Services for People with Challenging Behaviour What is the by fpe17463


									Services for People with Challenging Behaviour: What is the
need right now?

Paper presented to the Federation of Voluntary Bodies Networking Conference

Brian McClean                                          Ian Grey

Behaviour Support Service,                             KARE, Co. Kildare,
Brothers of Charity Roscommon, Ireland                 and Trinity College Dublin, Ireland

Address for Correspondence:
Dr. Brian McClean, Principal Clinical Psychologist, Brothers of Charity Services, Lanesboro
Street, Roscommon. Co. Roscommon.

1. Introduction
Challenging behaviour is defined as behaviour of such intensity, frequency or duration that
the physical safety of the person or others is likely to be placed in serious jeopardy, or
behaviour which is likely to limit the person’s access to or enjoyment of ordinary community
facilities (Emerson et al, 1987). Severe challenging behaviour usually involves physical
aggression or self-injurious behaviour. Although multiply determined, it is usually
challenging behaviour is usually associated with communicational disability and sometimes it
is associated with an underlying psychiatric condition.

Severe challenging behaviour is a sizeable challenge in the field of learning disability. In a
recent survey of a large Irish survey of 1,447 people with intellectual disability, 28% were
identified as having a challenging behaviour which met the definition above, and 15% were
identified as having a severe challenging behaviour (defined according to a tissue damage
criterion; McClean, 1995). This is consistent with other epidemiological studies conducted in
the U.K. (e.g. Harris, 1996, Oliver et al, 1987).

People with challenging behaviours represent an extremely vulnerable group. They are
disproportionately represented in large residential centres, rather than in community settings.
According to Department of Health figures, at least 840 people are inappropriately placed in
long stay psychiatric hospitals. People with challenging behaviours are also over represented
among the 3,440 Irish citizens with intellectual disabilities who still live in institutional or
campus setting. Many of these individuals would not display challenging behaviours if
placed in environments that were matched to their needs and characteristics. In short, people
with challenging behaviours are frequently placed in congregate settings that mitigate against
the remediation of their behaviours.

The skills that carers require to ensure their access to the community are not widely available.
Their behaviours often place unbearable strain on their relationships with their primary carers.
The management strategies required to keep themselves and others safe may deprive them of
freedom and their dignity.

2. Challenging behaviours
People with challenging behaviours need functional assessments and multi-element behaviour
support plans. Extensive reviews of the research literature (Didden et al 1997, Scotti et al
1991) have demonstrated that behavioural interventions which are based on functional
assessment are currently the most effective for reducing of challenging behaviours. The meta-
analysis by Didden and colleagues in particular demonstrates convincing reductions in
challenging behaviour through the use of interventions based on functional analysis. The
impact is much more effective than that demonstrated by medication, for example. In a recent
study of 138 behaviour support plans, 78% were associated with significant improvement in
behaviour, after 22.5 months (McClean, Dench, Grey et al, 2005). Another study
demonstrated that behaviour support plans are effective when implemented with the five
people with the most severe challenging behaviours in a county (McClean, Grey and
McCracken, 2005).

Care givers need professional training in the design and implementation of multi-element
behaviour support plans. Care staff also need training in low arousal crisis intervention
strategies, for their own safety, and in order to ensure the care, welfare, safety and security of
those under their care.

Special treatment units do not work (Emerson et al 1987). Special treatment units aim to
develop a therapeutic environment capable of transferring individuals to mainstream services
after a temporary stay. However, behaviour change is not guaranteed and there may even be
behavioural deterioration after admission (Hoefkens and Allen, 1990). The main problem
with residential treatment units is that any changes that do occur there are unlikely to be
maintained after discharge (Hoefkens and Allen, 1990, Lowe, Felce and Blackman, 1996).
The removal of the person from the mainstream service reduces the need for training and the
development of competence within mainstream services, which can act as a barrier to
discharge (Newman and Emerson, 1991). As a consequence, silting up is a common

