Article 2: HELP with Behaviours that Challenge
The 2018 Canadian consensus guidelines for primary care of adults with intellectual and developmental disabilities offer a structured approach to managing behaviours that challenge people with intellectual and developmental disabilities (IDD). The Developmental Disabilities Primary Care Program of Surrey Place Toronto published a tool called HELP with Behaviours that Challenge (HELP) to help primary care providers and other individuals who support people with IDD implement this approach into practice.
The HELP tool provides a framework that promotes an in-depth exploration of the underlying causes of symptoms and behaviours, even if they appear to meet the criteria for psychiatric disorders. The tool offers a multi-perspective evaluation of situations where those disorders, such as anxiety and depression, may be present. Primary care providers can anticipate and alleviate patient distress with the comprehensive framework, which looks at specific areas in the following order:
H = Health and treatment of identified medical conditions
E = Environment, including triggers that escalate behaviours
L = Lived experiences, including past or present adversity, trauma or attachment issues
P = Psychiatric disorders, wherein psychotropics can be used appropriately
The HELP tool increases the probability of more effective, positive behavioural supports. Additionally, primary care providers can use information gained by using HELP to build more supportive relationships.
All behaviour is communication
“I think one of my main concerns is that people don't have help, and so I think a lot of families [or people living in residential facilitates] struggle on their own, not sure where to go. Because there aren't that many psychiatrists out there, [including those] that feel comfortable seeing people with intellectual and developmental disabilities, a lot of people are kind of just left sort of hanging on a waitlist to see if anyone can help them. I think in a lot of [those] cases, there are things that can be done.” – Ullanda Niel, MD
Behaviours that challenge are any actions by a person that are dangerous or harmful to themselves, others, or the environment. They usually occur when needs are misunderstood, unaccommodated or unmet, such as those related to health and personal experience. Behaviours that challenge frequently happen in adults with IDD.
There are barriers that adults with IDD encounter that can negatively impact their mental health, including expectations beyond the emotional capabilities of a person and experiences with adversity or trauma. Difficulties can lead to anxiety, panic, depression and symptoms of posttraumatic stress disorder.
Too often, behavioural disturbances are explained as “psychiatric” or “behavioural, mainly when people with IDD express them. They may have difficulties articulating their needs or providing the context of their distress. Behaviours that challenge, then, can be a way to communicate that information.
Unfortunately, because this can go unnoticed, there can be a rush to manage behaviours that challenge with medication. Psychotropic medications are the most commonly prescribed medications for this group. Some individuals receive these medications, including antipsychotic medications, without a psychiatric diagnosis and with limited medication monitoring over time.
With this as a reality, caregivers are tasked with interpreting behaviour, body language and nonverbal vocalizations and what they might be communicating. In the absence of direct reports about the patient, this is often the only information that primary care providers have to use and figure out the best way to engage with the patient.
Implementation of HELP tool
With the HELP tool, primary care providers can systematically review the underlying causes of behaviours of concern before determining a psychiatric diagnosis. The tool also prompts primary care providers to understand the patient’s baseline behaviour and mood before evaluating the present expression of behaviour.
The first stage of the HELP framework is the assessment of health (the “H” in the HELP acronym), a complete review of medication, physical examination and other necessary investigations to determine the level of risk behaviours that challenge pose and if a physical health diagnosis or a medication is responsible.
The next stage is an assessment of the patient’s environments and supports (the “E” in the HELP acronym) to determine whether or not they are meeting developmental needs. When reviewing environmental contributors, it can be helpful to get the help of people who focus on these types of supports, including occupational or behaviour therapists. Often, behaviours that challenge can occur because the environment and support do not align with the patient’s needs.
Assessing lived experiences (the “L” in the HELP acronym) is the next stage of the HELP framework. Primary care providers should investigate a patient’s lived experiences and identify everyday stressors and traumatic events, with input from a trained professional with appropriate experience expertise, such as a social worker. Compared with the general population, adults with IDD are more likely to experience trauma, abuse, adversity, and other adverse life experiences than adults without IDD are.
The last stage of the HELP framework is an assessment of a psychiatric diagnosis where it is necessary. The most frequent psychiatric concerns in people with IDD are likely adjustment disorders. Behaviour such as agitation, anxiety, or mood changes is commonly associated with past or current trauma and unresolved environmental issues. A review of health, environments, and lived experiences and appropriate interventions can reduce emotional and behavioural concerns unless these concerns are associated with a psychiatric disorder. Assessing changes from baseline behaviour will help determine if and when a diagnosis-specific intervention is needed.
“Where I work, the resources are scarce, right? So, if I send a referral, [given the circumstances], we might have to wait more than a year or so to see somebody. In the meantime, what’s going on for the family? What is happening with my patient? [The HELP tool] is a good way to organize our thoughts and create a more fulsome assessment of the problem. It can direct the plan, so the plan might initiate treatment or appropriate referrals.” – Ullanda Niel, MD
The HELP tool addresses issues regarding behaviours that challenge, including the importance of a medication review and the involvement of a skilled interprofessional team in assessing underlying causes.
Adults with IDD visit an emergency department more frequently than adults without IDD. Behaviours that challenge can lead to crises and visits to the emergency department. Additionally, they can lead to the prescription of medications and reduce behaviours that challenge short-term. However, it may not help clarify or address the causes of the distress.
HELP organizes information to encourage more communication among primary care providers, specialists, and the other supporting individuals involved in patient care, leading to faster and better decisions and resolutions. This is especially important because while primary care providers follow most adults with IDD, they represent a small part of primary care practices. The complexity of these cases can be overwhelming.
“Recently, a colleague asked me about a case of theirs. And you know, the parents [of the patient] were saying, “I think we need medication because [the patient] is rocking a lot in their wheelchair on Wheel-Trans and they're going to kick us off. So, we have to figure out what to do.” But then I started to talk about going through the HELP algorithm to talk about what other causes could be. What is it that's causing this behaviour? So many ideas started to come out of that. And there's so much that can actually be done. It wasn't just, “OK. I'm just going to give this pill and then problem solved.” – Ullanda Niel, MD
Behaviours that challenge are often how people with IDD communicate that their needs are not being met. It is necessary to better understand and respond to unconventional forms of communication in a collaborative manner that is person-centred and inclusive. The HELP framework is a tool that provides a systematic approach to understanding the contributing factors when emotional distress and behavioural concerns are present. It looks at critical areas of life – health, environment, lived experiences – to manage behaviours that challenge. For primary care providers, it is an opportunity to deepen their understanding of people with IDD and, ultimately, strengthen the patient-doctor relationship.
Mental Health and IDD, information for families, in Family Matters Toolkit, Health Care Access Research and Developmental Disabilities, 2020. [online resource]
Mental Health and IDD, information for direct support workers, in The Nuts and Bolts of Health Care, Health Care Access Research and Developmental Disabilities, 2019. [online resource]
We all need a little HELP, information for self-advocates, developed by Health Care Access Research and Developmental Disabilities, CAMH, Toronto.
A journey with Chris through HELP, information for parents and carers, by Elspeth Bradley and Phoebe Caldwell.