HELP for behaviours that challenge in adults with intellectual and developmental disabilities

What are BTC?

Behaviours that challenge are any actions by individuals that are harmful or dangerous to themselves, others, or the environment, or that limit opportunities for inclusion, participation, and integration in their local communities. Some individuals with IDD, up to one-third of whom might have coexisting autism, might not have verbal or conventional nonverbal ways to express day-to-day needs, difficulties, or feelings such as happiness or distress. Instead, caregivers are left to make inferences from nonverbal vocalizations, body language, and any unusual behaviour as to what these might be communicating. Are these BTC, for example, an expression of pain, a desire for a preferred activity, avoidance of a noisy environment, or resulting from stressful life events? In people with autism, sensory hypersensitivities and hyposensitivities are extremely common and can trigger BTC; these sensory sensitivities often go unrecognized and should be routinely explored for in adults with IDD and autism, presenting with BTC.

It should be noted that the original term BTC was “behaviours that challenge services,” thus referencing the co-constructed nature of this problem behaviour. In other words, BTC occur when the health, developmental, and personal needs of the individual with IDD might not be fully understood, where necessary supports are not available, where expectations might be inappropriate, and where needed environmental accommodations are not made. It follows that an assessment of both the individual and the environment is necessary in understanding what might be contributing to BTC. In the absence of direct reports from the patient, the primary care provider is reliant on observations of family and of paid caregivers and on finding other ways to engage with the patient (eg, using visuals, gestures, and body language). Understanding the communication skills of the patient, whether presymbolic, symbolic, or verbal,¹⁰ will enhance direct doctor-patient interaction. Establishing with caregivers robust data collection, along with visually presented and timely summaries, will enhance patient assessment as well as provide indirect information about the patient’s supports.

What is it about BTC that challenge the health care provider?

Interprofessional teams with skill sets that meet the needs of this population are highly beneficial but are not available to many primary care providers. The evaluation of BTC in adults with IDD requires primary care providers to adapt their practices. Engaging both the individual and their families and caregivers takes much longer than a usual doctor-patient appointment, with assessments often requiring longer appointment times and multiple visits. Supporting caregivers in their observations of patient behaviour and collection of data often requires encouragement, perseverance, and commitment to repeated assessments using the HELP (Health, Environment, Lived experience, and Psychiatric conditions) tool.

What is the primary care approach to BTC?

In keeping with the 2018 Canadian consensus guideline for adults with IDD, BTC are best assessed within the Patient’s Medical Home model.¹¹ This is a central hub where patients and their families feel most comfortable—a place where they feel listened to and respected as active participants in both decision making and the provision of their ongoing care.¹² The ideal Patient’s Medical Home for adults with IDD is an interprofessional clinic that includes expertise in medicine, occupational therapy (OT), behaviour analysis (BA), speech-language therapy, and nursing. As many physicians practise outside this model, consideration should be given to how available staff such as nurses, physician assistants, or social workers can support assessments. In this setting, the HELP framework guides the assessment (Figure 1).¹³

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Figure 1.

Diagnostic framework for behaviours that challenge

Reproduced from Bradley and Korossy.¹³ Copyright Elspeth Bradley, 2016.

Assessment of health.

The first step is a risk assessment¹⁴ to determine if the patient’s behaviour poses harm to the patient or others so as to determine urgency and where best to conduct the assessment (Table 1).^13–21 Next, determine if a physical health diagnosis or side effect of a medication is responsible. A complete history of the presenting behaviour taken with the patient and caregiver, using appropriate engagement and communication strategies,¹⁰ should include characteristics of the behaviour, such as frequency, intensity or disruption, duration, location, and description of usual pain behaviour. Then, complete a medication review, including recent changes and side effects, and a review of body systems, including changes in sleep, appetite, and physical and social activity. This is followed by a physical examination focusing on the more common causes of BTC in this population (Figure 2).¹³ Syndrome-specific Health Watch Tables are recommended (eg, autism and fragile X syndrome [Table 1]).^18,19

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Figure 2.

Health conditions causing behaviours that challenge

Adapted from Bradley and Korossy.¹³

Provide caregivers with tools such as stool, menses, and sleep charts to gather information on health and behaviour (Table 1).²¹ Having this information at a glance allows the physician to rule out these common causes of BTC. An Antecedent-Behaviour-Consequence (ABC) chart can also be used (Table 1).¹⁵

Assessment of environment and supports.

