Assisted Decision Making (Capacity) Act 2015 Complaint Officer Training 23rd October 2017

What the presentation will cover? About the Act Key aspects of the Act What is capacity? Who are the legally recognised persons? Key issues

The Journey 1871 Lunacy Act 2003 Who Decides & How 2003 The Law & the Elderly (LRC) 2005 Vulnerable Adults & the Law 2007 Ireland signed the CRPD 2008 Mental Capacity & Guardianship Bill 2013 Assisted Decision-Making Bill 2015 Assisted Decision-Making (Capacity) Act

Assisted Decision Making (Capacity) Act 2015 Signed by President 30th December 2015 Some sections have commenced Section that establishes the Decision Support Service Appointment of the Director of the DSS Establishment of the Advance Healthcare Directives Multi-Disciplinary Working Group “It’s capacity Jim, but not as we know it”

Codes and regulations 13 statutory codes of practice - legally binding Number of regulations

Who is the Legislation For? The Assisted Decision Making (Capacity) Act 2015 applies to everyone over the age of 18.

Who in Particular? It applies to a person whose decision-making capacity is being called into question, or may shortly be called into question in respect of one or more than one matters.

Annually.... 10,000 people affected by stroke 10,000 sustain a traumatic brain injury 41,500 affected by dementia (projected to double in next 20 years) 1 in 4 affected by a mental health condition

Capacity is not a constant or a lifetime guarantee

What Does it Say? It places a legal requirement on service providers to help a person to make a decision through the provision of a range of supports and information appropriate to their condition.

Key components Functional approach to capacity Establishment of the Decision Support Service Legally recognised persons: Assisted decision-maker Co-decision-maker, Decision-making representative Enduring Power of Attorney Designated Healthcare Representative Abolition of Wardship system Revision of Enduring Power of Attorney system Advance Healthcare Directives

Governance- The Decision Support Service Promote awareness of the Act Provide information to people in relation to their options under the Act for exercising their capacity Provide information to, and provide legal oversight of the legally recognised persons Make recommendations to the Minister on any matter relating to the operation of the Act

What’s happening now? Definition of Capacity – not defined in legislation National policies not uniformly followed in practice Presumption of Capacity – at common law Often ignored in practice Next of kin No general authority Limited emphasis on person’s individual rights and wishes

What’s happening now? Right to privacy and confidentiality Often ignored in practice Advance Healthcare directives Legally valid and recognised by courts But no statutory provision/legal uncertainty People still being registered for Wardship (13 per week)

Interface with existing legislation, national policy and internal policies and procedures e.g. The National Consent Policy, 2013 The Assisted Decision Making Act 2015 Safeguarding Vulnerable Persons at Risk of Abuse, HSE, 2014 HSE Open Disclosure Policy, 2014 The Assisted Decision Making (Capacity) Act 2015 has a direct impact on a number of existing policies, schemes and guidelines in operation in health and social care services that will need to be aligned with the general principles of the legislation which includes the following (this list is not exhaustive) In particular the National Consent Policy revision will be informed by the development of ADM guidance as Capacity is one of the constituent elements of a valid and genuine consent process. Mental Health Act 2001 Nursing Homes Support Scheme-A Fair Deal, 2012 Your Service Your Say Not an exhaustive list….

Presumption It is presumed that the person has capacity to make their own decisions, unless it is proved otherwise

Support to Make a Decision Everyone has the right to be supported to make decisions

Unwise Decisions An unwise decision does not indicate a lack of capacity

Accessible Information A person has the right to have accessible information in relation to a particular decision More time to understand information And information in a range of different formats to maximise understanding (e.g. easy to read, audio, video, text, pictures).

Legally Recognised Persons The Act provides for legally recognised persons referred to as ‘interveners’ to support a person to maximise their decision making capacity

Retention for Short Periods The fact that a person is able to retain information for a short period only does not prevent him/her from being regarded as having capacity to make the decision

Least Restrictive Interventions There shall be no intervention unless it is necessary to do so. Any intervention must be in a manner that: Minimises any restrictions on a person’s rights Minimised any restrictions on freedom of action Is as limited in duration as possible Is proportionate to the significance and urgency Is for the benefit of the person

What is Capacity? Capacity is defined as the person’s ability to understand, at the time that a decision is to be made, the nature and consequences of the decision to be made by him or her in the context of the available choices at that time

Functional Assessment of Capacity The functional test focuses on how the decision is made, rather than the outcome or the consequence of the decision. Functional approach is issue, context and time specific

Functional Assessment of Capacity The functional test states that a person is unable to make a decision for himself if he is unable: To understand the information relevant to the decision; To retain that information for long enough to make a choice; To use or weigh that information as part of the process of making the decision; or To communicate their decision (whether by talking, sign language, using technology or any other means).

Will and Preference If there is concern that someone lacks capacity to make a decision, it is essential that their past will and preferences are taken into consideration – what they would have wanted to happen before they lost capacity is of importance. The beliefs and values that that person held will have to influence any decision made.

Abolition of the Wards of Court The Wards of Court system will be abolished. There will be a review of all existing wards to either discharge them fully or to transition those who still need assistance to one of the new decision-making arrangements provided for under the Act. This will happen within 3 years of the Act being commenced.

Who are the Legally Recognised Persons? Decision-Making Assistant Co-Decision-Maker Decision-Making Representative Enduring Power of Attorney Designated Healthcare Representative

Decision-Making Assistant Where a person thinks that their capacity may be called into question, they can appoint a Decision-Making Assistant (e.g. a family member) to assist them to access information or to understand, make or express decisions about their welfare, property or affairs The Decision-Making Assistant will not make the decision on behalf of the person, the decision will be made by the person only.