Specialist teams provide assessments and recommend interventions in situ, and in so doing,
increase the likelihood that improvements will be maintained after the specialist has
withdrawn. It has been shown that these teams can bring about changes in severe challenging
behaviours within be natural settings (Donnellan et al, 1985; Hudson et al, 1995) and that
these changes can be maintained or improved upon at six month follow up. They have been
found to require less intervention time than residential units (Maguire and Piersel, 1992), and
to be more cost-effective than residential services (Allen and Lowe, 1995). The main
disadvantage of this model is the problem of coverage. The specialists required to meet the
needs of the population of people with challenging behaviours may not be available in
sufficient number (Sprague et al, 1996). In a survey of 46 peripatetic teams, Emerson et al,
1996 found that 49% had caseloads of between 1-6 cases. The caseload range was between 1
and 25. It was estimated that only 48% of people with severe challenging behaviours are on
current team caseloads. Thus, like special treatment units, special teams may also be prone to
the problem of silting up and hence fail to provide the level of specialist support services

It is important to draw a distinction between a specialist team and a team of specialists.
Bringing about enduring behavioural improvement and efficient client throughput should not
be assumed as following the designation of specialist resources (Stancliffe, 1999). Lowe,
Felce and Blackman, (1996) evaluated the effectiveness of different specialist intervention
teams and concluded that teams that lack a coherent and co-ordinated approach to assessment
and intervention may not be effective despite the efforts of specialists. However, challenging
behaviours can be overcome when teams operate from a sound basis in functional assessment.

People with challenging behaviours have the right to live in the community. In order to
achieve this, families caring for people with challenging behaviours may need to access
regular respite care, intensive behavioural support at home, outpatient psychiatric evaluation
and monitoring, and access to acute psychiatric service or an alternative place of safety at
times of acute crisis.

3. Dual diagnosis (intellectual disability and psychiatric
Dual diagnosis is not synonymous with challenging behaviour. Not all psychiatric disorder
(e.g. anxiety, mild depression) place the safety of the person or others in jeopardy. Many
challenging behaviours are be functional adaptations to particular environments or to
communication disability rather than manifestations of underlying psychiatric conditions.

Attempts to forge a link between psychiatric disorders and challenging behaviour are often
tautological, since the aggressive or self-injurious behaviour are taken as a sign of psychiatric
disorder, which is then taken as evidence that those with psychiatric diagnoses show higher
rates of challenging behaviour. The accurate diagnosis of psychiatric illness in people with
intellectual disability is problematic for at least two reasons: (1) diagnosis depends a great
deal on verbal reports of symptoms, which may not be possible for many people with
intellectual disabilities and (2) diagnostic overshadowing means (Reiss, 1998) means that
many socially inappropriate behaviours can be attributed to intellectual disability, and
underlying psychiatric illness may be masked.

Challenging behaviour may arise as a symptom of psychiatric illness either as a core
symptom of the condition or as an atypical presentation of a core symptom. Alternatively,
psychiatric illness may act as a setting event for challenging behaviour. For example,
depression may be associated with unwillingness to perform certain activities, thus
establishing the termination of these activities as negative reinforcement. This formulation
leads to a range of intervention possibilities; change the setting event (i.e. treat the depression;
modify the activity (withdraw, reschedule, adapt)) and change the functionality of the
behaviour (teach a functionally equivalent alternative skill; differentially reinforce the new
skill over the challenging behaviour). This example illustrates the utility of multi-element
intervention for people with dual diagnosis.

Perhaps as a sign of the difficulty diagnosing psychiatric illness in people with intellectual
disability, there is no definitive estimate of the rate of psychiatric illness among people with
intellectual disability. In one review, Campbell and Malone Campbell and Malone (1991)
reported prevalence rates between 14 and 67%. The reported rate varies depending on
whether challenging behaviours are included as a form of psychiatric disorder. When
challenging behaviour is included, overall prevalence of psychiatric condition is estimated at
39% (Reiss, 1990), 30% (Menolascino,1989) and 36% (Iverson and Fox, 1989). However, if
those people presenting with challenging behaviour only are excluded, the rate of people with
psychotic and neurotic conditions is estimated at 8 – 10%.

