A&E is generally a strange and unfamiliar environment for anyone. For persons with intellectual disabilities, the experience may be particularly scary because they may not understand what is happening around them.

Prepared by Elspeth Bradley and the Psychiatry Residency Year 1 (PGY1) Intellectual Disabilities Psychiatry Curriculum Planning Committee, University of Toronto. Committee members: Lillian Burke, Caroll Drummond, Marika Korossy, Yona Lunsky and Susan Morris. (Canada)

1. Assessment

1.1 Optimizing the clinical encounter

You should be aware of the following:

Persons with intellectual disabilities vary greatly in their ability to understand and communicate their needs, discomforts and concerns. You will therefore need to adapt your approach to each patient's level of functioning and understanding.

If the patient is behaving disruptively, begin by meeting briefly with the caregivers to inquire about the individual's level of functioning and to get advice about how best to meet and interact with the individual. Find out about any circumstances that might be specifically upsetting for that individual (e.g., being asked too many questions; being in a noisy/busy environment; someone moving too close to them; seeing reflecting surfaces, such as eyeglasses).

Many individuals may be unable to communicate verbally but will be aware of non-verbal behaviours in others and are often sensitized to negative attitudes others have toward them. Some individuals depend on others to help modulate their emotions and will quickly pick up fear and anxiety in you. A warm, accepting, calm and reassuring attitude will help the patient feel more relaxed.

A&E is generally a strange and unfamiliar environment for anyone. For persons with intellectual disabilities, the experience may be particularly scary because they may not understand what is happening around them. Getting to A&E may also have been traumatic, both for the patient and his or her family. Waiting can be anxiety-provoking and contribute to behavioural disturbances. Take a moment to explain to the patient and his or her caregivers the reason for the wait. If the wait is longer than you expected, check in from time to time to reassure the patient. This will contribute to a more effective interview.

Always check to see if this is the patient's first visit to A&E and whether there is previous information on him or her. If the patient has been to A&E before, find out what worked and what did not work.

Find out if a proactive crisis plan has already been set up by caregivers in the community and whether caregivers have brought a letter from the patient's physician outlining this plan.

Remember that appearances may be deceptive. Individuals with intellectual disabilities may appear to be hearing impaired or mute when this in fact is not the case. Overheard comments about them may exacerbate the presenting problems.

Assessing a patient with an intellectual disability takes time. Research indicates that the process may take four times longer than the time required for someone without such a disability.

Practical tips on conducting the interview:

  • Try to make the individual as comfortable as possible.

  • Familiarity helps. Suggest that someone familiar to the patient (e.g., caregiver) remains present.
  • Use suggestions previously identified by the caregiver to help the patient be more at ease.
  • Encourage use of "comforters" (e.g., Does the individual have a favourite item he or she likes to carry or does the patient like to engage in self-soothing, such as rocking or standing?).
  • Try to find a quiet spot, without interruptions.
  • Try to establish a positive relationship with the patient:
  • Find ways to communicate effectively:
    - Use simple words.
    - Speak slowly.
    - Do not shout.
    - Pause. Do not overload the individual with words.
    - Be sensitive to the individual's non-verbal cues and adjust your behaviour accordingly. For example, if the patient shows fear in response to your approach, consider what might be contributing to this fear (e.g., reflection from your eyeglasses, white coat, stethoscope) before approaching further. Modify your approach as required (e.g., take off white coat, enlist the participation of familiar caregiver).
    - Use visuals (e.g., drawings).
    - Use gestures.
Remember that persons with intellectual disabilities have a variable and limited ability to interpret their own internal cues and may not be able to give you an accurate picture of their internal state. Involving caregivers who know the individual well may help you to better understand his or her subjective experiences.

1.2 Biopsychosocial understanding

The psychiatric assessment of the individual with an intellectual disability involves systematically applying a biopsychosocial approach. Expect the presenting problems to have multiple and complex etiological and contributing factors. Be systematic in
taking a history. Be sure to assess the influence of causes other than psychiatric disorder for the referral concerns.

The overall goal is to understand contributions from:

1. medical disorders (e.g., constipation, toothache, earache, reflux esophagitis, bone fractures, urinary tract infection, other sources of pain or bodily discomfort)

2. problems in expectations and support as individuals with intellectual disabilities are much more dependent on external structures. Emotional problems often arise when expectations and supports change (e.g., recent move; change in staff: staff turnover can be very high in some group homes; change in daily life schedule, such as start of school/work; change in work activities) or are inappropriate (e.g., unrealistic expectations about completing tasks or travelling independently).

