I’d like to consider the Mental Capacity Bill, which is due to come to the Dáil in 2011. It is needed in order to have clarity on capacity, to allow for different degrees of autonomy, to provide safeguards for vulnerable people and to comply with Ireland’s obligations under the UN Convention on the Rights of People with Disabilities (COPD) and the European Convention on Human Rights (ECHR). I write both as someone involved with disability policy through my work in the Citizens Information Board and also as someone who in the past took decisions on behalf of a daughter with multiple disabilities.
We need a Mental Capacity Act because both the COPD and ECHR insist that any restriction on liberty of an adult must be justified by the serious consequences of not so doing and must take place under fair and transparent procedures. Liberty is the most important right a person has, and yet it is obvious that there are circumstances where it must be curtailed, and where responsible individuals and institutions could be seen as failing in their duty of care if they did not restrict a person’s liberty. Such restrictions must be put in place according to statutory procedures—not just at the whim of a particular service or hospital.
At present every Irish adult over 18 is deemed to have legal capacity to make their own decisions, unless the courts have decided otherwise. In practice, most people who lack capacity have decisions made for them by their parents or carers, with the courts only becoming involved when there is conflict over a particular decision or incident. The Wards of Court system which was set up in the nineteenth century to protect property in the case of incapacity, is both expensive and unduly restrictive on the person’s day-to-day activities. Wards of Court and their carers have to refer simple changes in lifestyle to the committee. If there is no next of kin, they may not even have an individual committee, but may have to rely on the Solicitor General and his understanding of their best interests.
Most families and services sensibly avoid the Wards of Court system and make decisions informally, involving the person who lacks capacity to a greater or lesser extent. In the regulated world we live in this can lead to problems. Where there is a dispute over a decision, the family member or care-giver could be accused of acting without authority. Solicitors and bankers, for instance, are supposed to ensure that clients have capacity to consent before they enter into a contract. Mental capacity is not an all-or-nothing thing. Most of us lack capacity in some areas—in these recessionary times financial examples spring abundantly to mind.
Many people with disabilities—even intellectual disabilities—have as much mental capacity as anyone else. The fact that ‘capacity’ is not defined properly can throw a shadow over anyone who has a disability or who appears frail or elderly. UK legislation defines capacity in terms of ability to understand information (on a particular matter), to retain it for long enough to make a decision and to communicate that decision to an independent person. Obviously most people can make simple decisions. Nearly everyone has preferences about the people around them, the food they eat, the activities on offer. Even if they cannot speak, a key worker or family member who takes the time should be able to decode these preferences. A statutory assessment procedure and a functional definition of capacity backed up by support in day-to-day decision-making can improve such a person’s autonomy.
Capacity legislation is needed for another important reason— to provide safeguards for a person who cannot safely live without some degree of supervision. Many people are aware of the Bournewood case in the UK where a man with an autistic spectrum disorder was detained under what the hospital claimed was the ‘Common Law doctrine of necessity’. The European Court of Justice ruled that this was in conflict with Article 5 of the ECHR, as there were insufficient statutory procedures to give protection to an individual so detained. As a result, the UK brought in their Mental Capacity Act which puts in place agreed procedures (including independent mental capacity advocates) for people who are detained in this way. In Ireland such protective systems are only available under the sections of the Mental Health Act which deal with involuntary detention; yet typically, a person with intellectual disability and challenging behaviour in a residential unit is not detained under this Act, though the service provider will almost certainly prevent him/her from leaving. A similar situation exists for people with dementia in nursing homes. The involuntary detention provisions of the Mental Health Act (which contain considerable safeguards including immediate tribunals and reviews) are used for people ‘with a mental disorder’ whose actions put themselves or others in danger. A number of High Court cases have pointed up the anomalies in the situation of those who are detained as ‘voluntary patients’, but who do not have the capacity to consent to their stay in a hospital.
Capacity legislation should enable people with diminished capacity to make whatever decisions they can, adopting the principle of the least restrictive alternative for other matters. However, it seems to me simplistic to say everyone can make every decision. In practice, this may leave vulnerable people at the mercy of family members or workers who lay their own beliefs on the person. Some decisions are important—complex medical decisions, major financial decisions, or changes in service provision. No matter how many explanations were offered, my daughter would not have understood such issues. It seems to me essential that whoever takes such substitute decisions is a named and accountable person, that they follow approved guidelines, that their decisions are overseen by something like the proposed Office of the Public Guardian and are ultimately open to challenge in a court.
It is important that the proposed Office of the Public Guardian is properly resourced with trained staff who are not just lawyers, but who have a knowledge of disability, to act as substitute decision makers for people who lack capacity and have no next of kin. It is also important that the assessment and guardianship process is kept simple, swift and inexpensive for the individual.
In thinking about capacity, it is important that we don’t think in terms of us and them. We are all born vulnerable and dependent and may end up needing the safeguards we put in place for others. Autonomy is sometimes seen as the thing that makes us human, but perhaps as important is the willingness to accept vulnerability and to pay careful attention to those who have less control than we have over their lives.