASD‐DA)]. These two groups were compared on two parallel measures of challenging behaviour commonly used with this population: the Behavior Problems Inventory‐01 (BPI‐01) and Autism Spectrum Disorders‐Behavior Problems for Intellectually Disabled Adults (ASD‐BPA). Consistent with previous research, individuals with ASD demonstrated higher levels of overall challenging behaviour and especially with regard to self‐injurious and stereotypical behaviours. The convergent validity of these two scales was also demonstrated for the entire sample and by group.     

The Impact of Service User Cognitive Level on Carer Attributions for Aggressive Behaviour

Background This study was designed to test the hypothesis that carer attributions for aggressive behaviour vary according to a service user's severity of intellectual disability. Methods Forty‐two residential care staff participated in an investigation examining the effects of the level of a service user's intellectual disability on causal attributions for their aggressive behaviour. Equal numbers of participants were assigned to either a ‘mild disability’ or a ‘severe disability’ condition and required to read a vignette depicting a service user with aggressive challenging behaviour. The service user's cognitive abilities were experimentally manipulated across conditions, whilst the behaviour described remained unchanged. Participants were required to make attributions along Weiner's (1980 ) dimensions of locus, stability and controllability, and in accordance with five prominent models of challenging behaviour ( Hastings 1997b ). Results The service user depicted in the mild disabilities condition was perceived to have significantly greater control over factors causing the aggressive behaviour than the service user in the severe disabilities condition. Participants in the severe disabilities condition considered the aggression to be significantly more challenging. Learned behaviour and emotional causal models of aggressive behaviour were favoured, whilst the physical environment account was seen as least appropriate. Additionally, the biomedical model was rated as significantly more applicable in the severe disability condition than in the mild disability condition. Conclusions Implications for staff and service users are discussed. In particular, the relationship between staff causal attributions for challenging behaviour, their emotional responses and willingness to engage in helping behaviour is explored.     

Staff‐Averse Challenging Behaviour in Older Adults with Intellectual Disabilities

Background People with intellectual disabilities are increasingly reaching older adulthood. Little is known about age‐related change in the prevalence of challenging behaviours among older adults with intellectual disabilities. Materials and method The frequency and severity of staff‐averse challenging behaviours of 132 older adults with intellectual disabilities was assessed through informant ratings on the Inventory of Client and Agency Planning at two time points 8–10 years apart. Results There was an intraindividual decline in the frequency and severity of challenging behaviour using both lenient and more restricted definitions of challenging behaviour. There was a low prevalence but high comorbidity of severe challenging behaviour. Level of mental retardation and adaptive behaviour were related to the frequency and severity of challenging behaviour. Conclusions An understanding of age‐related intraindividual change in challenging behaviour has implications for staff wellbeing and optimizing the care of older adults with intellectual disabilities.     

Resident Involvement in Activity in Small Community Homes for People with Learning Disabilities

Background Determining the relative importance of variables including client characteristics, setting features, staffing and care practices on the lives of people with learning disabilities in residential care continues to be a relevant topic for research. Methods Measurements were made of the adaptive and problem behaviour of 343 adults with intellectual disabilities living in 76 residential homes and of various aspects of staffing, care practices (extent of active support) and resident engagement in meaningful activity. Ordinal and logistic regression was used to identify variables best predicting engagement and care practices. Results Only adaptive behaviour and care practices predicted resident engagement in meaningful activity; only age and adaptive behaviour predicted care practices. Conclusions Given the limited scope for changing resident adaptive behaviour, attention should be given to improve active support in residential homes in order to promote greater engagement in meaningful activity by people with learning disabilities.     

Out-of-area placements in Scotland and people with learning disabilities: a preliminary population study

People with learning disabilities have a different pattern of disease from the general population and high health needs that are frequently unidentified and unmet. Many require responses from general and specialist health services. A picture is emerging of some people with learning disabilities, often with complex care needs, moving from their home area on what is being termed, out-of-area placements, to receive specialist care. However, within the learning disability population, limited research has been undertaken and the impact on health services is unknown. Data were collected from health and social care providers to identify people with learning disabilities moving in and out of services across Scotland. Further data about the consequences and impact of out-of-area placements were gathered in one geographical area using focus group methodology. The results suggest that people with learning disabilities are moving in, out and across Scotland, often as a result of breakdown of local care arrangements or because of lack of specialist resources. Planning, service development and effective communication need to be in place to address the needs of this increasing and ageing population.     