One of the controversies that follows from the difficulty in accurately diagnosing psychiatric
illness concerns the extent of medication use among this population. Kiernan et al (1995)
surveyed seven district heath authorites in the UK and found that 48.1% of people with
operationally defined challenging behaviours received psychotropic medication. Fleming et
al (1996) found that 69% of 118 people resettled from long stay hospitals received
psychotropic drugs, primarily for challenging behaviour, only 9 people (7.6) with psychiatric
diagnosis. The authors also found that polypharmacy was not unusual and that medication
was continued over long periods, sometimes without review. While there is evidence of the
effectiveness of paychotropic medication among people with intellectual disability who have
clearly identified psychiatric illness, there is no evidence of the effectiveness or
ineffectiveness of antipsychotic medication for adults with intellectual disability and
challenging behaviour (Brylewski and Duggan, 1999).

People with dual diagnosis can have complex, highly individualised needs. A psychiatric
condition, imposed upon even a mild level of intellectual ability, can result in a high level of
dependency on a continuum of supports. The psychiatric condition can be episodic, cyclical
or chronic, and each category of psychiatric illness requires a different model of psychiatric
care. Some people with dual diagnosis present with challenging behaviour which threatens the
safety of the person and others.
4. Assessment of Need
Assessments of need for people with challenging behaviours should have six features. They
should be comprehensive, identify the function of behaviours, be consumer-driven, focus on
solutions, link with individual funding and allow for flexible resourcing.

1. People with challenging behaviour need a comprehensive assessment. The assessment
   should include the range of factors (cognitive, communication, life story, environmental,
   health, psychiatric and motivational) that may help explain why an individual engages in
   challenging behaviours. Assessment should include:

    •   Strengths – cognitive communicational, self-help, social and leisure abilities,
        opportunities and personal resources.
    •   Needs – impact of disabilities, service and resource gaps in their lives, needs for
        further development, mental and physical health needs.
    •   Likes, dislikes and preferences and how they express these.
    •   History – developmental, social, medical, history of use of services.
    •   Physical environment, – size, comfort, noise, access to community facilities, open
        spaces, safety.
    •   Interpersonal environment– relationships and values the network of people and
        relationships around the person whose behaviour is challenging. This might include:
        preceding interactions, critical comments from others, relationships with staff or
        family members and other service users; effects of the behaviour on them; interaction
        and engagement with the person; routines and practices; values and attitudes about
        disability and challenging behaviour, including cultural values;
    •   Organisational setting – systems and processes in place to support the person;
        crowding, availability of meaningful and satisfying activities, physical exercise, time
        of awakening, skills and resources available; preference and choice regarding

2. Assessment must include the function of challenging behaviour. Functional assessment
   is recommended as essential practice by the British Psychological Society (Ball, Bush and
   Emerson, 2004), London and by the Consensus on the Treatment of People with
   Intellectual Disabilities, U.S.A. All behaviours, no matter how bizarre or severe they are,
   communicate some important message, or serve some function for the individual. If the
   function can be identified, the person can learn to communicate that message in a more
   appropriate way. This is the keystone of any behaviour support plan.

3. An assessment of need should be consumer-driven. The assessment should seek to
   establish, in the first instance, a vision of the lifestyle an individual would like to have,
   and the goals needed to achieve it. This is usually achieved through an interview with an
   individual and his or her family and others who may be important sources of support.
   The kinds of questions that should be asked are

                Aspirations – What are your hopes and aspirations, and what can be done to
                help you achieve those?
                Relationships – Who are the important people in your life and what supports
                do you need to strengthen your relationships with them.
                Home – What help do you need with daily personal care, meal preparation,
                road safety, response to emergencies?
                Community – What help do you need for shopping, mobility. What things
                do you like to do in the community and what help do you need to do them?
                Work – What jobs have brought you a sense of energy, participation and
                Health & Safety – What are the indicators of good health? How do you get
                exercise? How safe do you feel?
                Behavioural – How do you get along with others? What kinds of things
                annoy you? What kind of help do you want to do the things you want to do?
                Social – How do you stay in contact with your family? What kinds of new
                things would you like to do with people?
                Choices – What kinds of things do other choose for you? How do you tell
                people when you want to do something new?

4. The major focus of any assessment of need should not be on clinical descriptions, deficits
   or problems but on the supports that are needed to assist an individual to participate in
   community settings, and to experience satisfaction and meaning in his or her life. For
   example, the fact that a person has autism is a clinical description; the fact a person needs
   a low-arousal environment and a visual time-table in order to regulate anxiety is a
   functional description. In other words, instead of being focused on the problem, the
   assessment is solution oriented, and therefore integrated with the provision of solutions.
   Supports are defined as the resources and strategies that promote the health, welfare,
   empowerment, and inclusion of individuals with intellectual disabilities (World Health
   Organisation, 2001). Assessments should automatically lead to the design and
   implementation of individual Behaviour Support Plans.

