HELP with Behaviours That Challenge

Abstract When individuals with intellectual and developmental dis- abilities engage in behaviours that challenge, their poten- Volume 22, Number 2, 2016 tial for full community participation, integration and qual- ity of life is greatly compromised. Embedded in the acronym HELP (Health, Environment & Supports, Lived Experience, Psychiatric Disorder), this article describes a biopsychosocial Authors multi-perspective understanding of these behaviours. HELP is an approach that can be embraced comfortably by all stakehold- Elspeth Bradley,1 ers (including individuals with intellectual and developmental Marika Korossy2 disabilities and their families), empowers problem solving and has implications for effective intervention. 1 Department of Psychiatry, University of Toronto, Behaviours that challenge (BTC), otherwise known as “chal- Toronto ON lenging behaviours,” (National Collaborating Centre for 2 Surrey Place Centre Mental Health [NCCMH], 2015) are observed in people with (retired), intellectual and developmental disabilities (IDD) (DSM‑5; Toronto ON American Psychiatric Association, 2013). Epidemiological studies estimate that BTC are present in 5–15% of the popu- lation with IDD (NCCMH, 2015) and occur more frequently in those with greater severity of disability (Cooper, Smiley, Allan et al., 2009a; Cooper, Smiley, Jackson et al., 2009b). These behaviours may start early, have a relapsing and remitting course and can challenge services and care provid- ers. As a consequence, individuals engaging in these behav- iours are frequently the recipients of intrusive interventions including the over prescription of psychotropic medication, particularly antipsychotic medication, giving rise to ser- ious side effects, increased medical morbidity and mortal- ity (Alexander, Branford, & Devapriam, 2016; Sheehan et al., 2015). BTC lead to reduced quality of life both for individuals Correspondence so engaged, and their care providers as well as frequently preventing full community integration. [email protected] Some BTC, while being a concern to care providers, are not apparently distressing to the individual (e.g., some repetitive behaviours, hoarding) and do not result in any harm to self, Keywords others or property destruction. These behaviours might more appropriately be referred to as antisocial (i.e., annoying, irri- challenging behaviours, tating and outside of the social norm; Bradley & Korossy, 2015). assessment, Whether to intervene in these antisocial behaviours should be formulation, given careful consideration because intervention may obstruct treatment, a vulnerable individual’s right to self-expression. interprofessional, multiperspective BTC that result in harm to self, others, or destruction of the environment, can best be considered as communications of distress by individuals unable to communicate their distress in more conventional ways. This distress may arise as the consequence of body discomfort (e.g., medical condition), from situations in their environment (e.g., over-stimulating © Ontario Association on Developmental Disabilities Bradley & Korossy 102

surroundings giving rise to hyperarousal and and needs of people with IDD (their “lived meltdowns), from the interaction between per- experience”) and the contribution of unmet sonal, emotional and environmental circum- emotional needs to BTC (Bradley, Hollins, stances (e.g., a task is too difficult or sadness Korossy & Levitas, in press). about loss of a care provider), or it may signal psychiatric disorder. There may be multiple fac- Tools associated with this HELP approach are tors compounding the distress and confound- also available online through the Developmental ing simplistic approaches to these behaviours. Disabilities Primary Care Initiative at Surrey Attempts to treat without appreciating under- Place Centre (2011). A recently published chapter lying cause can escalate the distress and exacer- provides more details, clinical tips and references bate the situation to crisis proportions. to online resources (Bradley & Korossy, 2015) such as a booklet for care providers (Bradley Systematic consideration of the personal and bio- & Caldwell, 2016). The Curriculum of Caring psychosocial complexities that give rise to expres- Agenda (http://machealth.ca/programs/curricu- sions of underlying distress is paramount (Banks lum_of_caring) embraces the HELP approach et al., 2007; Banks, Bush, & Other Contributors, and self-advocates with IDD have given their 2016; Koritsas & Iacono, 2015). A robust diag- voice to HELP through a musical adaption nostic formulation embracing multidimensional (https://vimeo.com/125914430) (Boyd, 2016). circumstances, creates opportunities for collab- orative problem solving, accurate diagnoses and person centred solutions (Holland, 2015; Jahoda, HELP Framework and Approach Willner, Pert, & MacMahon, 2013). for Understanding BTC BTC have historically been referred to as “chal- The HELP framework considers the aetiologies lenging” or “problem” behaviours or “behav- of BTC within four main conceptual themes: iour problems,” the latter sometimes even (1) H ealth; (2) E nvironments, supports and morphing into “behaviour disorders.” All four expectations; (3) L ived experience and emo- descriptors create the impression that these tional well-being; and (4) P sychiatric disorder behaviours are primarily a characteristic of the (Figure 1). In the HELP approach these four areas individual and consequently the focus of inter- are explored in sequential order so that those cir- vention is on trying to change the individual. cumstances most frequently contributing to BTC “BTC” on the other hand implies an interaction are identified and addressed before assuming between the individual and his/her environ- that any unusual or problematic behaviour must ment and begs the question who is challenging be of psychiatric origin. whom (NCCMH, 2015). BTC is favoured by the present authors because (a) these behav- These four themes are considered separately iours arise in the context of an individual with below. Suggestions for clinical practice ( ), and unique needs in an environment that may not clinical vignettes ( ) are inserted at the end be optimally understanding or supportive of of each theme. these needs (Banks et al., 2007; Banks et al., 2016) and (b) evaluations of both the individ- Case vignettes are in Appendix 3. ual, their physical-social environment and sup- ports, are required for effective intervention and successful outcomes. H ealth

This article describes an effective, efficient Medical conditions can give rise to BTC (Goh, 2013) and sequential approach for under- (Appendix 1). In this context, the BTC are sig- standing BTC. The HELP framework described nals, or put another way, communications from here (Figure 1), provides a meaningful, intuitive the individual of physical discomfort or pain and straightforward way to organize assess- they are experiencing (Appendix 2). Individuals ment, formulation and interventions across with IDD vary in their capacity to communicate multiple domains of complexity. Essentially a to others that they are experiencing physical biopsychosocial approach, HELP is unique in discomfort or are in pain (Boardman, Bernal, & paying special attention to the emotional lives Hollins, 2014). Even those who use words may

JODD H.E.L.P. 103 not spontaneously share their suffering with Health – Helpful tips: others unless specifically asked or prompted. However, care providers using effective com- (1) Consider “head to toe” health when munication strategies such as simple language, reviewing physical status (so as to cover all gestures and visuals (e.g., Books Beyond Words: aspects of the body); Bradley & Hollins, 2013), enhance opportunities for individuals with IDD to alert care providers (2) identify the cause (aetiology) of the IDD to their physical suffering; such detection paves (e.g., a syndrome) as different IDD aetiolo- the way for early intervention before pain-relat- gies have increased prevalences of different ed behaviours escalate. For those individuals health issues that need attention throughout with limited or no language, care providers the lifespan (e.g., thyroid and celiac disease need to be attuned to small changes in facial in Down syndrome); expression or other body language that may (3) screen for these syndromes/aetiological signal that something is wrong (Caldwell, 2013; associated medical conditions; Leicestershire Partnership NHS Trust, 2013). Best practice guidelines in IDD recommend rou- (4) identify and document each individual’s tine health screening (e.g., annual health checks) unique response to pain (e.g., such as may (Robertson, Hatton, Emerson, & Baines, 2014), occur when exposed to a circumstance gen- and when BTC arise, review of physical status erally considered to be painful) and docu- and examination (Sullivan et al., 2011). ment in case notes for future reference.

Patient brought to family physician/psychiatrist because of mental distress or behavioural concerns

Individual communicating concerns verbally? Yes Individual vulnerability NO Yes Precipitating Carers expressing concerns? events

NO Yes Maintaining Should there be concerns? (Is anyone at risk?) circumstances NO Yes: H ealth: medical condition? Treat condition

NO Yes: E nvironment: problem with Adjust supports supports or expectations? or expectations

NO

L ived experience: e.g., life events, Yes: trauma, emotional issues? Address issues

NO Yes: P sychiatric disorder? Treat disorder

NO

Figure 1. Understanding behaviours that challenge. A guide to assessment and treatment. Reproduced from Bradley, E. & Korossy, M. (2015). Chapter 5: Behaviour problems. In M. Woodbury-Smith (Ed.), Clinical topics in disorders of intellectual development (pp. 72–112). London, UK: Royal College of Psychiatrists Publications. copyright© Elspeth Bradley, 2014.