3. emotional upsets (e.g., response to co-resident or staff leaving group home, illness in patient or significant other, seasonal pattern/anniversary reaction, trauma, abuse or triggers to past abuses). Note that grief can be delayed.

4. new onset psychiatric disorders and/or ongoing (chronic) psychiatric conditions. Adjustment, mood, anxiety and post-traumatic stress disorders are the most frequent new onset psychiatric disorders. Autism is the most frequent chronic comorbid psychiatric disorder across the range of functioning. Stereotypies and self-injurious and compulsive behaviours are often seen as chronic comorbid conditions, especially in lower functioning individuals.

In determining the relative contributions of circumstances 1 to 4, as listed above, all the basic areas of inquiry need to be examined: patient's main concerns; caregivers' main concerns; history of concerns with an emphasis on recent life events and changes; medical history; medication history; allergies; family psychiatric history; personal, developmental and social history.

It is also important to gather more detailed information on
the patient's usual level of functioning (baseline) and supports prior to this episode of disturbance. Seek further information about:

  • cognitive functioning (e.g., reading, writing and math grade levels; school history; results of previous psychological assessments; information about verbal and non-verbal IQ/functioning)
  • adaptive functioning (e.g., level of independence in daily life skills: amount of support needed around hygiene, dressing, eating and preparing meals; whether the patient can initiate his or her own activities, be left safely alone at home and travel independently)
  • communication (e.g., level of receptive understanding and expressive language)
  • social functioning (e.g., abnormalities in social response, eye contact, facial expression, the use of gesture to communicate, social initiation and reciprocity that might indicate a comorbid autism spectrum disorder)
  • residential circumstances (e.g., living with family or in a group home, and level of support in these settings) and
  • daily activity (e.g., attending school, day centre or other organized activities, and supports in pursuing these).

At the end of this inquiry, you should try to evaluate whether the expectations of the patient, and the supports provided, are appropriate given the patient's level of functioning and recent circumstances. For example, are you sure that caregivers understand the challenges the patient has to face on a daily basis? (e.g., If the individual has a hearing impairment, have appropriate adaptations been made in the individual's physical and social environment?)

In summary, assessing persons with intellectual disabilities involves not only a standard psychiatric assessment, but also a systematic approach designed to identify the contributions of other circumstances to the behaviours of concern.

In A&E, you may only be able to get a superficial understanding in these areas of inquiry, but this may be sufficient to alert you to areas of concern that may be contributing to the problems. These need to be pursued in more detail by the multidisciplinary team once the immediate crisis is past.

1.3 Assessing symptoms and behaviours that may point to a new onset psychiatric disorder and assessing for the presence of ongoing (chronic) psychiatric conditions

It is first important to determine whether there has been a significant change in baseline behaviours and functioning. An episode (or episodes) of changed behaviour can be identified as follows (Bolton & Rutter, 1994)

Determine usual behaviour and usual level of functioning (baseline) prior to onset of new disturbance in terms of: self-care, interest/involvement in school, work, play/leisure, social involvement, initiative, level of supervision required.

Determine whether:
a. there has been a change in behaviour outside the range of normal variation for the individual, lasting at least one week and a definite diminution in level of functioning in at least two of the following areas: self-care, interest/involvement in school/work, play/leisure, social involvement, initiative, need for change in supervision/placement
or
b. psychotic symptoms (e.g., delusions, hallucinations, catatonia) are, or have been, present and have lasted at least three days. (Note that it is difficult to diagnose psychotic symptoms in persons with an IQ below 50.)

Provisional psychiatric diagnosis
If the referral concerns or behaviour disturbance meet criteria for an episode of change, then an episode of psychiatric disturbance is established. The next step is to try to match this episode of psychiatric disturbance to a DSM-IV diagnosis. This is frequently difficult, particularly with lower functioning individuals, as subjective experiences needed to establish a DSM-IV diagnosis may be unavailable. From the clinical information available, generate the best provisional psychiatric diagnosis for the episode of psychiatric disturbance.

Comorbid psychiatric conditions
Document baseline self-injurious behaviours, tics, stereotypies, obsessive thoughts and compulsive behaviours, levels of attention, hyperactivity, impulsivity, fears and phobias: these may represent comorbid chronic conditions. Ask whether there have been any changes (i.e., increase in severity and/or frequency) in these comorbid conditions associated with referral concerns/behaviour disturbance. Documenting whether any comorbid conditions are present at this stage is crucial, as these conditions may also arise from the side-effects of medications used to manage the crisis, or to treat an underlying psychiatric disorder.

Note: In Canada and in the UK, a person with intellectual disability and mental health disorder is often referred to as having "dual diagnosis".