Decision Making Assistant A Decision Making Assistant is appointed through a formal Decision Making Assistance Agreement. The Agreement may be revoked at any time by either party, or changed with the consent of both parties.

Co-Decision-Maker Where a person thinks that their capacity may be called into question, they can appoint a co-decision-maker to help them jointly make decisions about their welfare, property or affairs A suitable co-decision-maker is someone who knows the person well and whom they have a relationship of trust with, built over time e.g. a close friend, family member etc

Co-Decision Maker Decisions are made jointly with the co-decision maker The co decision maker must ensure that the person has all necessary information in relation to the decision(s) being made, including alternatives and likely outcomes The will and preference of the person should be established as far as possible

Co-Decision Maker - Oversight Written agreement, two witnesses Statement by a registered medical practitioner and such other healthcare professional as shall be prescribed that the appointer: Has capacity to decide to enter co-decision-making agreement, Requires assistance in exercising decision-making in respect of the relevant decisions in the agreement, and Has capacity to make the relevant decisions specified in the co-decision-making agreement with the assistance of the co-decision-maker; Register and review by Director

Decision-Making Representative Appointed by order of the Circuit Court for the purposes of making one or more specified decisions in relation to a person’s personal welfare (including healthcare) or his/her property and affairs. Alternatively appointed generally to make all decisions on behalf of a person.

Decision-Making Representative - Oversight Court makes a declaration that relevant person lacks capacity Court may make an order to: Make the decision/s if satisfied matter is urgent or it is expedient to do so Appoint a Decision-Making Representative In making an order, the court takes account of any EPA/AHD and insures terms are not inconsistent with EPA/AHD

Decision-Making Representative - Oversight In appointing Decision-Making Representative the court will have regard to: The known will and preferences of the person Desirability of preserving existing relationships within family Relationship/Compatibility between the person and the proposed representative Whether proposed representative will be able to perform functions Any conflict of interest

Enduring Power of Attorney An Enduring Power of Attorney (EPA) is an arrangement whereby a Donor (the person who may lack capacity in the future) gives a general power to an Attorney (the person providing assistance) to act on their behalf. This may be in respect of all or some of the person’s property and affairs, or to do specified things on the person’s behalf.

Enduring Power of Attorney The EPA only comes into effect when registered with the Decision Support Service. An objection can be made to the Director of Decision Support Service to the registration of an EPA for a number of reasons: the unsuitability of the attorney fraud or undue pressure was used to induce the donor to create the EPA.

Advance Healthcare Directives Sometimes known as a living will Statement about the type and extent of medical or surgical treatment you want in the future Comes into effect when you lack capacity

Advance Healthcare Directives Can appoint a designated healthcare representative to ensure that the terms of the AHD are adhered to. The person making the directive can refuse medical treatment in advance provided the conditions set out in the Act are satisfied. The directive must be in writing, signed and witnessed.

Designated Healthcare Representative Legally recognised as acting on the person’s behalf at a time when she / he loses capacity Has the power to ensure that the terms of the AHD are complied with May also be given general power to consent to and refuse treatment up to and including the refusal of life-sustaining treatment Must keep a written record of all decisions made Can’t delegate their powers to someone else

Resources and Commencement It’s the Law…but Key issues Resources and Commencement

Implications for Practice The Act: Requires staff to have a robust understanding of the presumption of capacity as a starting position in decision making Requires staff to exhaust all possibilities to enable a person to make and communicate a decision Requires staff to identify when a person may need a legally recognised support to make a decision

Implications for Practice cont… Requires staff to assess capacity using an entirely new framework Requires staff to support a persons Advance Healthcare Directive Requires staff to gain consent from the person only, or those who have the legal authority to act for the person

Challenges for Services Low level of understanding of the impact of the Act in the system Staff may misinterpret the spirit of the legislation Prevailing culture of the use of third party consent Large number of policies and procedures that need to be amended to comply with the Act May be an increase in the numbers of inappropriate requests for capacity tests (without evidential proof)

Challenges for Services cont… 2016-2017 rise in applications to the Ward of Court process Dissolution of the Ward of Court system will have significant implications for some services New models of autonomy may be a challenge for staff and families Forthcoming legislation on Deprivation of Liberty will have significant implications for particular services and practices

Update on Commencement: Director of the DSS started on 2nd October – Aine Flynn Drafting of 12 codes now underway DSS will be established once Director is in place

Helpful resources www.assisteddecisionmaking.ie www.scie.co.uk www.autonomy.co.uk https://www.hiqa.ie/publications/supporting-people’s-autonomy-guidance-document www.39essex.com www.courtofprotectionhub.uk/cases

Citizens Information Relate document http://www Inclusion Ireland easy to read guidance on the Act http://www.inclusionireland.ie/sites/default/files/attach/basic-page/991/assisted-decision-making-act-factsheet.pdf Law Society Gazette https://www.lawsociety.ie/Documents/Gazette/Gazette%202016/march-16-gazette.pdf#page=47 HSE Safeguarding Policy https://www.hse.ie/eng/services/publications/corporate/personsatriskofabuse.pdf SAGE website http://www.thirdageireland.ie/sage/resources/capacity-legislation-information

Questions or support: National ADM Office Jacqueline Grogan- jacqueline.grogan@hse.ie Caoimhe Gleeson- caoimhe.gleeson@hse.ie Marie Tighe- marie.tighe1@hse.ie

Thank you