It is challenging and disruptive legislation, the conference heard, but with the right supports and motivation, it can be made to work with a commitment to do the right thing by those with diminished capacity because at some point, any one of us could be that relevant person.
Human rights can never be merely aspirational and not be grounded in common sense, the conference heard.
We exercise human rights all the time and they cannot be inimical to practical realities. Independence, autonomy, self-determination are integral to human rights.
Human rights derive from personhood and they are inalienable and exist regardless of difference, and cannot be lost due to diminished decision-making capacity.
Offensive language
The act must be welcomed for sweeping away the outdated and offensive language of the Lunacy Act of 1871 various speakers agreed.
This was described as an antique piece of offensively-worded legislation, which ranks people according to their usefulness. The new legislation also removes a lot of uncertainty built up through custom and practice and sweeps away grey areas.
The conference critically explored the legal framework around capacity and the impact this has on all those it affects, and the rights and responsibilities of all those involved.
The decisions involved are defined under section 2 of the act, and broadly covers personal welfare, property and financial affairs.
The act provides for advanced planning, which all of us should be engaging in, the conference was told.
Senator Colette Kelleher told the conference that her background as both a legislator and a social worker, and her keen interest in the law, informed her view of the new legislation.
She described working with a young heroin user in a homeless shelter who refused to meet his family who were naturally anxious about him.
Overdose
Tragically, some weeks later he died of an overdose and his mother was both distraught and angry that she had not been able to see him, despite her best efforts.
The young man’s mother subsequently had both public opinion and the media on her side when she criticised the homeless shelter’s privacy policy.
Senator Kelleher had the difficult task of explaining that the young man’s privacy, will and preference were paramount and had to be honoured and respected.
The same philosophy underpins the Assisted Decision-Making (Capacity) Act 2015, Senator Kelleher said – the assumption of adult capacity to make decisions, not necessarily good ones, Senator Kelleher said.
“I fully concur with Centre for Disability Law and Policy in NUI Galway in describing the law as a paradigm shift....a major, major culture shift which has yet to work through our societal systems: in the family, in medicine, in the law, in social care, in shops, in restaurants.....does he take sugar? Assuming the person can’t or won’t know, have a preference or be able to make a decision for themselves,” Senator Kelleher said.
“This isn’t an act for a certain identifiable cohort of people,” said solicitor Aine Flynn, who is a member of the Law Society human rights committee and director of the Decision Support Service at the Mental Health Commission.
“The reach of this act is to all of us.”
The act was signed at end of 2015 but has not yet fully commenced and there are already amendments required, particularly in relation to wards of court and the complex issue of deprivation of liberty safeguards
The act also throws up questions around detention of a person under continuous supervision or control without a legal process, because establishing that someone needs to be detained in a medical setting for clinical reasons is not the same as supplying a legal process.
Complications
“In order to avoid any of the complications which the new structures present, there is everything to recommend engaging in advance planning by way of an Enduring Power of Attorney, which is significantly developed under this act,” she said, as well as the Advanced Healthcare Directive provided for in part 8 of the Act.
The Decision Support Service is now an integrated office within the Mental Health Commission, which is a new direction for the body, which is different to everything else the MHC does but nevertheless compatible with it, its director Aine Flynn said.
Appointed to the job in October 2017, Aine Flynn is a solicitor who specialised in human rights and public interest law. Her new role as director of the Decision Support Service gives her responsibility for the implementation of the 2015 act.
The Commission has the experience of taking reforming legislations and mandating for human rights norms in creating new procedures, the conference heard.
The circumstances that lead to diminished decision-making capacity don’t actually matter under the act, whether it is intellectual disability, acquired brain injury or dementia.
There isn’t a diagnostic starting point in the act, unlike legislation in England and Wales, which provides for persons with “adefect of the brain or mind”.
The designation for her office of “public guardian”was not used in the act, Aine Flynn said, a descriptor which she said would not have been appropriate because of its overly-paternalistic connotations.
Capacity
The most important point of the act is the brackets around the word capacity, Aine Flynn commented.
“Capacity and the tools for assessing capacity isn’t the foremost concern and purpose of this act.
“It is about assisted decision-making and providing supports so people can, as far as possible, arrive at their own decisions, independently,” she said.
The state now recognises that persons with disability now enjoy legal capacity on an equal basis with others in all aspects of life, the conference heard, and they have a legal capacity and entitlement to hold and exercise rights, which is the key to full participation in society.
There are tiers of assistance involved, from DMA – a decision-making assistant, a middle tier of CDM – co-decision-maker, and at the upper level if need and only if the middle tier won’t suffice, the court will move to appoint a DMR – a decision-making representative.
If a decision made could led to harm, then the co-decision-maker is not obliged to follow through on this, though they are involved to the extent that they are asked to be.
The act is not about wish-fulfilment and a person with decision-making capacity may not always be allowed to do what they want.
Rights-holders live and work in homes and communities with other right-holders and nobody gets what they want all the time, Aine Fynn said. The impact on other must also be considered.
Social and economic rights
All of one’s social and economic rights cannot be contained in one piece of legislation.
A will and preference may be expressed for a service that is not available due to resources issues, she said, such as a wish not to live in residential care.