CAUTION

1.4.1 Understanding significant changes in behaviour
Significant behavioural changes may result from medical or dental disorders, problems in expectations or supports or emotional upsets. It is important to understand the contribution (if any) of such circumstances to the behaviour disturbance before making a psychiatric diagnosis or concluding that the problem is psychiatric.

1.4.2 Understanding aggression
Aggression is often the reason for the visit to A&E. Aggression of any severity can be the result of any of the four problem areas identified in Section 1.2. The severity of the aggression does not necessarily indicate the seriousness of the underlying cause of the aggression.

1.4.3 Diagnostic limitations in A&E
A&E is not the place to make definitive psychiatric diagnoses; however, provisional diagnoses based on clearly documented descriptions of behavioural changes are appropriate. Indicate clearly on your evaluation/assessment report that the diagnosis is provisional and needs to be reviewed when the crisis has abated. This is necessary as a psychiatric diagnosis made from a brief assessment can stick for years or even decades, and can result in the patient being prescribed inappropriate medication for lengthy periods with considerable morbidity. Your recommendations should include a clear outline as to follow-up and re-evaluation of diagnosis and treatment.

1.4.4 Diagnosing psychosis
"Psychotic" behaviour in persons with intellectual disabilities is more often due to their being overwhelmed with life events than to an actual psychotic disorder. For example, due to limited cognitive function at baseline, stress can fragment thought form in a way that may appear psychotic, or the patient may express primitive thoughts that sound delusional but actually relate to poor coping more than to frank psychosis. If the patient is overwhelmed, treatment involves identifying and attending to the causative life events. However, if it is true psychosis, then antipsychotic treatment is required.

Note that in an emergency situation, medication, along with other interventions, may be required for immediate containment even if no psychosis is diagnosed. It is important therefore that you indicate clearly on your evaluation/assessment report that medication was used to manage the emergency situation (it does not imply a diagnosis), and outline specific plans for follow-up diagnostic appraisal so that the need for medication can be reassessed.

2. Interventions in A&E

Assessing for a psychiatric disorder in persons with intellectual disabilities presents many challenges and requires obtaining detailed historical information as well as a multidisciplinary approach. This includes drawing on not only the perspective of psychiatry, but also input from other disciplines, such as psychology, communication therapy, behaviour therapy, nursing, genetics and medicine, including neurology.

This diagnostic process can start in A&E but avoid making definitive psychiatric diagnoses at this time. Instead, provide careful documentation of whatever history is available, along with observations of behaviour, and response to interventions in A&E. Ensure that this documentation is available to the team who will provide further psychiatric assessment when the patient is triaged. A&E provides an important opportunity to rule out possible medical disorders underlying the behaviours of concerns and also the opportunity to observe the patient in a more structured environment.

2.1 Managing the immediate situation

The first priority is to ensure the safety of the patient, caregivers and hospital staff consistent with the usual A&E procedures. Only then can the assessment continue. Pharmacological or physical restraint may be required as with other patients in crisis. However, the more A&E staff appreciate the individual's level of functioning and unique ways of communicating, the less likely it is that excessive medication or restraint will be needed.

2.2 Ruling out medical (and dental) disorders

The first goal is to identify and, where possible, treat any physical causes of behaviour disturbance. If you are concerned about a possible medical disorder, refer the patient for a medical assessment. Also inquire about when the last vision and hearing assessments were done, and about the outcome, as deterioration in sensory functioning can give rise to changes in behaviour.

Refer the patient for a dental checkup where indicated or when dental care has not been provided routinely.

2.3 Changing medications

Avoid changing all the patient's previous medications in this emergency situation unless it is clear that these previous medications are contributing to the referral concerns or behaviour disturbance. Resist the temptation to try the latest new medication just because it has not yet been tried for this patient. Limit your activities to dealing with the emergency and leave review of regular medication to the patient's usual treatment team. If you feel strongly that an alternative medication regime is more appropriate or should be tried, discuss this first with the regular treatment team.

2.4 Treating a psychiatric disorder

Treatment is generally initiated after the multidisciplinary team does a comprehensive assessment. Once the crisis has been managed and it has been determined that a psychiatric disorder underlies the behaviour disturbance resulting in A&E visits, treatment should be initiated in line with the provisional diagnosis. As well, behavioural markers should be identified and these behaviours monitored to substantiate or refute the provisional diagnosis. You will need to discuss with caregivers the behaviours they should start to monitor. For instance, if the provisional diagnosis is a mood disorder, instruct caregivers on how to collect data on such variables as eating and sleep patterns, weight, behavioural equivalents of mood, anxiety and agitation. Such documentation is likely to be invaluable to the team to which the patient is triaged. (See Section 3.) A behaviour therapist, available through the developmental service sector, can provide invaluable help with this monitoring.