volume 22 number 2 Bradley & Korossy 104

Clinical vignettes: Jane and Yvonne “When people hugged me, I stiffened and pulled (see Appendix 3) away to avoid the all-engulfing tidal wave of stimulation. The stiffening up and flinching was like a wild animal pulling away” http://www. E nvironment, Supports .com/advocacy_grandin. Yet Temple and Expectations also describes herself as seeking deep pressure stimulation: “It was an approach-avoid situa- Environment in this framework embraces tion.” As a child she reports she “used to like to family and social networks, as well as physical get under the sofa cushions and have my sister surroundings. Environment even includes the sit on them.” As an older person she developed layout of places where people live, work and a “Squeeze Machine,” a device to provide com- play and how they travel between these places forting pressure to large areas of the body (NCCMH, 2015). Supports and services can be (Grandin & Scariano, 1986, pp. 86-99). Attention broadly described as what is needed to enable to the uniqueness of each person with IDD (per- full participation of all citizens in the com- son-centred approach) and full partnership with munities in which they live (Ontario Ministry that person in decisions that involve them, is of Community and Social Services, 2016). For critical to effective intervention for BTC (Beadle- people with IDD, additional specific accommo- Brown, Hutchinson, & Whelton, 2012; Mansell, dations and adaptations may be needed to pre- Beadle-Brown, & Bigby, 2013). vent secondary disabilities and handicap (World Health Organization, 1980) and to ensure oppor- Individual profile of needs. Individual develop- tunities for full inclusion. mental needs, skills and capacities can be identi- fied through assessment of: cognitive and adapt- Expectations can arise from within the individ- ive skills, emotional needs, attachment patterns, ual or from care providers and systems of sup- self-regulation capacities, communication, sen- port. BTC may arise where there is mismatch sory sensitivities, motor skills and difficulties, between individual capacities, expectations, and observed behaviour. Interprofessional par- interests and preferences, supports available ticipation that may be needed for comprehen- and care provider expectations. BTC arising sive assessment (Daalemen, 2016; Kerr et al., from personal interest and preferences, while 2014) is listed in Appendix 4. Ensuring a good socially unacceptable, may not be distressing match between individual developmental pro- to the individual. On the other hand, mismatch files and accommodations and supports needed, between (a) the individual’s unique develop- will prevent undue mental and emotional stress, mental needs, skills, and capacities (b) sup- mood dysregulation, anxiety and panic; the out- ports and services provided or (c) care provid- side manifestations of these personal negative er understanding and expectations, can result experiences can be BTC. in some of the most severe BTC (e.g., scream- ing loudly, smearing faeces or aggression in response to a difficult request or to too many A functional behavioural assessment, usually people being in close proximity). conducted by a behaviour therapist, aims to determine what the outcome is for the individ- As health workers, we tend to evaluate environ- ual when engaging in BTC – for example, does ments and supports from our own perspectives it result in getting needed attention (“atten- of what we find to be desirable and comfort- tion-seeking”), or some other desirable outcome able. However there are now numerous reports (“tangibles”) or result in being able to exit a from people with IDD and especially from situation that is intolerable for them (“escape”)? those with autism, alerting us to the reality This assessment provides an in vivo evalua- that their sensory and perceptual experiences tion of what is happening in the individual’s may be different and what is attractive to me actual environment during times when BTC may actually be quite “toxic” to another. In are present and can identify triggers to occur- addition, the intensity of pleasure or discom- rences of these behaviours. Identifying triggers fort may, for some, be related to the degree of offers opportunities for targeted interventions. control they have over the circumstance. For Understanding the link between these triggers example, Temple Grandin, an adult with autism (stressors) and individual responses alerts care describes as a child: providers to individual needs that might other-

JODD H.E.L.P. 105 wise be overlooked and if not attended to lead and from clinicians working therapeutically to more serious psychiatric disorder (Bradley, with individuals with disabilities, that men- Hollins, Korossy & Levitas, in press) tal well-being is experienced in the feelings of the body (as well as expressed in words) and Person-centred environments and supports. is impacted profoundly by relationships, per- These can be considered at the Individual, ception of self and empowerment in the out- Program, and Service system levels (Appendix 5) side world, irrespective of cognitive abilities. (Beadle-Brown et al., 2012; Mansell, Beadle- For those with IDD for whom these feelings Brown, Whelton, Beckett, & Hutchinson, 2008; and concerns about day to day circumstances Mansell et al., 2013). Emotional distress arising and relationships have become intolerable, from mismatches between individual needs and psychological therapies, including the range supports available can either be internalized of talking therapies, with appropriate adap- (e.g., anxiety, mood dysregulation, adjustment tations for communication styles, are of bene- problems) or externalized (e.g., BTC). fit (Beail et al., 2016; Campbell, Robertson, & Jahoda, 2014). Through body language such as Environment, supports and expectations – breathing rhythms, motor patterns and non- Helpful tips: word vocalizations, even individuals with no language can be observed to engage in mean- (1) Map out with individual and care providers ingful reciprocal emotional responses to others a detailed “day in the life of” the individual and clearly experience emotional relief when the from waking in the morning to going to bed communicating partner takes the time to learn at night to identify daily patterns, adaptive from them their unique non-verbal body lan- skills and needed supports; guage (Caldwell, 2013; Schuengel, Oosterman, & Sterkenburg, 2009; Sterkenburg, 2008). Validating (2) “Shadow” the individual for a half day painful emotional experiences, whether rooted to experience some aspects of their daily in the present or the past, is a powerful thera- reality, circumstances they encounter and peutic intervention for BTC arising from these their responses to these (invaluable direct distressing experiences (e.g., Eye Movement access to the individual’s physical and social Desensitization Reprocessing (EMDR) treatment support environment and their unique for trauma (Mevissen, Lievegoed, Seubert, & De responses to these). Jongh, 2012); Intensive Interaction (Caldwell, Clinical vignettes: John and Guthrie 2013); and Individual Therapy for Attachment (see Appendix 3) and Behaviour (ITAB) (Porges, 2003; Schuengel et al., 2009; Sterkenburg, 2008).

L ived Experience and Daily stress. Managing stress in optimizing Emotional Well-Being physical and mental well-being has become a most crucial part of 21st century living with Emotional distress may give rise to BTC. Many its rapidity of change and the daily need to individuals with IDD have difficulty express- absorb an exponentially increasing amount ing in words their inner world and emotion- of information. When the body is threatened al experiences; and some may be completely with more than it can handle, it essentially unable to do so. Opportunities to share life’s “crashes” and moves from cognitive and com- daily frustrations, as well as joys in work, rec- munication strategies when solving problems reational and social networks, with chosen into triggering a primal biological survival like-minded peers are not so available in sup- system – the autonomic nervous system (ANS) ported living circumstances. Because of these which offers, and prepares, the body for three communication differences there may be mis- immediate solutions: Fight (aggression), Flight taken assumptions that those with IDD do not (fleeing), Freeze (cessation of movement). These have an emotional life and their feelings and instinctive responses are experienced as emo- concerns are consequently ignored or dismissed tion dysregulation (Dvir, Ford, Hill, & Frazier, (Gilmore & Cuskelly, 2014; Hubert & Hollins, 2014; Raju, Corrigan, Davidson & Johnson, 2012; 2010; Sinason, 1992). However it is clear from Loos & Loos Miller, 2004; Porges, 2003; Porges, self-advocate accounts (MacMahon et al., 2015) 2007). Some BTC (e.g., aggression to self and

volume 22 number 2 Bradley & Korossy 106

others, running, screaming and “noncompli- informed therapies and mindfulness practi- ance”) are also signs of this triggering into ces (Beail et al., 2016; Mallinckrodt, 2000); in ANS activity. The role of everyday stress, from (b) “toxic” environments can be avoided by the perspective of the individual with IDD, attention to unique individual needs such as must be considered in any evaluation of BTC. sensory hypo- and hyper-sensitivities, struc- Successful psychological and behavioural inter- ture and consistency in environments and ventions and supports increase the capacity of skilled staff support; in (c) the impact of pre- the individual to tolerate negative emotions (in dictable psychosocial crises, such as those ASD positive emotions can also be difficult to involving transitions (Levitas & Gilson, 2001) manage) so as not to trigger into these distress- can be minimized or prevented with adequate ing and disruptive states. (See Allen et al., 2015; planning and preparation; in (d) “Nothing Beail et al., 2016; Gore et al., 2013; Matson et al., about us without us” and “Being with rather 2011). than doing to” may be helpful reminders that disability confers a different experience and Vulnerability and lifetime stress. As a group, therefore different perspectives on daily exist- individuals with IDD live much more stressful ence; involving people with IDD in their care lives than their same age peers. They experience and in service development is necessary to greater exposure to negative life events and understand and integrate these perspectives. traumatic experiences (e.g., physical, sexual, Such efforts can be anticipated to reduce BTC. emotional abuse, bullying, stigma, exclusion, hate crimes) (Llewellyn, Vaughan, & Emerson, Lived experience – Helpful tips: 2015). Some IDD aetiologies may confer specific risk for such adversity and traumatic experien- (1) Identify and document chronologically ces (e.g., autism and sensory hypersensitivities). the individual’s birth to old age life event Individuals with IDD are at risk of developing experiences: identify traumas general- insecure attachment patterns and consequent ly known to cause distress (e.g., loss and difficulties in affect regulation. (Schuengel et bereavement, abuse (physical, sexual, emo- al., 2009; Schuengel, de Schipper, Sterkenburg, tional, bullying, neglect), early separation) & Kef, 2013). They are also more vulnerable to as well as those events that may be person- the impact of stress in part because they use ally distressing to the individual with IDD less effective coping strategies. Some mitigating but which may go unrecognized by care circumstances such as confidants and social providers unless specifically looked for (e.g., networks are less available. Social isolation transition transitions and sensory sensitiv- is recognized, as are the need for supports in ities in ASD, humiliation or shame associat- developing friendships, activities and relation- ed with performance, teasing and exclusion) ships (Gilmore & Cuskelly, 2014). Some BTC (e.g., aggression), are associated with these past (2) Identify specific vulnerabilities (e.g., ASD, adversities and poor social supports and may attachment issues) be better understood in terms of post-traumat- (3) Assist individuals develop resilience in ic stress conditions and associated character- response to stress (e.g., opportunities to istic symptoms of re-experiencing, avoidance learn coping strategies; affect management and hyperarousal (Hubert & Hollins, 2010; and de-escalation strategies; access to anger Tomasulo & Razza, 2007). management training, as well as group and individual opportunities to explore emo- Much can be done to promote resilience and tional concerns) reduce exposure to negative life events – at the (a) Individual, (b) Program and (c) Service (4) Consider, as required, staff training in: system levels of support as well as (d) taking Attachment, Trauma, Developmental- care to include perspectives from individuals focused support (e.g., Circle of Security with IDD. For example in (a) individual ther- http://circleofsecurity.net/for-parents/ani- apies successfully employed to enhance affect mations/) (Hoffman, Cooper, & Powell, regulation include counselling, anger manage- 2016); Emotional regulation (Raju et al., 2012); ment, positive behaviour support, cognitive Low approaches (Woodcock & Page, behavioural, dialectical, dynamic and trauma 2010); ASD friendly environments (Bradley