The Effect of an Attachment‐Based Behaviour Therapy for Children with Visual and Severe Intellectual Disabilities

Background A combination of an attachment‐based therapy and behaviour modification was investigated for children with persistent challenging behaviour. Method Six clients with visual and severe intellectual disabilities, severe challenging behaviour and with a background of pathogenic care were treated. Challenging behaviour was recorded continuously in the residential home and during therapy sessions. Alternating treatments were given by two therapists. In phase 1, the experimental therapist attempted to build an attachment relationship in sessions alternating with sessions in which a control therapist provided positive attention only. In phase 2, both therapists applied the same behaviour modification protocol. Results Across clients, challenging behaviour in the residential home decreased during the attachment therapy phase. The behaviour modification sessions conducted by the experimental therapist resulted in significantly more adaptive target behaviour than the sessions with the control therapist. Conclusion For these clients with a background of attachment problems, attachment‐based behaviour modification treatment may have important advantages over standard behaviour modification.     

Treatment and Management of Challenging Behaviours in Residential Settings

Aspects of the treatment and management of challenging behaviour were investigated among 500 adults with intellectual disabilities receiving various forms of residential supports. The present results indicated that: (1) 53% of participants were reported to have shown at least one ‘moderately serious’ or ‘severe’ form of challenging behaviour in the previous month; (2) the most commonly employed management strategies were physical restraint (used with 44% of people showing challenging behaviour), sedation (35%), seclusion (20%) and mechanical restraint (3%); (3) the most commonly employed ‘treatment strategies’ were goal setting within individual programme plans (used with 62% of people showing challenging behaviour), antipsychotic medication (49%), written intervention programmes (23%) and written behaviourally orientated intervention programmes (15%); and (4) factors identified through logistic regression analyses to be associated with the use of specific treatment and management strategies included personal characteristics of the person with intellectual disabilities (e.g. age and diagnosis of autism), resources (e.g. type of accommodation, cost of provision and staffing levels), the organization of resources (e.g, planning of support to residents) and the nature of the challenging behaviour (e.g. more sustained episodes of challenging behaviour).     

Community‐based Residential Supports for People with Intellectual Disabilities and Challenging Behaviour: The Views of Neighbours

Background The issue of the views of neighbours of community‐based residential supports for people with intellectual disabilities and challenging behaviour has not been examined till date. This study looks at the views of neighbours of two types of community‐based residential supports: non‐congregate settings where the minority of residents have challenging behaviour; and congregate settings where the majority of residents have challenging behaviour. Materials and methods A self‐completion questionnaire was used to collect information on contact between neighbours, residents and staff, and the views of neighbours. Information was also collected by semi‐structured interview with service staff on the characteristics of settings. Results Sixty‐four questionnaires were returned. Contact between neighbours and service users was limited for both types of setting, with two‐thirds of neighbours not knowing any service users by name, and a third having had no active contact with service users. Neighbours of non‐congregate settings were more likely to think that community care was a ‘good policy’ (76%) than neighbours of congregate settings (53%) and to believe that there were benefits to the neighbourhood from having the group home in the area (46% versus 29%) but these differences were not significant. Contact with people with intellectual disabilities was associated with more positive attitudes to community care and specific characteristics of the settings. Conclusions Contact between neighbours and people with severe intellectual disabilities and challenging behaviour is limited. However, the majority of neighbours are positive about community care and the problems reported by neighbours are predominantly minor. The results point to the key role that contact plays in fostering positive attitudes. Findings regarding differences between congregate and non‐congregate settings are limited by the small number of responses from neighbours of congregate settings.     

Indicators of choking risk in adults with learning disabilities: a questionnaire survey and interview study

Purpose. Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking. Method. A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A 'service user' may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture. Results. A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals. Conclusion. Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Indicators of choking risk in adults with learning disabilities: A questionnaire survey and interview study

Purpose.?Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking.

Method.?A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A ‘service user’ may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture.

Results.?A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals.

Conclusion.?Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Screening for Psychiatric Disorders in a Total Population of Adults with Intellectual Disability and Challenging Behaviour Using the PAS‐ADD Checklist

Background Previous research has suggested a variety of possible relationships between the presence of symptoms of psychiatric disorder and challenging behaviours in people with intellectual disability. This study explores this relationship in a total population sample of adults with challenging behaviour. Materials and Methods Over 800 service settings in a defined geographical area were screened to identify individuals with challenging behaviour. Detailed behavioural data, Psychiatric Assessment Schedule for Adults with a Developmental Disability (PAS‐ADD) checklist and Adaptive Behaviour Scale (Part 1) scores were collected on 76% of the 930 adults identified. Results Just under 17% of participants reached threshold scores on one on more subscales of the PAS‐ADD checklist. There was some evidence of increasing behavioural severity being associated with increasing psychiatric symptoms. There were no associations between specific forms of challenging behaviour and individual symptoms. Conclusions The data would appear supportive of previous suggestions that it is unlikely that the majority of challenging behaviours in adults with intellectual disability are underpinned by psychiatric disorder.     

