In 1871, the Lunacy Regulation (Ireland) Act was passed "to amend the Law in Ireland relating to Commissions of Lunacy, and the proceeding under the same, and the management of the Estates of Lunatics; and to provide for the visiting and the protection of the Property of Lunatics in Ireland".
Some 144 years later, this Act looks set to be repealed. It will be replaced by the Assisted Decision Making (Capacity) Bill 2013 and will bring an end to the system of wards of court, reform of enduring power of attorney and formal recognition for advance healthcare directives.
While the length of time taken to enact this legislation has been a matter of profound embarrassment internationally and extreme frustration nationally, should it be passed it will give Ireland one of the most enlightened pieces of legislation of its type anywhere in the world.
The new legislation will strengthen the rights of all individuals but it will have particular relevance for people with intellectual disabilities, older people with diminished capacity or dementia and people whose capacity has been affected by traumatic injury. It will also ensure people with capacity can register in advance their wish to not to receive treatment they perceive as futile in the event they lose capacity to make decisions.
Central to the proposed legislation is the establishment of a Decision Support Service and the introduction of new roles: decision-making assistant, codecision-maker, and decision-making representative.
The title of the Bill and the language used is of the utmost significance. The emphasis is no longer on “best interests”, as determined by others, but on establishing the “wishes and preferences” of individuals and providing necessary support and assistance to them where required.
Some people may require minimal assistance in making decisions of enormous consequence, such as whether to live at home or in a congregated setting such as a nursing home, and some may require considerable assistance regarding the financial implications of such a decision.
Sadly, some will not be in a position to make any decisions for themselves, but where a decision-making representative is appointed by a court, there will be a right of review and the possibility of revoking an order.
The old “status” approach to an individual’s capacity to make decisions can be simply summed up in statement form: “Now you have it . . . now you don’t.” The new “functional” approach asks a question: “In relation to this specific issue, at this time, does this person have capacity?” It follows that question with another: “What level and type of support might be needed in order to assist this person make a decision?”
The focus is now on the positive, on enhancing whatever level of capacity exists, even where it is considerably diminished, rather than on the negative, which is all too frequently expressed in the crude remark: “Sure s/he isn’t fully compos mentis?”
In other words, a statutory presumption of capacity will exist unless there is clear evidence to the contrary.
The development of the Decision Support Service will ensure the noble aspirations of legislation manifest themselves in clear changes in systems and practices and better experiences for vulnerable citizens.
Its development will require vision, leadership and resources. Given its innovative role it would be preferable that it be either a standalone entity or directly under the Department of Justice and Equality, rather than under the Courts Service, as is currently envisaged.
The anticipated passing of this legislation must be seen as just one phase in the development of a framework of support for people who are vulnerable. The jurisdiction of the Ombudsman, recently extended to private nursing homes, needs to be extended into clinical areas.
The system of complaints in acute hospitals, recently examined by the Ombudsman, needs to be strengthened and systems and skills developed to ensure service-user experiences inform the design of services.
The potential of roles such as a public interest representative to ensure the providers are constantly aware of the perspective of the provided-for needs to be explored at national and local level.
Above all, the need for independent support and advocacy services in all care settings must be addressed.
The development of a spectrum of support and advocacy services, capable of enhancing capacity to self-advocate, as well as defending human rights where people lack decision-making capacity, must accompany the implementation of the Assisted Decision Making (Capacity) legislation.
This will require a focus on quality standards and codes of practice, effective teams of professionals working with well-trained and supported volunteers and backed up by first-class legal, financial and systems expertise. Bringing all of these elements of a framework together suggests the need for some form of public oversight; perhaps best exercised through an Oireachtas committee.
Patricia Rickard-Clarke is a solicitor and former Law Reform Commissioner. She is chairwoman of the National Advisory Committee of Sage – Support & Advocacy Service for Older People. sage.thirdageireland.ie