‘“The moral test” of government is how its treats those who are in the dawn of life (children), those who are in the twilight of life (the elderly, and those who are in the shadow of life) the sick, needy or disabled)’. These words were spoken by the American politician Hubert Humphrey many years ago, but they reflect the ideals which every government must have to protect the most vulnerable members of our society.
It is, therefore, with some dismay, as a former Director of St Michael’s House, to read that this charity has lost €12.3 million in its budget since 2008, which will now result in many cuts to its services for more than 1600 children and adults with an intellectual disability. On the other hand, the recent publication of the Assisted Decision-Making Capacity Bill 2013 will substantially assist vulnerable people in our society with decision-making and will also give them much needed legal protection from abuse or exploitation or fraud.
At present, people with intellectual disability do not have clear rights to make decisions. The law determining who has decision-making capacity has been very inadequate and the arrangements for supported and substitute decision-making have been practically non-existent.
In practice, decisions are made on behalf of adults with intellectual disability by parents or by service providers. There is no form or system for assessment of the capacity of the person with intellectual disability to make decisions for him/herself (unless there is an application to have the person made a ward of court). Parents/careers and service providers effectively make the decisions which are needed. These range from decisions about where a person is to live, what he/she is to wear, and decisions about medical treatment and social relationships, including intimate relationships. The majority of decisions made are necessary, appropriate and in the best interest of the person, but there is always the danger that they may infringe the rights of the person with a disability.
If a person does not have the legal capacity to make specific decisions or to make general decisions, then some form of assisted or substitute decision-making mechanism is needed. The new legislation aims to assist vulnerable people who have limited decision-making capacity to manage their affairs. The Bill introduces a system for support in decision-making, giving the vulnerable person greater autonomy in any decisions concerning their lives.
The proposed law is based on a number of guiding principles:
■ There is a presumption of decision-making capacity;
■ Intervention only occurs where necessary, taking into account the needs of the person;
■ Any decision made under the Bill must be done in the manner which least impinges on the person’s rights; and
■ Any decision made in support or on behalf of a person with diminished capacity must give effect to their will.
The legislation further provides for the appointment of a Public Guardian, which will be an independent body for the monitoring of the decision-making appointees and persons with Enduring Powers of Attorney.
The new legislation, in effect, enables specific individuals to act as a form of legal advocate, to support the vulnerable individual, while enabling that individual to have their voice heard and to have their wishes followed, where possible. However, in summary, the Bill provides for the appointment of different types of decision-makers to assist the vulnerable person in making decisions. These decision-makers c+an assist the vulnerable person, where that person has limited, fluctuating or a permanent state of health where their capacity is in question.
Firstly, the Bill provides for protection from liability for informal decision-makers, i.e. carers, in relation to personal welfare and healthcare decisions made on behalf of a person with impaired capacity, where such decisions are necessary and where no formal decision making arrangements are in place.
Secondly, the Bill provides a statutory framework for formal agreements to be made by persons who consider that their capacity is in question, or may shortly be in question, to appoint a trusted person to act as their decision-making assistant. In this situation, the decision-making authority Remain, with the appointer who will be actively assisted, typically by family members, relatives and carers, in accessing information, in understanding the information, in making and expressing decisions, and in implementing decisions. The assistant must ascertain the will and preferences of the appointer and endeavour to ensure that the appointer’s decisions are implemented.
Thirdly, if a vulnerable person is unable to appoint a decision-making assistant, then the court can appoint a decision-making representative. The Court may appoint one or more nominees to be the decision-making representative for the relevant person. In making an order under this legislation the court may make provision for such matters as it considers appropriate, including setting out conditions covering the role of the decision-making representative. Before appointing a decision-making representative, the court must be satisfied that the proposed decision-making representative is a suitable person to act as decision-making representative for the relevant person and to carry out the necessary tasks and duties associated with being a decision making representative.
The legislation also provides for emergency situations and empowers the court to make an interim order, that is, a temporary order in relation to a relevant person who needs court protection.
The Bill also establishes an Office of Public Guardian with supervisory powers to protect vulnerable people and to supervise the different types of assistant decision-makers permitted under the legislation.
The Bill will also modernise the law in relation to enduring powers of attorney and will provide for advance care directives (at committee stage).
The new Office of Public Guardian will also replace the Wards of Court Office and the creation of future wards of court will be prohibited.
What is very welcome about the Bill is that it moves away from the paternalistic way of looking after what we decide are people’s ‘best interests’, to recognise that it is a person’s right to make decisions about their own lives, enabling and supporting them in that decision making. Under the Act, capacity is always presumed unless the contrary can be shown. A second core element seeks to ensure that the assistant decision-maker must:
■ reflect the right of the relevant person to his or her dignity, bodily integrity, privacy and autonomy;
■ permit, encourage and facilitate the relevant person to participate as fully as possible;
■ give effect to the past and present will and preferences of the relevant person; and
■ take into account the beliefs and values of the relevant person.
A worrying provision in the Bill is Section 6. This states that expenses incurred by the legislation have to be sanctioned by the Minister for Public Enterprise and Reform. I hope this provision will not be used as an excuse to delay the passing of the legislation. Minister Alan Shatter has said: ‘This reform of the law is long overdue and is a major step towards the ratification by Ireland of the UN Convention on the Rights of Persons with Disabilities.’
Hopefully, our politicians will not delay passing this legislation to protect the most vulnerable. I hope to organise a seminar on the new Bill within the coming months. If anyone would like to be invited to this seminar please feel free to contact me at email@example.com