A Preliminary Investigation into the Utility of the Adult Behavior Checklist in the Assessment of Psychopathology in People with Low IQ

Background Achenbach & Rescorla (2003) recently developed the Adult Behavior Checklist (ABCL) to assess psychopathology in the general population. The ABCL should be completed by a proxy informant. The use of proxy informants, instead of self‐reporting, makes the ABCL potentially suitable for the assessment of psychopathology in adults with intellectual disability. The aim of the present study was to examine reliability and validity of the ABCL in 124 adults with mild intellectual disability or low IQ, and severe challenging behaviour referred for residential treatment. Methods The ABCL was completed by two independent informants to assess inter‐rater reliability. To examine the validity of the ABCL, its relationship with three measures of functioning was assessed. Furthermore, association between scales of the ABCL and DSM‐IV axis I disorders was examined. Results The ABCL was reliable in terms of internal consistency of its scales, and inter‐rater reliability. Relationships between clusters of axis I DSM‐IV disorders and scales of the ABCL were found as expected. Moreover, ABCL scales predicted different measures of functioning. Conclusions The ABCL appears to be a reliable and valid measure to assess psychopathology in persons with mild intellectual disabilities or low IQ, admitted for treatment in facilities for adults with mild intellectual disability and severe challenging behaviour.     

Psychiatric in‐Patients Away From Home: Accounts by People With Intellectual Disabilities in Specialist Hospitals Outside Their Home Localities

Background This study reflects a growing concern with the placement of people with intellectual disabilities and complex mental health problems in out of area placements at a distance from their families and communities. Materials and methods We interviewed service users (n = 17) living in out of area in‐patient psychiatric units using a semi‐structured interview as part of a service user consultation process. The questions addressed safety and security, food, facilities, day time activities, education, opportunities for socialization, clinical, cultural and religious needs, carer involvement and access to information. Service users were also asked where they would prefer to live if they were to leave the hospital. Results Although there were some positive stories, service user responses suggested limited opportunities for engagement in therapeutic or educational experiences, for building supportive relationships with staff or other residents, for developing religious and cultural identities or for enhancing family relationships. Conclusions Whilst many of the issues raised by participants will be familiar to critics of institutional care, being placed at a distance from home is likely to put an additional strain on relationships with family members and limit opportunities to engage in practices valued by specific ethnic minorities. Commissioners and managers of community intellectual disability services should bear in mind the perspective of service users with complex mental health needs, and take seriously the drawbacks in placing individuals out of area.     

Providing Care for adults with Autistic Spectrum Disorders in Learning Disability Services: Needs‐based or Diagnosis‐driven?

Background This study assessed whether a Learning Disability Service should develop a specific autism strategy or provide services on a needs‐led basis. Materials and methods An autism screening questionnaire had been used to identify individuals scoring above a cut‐off who had (n = 9) or had not (n = 15) received a formal diagnosis of autism. A sample of low scorers (n = 22) were matched to these groups. Questionnaires assessing service provision, needs (disabilities and challenging behaviour), quality of life and knowledge of autism were sent to relatives of individuals living at home or key‐workers for those living in supported housing. Results The high scoring groups had similar levels of needs. Those diagnosed with autism received more services in total while the high scoring group without autism diagnoses scored significantly lower on quality of life. Although these differences were not maintained when level of disability was taken into account, it appeared that there was some level of unmet need in the high scorers without autism diagnoses group. Conclusions It appeared that resources should be targeted at identifying and addressing the specific needs of individuals presenting with autistic spectrum difficulties.     

Resettlement Outcomes for People with Severe Challenging Behaviour Moving from Institutional to Community Living

Background The purpose of this study was to evaluate the quality of life consequences arising from the resettlement of adults with challenging behaviour severe enough to be deemed to require continuing healthcare from a traditional learning disability hospital to new purpose‐built bungalows. The new accommodation was provided by a specialist NHS trust through special project arrangements designed to ensure that the provision of homelike accommodation in the community was coupled with ‘state of the art’ staff training. Methods There were 19 participants. Baseline data were collected on their adaptive and challenging behaviour and psychiatric status. Data on a variety of quality of care and lifestyle indicators were collected when the entire sample was in hospital (T₁), when a minority had moved to the community, but the majority remained in hospital (T₂), when the majority had moved to the community but a minority remained in hospital (T₃) and at follow‐up (T₄), when all lived in the community. Results There were almost no areas of significant deterioration in quality of care or lifestyle outcome arising from moving to the community. The community provision was more homelike and associated with some improvement in working methods and staff contact received by participants, increased family contact, greater participant involvement in household activity and constructive activity generally and reduction in staff‐reported challenging behaviour. Increases in the range and frequency of social and community activities over time were found but such increase also occurred while people remained in the hospital. Conclusions This evaluation has shown that the quality of care and lifestyle outcomes associated with new NHS community settings for adults with learning disabilities and severe challenging behaviour assessed as requiring continuing healthcare were generally equivalent or superior to previous hospital levels. In this, findings were similar to other more general deinstitutionalisation studies. Certain improvement over time was found within the follow‐up period studied. Further follow‐up may be relevant as developing the desired working culture among staff from an institutional background may take longer than was given within the length of this study.