JODD H.E.L.P. 107

& Caldwell, 2013); Intensive Interaction 21.1% of adults with IDD are on antipsychot- (Caldwell, 2013) ic medication in the absence of a psychiatric diagnosis (Lunsky, Klein-Geltink, & Yates, (5) Provide support for staff e.g., self care, 2013). Conclusions from a UK primary care mindfulness practices (Singh et al., 2009). data base of 33,000 adults, six selected second- Case vignette: Jack (see Appendix 3) ary care sites and second opinion Care Quality Commission-appointed doctors, related to 945 reports, provide robust evidence of widespread P sychiatric Disorder inappropriate use of psychotropic medication in people with IDD (Alexander et al., 2016); People with IDD are often referred for psychiat- these findings have resulted in a “Call for ric evaluation because of BTC. Psychiatric mis- Action” to improve this practice (NHS England, diagnosis are made by clinicians unacquainted 2015; Sheehan et al., 2015). with the lives of people with IDD and the many ways in which medical conditions, inappropri- When the above areas of concern (the H, E and ate environments, supports and expectations, L of HELP) are adequately assessed, psychotic and subsequent physical and emotional dis- presentations and aggression are often better tress, can mimic psychiatric disorder (Bradley, understood in terms of mood dysregulation, Hollins Korossy & Levitas, in press). Additional anxiety, adjustment problems in response complexities in understanding BTC arise when to acute and chronic stressors or trauma physical and mental health conditions and (Bilderbeck, Saunders, Price, & Goodwin, 2014; especially those that are cyclical or episodic Bradley et al., in press; Marwaha, Broome, (e.g., mood disorders, allergies, constipation) Bebbington, Kuipers, & Freeman, 2014). With occur together; likewise several psychiatric dis- appropriate intervention for these specific orders can co-exist (e.g., ADHD and mood dis- conditions the apparently “psychotic” symp- order), other developmental disorders may be toms and behaviours resolve (Dossetor, 2007; present (e.g., ASD) and life events may follow O’Dwyer, 2000; Van Schalkwyk, Peluso, a predictable event pattern (e.g., anniversaries, Qayyum, McPartland, & Volkmar, 2015). holidays). Systematic psychiatric evaluation of these potential co-existing circumstances is Hyperarousal (especially in ASD) triggered crucial (Appendix 6). by “toxic” environments can also give rise to aggression – or running and freezing behav- Mood, anxiety, adjustment, trauma and iours as part of the Autonomic Nervous System stressor-­related disorders are under-diag- Fight-Flight-Freeze responses. Attending to this nosed in IDD (Fletcher, Loschen, Stavrakaki, arousal and these toxic environments is usually & First, 2007) and psychotic-like presenta- thera­peutic. tions may be diagnosed as psychotic disor- ders (Emerson & Einfeld, 2011). Aggression Sometimes BTC are truly a manifestation of is a symptom which has different causes in psychiatric disorder or emotional distress so individuals with IDD (Bradley & Hollins, 2010, severe that it has triggered psychiatric illness. Table 18.2; Bradley & Lofchy, 2005, Table 1). Careful evaluation is needed to differentiate Aggression (to self, others or the environment) between behaviours communicating severe is a common reason for Emergency Room vis- mental distress associated with psychiatric its by adults with IDD: in one study aggression disorder, from those underpinned by H, E and represented greater than 40% of presentations, L issues (outlined above), as treatment is dif- followed by suicidal behaviour or ideation at ferent. Several different parallel medical and 26% (Lunsky et al., 2012; Tint & Lunsky, 2015). psychological treatments may be required to At these times antipsychotic medication may target different aetiological circumstances (e.g., be initiated to manage risk in the acute situ- mood disorder requires ongoing treatment ation. Unfortunately in the absence of sub- whereas allergies can be treated as these occur). sequent review as to the underlying cause of these aggressive behaviours this medication is The mental state examination (MSE) is a clinical often continued despite being considered poor interview conducted by psychiatrists to under- practice (Alexander et al., 2016). In Ontario stand presenting problems and diagnose psychi-

volume 22 number 2 Bradley & Korossy 108

atric disorders (Levitas, Hurley & Pary, 2001). and body language is likely to be the only way Patients without cognitive and communicative the psychiatrist is going to gain accurate access disabilities are usually able to share their inner to their current affective status; such access has thoughts, emotions, experiences (“symptoms”) substantial implications not only for diagnostic and observations by the examining psychia- accuracy but also for determining what may be trist (or described by others) of their behaviours contributing to the behaviours of concern (see (“signs”) assist in determining whether these case # 6 Nada). markers meet diagnostic criteria for psychiat- ric disorder(s). Respect, warmth and empathy Psychiatric disorder – Helpful tips: usually enhance the dialogue between clinician and patient, optimize identification of import- (1) Review of Sections H., E., L., and implemen- ant symptoms and signs, and increase psychiat- tation of needed interventions will diminish ric diagnostic accuracy. This standard MSE has BTC unless these behaviours are associated to be adapted to the communicative, cognitive with psychiatric disorder. and emotional capacities of the patient with IDD (Boardman et al., 2014; Bradley & Lofchy, (2) Any remaining BTC can be reviewed: (a) to 2005; Deb, Matthews, Holt, & Bouras, 2001). Such determine if these represent a significant adaptations include careful consideration as to change from baseline (usual) behaviours where the interview is conducted (familiar place and (b) if changes meet criteria for diagnos- or unfamiliar clinic?), the length of the inter- able psychiatric disorder (Appendix 6). view (as needed for patient comfort or according (3) “Management” of BTC (actions taken to to a pre-determined outpatient standard?) and ensure immediate safety of everyone – these who might accompany the patient (who knows may involve sedating medication) is differ- the patient best – e.g., family member, day staff, ent from “treatment” of BTC (actions taken night staff?). It is always worth reflecting how to eliminate or treat the underlying cause). the MSE may be experienced by the individual Treatment with psychotropic medication is with IDD – from their perspective (Ng, Jarvinen, only indicated when psychiatric disorder & Bellugi, 2014) and what their desired outcome has been diagnosed. Medication to manage of this meeting is. For example, questions the BTC should be short term (while underlying individual does not understand and particularly cause and appropriate treatment is being those with embedded meaning (e.g., the “do you sought). hear voices”) may be reminders to them of pain- ful failure experiences at school and they reply (4) Review previous diagnoses – are they still “yes” to avoid exposing a lack of understanding. valid after HELP review? On the other hand the individual may reply (5) Review psychotropic medications (Bradley, “yes” because they want to please the doctor or Behavioural and Mental Health Working they see this as a way to keep engaged with the Group, & Developmental Disabilities empathic clinician who is helping. Primary Care Initiative Co-editors, 2011a), when and why prescribed, by whom, side It could be argued that focusing on the thera- effects, whether and how each medication peutic rapport is the most important compon- has made a difference (if any) to behav- ent of the MSE working with people with IDD; iours for which they were prescribed (target the need for any urgent specific information behaviours) (Alexander et al., 2016). can usually be obtained from a care provider who knows them well. If therapeutic rapport is (6) If medication is being tried for behaviours developed from the outset, there is opportun- rather than for a psychiatric disorder, is ity in later meetings to develop more reliable the medication trial following robust prac- strategies to determine whether crucial symp- tices (Bradley, Behavioural and Mental toms (from a diagnostic perspective) such as Health Working Group, & Developmental voices, are present, as well as a more accurate Disabilities Primary Care Initiative description of the nature of these voices. For Co-editors, 2011b) individuals with severe communication dis- Case vignette: Nada (see Appendix 3) abilities (e.g., IDD and ASD) focusing on emo- tional engagement through non-verbal cues