    Each behaviour support plan has at least four elements:

        •   Environmental accommodation; Dietary adaptations, access to food and drink,
            leisure options, interactions and rapport, noise level, predictability of daily
            events, choice of activity, variety of activity, availability of augmentative
            communication systems and the quality of carer communication are all factors
            which may be incorporated in an overall plan to overcome challenging behaviour.
        •   Functionally equivalent skills teaching ; This focuses on identifying the function
            of behaviour through functional analysis and teaching the person more effective
            and more socially acceptable ways of achieving that function. The most frequent
            example of functionally equivalent skills teaching is functional communication
            training (Bird, Dores, Moniz and Robinson, 1989; Derby, Wacker, Berg, DeRaad
            et al, 1997). In addition to functionally equivalent skills teaching, there is an
            emphasis on teaching the person skills for community participation, recreation or
            coping and tolerance.
        •   Direct interventions; These interventions involve establishing rapid control over
            challenging behaviour using non-aversive strategies such as the removal or
            control of the antecedents to challenging behaviour, the non-contingent delivery
            of reinforcement, or the reward of other behaviours (Jones, 1991).
        •   Reactive strategies ; Horner et al (1990) propose a clear distinction between the
            proactive elements of the behaviour support plan and emergency procedures.
            Many challenging behaviours place the person, or carers, at severe social or
            physical risk. Frequently, the preferred response to dangerous behaviours is not to
            deliver a behavioural intervention designed to change behaviour, but to provide
            sufficient temporary control to prevent injury and to allow the person and others
            to survive with dignity. Punishment is not used.

5. One implication of the consumer-driven or person-centred approach is the move towards
   individualised funding; giving people with intellectual disabilities and their families
   more direct influence over how funds are allocated, as opposed to funding “programmes”
   that are administered by service provider organisations. Direct funding of organisations
    leads to forcing people to fit into existing programmes, whereas giving people vouchers
    could empower people to influence the types and levels of supports provided.

6. People with dual diagnosis represent a very diverse client group, with needs which vary
   greatly from individual to individual and from one time to another. The service response
   needs to be individualised and flexible over time. A typical individually-costed
   continuum of care will include an estimate of per diem costs for:

            •   Residential staff
            •   Day support staff
            •   Intensive support workers for times of crisis
            •   Consultation with a consultant psychiatrist
            •   Consultation with a challenging behaviour specialist
            •   Transport costs
            •   Rental accommodation or social housing costs

        People with dual diagnosis can live with their families or with others for large parts of
        their lives if given the supports they need to do so. Crisis plans need to be established
        on a case by case basis, from a comprehensive range of service options, including;

            •   Availability of additional staff (e.g. intensive support workers) at times of
            •   Acute psychiatric treatment in mainstream psychiatric hospitals for some
                individuals with mild intellectual disability or where challenging behaviour is
                not unduly disruptive.
            •   Small community based respite facilities, adapted for challenging behaviour,
                which receive outreach psychiatric support
            •   High support homes in the community for people with chronic psychiatric
                difficulties and persistent challenging behaviour.

5. Conclusions
Families for people with intellectual disability are in an important position to advocate for
community living for this highly marginalised group, to promote best practice in the field, and
to improve service provision. In particular, knowledge is power. Families will be well
served by knowing the per annum cost of services for their family member each year. In
addition, services should provide professional training course for its staff who work with
people with challenging behaviours. In a frequently very stressful working environment,
carers require high levels of aptitude and expertise. This deserves recognition.

The Department of Health and Children proposes to complete a programme to transfer people
with an intellectual disability currently in psychiatric hospitals to appropriate accommodation
as soon as possible and not later than 2006 (“Quality and Fairness”, 2001). In addition to
this, the Department of Health and needs to work towards an objective of closing our large
residential centres and replacing them with services conducive to ordinary living.