How all this plays out when the act commences should be kept under review by all stakeholders and there is a duty to make and be receptive recommendations.
The act provides for a register to hold a record of all decisions, provides for a complaints procedure and also makes a criminal offence of ill-treatment or wilful neglect.
The conference also addressed the “pervasive myths” around the role of next-of-kin, as that designation does not give any authority in relation to healthcare decisions and only counts in succession law.
Dr Eilionóir Flynn, director of the Centre for Disability Law and Policy at NUI Galway, said that those of diminished capacity might feel pressurised to formalise existing support arrangements but there is no need to do so.
“The act strongly embeds the principle of will and preference rather than of best interest,” she said but we all know how difficult that principle can be to follow in practice.
“How do we document and monitor and make sure that everyone operating the act is respecting the will and preference of the individuals who are being supported,” she asked.
Will and preference
But respecting will and preference is not the same as having to act on those, she said, because there are economic criteria to be factored in as well as realities of life.
The act may have cost implications and potentially be subject to constitutional challenge. But the question is whether decision-maker could have to fund a court action out of their own pocket.
Dr Flynn said she detected a real appetite for training and engagement with the act but there are issues to be resolved, such as, if there is more than one decision-maker, how are conflicts to be mediated?
“Every human is communicating all the time and expressing preferences and this builds up into choice” about how an individual lives their life, she said.
Paul Alford of Inclusion Ireland shared his inspirational story of battling for self-determination in his life.
He life story offered a moving account of the innate human desire for freedom.
No autonomy
For many years he was not allowed to make decisions for himself, and had to live without choice in institutional care with no autonomy around his life and many rules to follow.
He couldn’t smoke his pipe when he wished, for instance.
“I have had great help in making big decisions,” he said. “People with disabilities can make good decisions but sometimes we need help.”
He described working for long hours for low pay in workshop settings and how he longed to travel.
“I wasn’t allowed to go outside for a last smoke of my pipe at night time,” he said.
“I didn’t like some of the people I lived with and some of them didn’t like me either,” he said.
Taking control
Things started to change when Paul began taking control of decisions in his life.
In 2005 he got a job at Inclusion Ireland earning real money.
“I love going on holidays and trips away,” he explained, “ and if I work, I should be able to go to a place where I choose myself.”
Paul took out a credit card to book a trip to China but the trip was opposed and the authorities said he should consult them first.
Paul said it was his choice.
Now he says he has “seen half the world”.
“That one great choice has enabled me to go to Australia, New Zealand, US and all over Europe.
“It was my money and my choice in life what I did,” he said.
“People shouldn’t be telling clients with disabilities where to go and what to do.
If the clients weren’t there, they wouldn’t have a job,” he said.
A meeting about independent living ‘changed my life’ said Paul and he eventually realised his dream of moving out of services to live in his own place.
“I had never lived in my own place. I had to fight hard for my right to leave,” he said.
“But it was my life, nobody else’s,” he continued, saying the best thing about independent living is that “I am the boss”.
He describes a full and varied life involving going to bingo with friends, attending Irish music sessions, participating as a walker in the local Park Run and joining in Arch Club activities.
We need this act, he said passionately.
Some carers express doubts that the work they are doing in caring for their loved ones will be subject to legal scrutiny, and that the new law will add a layer to their already burdensome lives, when they become relative, carer and now also decision-maker.
For some carers, they know that capacity does not exist in their loved ones at all.
So how is it all going to work they wondered. The act appears to ignore lack of capacity and the work of family carers, they said.
They also have concerns around “unwise decisions” and the consequences they might have, such as how to convince a loved one that gluttonous eating is unwise.
Some carers can have limited ability themselves and a fear of the legal system, the conference heard.
No imposition on carers
But no one can be compelled to become a decision-making assistant and there is no imposition on any carer to buy into the act, attendees were told.
“Sometimes parents don’t see their sons and daughters as adults when they try to transition to independent living,” another speaker told the conference.
The act is about people with disability and not their carers, he said and some carers are over-protective and don’t allow their loved one to progress,
John Dunne of the Carers’ Association agreed that carers lead a tough life but they don’t always necessarily provide the best care.
Sometimes they need support to come to the right decision. Carers may also need to be assisted in their decision-making, he said.
Judges like tests
Finally, solicitor David Stafford of MHC, pointed out that judges like tests and this act hinges on issues of capacity and there may well be a challenge to that definition.
“Judges like certainty and they like support, and they get that support from doctors such as psychiatrists or geriatricians.
“What guidelines are those experts going to have from the Mental Health Commission?” he asked.
“In my experience as a solicitor working in the area, you will have to have legal certainty in relation to the definition of what capacity means, what the test is and how that test is going to be decided by a court,” he said.
Courts will hear psychiatric reports and will be guided in their decisions by professional input but he pointed out that there is a difference between a legal definition of capacity and a medical one.
Stafford, who practises in this area, foresees a great deal of legal challenge to the new act. “The Circuit Court won’t be able to make law in the area, whereas the High Court will,” he told the Gazette.
“This is a very serious piece of legislation. One case with peculiar facts could blow it up.
“But it’s a good step in the right direction that there is certainty in this area,” he said.
- See photographs from the conference here