3 Triage

3.1 Deciding where further assessment and treatment can, and should, take place

Consider what will be most helpful from the patient's perspective (e.g., based on his or her level of functioning and need for familiarity during crises). Also consider the assessment and treatment goals. Appreciate that caregivers are not medically trained and may be apprehensive about giving medications, monitoring side-effects and managing co-existing medical problems.

There are three main options for further assessment and treatment:

3.1.1 Inpatient admission required
Consider the following when deciding about an acute psychiatric inpatient admission:

1. The patient needs to be medically stable. If not, he or she is not suitable for a psychiatric inpatient unit.

2. If the patient does not have sufficient expressive and receptive language skills to make his or her needs known, or is not independent in activities of daily living, find out if the referring agency, together with the hospital, can provide additional, needed caregiver support for the individual while an inpatient.

3. A behavioural disturbance is frequently the manifestation of a psychiatric disorder, and is an appropriate reason for admitting the individual for further observation.

4. In planning admission, consider how you would handle a patient with aggressive, self-injurious or other serious behavioural problems and whether additional support is available, such as consultation from specialized services. (Also see below, "Success of an inpatient admission")

5. Propose realistic treatment goals (e.g., clarification of diagnosis, stabilization, review of medications) based on a provisional psychiatric diagnosis. This provisional diagnosis would include identified target symptoms and behaviours that might be monitored in response to treatment interventions.

6. Confirm with caregivers that the patient when discharged will return to where he or she was living prior to the A&E visit. If this is not possible, ensure that alternatives other than hospitalization have been discussed.

CAUTION: Be aware that some patients might not show any evidence, in A&E or on the inpatient unit, of symptoms and behaviours described by the caregiver. However, when leaving the structured environment of the hospital, these symptoms and behaviours may recur. This is valuable information that may only be obtained through admission.

If the individual is admitted to an inpatient bed, consider how the trauma of such an admission can be reduced. Note that being admitted can be especially traumatic for lower functioning individuals whose emotional and support needs may be similar to the needs of infants and younger children. Caregivers are often able and willing, with the support of their managers, to spend long periods with the individual in his or her hospital environment.

Clinical experience has identified four factors resulting in a poor outcome associated with hospitalization (Sovner and DesNoyers Hurley, 1991):

1. The patient is prematurely discharged.
2. The patient is over medicated.
3. The patient regresses while on the unit.
4. There is poor communication between the hospital and community caregivers.

Success of an inpatient admission (in terms of meeting the patient's needs and achieving assessment and treatment goals) is usually facilitated by:

  • attention to inpatient routines as they affect the patient. The patient's caregivers can assist in adapting the hospital routine and procedures to be consistent with those in the patient's home environment (e.g., how and when the patient normally sleeps, how he or she engages in hygiene and other activities of daily living and how the patient takes his or her medication).
  • attention to the physical environment (e.g., locating the patient in an end room/bed to reduce his or her distress, and to minimize possible disruption to other patients; ensuring that there is space for caregivers). If the patient requires restraint, try to ensure that this is offered in a manner similar to that experienced in his or her home. Community providers should have detailed procedures for that patient outlining the use of restraint (physical and PRNs,) and these protocols should be provided to hospital staff.
  • attention to staffing resources to optimize the inpatient stay. It is wise to find ways to provide consistent nursing staff for the patient and to identify nursing staff who can be responsible for liaising with community caregivers.
  • attention to communication, as good communication with the community team and community physicians (e.g., family physician, community psychiatrist) while the patient is in hospital usually contributes to a more comprehensive assessment, a more useful admission, better discharge planning and co-ordination of care, and less likelihood of repeated crises and readmissions.

3.1.2 Hospitalization not required but crisis requires an alternative environment
In the event of a situational crisis (e.g., loss of home, caregivers temporarily unable to support patient), options for crisis or respite services for persons with intellectual disabilities may be available in the individual's community. Identify these services in the individual's area.

Note that not all communities have such options or services.

3.1.3 Return to home environment with follow-up supports
Identify additional in-home or specialized supports for persons with intellectual disabilities available in the patient's locality.

For example, in the Toronto area if the patient can return home, but needs additional supports (e.g., a time-limited contract worker to get through the crisis), the appropriate service to contact would be the Community Support Network (GCSN).
In the UK, the appropriate service would be the local Community team for People with Learning Disabilities (CTPLD).

4 Follow-up

4.1 Medication

If medication has been prescribed, make sure that this is communicated to the GP or community psychiatrist. If the patient does not have a community physician, connect the him or her to outpatient psychiatric services.

