Warning over ‘assisted decision-making’ plans in new Bill

‘We have the rare opportunity to provide an advanced legal framework for securing the rights of citizens in need of decision-making support and safeguards’

‘We are concerned that, in its current form, residues remain of the paternalist “substituted decision-making” model of the old system.’ Photograph: Getty Images

‘We are concerned that, in its current form, residues remain of the paternalist “substituted decision-making” model of the old system.’ Photograph: Getty Images

 

The announcement that the Assisted Decision-Making (Capacity) Bill reached committee stage on Wednesday likely came as a relief for thousands of people and their families. The Bill aims to secure the rights and dignity of older persons and people with disabilities, including mental health service users and those with Alzheimer’s, who may require support and safeguards with decision-making.

All the more reason therefore that we get it right.

The Bill aims to legally recognise forms of “supported decision-making”. The Centre for Disability Law and Policy has contributed to the development of the Bill with more than 15 organisations representing people with disabilities, older persons and mental health service users.

The Department of Justice has engaged with this coalition, and we were pleased to learn that Minister for Justice Frances Fitzgerald recently sought to introduce changes to the Bill. This includes a move to repeal the “wards of court” system. Such a move would consign the Lunacy Regulation Act, 1871 to the dustbin of history. And rightly so.

But we are concerned that, in its current form, residues remain of the paternalist “substituted decision-making” model of the old system.

Troubling

Currently, the Bill makes a person’s ability to enter into different support arrangements contingent on the individual’s mental capacity. This is troubling when it comes to the appointment of a “decision-making assistant”.

A decision-making assistance agreement is provided under the Bill for a person who wishes to appoint a supporter who helps him or her to make decisions. This will clarify for all concerned – including families, banks and other third parties – that the person is an equal and a peer who may require support but whose decisions are to be respected.

Yet in the Bill’s current form, a person will be ineligible to appoint an assistant for a decision if she is seen to lack mental capacity in that area.

The term “mental capacity” was changed in Wednesday’s debate to “decision-making capacity”, but the definition of the concept remains the same.

This requirement goes against international human rights standards which call for a move away from decision-making capacity assessments. Such assessments establish a standard for decision-making that is unequally applied to people with disability and older persons. None of us makes decisions in a purely rational, calculated manner when it comes to major life decisions. So should we really apply such standards to people with disabilities and then strip them of certain rights on this basis?

The test set out in the Bill would require that a person “understands and retains the information long enough to make a decision, weighs up the information available, and communicates the decision”.

We are not suggesting that an assistant should be provided against a person’s wishes. We also agree safeguards are needed to ensure that assistants and others fulfil their duties and do not abuse or exploit the person they are supporting. Instead, we are arguing that decision-making assistance agreements should be a viable option for all adults – including those with more complex disabilities.

Autonomy

Decision-making assistance agreements are the best way for adults to maintain their autonomy, while acknowledging that many of us, at different times in our life, require decision-making support.

The coalition of organisations has identified other concerns about the Bill, which we have made clear to the Department of Justice. These include the potential for human rights violations in the powers granted to informal decision-makers, who can make a wide range of decisions about people who they believe to lack decision-making capacity without any oversight or scrutiny from the courts or other state bodies.

While we hoped to see these matters addressed, we are disappointed to see that some of the language has been altered while the substance remains the same; paternalism and “substituted decision-making” appear to have crept in the back door. We are also concerned about the impact the Bill will have on other areas of law, including sexual offences, jury service and mental health legislation.

The Department of Justice will now be tasked with ensuring robust mechanisms are in place for preventing the Bill sliding back to the status quo of expert-driven paternalism and overly bureaucratic pathways to support.

Valuable innovation

The Bill has the potential to create a valuable innovation in Irish law. We have a rare opportunity to provide a legal framework for securing the rights of citizens in need of decision-making support and safeguards. We hope the amendments introduced at committee stage and the measures to implement the Bill will harmonise Irish law with global standards for the human rights of older persons and people with disabilities.

However, based on the amendments proposed by the Department of Justice, more action is needed to fully respect the human rights of adults who use support to make decisions.

Dr Eilionóir Flynn is acting director and Dr Piers Gooding a research associate at the Centre for Disability Law and Policy at the National University of Ireland, Galway

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