‘But I can’t tell you what I want’ —Consent, capacity and intellectual disability

by Ciaran Leonard

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In Ireland today, it is estimated that there about 25,500 citizens with intellectual or disability (ID). For many, the inability to communicate effectively or to understand the variety of options available in any given circumstance means that they cannot give or withhold consent to a variety of important issues in their lives. The questions around capacity to consent also touch the lives of people living with mental illness, elderly people experiencing a variety of dementias and those with acquired brain injury as a result of accidents or illness. This is both a very human issue on a personal level and a human rights issue on the macro-societal level. The debate around consent and capacity often focuses on medical intervention and related issues, but it needs to be seen in the everyday context of the choices and decisions made for and with someone with ID.

In this article I wish to focus on the reality as it pertains to those with intellectual disability—although much of the initial part is equally applicable to all of other citizens mentioned above. I intend to outline some of the proposals around mental health capacity legislation currently before the Oireachtas, and some of the challenges to social care workers, ID nurses and those with intellectual disability in their charge.

If there be any doubt as to the importance of capacity legislation for those with ID, consider the recently reported case of a young girl with Down syndrome who was allegedly sexually assaulted. She complained to the Gardaí, the alleged perpetrator was arrested and charged, only for the case to be thrown out of court on the grounds that the judge ruled she did not have the capacity to give evidence (Irish Independent 15 December 2007; Alan Shatter TD on RTÉ “Drivetime”, 15 December 2007). The gory details of the case are not for consideration here, but it highlights just one of the problems facing the more vulnerable citizens in our society.

As a brief background to the issue of capacity—in 2001, the  Irish government published the Mental Health Act which, among other issues, provides for the review of the involuntary detention of people in approved psychiatric institutions. It is worth noting also that the phenomenon of dual diagnosis (having an intellectual disability and a mental illness concurrently) is a reality difficult to discern and diagnose and this only makes the legislative issue that bit more complex to negotiate. The review of involuntary detention is to be completed by a Mental Health Tribunal. What is interesting from our point of view is that the definition of a mental disorder under Section 3 of that Act includes those with significant intellectual disability (Mental Health Act (2001) (3) (1)). There are other conditions to be met, of course, before involuntary hospitalisation can be contemplated. Section 4 of that Act also introduces the concept of ‘best interests’ to be applied in making specific decisions for those coming under the ambit of the Act (Mental Health Act (2001) (4) (1). Another interesting concept in this legislation is the significant debate that has arisen over what constitutes a ‘voluntary’ patient from an ‘involuntary’ one—given that many may lack the capacity to consent to hospitalisation, community care and medical treatment and are therefore treated as ‘involuntary’.

Consent, I would argue, should be as equally important when considering a variety of more mundane issues such as choosing clothes, social activities, where to spend holidays (the list is endless). The need for good advocacy arrangements is paramount as part of the overall solution to the dilemma. Hence, and for a variety of other reasons, there is the important proposal before the Oireachtas to introduce ‘capacity’ legislation.

Since 2008, following a submission from the Law Reform Commission, a new bill dealing with consent and capacity has been before our national parliament. Unfortunately, its complexity and the recent national economic crisis have ensured that it is not yet ready for publication, but this is a brief summary of what we may find in it. The current legislation around the issue is the 1871 Lunacy Regulations Ireland Act which is hopelessly outdated, inappropriate in its language and the concepts of intellectual disability and mental illness it employs. Under that Act, people who have questionable ability to give consent are dealt with as ‘wards of court’ and it is the prerogative of the High Court to consider such applications. As Ireland is a signatory of the UN Convention on the Rights of Persons with Disabilities and also subscribes to Article 6 of the European Convention on Human Rights, we must find more acceptable ways for dealing with the issue of capacity and consent for those citizens more vulnerable in society.

The proposal is to create a new administrative structure, the Office of Public Guardian, to ensure a more effective and appropriate system for persons who lack capacity and their families. The Office of Public Guardian would supervise court.appointed personal guardians and individuals awarded enduring powers of attorney, and it would provide a forum for complaints to be made against personal guardians and any others involved. The relevant court to hear and deal with such applications is to be the Circuit Court (which, with 26 locations nationwide, would be far more accessible, quicker to obtain a hearing in, and cheaper than the very high costs of the High Court (‘Regulatory Impact Assessment’ document accessed on www.inis.gov.ie).

The role of this proposed new Office of Public Guardian or a Guardianship Board, would be to determine issues of legal capacity, make guardianship orders and intervention orders, supervise enduring powers of attorney, and appoint personal guardians where necessary. Members could include medical and mental health personnel as well as judges. The Commission’s principal motivation for recommending this body was to promote a multidisciplinary approach to capacity issues. With regard to the desirability of multidisciplinary input, it is intended that the Bill will provide that the court can request expert advice as necessary, whether medical, social and healthcare related, or financial (‘Regulatory Impact Assessment’ document accessed on www.inis.gov.ie).

The legal issues notwithstanding (and there are many, such as a still unclear definition of capacity), I would like to turn briefly to a short consideration of practical consent by our citizens with ID in the more ordinary, everyday and mundane aspects of life.

Quality of life is the aspiration for all concerned with the care of those with ID. Many person centered plans (PCP’s), while of immense benefit and providing a positive vision for the future for those in our care, confront this difficult reality of consent head on. In dealing with those of our brothers and sisters who do not communicate verbally or by any other effective means, we have to ask, ‘Is this really what s/he wants?’ In planning activities, outings, buying clothes and choosing food—how do we know that this is what our service users really desire or want? A few practical suggestions can be introduced, although I acknowledge the difficulty in getting it right.

1. Knowing the service user—what have they responded to positively or negatively in the past?

2. The clear signs of communication—what is the reaction of the client to being brought to a particular place?

3. Does the service user resist or react physically to a particular piece of clothing, food, location or individual?

4. What is in the best interests of the person in your care?

5. Would you propose the action or activity if the individual concerned was your child, brother, sister, parent or friend?

6. What, if any, negatives are there associated with a proposed course of action?

7. How would you feel if you were the recipient of the proposed course of action?

Another dimension to making decisions for or on behalf of another person is to be aware and conscious of what drives you, the carer. What motivates you? What do you hope to achieve by whatever it is you are proposing? Why are you contemplating this course of action? self-knowledge and a large degree of personal honesty are essential here. Am I proposing whatever is convenient for me? Am I choosing clothes I would wear myself? Do I pick what is convenient from the menu in a restaurant? Social activities chosen simply because they will ‘look good’ to management are also seriously questionable.

So, let us return to the nub of the question—ascertaining what it is that the person with ID would like to do or have. Judgments ultimately have to be made. Any course of action needs to be appropriately risk-assessed. Any relevant legislation needs to be considered. But we also need to ask if we are too rigorous in this approach. How often do our own (maybe legitimate) fears play an influential role in deciding if a proposed activity is suitable or allowable? Alternatively, maybe we need more rigorous assessments. To what extent are we biased or limited in our vision for our charges by their apparent physical limitations?

I am conscious that I have asked more questions than I have answered, but the objective is to create a constructive mental framework within the minds of social care workers, nurses, family and friends, by which we might give greater and more detailed consideration to how we perform our tasks in this regard and thereby promote greater professional standards for what we do. We will never always get it right—and conversely, we will never always be wrong. The possibility of new legislation by which to structure the macro-situation is hopeful, as is the enthusiasm and generosity of our carers in performing their role in the best interests of those we care for.

Ciaran Leonard is a social care worker with the Sisters of Charity of Jesus and Mary Services (SCJMS), and is based in Co. Westmeath.

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