Table of Contents

Assisted Decision-Making (Capacity) Act 2015 - Guidance Information

  • What is Assisted Decision-Making?

    This is when a person whose capacity to make a decision is in question. A person can be appointed to assist, co-decide or, if needed, to represent them for the purpose of making a decision.

  • What is the Assisted Decision-Making (Capacity) Act?

    The Act created a new system to support people to make decisions and repealed the Lunacy Act of 1871. (The Ward of Court System). The Act allows for several new support structures as well as Advance Healthcare Directives and changes to the Power of Attorney system.

    A new office called the Decision Support Service (DSS) is established and is run by the Director of the DSS. This office is situated within the Mental Health Commission. The Director will have a role in public awareness, information, and guidance, developing codes of practice, advising state bodies, making investigations, and keeping records and reports.

  • Who does the Assisted Decision-Making Act Affect?

    The new Act applies to any person whose decision-making capacity is in question. Anybody may need to use the provisions of the Act at one time or another.

  • What is Capacity?

    The Act defines Capacity as ‘decision-making capacity’ and it is the 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.

  • Why might my capacity be ‘in question’?

    Everyone is to be presumed to be able to make all decisions. A person may lack capacity to make a particular decision at a particular time.

    A functional test can be used to assess a person’s capacity to make a decision, and this means that the person has the ability to understand the nature and consequences of the decision in the context of the available choices at that time.

  • How is capacity decided?

    A person can be said to lack capacity to make a decision if they are not able to

    • understand the information relevant to the decision,
    • retain that information long enough to make a voluntary choice,
    • use or weigh that information as part of the process of making the decision,
    • communicate his or her decision in whatever way they communicate (not only verbally).

    Communication includes talking, writing, using sign language, assistive technology, or any other means. Information relevant to the decision must be given in a way the person can understand e.g. using clear language, visual aids etc.

  • What decisions are covered?

    Most decisions are covered and fall under the Act including financial or medical decisions. Decisions relating to marriage or divorce, adoption, jury membership and sexual relationships are covered by different laws.

  • Does the Act apply to children?

    No. The Act only applies to people over 18. Parents or guardians remain as decisions makers for children unless they are currently a Ward of Court. If a person requires decision-making support when they reach 18 years of age they can avail of one of the new support arrangements.

  • What new decision-making supports does the Act create?

    The Act creates a number of support arrangements: decision-making assistant, co-decision-maker and decision-making representative. These are explained below.

  • What is a decision-making assistant?

    Where the person needs support to make certain decisions on their own

    A person whose capacity is in question or will shortly be in question chooses another person to assist them in making decisions. The person should be a relative or friend of the appointer, who has had such personal contact over such period of time that a relationship of trust exists between them A decision-making agreement is drawn up to say what decisions are involved.

    The decisions can be about property personal welfare or both. A person can have more than one decision-making assistant to act separately or jointly on some matters. The assistant will assist the person making the decision to get the information needed to make the decision, explain the information to the person and get the person’s will and preference in relation to the decision.

    With this support, the person makes the decision on their own. The assistant will also communicate the decision if necessary and follow up on the decision to ensure it is implemented.

  • What is co-decision-making?

    Where the person has the capacity but is unable to make certain decisions on their own.

    A person chooses a person to jointly make one or more decisions, on personal welfare or property and affairs. The person should be a relative or friend of the appointer who has had such personal contact over such a period of time that a relationship of trust exists between them.

    The co-decision-maker will get the information needed to make a decision, advise on decisions, and make the decision together with the person based on their will and preferences. The co-decision maker will help the person express a decision and ensure that the decisions are implemented. The role must be approved and reviewed by the Decision Support Service.

  • What is decision-making representation?

    Where the person is unable to make certain decisions even with someone else’s support.

    The role of the decision-making representative is to make decisions on personal welfare or property and affairs. The representative must make decisions based on the will and preferences of the person. The representative must send reports to the Director of the Decision Support Service and keep accounts and records.

    Someone wishing to be a representative must apply to the court for decision-making powers. A representative will only be appointed if an assistant or co-decision maker is not suitable or available. The court will consider the will and preferences of the individual, family structures and the suitability of the applicant.

  • What is an Advance Healthcare Directive (AHD)?

    This allows a person with the capacity to write down their preference around healthcare treatment in case they lack capacity in the future. A valid AHD will not be invalidated even if it appears unwise or will result in death.

    Refusal of treatment will be complied with provided that the person had capacity at the time it was written, and the AHD is clear. Requests for treatment are not legally binding but must be considered. AHDs are not applicable to mental health treatments.

  • What is a Power of Attorney?

    A power of attorney is where a person gives another person(s) power to make decisions relating to personal welfare or property affairs, or both. An enduring power of attorney is designed to take effect at a future time when the person lacks capacity.

  • What about ‘informal decision-making’?

    The Act provides for thought, support and assistance in the first assistance. It provides for new tiers of support which are problem-solving tools, not mandatory interventions. A person is presumed to have the capacity to make decisions unless proven otherwise.

    Interventions should only be taken when all practicable steps have been taken without success and it is necessary to do so.

  • What happens to people who are currently Wards of Court?

    With the commencement of the Assisted Decision-making Act the Ward of Court system is repealed or cancelled. This means that there cannot be any new applications to make a person a Ward of Court.

    People who are already Ward of court will remain Ward of Court but must be reviewed within 3 years. After this review, former Wards must resume their own affairs of moving to one of the support structures, depending on their support needs. There will still be a Wards of Court system for minors (those under 18).