JODD H.E.L.P. 109 Discussion • HELP provides “the scaffolding” to permit the implementation of medication good prac- The HELP approach with its catchy mnemonic, tice guidelines for adults with IDD (Bhaumik assists in robust evaluation of BTC, provides the et al., 2015). Staff may be understandably basis for a comprehensive diagnostic evaluation fearful of changes in medications prescribed and promotes multi perspective understand- in the past for frightening and dangerous ing, interventions and delivery of targeted behaviours. With a collaborative multi per- treatments. HELP embraces a biopsychosocial spective approach that identifies alternative, and person- centered approach accepted as less intrusive intervention options, frontline good practice in addressing these behaviours staff are likely to be more willing to support (NCCMH, 2015). The approach is unique in reductions in these medications. integrating the lived experience of people with IDD (the “L” of HELP) into the biopsychosocial Systematically addressing, within a collab- perspective. HELP also addresses complexities orative framework, medical, environmental, that arise in BTC (e.g., the same behaviour, even support, emotional and psychiatric issues that in the same person, can have different causes; arise in the lives of people with IDD, will great- in contrast the same cause may give rise to dif- ly improve their quality of life and diminish ferent BTC; added to this the severity of the behaviours of concern. In this context, current behaviour may not reflect the severity of the practices of overuse of harmful psychotrop- underlying cause). Caregivers, such as frontline ic medication to manage BTC should become staff, are often the first to observe emerging unnecessary (Alexander et al., 2016 p. 16). BTC and are in a key position to begin the pro- cess of problem solving surrounding their caus- al basis and their resolution. It is crucial to con- Key Messages From This Article sider every behaviour that challenges, and each episode of occurrence, within a comprehensive People with disabilities. HELP is a way for all framework that is meaningful to all stakehold- of us to understand when your behaviours are ers, including the individual with IDD, and one communicating distress and what can be done which stakeholders can readily implement. to help you feel better.

Other ways in which HELP may be utilized Professionals. HELP provides a biopsycho- with good outcomes include: social, multi perspective understanding of individuals with IDD who are engaging in BTC; • Review of poor response to previous inter- this approach works to promote their health ventions and treatments and well-being.

• Review of previous psychiatric diagno- Policymakers. BTC prevent access by people ses that have responded poorly to evi- with IDD to a range of health-promoting ser- dence-based practice for that disorder: vices available to the general population. HELP – Is the psychiatric diagnosis accurate and flags service system issues that may be con- the poor response to treatment because of tributing to these behaviours and illuminates unaddressed issues in the other domains opportunities for prevention. (the H, E and L)?

– When these other domains are addressed Acknowledgement adequately do the symptoms and behav- We would like to thank Dr. Kerry Boyd for her iours that gave rise to this diagnosis also many helpful suggestions during the prepara- remit? tion of this manuscript. • Medication reviews and management. For example a positive or negative response to a new medication or dose change may be due to other things going on in the person’s life rath- er than attributable to the medication change.

volume 22 number 2 Bradley & Korossy 110

References Beail, N., & Faculties for Intellectual Disabilities of the Royal College of Alexander, R. T., Branford, D. & Devapriam, Psychiatrists and the Division of Clinical J. (2016). Psychotropic drug prescribing for Psychology, British Psychological Society. people with , mental (2016). Psychological therapies and people health problems and/or behaviours that who have intellectual disabilities. Retrieved challenge: Practice guidelines. Faculty Report from http://www.bps.org.uk/system/ FR/ID/09. Retrieved from http://www. files/Public%20files/Policy/psychological_ rcpsych.ac.uk/pdf/FR_ID_09_for_website. therapies_and_people_who_have_id_pdf_ pdf for_review.pdf Allen, D., the Editing Group, & Workshop Bhaumik, S., Branford, D., Barrett, M., & Team. (2015). Positive behaviour support: Gangadharan, S. K. (Eds.). (2015). The A competence framework. Retrieved Frith prescribing guidelines for people with from http://www.skillsforcare.org. intellectual disability (3rd ed.). Chichester, uk/Document-library/Skills/People- West Sussex; Hoboken, NJ: John Wiley & whose-behaviour-challenges/Positive- Sons Inc. Behavioural-Support-Competence- Bilderbeck, A. C., Saunders, K. E., Price, J., Framework.pdf & Goodwin, G. M. (2014). Psychiatric American Psychiatric Association. (2013). assessment of mood instability: Diagnostic and statistical manual of mental Qualitative study of patient experience. disorders: DSM-5 (5th ed.). Arlington, VA: The British Journal of Psychiatry: The Journal American Psychiatric Publishing. of Mental Science, 204, 234–239. Bakken, T. L., & Sageng, H. (2016). Mental Boardman, L., Bernal, J., & Hollins, S. health nursing of adults with intellectual disabilities and mental illness: A review (2014). Communicating with people of empirical studies. Archives of Psychiatric with intellectual disabilities: A guide Nursing, 30, 286–291. for general psychiatrists. Advances in Banks, R., Bush, A., Baker, P., Bradshaw, J., Psychiatric Treatment, 20, 27–36. Carpenter, P., Deb, S., … Xenitidis, K. Boyd, K. (2016). Curriculum of caring. Retrieved (2007). Challenging behaviour: A unified from http://machealth.ca/programs/ approach. CR 144. Retrieved from http:// curriculum_of_caring/ www.rcpsych.ac.uk/files/pdfversion/ Bradley, E., Behavioural and Mental Health cr144.pdf Working Group & Developmental Banks, R., Bush, A., & Other Contributors. Disabilities Primary Care Initiative (2016). Challenging behaviour: A unified Co-editors. (2011a). Auditing psychotropic approach – update: Clinical and service medication therapy. Adapted from guidelines for supporting children, young Sovner and Deb. In Tools for the primary people and adults with intellectual disabilities care of people with developmental disabilities. who are at risk of receiving abusive or Retrieved from http://www.surreyplace. restrictive practices. Faculty Report FR/ on.ca/documents/Primary%20Care/ ID/08. Retrieved from www.rcpsych. BBAuditing%20Psychotropic%20 ac.uk/pdf/FR_ID_08.pdf Medication%20Therapy.pdf Beacroft, M., & Dodd, K. (2011). “I Feel Pain” Bradley, E., Behavioural and Mental Health – audit of communication skills and Working Group & Developmental understanding of pain and health needs Disabilities Primary Care Initiative with people with learning disabilities. Co-editors. (2011b). Psychotropic British Journal of Learning Disabilities, 39, medication issues in adults with 139–147. Beadle-Brown, J., Hutchinson, A., & developmental disabilities (DD). In Whelton, B. (2012). Person-centred active Tools for the primary care of people with support – increasing choice, promoting developmental disabilities. Retrieved from independence and reducing challenging http://www.surreyplace.on.ca/docman- behaviour. Journal of Applied Research in menu-item-required/public-files/ Intellectual Disabilities, 25, 291–307. resource-and-publication/primarycare/ tools-for-primary-care-providers/86- bbpsychotropic-medication-issues