Finally, audit is an essential means of securing the quality of service provision. Where the
person has a challenging behaviour, audit should evaluate the following individual supports:

                •    the comprehensiveness of behavioural assessment.
                •    the quality of the behaviour support plan
                •    the regularity of review of any medication
                •    the quality of the living environment
                •    the opportunity for meaningful and satisfying activity
                  •    the quality of individualised service planning
                  •    the protection of the person in the design, implementation and monitoring of
                      restrictive reactive strategies.
                  •    the protection of the person who is involuntarily detained
                  •    the protection of the person who is involuntarily treated

Allen, D. & Lowe, K. (1995). Providing intensive community support to people with learning
          disabilities and challenging behaviour: a preliminary analysis of outcomes and costs. (1995)
          Journal of intellectual Disability Research 39, 67 -82
Ball, T., Bush, A, & Emerson, E. (2004) Psychological Interventions for Severely Challenging
          Behaviours Shown by People With Learning Disabilities. Leicester: British Psychological
          Society (Downloadable from
Brothers of Charity in Ireland (1999) National Policy Guidelines: Responding to Challenging
          Behaviour National Secretariat, Kilcornan House, Clarinbridge
Department of Health and Children (2001) Quality and: A Health System for You. Health Strategy.
          Government Publications Office
Donnellan, A.M., LaVigna, G.W., Zambito, J. & Thvedt, J. (1985). A time limited intensive
          intervention programme model to support community placement for persons with severe
          behaviour problems. Journal of the Association for Persons with Severe Handicaps 10, 123 –
Emerson, E., Forrest, J. Cambridge, P. & Mansell, J. (1996). Community support teams for people with
          learning disabilities and challenging behaviours: results of a national survey Journal of
          Mental Health 5, 395-406
Emerson, E., Toogood, S., Mansell, J., Barrett, S., Bell, C., Cummings R., and McCool, C. (1987)
          Challenging behaviours and community services: 1. Introduction and overview. Mental
          Handicap 15, 166 - 169
Harris, P. (1993). The nature and extent of aggressive behaviour amongst people with learning
          difficulties (mental handicap) in a single health district. Journal of Intellectual Disability
          Research, 37, 221-242.
Hoefkens, A. and Allen, D. (1990). Evaluation of a special unit for people with mental handicaps and
          challenging behaviour. Journal of Mental Deficiency Research, 34, 213 - 228
Hudson, A., Wilken, P., Jauernig, R., & Radler, G. (1995) Behavioural Treatment of challenging
          Behaviour: A cost benefit analysis of a service delivery model. Behaviour Change, 12, 216 –
Lowe, K. Felce D. and Blackman, D. (1995) People with learning disabilities and challenging
          behaviour: the characteristics of those referred and not referred to specialist teams.
          Psychological Medecine. 25, 595-603
Maguire, K.B., and Piersel, W.C. (1992) Specialised treatment for behaviour problems of
          institutionalised persons with mental retardation. Mental Retardation, 30, 227 – 232
McClean, B. (1995) The nature and extent of challenging behaviour in the Eastern Health Board
          Region. Paper submitted to the Eastern Health Board.
McClean, B., Dench, C., Grey, I., Shanahan, S., Fitzsimons, E., Hendler J. and Corrigan, M. (2005)
          Person Focused Training: A model for delivering positive behavioural supports to people with
          challenging behaviours Journal of Intellectual Disability Research, 48, 300
McClean, B., Grey, I. and McCracken, M. (2005) An evaluation of Positive Behavioural Support for
          people with very severe challenging behaviours in community-based settings. British Journal
          of Learning Disabilities
Newman, I., & Emerson, E. (1991), Specialised treatment units for people with challenging behaviours.
          Mental Handicap, 19, 113-19
Oliver, C., Murphy, G. & Corbett, J.A. (1987). Self-injurious behaviour in people with mental
          handicap: a total population study. Journal of Mental Deficiency Research, 31, 147-162.
Sprague, J.R., Flannery, B., O’Neill, R., & Baker, D.J. (1996) Effective Behavioural Consultation:
          Supporting the Implementation of Positive Behaviour Support Plans for Persons with Severe
          Challenging Behaviours. Eugene, OR: Specialised Training Program
Stancliffe, R.J. Hayden M.F. and Lakin K.C. (1999) Effectiveness of challenging behaviour IHP
          objectives in residential settings: A longitudinal study. Mental Retardation 37, 483 - 493

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