Behaviours that challenge sometimes occur because environments do not meet the developmental needs of the adult with IDD. Caregiver and environmental supports can be insufficient or overly restrictive for the person’s needs. It is important to facilitate “enabling environments” to meet unique developmental needs; often, doing so can diminish or eliminate BTC (Figure 3).^17,22 Creating an enabling environment can best be done using the expertise of specialists in OT and BA to review the context of the BTC and conduct a comprehensive functional assessment, and a speech-language pathologist to assess and improve functional communication. Ensure access to available provincial or territorial and federal funding sources, as well as resources and community supports.

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Figure 3.

Assessment of environments and supports

Adapted from Bradley and the Behavioural and Mental Health Working Group of the Developmental Disabilities Primary Care Initiative.¹⁷

Lived experience, life events, and emotional distress.

Adults with IDD are more likely to experience adversity, abuse, trauma, and negative life experiences than adults without IDD are.²³ There is good evidence that those who experience abuse show consistent patterns in the nature and timing of BTC.²⁴ Their disability might have contributed to attachment issues resulting in difficulty with self-regulation, a low threshold of tolerance, and unpredictable emotional responses. Because of their disabilities, they have more challenges in daily living and independence, which results in increased anxiety and emotional distress. All these factors have a negative effect on mental health and can lead to the development of anxiety, panic, depressed mood, and symptoms of posttraumatic stress disorder with or without psychotic features (eg, hearing voices and dissociating or reliving the experience). It is essential to screen for these negative life experiences and abuse, both past and present, as well as to be alert to missed developmental milestones that can trigger BTC.¹⁷ Throughout this assessment, a trauma-informed approach to care is necessary.

Psychiatric disorders.

Once physical health, environment issues, and life events have been assessed and treatment initiated, consider a psychiatric diagnosis. However, it is important to remember that apparent hallucinations or delusions, rather than being pathological, might reflect developmentally appropriate behaviour, like imaginary friends or self-talk, or might be associated with past trauma. Owing to the high rate of comorbidity in IDD, individuals with IDD should be screened for autism (see the Health Watch Table for autism¹⁸). Relevant to Ella’s case, 30% of people with fragile X syndrome have autism (see the Health Watch Table for fragile X syndrome¹⁹). The most frequent psychiatric concerns in people with IDD presenting with agitation, anxiety, or changes in mood, however, are likely adjustment disorders. They are commonly associated with transitions, unresolved issues in the environment, and past or current trauma.²⁵ In general, psychotic disorders tend to be overdiagnosed and mood and anxiety disorders underdiagnosed. The HELP framework is also relevant for evaluating behavioural changes in those individuals with a genetic syndrome known to be associated with a specific behavioural phenotype. In Ella’s case, fragile X syndrome is associated with aggressive behaviour, mood instability, and anxiety in adulthood. It would be important to know Ella’s baseline behaviour and mood before the present exacerbation (see the guide to understanding behavioural problems and emotional concerns, page 75).¹⁷

Use of antipsychotics: In most cases, do not prescribe antipsychotic medication for BTC without a firm diagnosis of psychosis, preferably by a psychiatrist experienced in treating people with IDD. An exception can be made for individuals in a behavioural crisis. While evaluation to identify the underlying cause or causes of the BTC continues, such medications can be prescribed for interim management; however, they should be reassessed within 72 hours. If there is evidence that the BTC are underpinned by a psychiatric disorder, then a trial of diagnosis-specific medication targeting the key symptom cluster (eg, anxiety, mood) might be indicated. Identify clear target behaviour and symptoms, and review with the patient and caregiver on a regular basis.^26,27 It is important to “start low and go slow” and watch for paradoxical responses, which are more common in adults with IDD.²⁸ At a minimum, psychotropic medication review should occur at 3-month intervals using the appropriate tool (Table 1).¹⁶ Success of a medication trial is associated with several factors including confidence in the medication and patient and care provider confidence in the doctor.²⁹

Ongoing HELP diagnostic review is repeated as necessary to identify and address causes of BTC (Figure 1).¹³