JODD H.E.L.P. 111

Bradley, E., & Bolton, P. (2006). Episodic Bradley, E., & Lofchy, J. (2005). Learning psychiatric disorders in teenagers with disability in the accident and emergency learning disabilities with and without department. Advances in Psychiatric autism. The British Journal of Psychiatry, 189, Treatment, 11, 45-57. Retrieved from http:// 361–366. apt.rcpsych.org/cgi/reprint/11/1/45 Bradley, E., & Caldwell, P. (2013). Mental Caldwell, P. (2013). Intensive Interaction: Using health and autism: Promoting Autism body language to communicate. Journal FaVourable Environments (PAVE). Journal on Developmental Disabilities, 19(1), 33–39. on Developmental Disabilities, 19(1), 8-23. Retrieved from http://www.oadd.org/ Retrieved from http://www.oadd.org/ docs/41015_JoDD_19-1_33-39_Caldwell.pdf docs/41015_JoDD_19-1_8-23_Bradley_and_ Campbell, M., Robertson, A., & Jahoda, A. Caldwell.pdf (2014). Psychological therapies for people Bradley, E., Caldwell, P. & Design: Brett with intellectual disabilities: Comments Housego. (2016). A journey with Chris on a matrix of evidence for interventions through HELP. Retrieved from https://indd. in challenging behaviour. Journal of adobe.com/view/78a157a4-0fe5-4f5e-a838- Intellectual Disability Research, 58, 172–188. 57949948ca64 Cooper, S.-A., Morrison, J., Allan, L. M., Bradley, E., Caldwell, P., & Korossy, M. McConnachie, A., Greenlaw, N., Melville, (2015). “Nothing about us without us”: C. A., … Fenwick, E. (2014). Practice nurse Understanding mental health and mental health checks for adults with intellectual distress in individuals with intellectual disabilities: A cluster-design, randomised and developmental disabilities and autism controlled trial. The Lancet Psychiatry, 1, through their inclusion, participation, 511–521. and unique ways of communicating. Cooper, S.-A., Smiley, E., Allan, L. M., Jackson, Journal of Religion and Society, Supplement A., Finlayson, J., Mantry, D., & Morrison, Series (Suppl. 12), 94-109. Retrieved from J. (2009a). Adults with intellectual https://dspace.creighton.edu/xmlui/ disabilities: Prevalence, incidence and bitstream/handle/10504/65683/2015-32. remission of self-injurious behaviour, pdf?sequence=3 and related factors. Journal of Intellectual Bradley, E., Goody, R., & McMillan, S. (2009). Disability Research, 53, 200–216. A to Z of disciplines that may contribute Cooper, S.-A., Smiley, E., Jackson, A., to the multi- and interdisciplinary work Finlayson, J., Allan, L., Mantry, D., as applied to mood and anxiety disorders. & Morrison, J. (2009b). Adults with In A. Hassiotis, D. A. Barron, & I. P. Hall intellectual disabilities: Prevalence, (Eds.), Intellectual disability psychiatry: A incidence and remission of aggressive practical handbook (pp. 257–263). Chichester, behaviour and related factors. Journal of West Sussex: Wiley-Blackwell. Intellectual Disability Research, 53, 217–232. Bradley, E., & Hollins, S. (2010). Assessment of Daaleman, T. P. (2016). Primary care of adults patients with intellectual disabilities. In D. with intellectual and developmental Goldbloom (Ed.), Psychiatric clinical skills disabilities. Southern Medical Journal, 109, (2nd ed., pp. 257–276). Toronto: The Centre 12–16. Retrieved from http://onlinelibrary. for Addiction and Mental Health. wiley.com/doi/10.1111/epi.12848/epdf Bradley, E., & Hollins, S. (2013). Books beyond Deb, S., Kwok, H., Bertelli, M., Salvador- words: Using pictures to communicate. Carulla, L., Bradley, E., Torr, J., … Journal on Developmental Disabilities, 19(1), Barnhill, J. (2009). International guide to 24–32. prescribing psychotropic medication for Bradley, E., Hollins, S., Korossy, M., & Levitas, the management of problem behaviours A. (in press). Adjustment disorder in in adults with intellectual disabilities. disorders of intellectual development. In World Psychiatry, 8, 181-186. Retrieved from P. R. Casey (Ed.), Adjustment disorder: From http://www.wpanet.org/publications/ controversy to clinical practice. Oxford, UK: journal.shtml Oxford University Press. Deb, S., Matthews, T., Holt, G., & Bouras, N. Bradley, E., & Korossy, M. (2015). Chapter 5: (2001). Practice guidelines for the assessment Behaviour problems. In M. Woodbury- and diagnosis of mental health problems Smith (Ed.), Clinical topics in disorders in adults with intellectual disabilities. The of intellectual development (pp. 72–112). Ironworks, Cheapside, UK: Pavilion Press. London, UK: Royal College of Psychiatrists Retrieved from http://www.slam.nhs.uk/ Publications. media/199170/practiceguidelines.pdf

volume 22 number 2 Bradley & Korossy 112

Developmental Disabilities Primary Care Gore, N. J., McGill, P., Toogood, S., Allen, Initiative. (2011). Tools for the primary care of D., Hughes, J. C., Baker, P., … Denne, L. people with developmental disabilities (1st ed.). (2013). Definition and scope for positive Toronto, ON: MUMS Guideline Clearing behavioural support. International Journal of House. Retrieved from http://www. Positive Behavioural Support, 3(2), 14–23. surreyplace.on.ca/resources-publications/ Grandin, T., & Scariano, M. (1986). Emergence, primary-care/tools-for-primary-care- labeled autistic. Novato, CA: Arena Press. providers/ Hocking, J., Pearson, A., & McNeil, J. (2013). Dossetor, D. R. (2007). “All that glitters is Physiotherapy to improve gross motor not gold”: Misdiagnosis of psychosis in skills in people with intellectual disability: pervasive developmental disorders--A A systematic review. JBI Database of case series. Clinical Child Psychology and Systematic Reviews and Implementation Psychiatry, 12, 537–548. Reports, 11, 94-108. Retrieved from http:// Drummond, C. (2011). ABC (Antecedent- joannabriggslibrary.org/index.php/jbisrir/ Behaviour-Consequence) Chart. Retrieved article/view/1180/1762 from http://www.surreyplace.on.ca/ Hoffman, K., Cooper, G. & Powell, B. (2016). documents/Primary%20Care/BBABC%20 Circle of security international: Early (Antecedent-Behaviour-Consequence)%20 intervention program for parents and children. Chart.pdf Retrieved from http://circleofsecurity.net/ Dvir, Y., Ford, J. D., Hill, M., & Frazier, J. Hoghton, M., & RCGP Learning Disabilities A. (2014). Childhood maltreatment, Group. (2016). A to Z clinical resources – emotional dysregulation, and psychiatric Learning disabilities. Retrieved from http:// comorbidities. Harvard Review of Psychiatry, www.rcgp.org.uk/learningdisabilities/ 22, 149–161. Holland, A. (2015). Chapter 1: Disorders of Elbard, K. (2015). Inside out not outside in – A intellectual development: Historical, change of attitude for all: A self advocate’s conceptual, epidemiological and vision for those with intellectual and nosological overview. In M. Woodbury- developmental disabilities. Journal of Smith (Ed.), Clinical topics in disorders of Religion and Society, 12, 8-12. Retrieved intellectual development (pp. 3–21). London, from https://dspace.creighton.edu/xmlui/ UK: Royal College of Psychiatrists bitstream/handle/10504/65676/2015-25. Publications. pdf?sequence=1 Hollins, S., Bernal, J., Hubert, J., Parkinson, Emerson, E., & Einfeld, S. L. (2011). Challenging P., & Editorial Board Members. (2016). behaviour (3rd ed.). Cambridge, UK: Understanding intellectual disability and Cambridge University Press. health. Retrieved from http://www. Fletcher, R., Loschen, E., Stavrakaki, C., & intellectualdisability.info/ First, M. (Eds.). (2007). DM-ID: Diagnostic Hubert, J., & Hollins, S. (2010). A study of manual – intellectual disability: A textbook of post-institutionalized men with severe diagnosis of mental disorders in persons with intellectual disability. Kingston, NY: NADD intellectual disabilities and challenging Press. behavior. Journal of Policy and Practice in General Medical Council. (2016). Learning Intellectual Disabilities, 7, 189–195. disabilities – Resources: Communication with Jahoda A., Willner P., Pert C., & MacMahon patients. Retrieved from http://www.gmc- K.M.A. (2013). From causes of aggression uk.org/learningdisabilities/333.aspx#503 to interventions: The importance of Gilmore, L., & Cuskelly, M. (2014). context. International Review of Research in Vulnerability to loneliness in people with Developmental Disabilities, 44, 69–104. intellectual disability: An explanatory Kerr, M., Linehan, C., Thompson, R., Mula, M., model. Journal of Policy and Practice in Gil-Nagal, A., Zuberi, S. M., … Glynn, M. Intellectual Disabilities, 11, 192–199. (2014). A White Paper on the medical and Goh, G. (2013). The difference between social needs of people with epilepsy and effectiveness and efficiency explained. intellectual disability: The Task Force on Retrieved from http://www. Intellectual Disabilities and Epilepsy of insightsquared.com/2013/08/effectiveness- vs-efficiency-whats-the-difference/ the International League Against Epilepsy. Epilepsia, 55, 1902–1906.

