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InPsych 2015 | Vol 37

August | Issue 4

Cover feature : Assessment of capacity

Assessment of capacity in people with intellectual disability

People with intellectual disability (ID) can experience deficits in thinking, problem solving and decision making, which may hinder their full and effective participation in society on an equal basis with others (United Nations, 2006). Lack of capacity can prevent participation in many of the activities that form part of daily life, with major implications for the person with ID.

The conceptualisation of capacity and its corollary concept, decision making, has changed substantially in the last decade, driven by a rethinking of what constitutes decision making and the paradigms to assess this. There has been a shift from protectionism to an approach aiming to achieve balance between duty of care and dignity of risk. Decision making is at the forefront of contemporary disability policy and practice. The United Nation’s Convention on the Rights of Persons with Disability affords a pivotal role to the enactment of the will and preferences of people with disability, who must be provided with opportunities to enjoy all human rights and fundamental freedoms.

Within this convention of understanding disability, psychologists are often requested to provide an opinion about capacity for a person with ID in relation to life decisions such as personal safety and security, finances, medical, living and relationship decisions.

Typical referral scenarios

James is a 42-year-old man with ID who has decided to nominate his housemate as the person who can deal with his money, but James' mother feels he is being financially exploited.

Sue is a 56-year-old woman with ID and complex physical health needs, including difficulty swallowing which puts her at risk of choking. Health professionals have recommended she have modified foods for attenuating this risk, but Sue is refusing outright.

Practice and ethical considerations

Psychologists may draw on different paradigms for evaluating capacity, but there is no single accepted standard guideline for assessing capacity and so it remains heavily a matter of clinical judgment. Iacono and Murray (2003) note that “there remains no clear indication of the threshold of performance needed to decide if a person demonstrates decisional capacity” (p. 45).

In practice, an assessment of capacity will usually include cognitive assessment/s augmented by clinical interview, and information from secondary sources, such as previous reports and carers. A multi-element assessment approach is recommended, because no single method will yield sufficient information to allow accurate formulations. Although a cognitive assessment will provide important overarching information, it is a general measure of a person’s capacity for thinking and problem solving. Assessing a person’s capacity to make informed decisions around a specific issue will require ‘drilling down’ using clinical interview and, where available, content specific tests (e.g., risk assessment tests).

Key questions for assessing the capacity to make a specific decision might include whether the person: understands information about the decision; is making the decision voluntarily without duress; normally makes decisions of this type; understands the potential benefits and risks in making the decision; has an appreciation of the impact on others in making the decision; has had sufficient time to consider or weigh up the decision; and is aware of where to go for more information, or about relevant complaint processes.

Carers are an additional source of information, however, such information needs to be managed with caution and sensitivity, and with the person’s permission. Note that person and carer perspectives do not always correlate and will need to be confirmed for accuracy. The use of multiple carer sources is recommended.

Considerations for test selection and interpretation

Psychologists should become familiar with key characteristics of different types of disability to facilitate appropriate instrument selection. For example, a person with little or no verbal skills (e.g., associated with cerebral palsy) is likely to experience difficulty with tests that are heavily weighted to language-based processing and reasoning.

Psychologists should also strive to provide reasonable test accommodations to eliminate discrimination and achieve fairness in testing, and be knowledgeable of the implications for interpreting results when deviating from standardised procedures. They should be mindful of the limits of their expertise and the need for consultation on the potential effects of various disabilities on test performance. Advice should be sought from other experts, disability organisations, test publishers and relevant literature, and where possible other professional colleagues should be included to enhance reliability of formulations.

Beyond assessing capacity, psychologists have an important role to play in supporting the decision making of people with ID. In fact, even more important than asking “What is the person’s decisional capacity?” is the question “What types of supports does the person require to more fully participate in decisions that impact their life?” This could be through the provision of information in forms that are more easily understood, giving information over time to give the person opportunity to weigh up the decision, or expanding on the client’s range of learned choice options.

References

  • Iacono, T., & Murray, V. (2003). Issues of informed consent in conducting medical research involving people with intellectual disabilities. Journal of Applied Research in Intellectual Disability, 15, 41-52.
  • United Nations (2006). Convention on the rights of persons with disabilities.

Key reading

  • Department for Constitutional Affair.s (2007). Mental Capacity Act 2005: Code of Practice. London: The Stationery Office. Retrieved July 2, 2015, from, https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
  • American Psychological Association. (2012). Guidelines for assessment of and intervention with persons with disabilities. American Psychologist, 67(1), 43-62.
  • Law Society of New South Wales. (2009). When a client’s capacity is in doubt: A Practical Guide for Solicitors.

References

  • Iacono, T., & Murray, V. (2003). Issues of informed consent in conducting medical research involving people with intellectual disabilities. Journal of Applied Research in Intellectual Disability, 15, 41-52.
  • United Nations (2006). Convention on the rights of persons with disabilities.

Key reading

  • Department for Constitutional Affair.s (2007). Mental Capacity Act 2005: Code of Practice. London: The Stationery Office. Retrieved July 2, 2015, from, https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
  • American Psychological Association. (2012). Guidelines for assessment of and intervention with persons with disabilities. American Psychologist, 67(1), 43-62.
  • Law Society of New South Wales. (2009). When a client’s capacity is in doubt: A Practical Guide for Solicitors.

Disclaimer: Published in InPsych on August 2015. The APS aims to ensure that information published in InPsych is current and accurate at the time of publication. Changes after publication may affect the accuracy of this information. Readers are responsible for ascertaining the currency and completeness of information they rely on, which is particularly important for government initiatives, legislation or best-practice principles which are open to amendment. The information provided in InPsych does not replace obtaining appropriate professional and/or legal advice.