4.2 Referral to specialized services

Specialized assessment and consultation services may be needed if:

  • the situation is complex
  • several services are already involved
  • there is a history of difficulty clarifying a diagnosis or determining effective intervention.

Identify what specialized services are available in the patient's area.

4.3 Plan for next time

As crises are common for many persons with a dual diagnosis, it is wise to have a proactive crisis management plan. Caregivers should be encouraged to develop such a plan, clearly indicating who to call or what service to contact in response to the issues of concern. For example, for someone who experiences periods of disruptive behaviours, caregivers should have available an escalation hierarchy protocol that indicates how to respond to the individual at each point of his or her behavioural escalation, including when to seek general medical advice. Caregivers will have identified at what point on this escalation hierarchy they need to seek help from the emergency services and when to take the individual to A&E. It is often helpful for the caregivers to have a letter written by the community physician that they can take with them to A&E. This letter should briefly outline the psychiatric disorder and treatment being provided. The letter might also suggest preferred ways to manage general crises for that individual, based on past experiences.

Develop and update any existing proactive crisis management plan with caregivers based on the individual's most recent experience in A&E. Encourage caregivers to keep a patient binder (or hand-held personal health record) for A&E visits and doctor appointments and to bring this with them to A&E.

Make sure your recommendations from this A&E visit are communicated to those supporting the individual in the community and those who may be involved in future crises (e.g., caregivers, family members, community services). This can be done by giving a copy of your assessment, with clear recommendations, to the person accompanying the individual to A&E and making arrangements for a copy to be provided to the caregiver who sees the individual daily. For example, if the individual is in a group home, a copy of your assessment recommendations (having obtained appropriate consent for release of information) should be sent to the individual's primary residential caregiver at the group home and to the group home manager. These recommendations should be accompanied with a specific request that they be passed along to family members, other caregivers, the individual's family doctor, psychiatrist and relevant community agencies. Where possible, you should try to make direct contact with the individual's community physician and provide direct feedback.

4.4 A final reminder

If this was your first experience of an individual with intellectual disability in a crisis, and it felt uncomfortable, that's OK. RELAX. No matter how disastrous a situation was, review it with colleagues, learn from it, and try to understand the personal and professional distress you may have experienced. Don't react by denying further contact with this individual, or by prejudging and rejecting other individuals with intellectual disabilities. And don't be afraid to seek expert help.

Debriefing and training may be available through the local specialist intellectual disability services. Such training can be most useful when your team has had a recent experience with a patient so that questions can be focused on the realities of your circumstances and the issues you encountered while responding to the patient.

References

American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders (4th ed.), text revision (DSM-IV-TR). Washington, DC: American Psychiatric Association.

Bolton, P. & Rutter, M. (1994). Schedule for assessment of psychiatric problems associated with autism (and other developmental disorders) (SAPPA): Informant version. Cambridge: Developmental Psychiatry Section, University of Cambridge & London: Child Psychiatry Department, Institute of Psychiatry. [Unpublished]

Sovner, R. & Hurley, A.D. (1991). Seven questions to ask when considering an acute psychiatric inpatient admission for a developmentally disabled adult. The Habilitative Mental Healthcare Newsletter, 10, 27-30.

Other resources

Deb, S., Matthews, T., Holt, G., & Bouras, N. (2001). Practice guidelines for the assessment and diagnosis of mental health problems in adults with intellectual disability. Cheapside, Brighton: Pavilion.

Health Evidence Bulletins - Wales. (See link to Learning Disabilities.) Available: hebw.uwcm.ac.uk

The International Association for the Scientific Study of Intellectual Disabilities (IASSID). Available: www.iassid.org

The Royal College of Psychiatrists. (2001). DC-LD: Diagnostic criteria for psychiatric disorders for use with adults with learning disabilities/mental retardation. London: Gaskell.

Rush, A.J. & Frances, A. (Eds.). (2000). Expert consensus guideline series: Treatment of psychiatric and behavioural problems in mental retardation. American Journal on Mental Retardation, 105 (3, Special Issue), 159-226.

The University of Western Ontario. Developmental Disabilities Program. Available: www.psychiatry.med.uwo.ca/ddp

This article was first published in 2002 by the Centre for Addiction and Mental Health, University of Toronto, Surrey Place Centre. Minor changes in terminology have been made with permission from the development team (Elspeth Bradley, Marika Korossy and Susan Morris), and the pictures have been added.

Pictures taken from Getting on with Epilepsy (1999), Gaskell: London. See www.rcpsych.ac.uk/publications/bbw