Assisted Decision Making (Capacity) Act NMPDU Cork 6 th February 2018

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Assisted Decision Making (Capacity) Act 2015 NMPDU Cork 6 th February 2018

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

A different view of decision making https://www.youtube.com/watch?v=jrzlnq C6oRs

1871 Lunacy Act The Journey 2003 Who Decides & How 2003 The Law & the Elderly (LRC) 2005 Vulnerable Adults & the Law (LRC) 2007 Ireland signed the CRPD 2008 Mental Capacity & Guardianship Bill 2009 Bioethics Advance Healthcare Directives (LRC) 2013 Assisted Decision-Making Bill 2015 Assisted Decision-Making (Capacity) Act

Assisted Decision Making (Capacity) Act 2015 Signed by President Dec 30, 2015 Some sections have commenced. It s capacity Jim, but not as we know it

Sections which have commenced Section which establishes the Decision Support Service Appointment of the Director- Ms. Áine Flynn Establishment of the Advance Healthcare Directives Multi-Disciplinary Working Group

Update on Commencement: Director of the DSS started on 2 nd October 2017 Ms. Áine Flynn Drafting of codes of practice well underway Decision Support Service now being set up

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

Codes of practice Supported decision making and assessing capacity Interveners (x 3) Attorneys General Visitors and Special Visitors Advocates Health and social care professionals Legal professionals Financial professionals Advance Healthcare Directives (x 3)

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 decisionmaking 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 Assisted Decision Making Act 2015 The National Consent Policy, 2013 Safeguarding Vulnerable Persons at Risk of Abuse, HSE, 2014 HSE Open Disclosure Policy, 2014 Mental Health Act 2001 Nursing Homes Support Scheme-A Fair Deal, 2012 Not an exhaustive list. Your Service Your Say

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 Minimises 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 My decisionmaking assistant can help me access information, or support me to understand, make or express decisions I can make my own decisions, but I require support I can choose who I want to be my decision-making assistant

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. Director of the DSS is notified of the agreement

Co-Decision-Maker A suitable codecision-maker is someone who knows me well, like a close friend or family member My co-decisionmaker helps me jointly make decisions about my welfare, property or affairs We have a written agreement that is witnessed by two people My will and preference 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; Registered and review by Director

Decision-Making Representative The court makes a declaration that I lack capacity The court takes my will and preference into account and the relationship and compatibility between the person and the proposed DMR My DMR is appointed by the Circuit Court to make one, or more than one, specified decisions The court might make the decision if the matter is urgent or it is expedient to do so

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 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. Can appoint a designated healthcare representative to ensure that the terms of the AHD are adhered to

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

Registers and Panels Director shall establish and maintain a Register Co-Decision-Making Agreements Decision-Making Representation Orders Enduring Powers of Attorney Advance Healthcare Directives Director shall establish a panel of suitable persons willing and able to act as Decision-Making representatives Special visitors General visitors and Court Friends

Summary- Scope of Provisions When a person has capacity and can make plans / appointments Enduring Power of Attorney Advance Healthcare Directive Decision-Making Assistant - person has capacity but needs assistance

When a person does not have capacity or capacity is in question Co-Decision-Maker Personal appointment with oversight Can decide if assistance from co-decision-maker Decision-Making Representative Court appointment Person does not have capacity to decide Court (oversight if disagreements, seeking expert reports, declarations, interim orders, reviews)

It s the Law but Key issues Resources and Commencement

Protections for staff Unwise decisions- document your concerns and what steps you have taken Interveners only have legal effect if registered Registered agreements- will require a 24/7 database for health and social care professionals Acting in good faith and for the benefit of the person

Thousands of elderly and vulnerable people in nursing homes and other residential facilities are being detained without legal authority and will have to have their cases reviewed by the courts or specialist tribunals. Irish Examiner, January 8 th 2018

Deprivation of Liberty Proposed safeguards for older people, persons with a disability and certain categories of people with mental health issues to ensure that they are not unlawfully deprived of their liberty in residential facilities. http://health.gov.ie/consultations/

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

Thank you