We have legal change on decision making... now we need cultural change

SAGE Advocacy has highlighted an information resource to help people understand new landmark laws relating to capacity to make decisions – which came into effect on April 26.

The Assisted Decision Making Acts replace the much criticised ‘Lunacy Regulation Act’ of 1871 and the associated Wards of Court system.

The new laws have guiding principles of which the most important is a presumption of capacity to make decisions.

The law also places responsibility on health and social care professionals and legal, financial and public services to be proactive in assisting people’s decision making as much as possible.

The new laws will be relevant to all families at certain times, and a very wide range of professionals and service providers in their routine work.

They are of particular importance for people who live with frailty, dementia, an intellectual disability, an acquired brain injury, or who communicate differently – and their close family and friends – as they set out a new tiered approach of differing levels of assistance with decision-making.

Sage Advocacy was established in 2014 as a support and advocacy service for older people by the HSE and The Atlantic Philanthropies and is now the National Advocacy Service for Older People. In 2022 it provided support and advocacy to almost 5,000 people with 26 staff and 33 volunteers.

The ADM Acts mark a radical change in Irish legislation and Sage Advocacy, which has been campaigning for this legislation since 2014, has developed a public and professional awareness video called ‘Minding your Marble’s to explain it.

The video provides a clear guide to the different levels of support for decision-making and guidance in supporting a person who might have diminished capacity to make decisions using an approach called ALERT. Minding Your Marbles is now available at www.sageadvocacy.ie.

In thinking about how best to explain the new legislation Sage Advocacy considered phrases people use in everyday life to describe problems with remembering and forgetfulness. In such situations people may say ’I must be losing my marbles’.

This legislation is all about ‘Minding Your Marbles’ and ensuring that others, including family members and health and social care professionals, do not start making decisions in our ‘best interests’.

We are all now obliged to assist people with making a particular decision and not to presume that because a person might need support that they lack capacity to make the decision.

Sometimes when people talk about ‘best interests’ they are overly influenced by their own interests or the interests of service providers. The Assisted Decision Making (Capacity) Acts will, in practice, help people to ‘mind their marbles’.

I really encourage the public to view this video to help understand these legislative changes as they will affect all families at some point in the future.

The new laws include Guiding Principles which are:

· Presume each person’s capacity to make each decision

· Take all practicable steps to support a person with making a decision

· No intervention unless necessary

· An unwise decision does not mean that a person is unable to make a decision

· Minimal restriction on a person’s rights and freedom of action

· Regard to a person’s rights to dignity, bodily integrity, privacy, autonomy and control over their financial affairs and property

· Any assistance must be limited in duration, proportionate, facilitate participation and take into account past and present will and preferences and beliefs and values.

The legislation is of considerable importance for health and social care professionals, and also for those providing financial and legal services. There will be codes of practice for all of these and, significantly, there will also be a code of practice for independent advocates.

A new Agency called the Decision Support Service (DSS) has been established and it is responsible for promoting public awareness and oversight of the formal decision support arrangements.

When a person needs support to make a decision the Acts provide for five different assistance arrangements:

1. A Decision-Making Assistant

2. A Co-Decision Maker

3. A Decision-Making Representative.

4. An Attorney appointed under an Enduring Power of Attorney (EPA).

5. A Designated Healthcare Representative.

More details on these different tiers can be found in the information video.

The Assisted Decision Making (Capacity) Act was passed in 2015 but it has taken until 2023 to implement it. Amending legislation was required in 2022 and collectively they are now known as the Assisted Decision Making (Capacity) Acts, or ADM Acts for short.

The coming into effect of the new legislation means that all those who are currently Wards of Court (approximately 2,000 cases) will have their cases reviewed during the next three years.

Also Advance Healthcare Directives are now covered by legislation for the first time, and Powers of Attorney arrangements are also being refined.

Over 150 years later, much later than most other developed countries, we now have legislation reflecting the ‘democratic instincts of our time’. The Assisted Decision-Making Capacity Acts place an onus on all of us to presume, and assist if necessary, each persons’ capacity to make their own decisions.

We must always remember that any diminution in decision making abilities does not mean a diminution in rights. We have legal change, what we need now is culture change.

View Minding Your Marbles at www.sageadvocacy.ie