JODD H.E.L.P. 113

Koritsas, S., & Iacono, T. (2015). Predictors Lunsky, Y., Klein-Geltink, J. E., & Yates, E. A. of challenging behaviour in adults with (Eds.). (2013). Atlas on the primary care of intellectual disability. Advances in Mental adults in Ontario. Toronto, ON: Centre for Health and Intellectual Disabilities, 9, 312–326. Addiction and Mental Health and Institute Leicestershire Partnership NHS Trust. (2013). If for Clinical Evaluative Sciences. Retrieved you listen, you will hear us. Retrieved from from https://www.porticonetwork. http://vimeo.com/49957264 ca/documents/38160/99698/ Levitas, A. S., & Gilson, S. F. (2001). Predictable Atlas+revised+2014/c2d68a41-ed3d-44dc- crises in the lives of people with mental 8a14-7f30e044c17e retardation. Mental Health Aspects of MacMahon, P., Stenfert Kroese, B., Jahoda, A., Developmental Disabilities, 4, 89–100. Stimpson, A., Rose, N., Rose, J., … Willner, Levitas, A. S., Hurley, A. D., & Pary, R. P. (2015). “It’s made all of us bond since (2001). The mental status examination that course…” – a qualitative study of in patients with mental retardation service users’ experiences of a CBT anger and developmental disabilities. management group intervention. Journal of Mental Health Aspects of Developmental Intellectual Disability Research, 59, 342–352. Disabilities, 4, 2-16. Retrieved from Mallinckrodt, B. (2000). Attachment, social h t t p : //m e d i a . w i x . c o m /u g d // competencies, social support, and e11630_0b5aa950b3245661d59afcfb712f67a3. interpersonal process in psychotherapy. pdf Psychotherapy Research, 10, 239–266. Lindsay, P., & Hoghton, M. (2016). Chapter Mansell, J., Beadle-Brown, J., & Bigby, C. 28: Practicalities of care for adults with (2013). Implementation of active support in intellectual and developmental disabilities. Victoria, Australia: An exploratory study. In I. L. Rubin, J. Merrick, D. E. Greydanus Journal of Intellectual and Developmental & D. R. Patel (Eds.), Health care for people Disability, 38, 48–58. with intellectual and developmental disabilities Mansell, J., Beadle-Brown, J., Whelton, B., across the lifespan (Rubin and Crocker Beckett, C., & Hutchinson, A. (2008). Effect 3rd ed., pp. 313–334). New York, NY: of service structure and organization on Springer Publishing Co. staff care practices in small community Llewellyn, G., Vaughan, C., & Emerson, E. homes for people with intellectual (2015). Discrimination and the health of disabilities. Journal of Applied Research in people with intellectual disabilities. In Intellectual Disabilities, 21, 398–413. C. Hatton, & E. Emerson (Eds.), Health Marwaha, S., Broome, M. R., Bebbington, P. E., disparities and intellectual disabilities, Volume Kuipers, E., & Freeman, D. (2014). Mood 48 (International review of research in instability and psychosis: analyses of developmental disabilities) (pp. 43–72). Salt British national survey data. Schizophrenia Lake City, UT: Academic Press Inc. Bulletin, 40, 269–277. Lockley, S. W., Arendt, J., & Skene, D. J. (2007). Matson, J. L., Kozlowski, A. M., Worley, Visual impairment and circadian rhythm J. A., Shoemaker, M. E., Sipes, M., & disorders. Dialogues in Clinical Neuroscience, Horovitz, M. (2011). What is the evidence 9, 301–314. for environmental causes of challenging Loos, H. G., & Loos Miller, I. M. (2004). behaviors in persons with intellectual Shutdown states and stress instability in disabilities and autism. Retrieved from http://www. disorders? Research in Developmental de-poort.be/cgi-bin/Document.pl?id=374 Disabilities, 32, 693–698. Lunsky, Y., Balogh, R., Khodaverdian, A., Mevissen, L., Lievegoed, R., Seubert, A., Elliott, D., Jaskulski, C., & Morris, S. & De Jongh, A. (2012). Treatment of (2012). A comparison of medical and PTSD in people with severe intellectual psychobehavioral emergency department disabilities: A case series. Developmental visits made by adults with intellectual Neurorehabilitation, 15, 223–232. disabilities. Emergency Medicine International, Article ID 427407. Retrieved from http://www.hindawi.com/journals/ e m i/2 0 12/4 2 74 0 7/

volume 22 number 2 Bradley & Korossy 114

Moeschler, J. B., Shevell, M., & Committee on Ontario Ministry of Community and Social Genetics. (2014). Comprehensive evaluation Services. (2016). Services and supports of the child with intellectual disability or for people with a developmental disability. global developmental delays. Pediatrics, Retrieved from http://mcss.gov.on.ca/ 134, e903-918. Retrieved from http:// en/mcss/programs/developmental/ pediatrics.aappublications.org/content/ serviceSupport/index.aspx pediatrics/134/3/e903.full.pdf Porges, S. W. (2003). Social engagement and National Collaborating Centre for Mental attachment: a phylogenetic perspective. Health. (2015). Challenging behaviour Annals of the New York Academy of Sciences, and learning disabilities: Prevention and 1008, 31– 47. interventions for people with learning Porges, S. W. (2007). The polyvagal perspective. Biological Psychology, 74, 116- disabilities whose behaviour challenges. NICE 143. Retrieved from http://www.ncbi.nlm. guideline [NG11] [Full guideline] (Guideline. nih.gov/pmc/articles/PMC1868418/ Leicester and London, UK: The British Ptomey, L. T., & Wittenbrook, W. (2015). Psychological Society and the Royal Position of the Academy of Nutrition and College of Psychiatrists. Retrieved from Dietetics: nutrition services for individuals http://www.nccmh.org.uk/downloads/ with intellectual and developmental NG11/Challenging%20behaviour%20 disabilities and special health care needs. and%20learning%20disabillities%20full%20 Journal of the Academy of Nutrition and guideline%20May%202015%20FINAL.pdf Dietetics, 115, 593–608. National Institute for Health and Care Raju, R., Corrigan, F. M., Davidson, A. J. Excellence – NICE. (2016). Mental W., & Johnson, D. (2012). Assessing and health problems in people with learning managing mild to moderate emotion disabilities: Prevention, assessment and dysregulation. Advances in Psychiatric management – Methods, evidence and Treatment, 18, 82–93. recommendations: Draft guideline. UK: The Regnard, C., Matthews, D., Gibson, L., British Psychological Society and The & Learning Disability and Palliative Royal College of Psychiatrists. Retrieved Care Team at Northgate Hospital in from https://www.nice.org.uk/guidance/ Northumberland, UK. (2008). DisDAT: indevelopment/gid-cgwave0684/ Disability Distress Assessment Tool. documents Retrieved from http://www.disdat.co.uk/ Ng, R., Jarvinen, A., & Bellugi, U. (2014). Robertson, J., Hatton, C., Emerson, E., & Toward a deeper characterization of the Baines, S. (2014). The impact of health social phenotype of Williams syndrome: checks for people with intellectual disabilities: An updated systematic review The association between personality and of evidence. Research in Developmental social drive. Research in Developmental Disabilities, 35, 2450–2462. Disabilities, 35 , 1838-1849. Retrieved from Rose, J. (2011). How do staff psychological http://www.ncbi.nlm.nih.gov/pmc/ factors influence outcomes for people with articles/PMC4053572/ developmental and intellectual disability NHS England. (2015). Urgent action pledged in residential services? Current Opinion in on over-medication of people with learning Psychiatry, 24, 403–407. disabilities. Retrieved from https://www. Schuengel, C., de Schipper, J. C., Sterkenburg, england.nhs.uk/2015/07/urgent-pledge/ P. S., & Kef, S. (2013). Attachment, O’Dwyer, J. M. (2000). Autistic disorder and intellectual disabilities and mental health: schizophrenia: Similarities and differences Research, assessment and intervention. and their coexistence in two cases. Mental Journal of Applied Research in Intellectual Health Aspects of Developmental Disabilities, Disabilities, 26, 34–46. 3, 121–131. Schuengel, C., Oosterman, M., & Sterkenburg, Ogg-Groenendaal, M., Hermans, H., & P. S. (2009). Children with disrupted Claessens, B. (2014). A systematic review attachment histories: Interventions and on the effect of exercise interventions psychophysiological indices of effects. on challenging behavior for people Child and Adolescent Psychiatry and Mental with intellectual disabilities. Research in Health, 3, 26. Retrieved from http:// Developmental Disabilities, 35, 1507–1517. www.ncbi.nlm.nih.gov/pmc/articles/ PMC2749813/pdf/1753-2000-3-26.pdf

