This blog post is co-written with Michael Bach. We presented these ideas in a double act for a seminar in Belfast on 20 March 2014, organised by Mencap Northern Ireland and the Northern Irish Association for Mental Health.
Michael Bach (left) and Oliver Lewis (right). Photo (c) Press Eye.
Governments around the world are embarking on reforms to give people with disabilities (including people with intellectual disabilities, people with mental health issues, brain injuries, dementias and so on) more autonomy and at the same time fulfil state obligations to protect the vulnerable from harm.
Like many other jurisdictions, Northern Ireland has an outdated, paternalistic system that equates protection with removing autonomy. It is people with disabilities who pay the price.
Lisa Sarah Jane is a woman with an intellectual disability living in Northern Ireland. Her message to the conference summed up the whole day: “Good support comes if you are listened to.”
The Northern Irish government have been developing a new system for several years. It has a policy commitment to “ensur[ing] that people with disabilities receive the appropriate support so that they can empower themselves to make choices and exercise control over their own lives”. (p. 11 of the Disability Strategy 2012-15).
This statement sounds great, but it’s not at all clear that the new mental capacity law will deliver on that promise. No bill (draft law) has yet been published. But there have been various statements by Ministers of the government that suggest what could be in the bill when it is finally released to the public.
The bill will regulate decisions in mental health care. A human rights lawyer (who has informed us she would like to remain anonymous in this blog post), was hospitalised in Belfast. She gave a speech to the conference. She said that despite having voluntarily admitted herself to hospital, her decisions were overruled and decisions about her everyday life were made for her. Detention is over-used as a precautionary measure, she said, whereby a snapshot judgment is made on the basis of someone’s label, without real consideration of their perspective. She called on the government to redress inequalities in the current process, noting that support during a mental health crisis can greatly enhance that person’s recovery.
Oliver Lewis, MDAC Executive Director. Photo (c) Press Eye
Mental health and capacity bill
The “mental health and capacity bill” apparently defines “mental capacity” (a person’s talent at a particular moment to make a particular decision) with reference to a two-pronged test. There will be a diagnostic part of the test and a functional part (as Colin Harper explains on page 19 of this journal). The diagnostic stage means that only a people labelled as having an “impairment of or disturbance in the functioning of their mind or brain” will be covered by the new law.
The functional test is whether this so-called ‘impaired’/‘disturbed’ person can:
This approach may be well-meaning, but it is wrong. Here’s why.
The new law should move from the left hand to the right-hand column
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From |
To |
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A presumption that mental capacity must be established in order for a person to make their own decisions |
A presumption that people can make decisions by themselves and for themselves, with assistance if needed |
|
Provision for findings of ‘incapacity’ and appointment of substitute decision makers |
Prohibition on findings of ‘incapacity’ and appointment of substitute decision makers, where alternatives exist |
|
Capacity assessment |
Assessing need for supports and ‘alternative courses of action’ to findings of ‘incapacity’ and the imposition of substitute decision making |
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Detention in mental health facilities |
Exploration of support alternatives in the community |
|
Finding of ‘incapacity’ |
Finding of need for support |
|
Substitute decision making |
Supported decision making and power to appoint others to act for you, according to your wishes laid out in an advance directive |
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Best interests test (what others determine are your best interest) |
Best interpretation by others of your will and preference when your form of communication makes it difficult for others to understand |
A “presumption of mental capacity” principle is meaningless
Under the new law, the starting point would be a professional assessing someone’s mental capacity. The professional would look at what’s going on inside the person’s head, what sort of talent this individual has to make decisions, and how well he or she is in communicating it. That may have been an enlightened starting point a few decades ago, but we now live in a human rights-based era which guarantees autonomy for all.
Article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) says we need to recognise and support the right to legal capacity (the capacity and power to create, modify or extinguish legal relationships) not just mental capacity (the decision-making ability of a person as judged by someone else).
The new law will label people as ‘incapable’. Source: CRIPPEN Disability Cartoons
Assessing “mental capacity” doesn’t make sense
The bill will likely provide for certain professionals to assess a person’s mental capacity. Instead professionals should be assessing what supports need to be put in place, and how to ensure a person’s will and preferences are given primacy. The assessment process should be designed to identify a person’s wishes and goals, the decisions a person needs and wants to make, and what supports should be put in place to enable him/her to exercise the right to make their own decisions.
A person should not be labelled with ‘incapacity’ (or ‘incompetence’), but be found instead as needing some support. This would then trigger an obligation on the local government/community to provide that support.
Avoiding substituted decision-making
We understand that the new bill would establish a system in which a person with a disability could be speedily labelled as ‘incompetent’ and a substitute decision-maker appointed. There are lots of things which should happen before this, otherwise the so-called “last resort” ends up being the first resort, especially in a risk-averse culture.
A “best interests” principle is harmful
The draft bill contains a principle that other people will make decisions in the best interests of a person with disability. This boils down to the substitute decision-maker having to justify why the outcome of the decision is plausibly good for the person with a disability. Although modern capacity legislation requires the person’s preferences to be taken into account, this is simply insufficient to ensure a human rights-compliant approach. The “best interests” approach should be dumped and replaced with a “best interpretation” approach.
What this means is that in the very rare instance where a person’s will and preferences cannot be understood (after having tried various creative communications methods and the best-placed people to communicate with the person), then decisions should be taken which respect an account which best interprets what the person would have chosen. It’s the job of others to be more Sherlock Holmes: to find out about any previously-expressed will and preference, to establish who this person is, what values they have, what people and places and food etc. they like and dislike.
We never really know what is going on in each other’s head. We do our best to interpret it and act on that basis. Why should the process be any different for people with disabilities, even those with significant and profound impairments?
The best interpretation of a person's will and preferences is the key. Photo (c) Press Eye.
What are the alternatives?
We think six things should be established in a new legal capacity law in Northern Ireland (and everywhere else).