JODD H.E.L.P. 115

Sheehan, R., Hassiotis, A., Walters, K., Osborn, Taua, C., Hepworth, J., & Neville, C. (2012). D., Strydom, A., & Horsfall, L. (2015). Nurses’ role in caring for people with Mental illness, challenging behaviour, and a comorbidity of mental illness and psychotropic drug prescribing in people intellectual disability: A literature review. with intellectual disability: UK population International Journal of Mental Health based cohort study. BMJ (Clinical Research Nursing, 21, 163–174. Ed.), 351, h4326. Retrieved from http:// Tint, A., & Lunsky, Y. (2015). Individual, www.bmj.com/content/bmj/351/bmj. social and contextual factors associated h4326.full.pdf with psychiatric care outcomes among Simon, E. W. (2012). Are genetic counselors patients with intellectual disabilities in and the social service system for people the emergency department. Journal of with intellectual disability reaching Intellectual Disability Research, 59, 999–1009. rapprochement? Journal of Genetic Tomasulo, D. J., & Razza, N. J. (2007). Chapter Counseling, 21, 777–783. 21: Posttraumatic stress disorders. In R. Sinason, V. (1992). Mental handicap and the Fletcher, E. Loschen, C. Stavrakaki & M. human condition: New approaches from the First (Eds.), DM-ID: Diagnostic manual – Tavistock. London, UK: Free Association intellectual disability: A textbook of diagnosis Books. of mental disorders in persons with intellectual Singh, N. N., Lancioni, G. E., Winton, A. S. W., disability (pp. 215–224). Kingston, NY: Singh, A. N., Adkins, A. D., & Singh, J. NADD Press. (2009). Mindful staff can reduce the use of University of Washington Seattle. (1993-2016). physical restraints when providing care to Gene Reviews: Medical genetics information individuals with intellectual disabilities. resource (database online). Retrieved from Journal of Applied Research in Intellectual http://www.ncbi.nlm.nih.gov/bookshelf/ Disabilities, 22, 194–202. br.fcgi?book=gene Skotko, B. G., Levine, S. P., & Goldstein, R. van Karnebeek, C. D., Houben, R. F., Lafek, (2011a). Having a brother or sister with M., Giannasi, W., & Stockler, S. (2012). The Down syndrome: Perspectives from treatable intellectual disability APP www. siblings. American Journal of Medical treatable-id.org: A digital tool to enhance Genetics Part A, 155A, 2348–2359. diagnosis & care for rare diseases. Skotko, B. G., Levine, S. P., & Goldstein, R. Orphanet Journal of Rare Diseases, 7, 47. (2011b). Having a son or daughter with Retrieved from http://www.ncbi.nlm.nih. Down syndrome: Perspectives from gov/pmc/articles/PMC3458980/pdf/1750- mothers and fathers. American Journal of 1172-7- 47.pd f Medical Genetics Part A, 155A, 2335–2347. Van Schalkwyk, G. I., Peluso, F., Qayyum, Z., Skotko, B. G., Levine, S. P., & Goldstein, R. McPartland, J. C., & Volkmar, F. R. (2015). (2011c). Self-perceptions from people Varieties of misdiagnosis in ASD: An with Down syndrome. American Journal of illustrative case series. Journal of Autism Medical Genetics Part A, 155A, 2360–2369. and Developmental Disorders, 45, 911–918. Sterkenburg, P. S. (2008). Intervening in stress, Woodcock, L., & Page, A. (2010). Managing attachment and challenging behaviour: family meltdown: The low arousal approach Effects in children with multiple disabilities. and autism. London, UK; Philadelphia, PA: Retrieved from http://dare.ubvu.vu.nl/ Jessica Kingsley Publishers. bitstream/handle/1871/15813/8494. World Health Organization. (1980). pdf?sequence=5 International classification of impairments, Sullivan, W. F., Berg, J. M., Bradley, E., dis­abilities, and handicaps. Retrieved from Cheetham, T., Denton, R., Heng, J., … http://apps.who.int/iris/bitstream/ McMillan, S. (2011). Primary care of adults 10665/41003/1/9241541261_eng.pdf with developmental disabilities: Canadian consensus guidelines. Canadian Family Physician, 57, 541–553, e154–168. Retrieved from http://www.cfp.ca/content/57/5/541. full

volume 22 number 2 Bradley & Korossy 116

APPENDIX 1: Physical and Medical Conditions That May Cause Discomfort or Pain (Appendix 2) and May Be the Cause of, or Associated with, BTC Consider discomfort/pain related to: • Musculoskeletal (e.g., related to physical condition such as cerebral palsy, spasticity, • Occasional common ailments (e.g., cough, arthritis, fractures, myalgias, osteoporosis, colds, flu, headaches) degenerative disc disease) • Allergies (e.g., rash, itch) • Neurological (e.g., epilepsy; headaches); acquired brain injury; • Sensory discomforts (e.g., new clothes, shoes) • Dermatology (e.g., rashes, abrasions, infec- • Otitis (ear infections); hearing impairment; tions, burns) sound hypersensitivity • Sleep problems (e.g., sleep apnea) • Visual problems (e.g., cataracts, light sensi- tivity) • Medication side effects, changes in medica- tion • Mouth and teeth (e.g., cavity, abscess, gum disease, teeth grinding; drooling; swal- • Medical conditions associated with genetic lowing problems) syndromes (e.g., seizures and tuberous scler- osis) • Gastrointestinal (e.g., dysphagia; GERD; H. pylori-related dyspepsia; gallstones; lower GI • Syndrome-related BTC (e.g., self-injurious problems (Crohn’s disease, ulcerative colitis, behaviours in Cornelia de Lange or Lesch- irritable bowel syndrome); constipation and Nyhan syndromes) hemorrhoids • Respiratory (e.g., pneumonia, asthma, aspir- • Menstrual cycle phases – dysmenorrhea/ ation) premenstrual syndrome; peri-menopause/ • Cardiovascular (e.g., congenital heart condi- menopause (may start earlier) tion, vascular disease) • Urinary tract infections; urinary incontin- • Infectious (e.g., Tuberculosis (TB), Lyme dis- ence ease, scabies, pin worms) • Endocrine and autoimmune conditions (e.g., • Other (e.g., check family history for medical diabetes, thyroid) conditions and screen for these conditions)

APPENDIX 2: Pain and BTC Pain may not be recognized if it presents atyp- 2011), that mistaken staff beliefs may be influen- ically and is manifested as BTC; in people with cing care of residents who experience pain and IDD both verbal and non-verbal (gestures or that use of structured communication aids and body language) expression of pain may be com- additional training may be helpful (Beacroft & promised. Despite formidable difficulties in Dodd, 2011; Rose, 2011). Tools such as DisDat can assessing pain in some people with IDD, there guide care providers to systematically explore is no evidence that they suffer any less from a the possible cause of distress or pain (Regnard, noxious experience; proposed “elevated thresh- Matthews, Gibson, & Learning Disability and olds” may be an artifact of extreme motor Palliative Care Team at Northgate Hospital in impairment (e.g., Rett syndrome). Pain may be Northumberland, UK, 2008) a setting event for BTC resulting in greater fre- quency and intensity (Bradley & Korossy, 2015). There is evidence that pain may not be effect- ively recognized or managed (Beacroft & Dodd,

JODD H.E.L.P. 117

APPENDIX 3: Case Vignettes Under Corresponding HELP Sections

H ealth John to encourage him to wear noise muting headphones; if these work for him he may be able to remain in the room with peers, despite Jane: During adolescence, following a very stressful time transitioning from middle to high the noise they are making. school, Jane started to engage in sudden episodes of frenzied agitation, hyperactivity and scream- Guthrie: 39 years. old, has mild ID and lives in ing, accompanied by pinching herself causing a group home. He can engage in a two way con- bruising. These behaviours were recognized as versation and describe his daily activities. He occasions of heightened intense anxiety trig- quickly gets anxious with certain events (e.g., gered by too many people talking and too much disappointment that a prearranged meeting activity going on around her. Systematically does not take place). Guthrie, who has fragile X monitoring these behaviours, it was observed syndrome, is of above average height and build. that Jane would trigger more easily when both- When upset, he appears frightening to those who ered by her seasonal allergies, monthly menses do not know him. He has been picked up by the and occasions of constipation. Providing more police on several occasions after being reported proactive management of each of these medical as displaying disruptive behaviour (shouting, conditions diminished these episodes. threatening movements with sticks) in public places (e.g., after a friend did not show up). Yvonne: A 30-year-old woman, registered blind with presymbolic language skills (no speech) Guthrie was assessed by the Multi-Discipline engaged in serve head banging causing bruising Team (MDT). Guthrie and care providers, work- and discolouration around her eyes. Thinking ing with the MDT Behaviour Therapist identi- this cyclic behaviour might reflect mood disor- fied situations that caused him anxiety (fragile X der, her sleep wake hours were monitored over syndrome is associated with anxiety). Changes several months. Her sleep pattern was found in Guthrie as he escalated to full anxiety were to follow a phase shift pattern so that every identified. Staff taught him how to recognize 8 –10 weeks Yvonne would switch from sleeping these changes and agreed upon support strat- mostly at night to sleeping mostly during the egies at each stage of his escalating behaviour day. However in keeping with her group home (e.g., redirection, find a quiet place, count to ten). routine she would be encouraged to get up dur- As staff became familiar with these behaviours ing the day even when her inclination was to and strategies, Guthrie learned to recognize his sleep; it was at these times the self-injury would own feelings at these times and, with support, occur. Melatonin was prescribed to regulate her was soon able to initiate appropriate action (e.g., sleep wake cycle and her self-injury stopped. remove himself, rehearsed anxiety management Yvonne’s visual impairment had prevented light strategies, relaxation exercises). Psychological activating those parts of the brain that regulate and communication assessments indicated that sleep (e.g., hypothalamus and pineal gland) Guthrie’s strengths were in non-verbal under- (Lockley, Arendt, & Skene, 2007). standing (e.g., visual) compared to verbal, even though he appeared to use words with great panache. Care providers were helped to recog- E nvironment, Supports nize that in supporting Guthrie they needed to and Expectations provide visual cues and check out his under- standing in a sensitive way, even though he would insist he understood. A trial of beta block- John: An adult with presymbolic communi- ers was prescribed to reduce his sympathetic cation skills is observed to head bang when (autonomic nervous system) drive and feelings people become too noisy. When this occurs, of anxiety. Guthrie provided feedback through care providers are reminded of John’s autism, the use of visuals and staff monitoring target associated noise hypersensitivity and the behaviours, to determine whether this medica- necessity to ensure that others do not become tion reduced his reactivity to environmental trig- too noisy or if this is not possible, assist John in gers. The team supporting Guthrie liaised with removing himself. They are also working with the local community police unit to share ways to

volume 22 number 2 Bradley & Korossy 118

support Guthrie should he get into difficulties in autism needs – clear expectations, consistency, the community. Ongoing staff training, especial- quieter work space. ly when there were staff changes, was crucial to the maintenance of this support for Guthrie. As with so many people with IDD what appears to be maladaptive and BTC are in fact their best attempts to manage with the resour- L ived Experience and ces they have available to them to deal with a Emotional Well-Being present that has triggered unresolved issues from the past. Careful attention to the specif- Jack: A 32 year old gentleman with autism ics of how individuals attempt to manage such spectrum disorder and moderate IDD, reported past triggered distress may be key to assisting hearing voices to his case worker. When seen in then with more adaptive strategies (e.g., Jack the ER he described hearing voices on and off already had a repertoire of favourite cartoons over a long time. These voices he reported told and responded to staff working with him to him to hurt himself or others and although he select characters from these favourite movies to had not acted upon this he was very concerned support better affect regulation). “I keep telling them to stop … and they fol- low me outside.” As he spoke about his voices he became tearful, distressed and fearful, but P sychiatric Disorder denied they were currently present. He said the voices only occurred when at his work. He Nada: Care providers expressed concerns that reported they started there several years previ- Nada, a 54 year old adult with Down syndrome, ously after witnessing an altercation between had in recent months become more withdrawn. two workers. Work was described as being Usually a very talkative social person she was stressful for Jack and staff said he would make now saying little and no longer initiated any up stories involving strange people and per- social interactions. She was having difficulties sisted in getting 1-1 staff attention. As a child understanding verbal directions and show- Jack had witnessed violence between his par- ing less interest in usual activities. Care pro- ents, his father left and Jack was currently living viders wondered if Nada was depressed; they with his mother and brother. On one occasion also endorsed some items on a brief demen- when Jack was describing his voices he sudden- tia screen. A visiting therapist observed Nada ly interrupted with a memory of his brother sitting alone at the lunch table (her peers had collapsing in a restaurant. Jack started to relive finished and left); she showed no response distress that he was not allowed to go with his to peer or staff approaches and did not reply brother in the ambulance to the hospital. to their questions or requests. At times she made episodic repetitive deep inhalations and Following medical, psychological, occupational with subsequent exhalations made a sighing therapy and psychiatric assessments it became sound. The therapist engaged with Nada’s clear that Jack’s voices occurred when he was noisy breathing in and out patterns using an anxious and particularly when his anxiety was Intensive Interaction approach (Caldwell, 2013). evoked by witnessing and hearing altercations Within a few seconds Nada was looking direct- between people around him and being con- ly at the therapist and engaging with her “in a fused as to whether he was the reason for their conversation” of loud inhalations breaths and altercation. Essentially triggers in the present exhalation sighs. Within a few minutes Nada took him back to feelings he experienced as a and the therapist had extended the conversa- child growing up in his family. The people he tion to involve their fingers, palms and arms. was speaking about to staff while at work, were Nada began to initiate different movements identified as TV personalities and cartoon char- and the therapist followed in the conversation. acters he had focused on to help him manage She smiled and laughed out loud; she was emo- escalating anxiety in the work place especially tionally engaged with the therapist. Through when he was unable to garner the 1-1 support this exchange the therapist determined that he desperately needed at these times. Jack was Nada was not demonstrating depressed mood. referred for trauma therapy and has responded She was showing capacity to both initiate and well to affect regulation support with an sustain a conversation – a conversation in body EMDR-trained therapist and changes to his language rather than using words. work environment to better accommodate his

JODD H.E.L.P. 119

It was subsequently found that Nada’s hearing therapist bypassed the need to use words and aids had been wrongly reassembled after her instead engaged with Nada in a body language last checkup (which coincided with the chan- conversation which Nada very much enjoyed ges in her behaviour); as a result Nada was not and in which she fully participated. able to make out verbal communication. The

APPENDIX 4: Examples of Interprofessional Participation Important for Assessment of BTC (Lindsay & Hoghton, 2016; Bradley, Goody, & McMillan, 2009)

• Audiology • Nursing • Behaviour therapy • Occupational therapy • Communication speech-language therapy • Other therapies – for example, music, drama, movement and dance, dietetics, counselling, • Medical pets - Family medicine • Pharmacology - Clinical genetics • Physiotherapy - Pediatrics • Psychology - Neurology – Psychiatry • Service coordination and social work

APPENDIX 5: Elements of (a) Individual (b) Program (c) Service System Level Supports (d) Embracing the Perspectives of Clients, Families and Other Stakeholders (a) Individual needs include attention to: • Psychological supports (Beail & Faculties for Intellectual Disabilities of the Royal • The crucial role of communication. College of Psychiatrists and the Division of Finding ways that individuals, despite Clinical Psychology, British Psychological severity of disability, can communi- Society, 2016) cate their needs whether through words or non-verbal means (Boardman et al., • “Do no harm” approach to pharmaco- 2014) as well as feel emotionally connect- logical interventions ed, even in the absence of words (e.g., (b) Program supports include awareness and meaningful conversations with care pro- understanding of: viders using body language [Caldwell, 2013]). The General Medical Council, UK • The importance of staff training about (General Medical Council, 2016) provides IDD, communication, disability-friend- guidance on communicating with patients ly environments and crises prevention with IDD (includes videos on BTC) (Bradley & Caldwell, 2013) • Physical environment e.g., appropri- • The impact of positive and negative atti- ate adaptations for hearing, visual and tudes and emotions on client (and care motor impairments, attention to sensory provider) wellbeing hyper- and hypo-sensitivities, autism • Emerging practices (e.g., staff training friendly; availability of a Snoezelen room; in positive behaviour and low arousal regular opportunities for exercise (Ogg- approaches, acceptance based interven- Groenendaal, Hermans, & Claessens, tions, mindfulness practices) 2014) and physical activities • The difference between management of • Individualized programming with con- BTC and treatment of underlying causes sistency of approach and coordination of these BTC (see also page 108) across environments (Banks et al., 2016)

volume 22 number 2 Bradley & Korossy 120

(c) Service system considerations: (d) Perspectives of clients, families and other stakeholders • Many BTC can be prevented by a HELP approach with access to appropriate • Inside-out and Outside-in perspectives services for necessary assessments and (Bradley, Caldwell, & Korossy, 2015; interventions. BTC are more prevalent Elbard, 2015) in services that are crises reactive i.e., no • Perspectives from individuals with preventive planning and little access to Down syndrome, their siblings and par- specialized supports. ents (Skotko, Levine, & Goldstein, 2011a; • Advocacy for the appropriate service(s) is 2011b; 2011c). an effective intervention for BTC • Curriculum of Caring (Boyd, 2015) • Implementing the appropriate service(s) “Voices of experience”: Video clips of and addressing unmet needs, is effective individuals with IDD, caregivers and treatment with good outcomes health staff sharing their perspectives and wisdom. • BTC may be a flag for service system failures. Identifying the latter offers opportunity to avoid inappropriate pre- scription of psychotropic medication in response to these behaviours

APPENDIX 6: Determining Whether There is an Episode of Psychiatric Illness and Diagnosing Psychiatric Disorder (1) Seek information from a care provider who (6) If there has been an episode of illness can knows the individual well currently and has this be subtyped? – (i.e., do the symptoms known them in the past before the present and behaviours meet criteria for a DSM or behaviour concerns ICD mental health disorder?) (2) Elicit details about BTC such as when, Note: Even though it may not be possible where, frequency, antecedents, behaviours, to subtype the episode of illness (because consequences (Drummond, 2011). of difficulty in getting an account of the patient’s experience), this does not negate (3) Identify when the individual’s behaviour the presence of significant psychiatric dis- was last at their best – i.e., before the onset turbance (episode of illness) which has to be of behaviour concerns; find an “anchor” addressed time (e.g., birthday, public holiday) (7) Can an event be identified that may have (4) Explore their daily pattern, skills and triggered this episode of illness (e.g., loss, behaviours before this anchor time. Inquiry transition)? about the individual’s daily life from getting up in the morning to going to bed at night (8) Are there other non-episodic symptoms and will elicit important information about each behaviours that meet DSM or ICD criteria individual’s unique baseline against which (non-episodic disorder)? Identifying such to measure any change “background” disorders is important to cor- rectly interpret the origin of current behav- (5) Compare symptoms and behaviours before iours (e.g., is concern about hyperactivity concerns (4 above) with current concerns due to an increase in ADHD [background (2 above) and determine whether there has disorder] or due to an episode of mania been a significant change (e.g., lasting at least [episodic disorder]). one week, such as: loss of interest in play or work; self-care; social engagement, initiative, (9) Several episodic and non-episodic psychiat- need for change in supervision or place- ric disorders may also co-exist. Determine ment) (Bradley & Bolton, 2006). A significant which psychiatric disorders, if any, need to change represents “an episode of illness.” be the focus of immediate attention.

JODD