Information correct as of August 2023; the information contained is a summary and subject to change.

The Assisted Decision Making (Capacity) Act 2015 – Easy to Read Guidance

Download Easy to read Guide

Assisted Decision Making – Train the Trainer Manual and Resources

Download Train the Trainer Manual

Assisted Decision-Making – FAQ's

  • What is a decision?

    A decision is a choice that you make about something after thinking about several possibilities. Cambridge English Dictionary

    or

    A decision is a choice or judgement that you make after thinking and talking about what is the best thing to do. Oxford English Dictionary

  • What is a choice?

    A choice is an act of choosing between two or more possibilities. Oxford English Dictionary

    We often use the words decision and choice interchangeably.

    A decision can be the same as choice when it is deciding between pre-existing or provided alternatives.

  • What is the definition of capacity in the Assisted Decision-Making (Capacity) Act 2015?

    “capacity” means decision-making capacity.

    For the purposes of the Act, a person’s decision-making capacity shall be assessed on the basis of his or her 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.

  • What is meant by “the presumption of capacity”?

    Presumption is defined as a belief on reasonable grounds or probable evidence. Dictionary.com

    The Assisted Decision-Making Act says that “a person is presumed to have capacity – in relation to the matter concerned – unless the contrary is shown.”

    Guidance explains this as – a person is presumed to have capacity to make decisions unless proven otherwise. The person does not have to ‘prove’ their capacity. The burden of proving a lack of capacity to make a particular decision always lies upon the person who considers that it may be necessary to make a decision on their behalf (or will invite a court to take such a decision). The Act does not specify who exactly should access capacity.

  • Under the ADM Act what is a functional assessment of capacity?

    A person has the capacity to make a decision if he or she can –

    • understand the information relevant to the decision
    • retain that information long enough to make a voluntary choice,
    • use or weigh that information as part of the process of making the decision, and
    • communicate his or her decision (whether by talking, writing, using sign language, assistive technology, or any other means) or, if the implementation of the decision requires the act of a third party, to communicate by any means with that third party.

  • How do I know if someone is considered able to retain information long enough to make a choice?

    In relation to retaining information, the HSE Consent Policy says that –

    • The person should be able to retain the relevant information for long enough to be able to use and weigh up the information to reach and communicate a decision.
    • A consistent response may be sufficient as evidence that the person is able to retain information.
    • It may be necessary to talk to the relevant person on more than one occasion. it may be useful to use memory aids

  • What is meant by weighing up the relevant information?

    In relation to “weighing up the information” the HSE Consent Policy says that –

    • The standard of weighing up information should not be set too high.
    • The person should be able to demonstrate that they have considered relevant information in the decision-making process.
    • It is sometimes helpful to explore if they would change their decision if additional information, is offered. For example, “if this decision could result in you suffering serious medical consequences or death, would you consider doing something different?”

  • Does a person have the right to make an unwise decision?

    A guiding principle of the Assisted Decision-making (Capacity) Act is – Don’t assume a person lacks capacity just because of an unwise decision.

    An unwise decision does not mean you can presume a person lacks capacity, but this is not the same as a right to make an unwise decision. In the context of healthcare decisions, the HSE Consent Policy says that it may be helpful to explore the reasons for making their decision in more detail, for example by asking about values and beliefs, their will and preferences, what matters most to the person that might influence apparently irrational or unwise decisions. For example, something a healthcare worker feels is most important, such as physical safety, for example, may be outweighed by a person’s desire for independence.

  • How can you maximise a person’s capacity to make a decision?

    The HSE Consent Policy explains that you should –

    • Provide enough information in a manner that can be understood
    • Take measures to support communication with the person
    • Some persons may wish to have someone close to them or an advocate present during discussions and this should be facilitated where possible (consent to the person being present?)
    • Ask the person or someone close to them if there are supports that could be provided to help understand, retain, and respond to the information e.g., Communication supports, accessible documentation
    • Involve people who have a close, ongoing personal relationship with the person such as family or friends

  • When may a person’s capacity be in question?

    According to the HSE Consent Policy 2022, indications that a person’s capacity may be in question may include –

    • They are unable to communicate a clear and consistent choice;
    • They make a decision that seems out of character, inconsistent with their known will and preferences or previously expressed wishes;
    • They make a decision that seems objectively unwise – that is, one that cannot be understood by reference to his or her individual circumstances or wishes and beliefs – or irrational;
    • The decision they propose to make goes against reasonable advice, without justification;

    It is important to note that this is not a definition of capacity; these are indications that a question may need to be asked.

  • When should a capacity assessment be carried out?

    When in doubt – According to the HSE Consent Policy, in most situations where a person’s capacity is in question, the doubt should be resolved by a timely assessment.

    When there are reasonable grounds – An assessment can be intrusive. According to the HSE Consent Policy, there should be reasonable grounds (reasons) to think the person needs their capacity assessed before doing so.

  • Ask is the assessment reasonable or proportionate?

    It is important to consider if the assessment or the proposed intervention is realistic or proportionate. There may be situations where capacity is in doubt, but the person’s will and preference is clear and proceeding with the intervention would not be realistic or proportionate. In such a situation carrying out an assessment is not advised.

  • What if the person cannot consent to the assessment of capacity?

    The HSE Consent Policy advises that if person cannot consent to the assessment of capacity the Healthcare Worker must act in good faith and determine if the assessment is likely to be for the benefit of the person.

  • What happens where there is disagreement between professionals regarding the capacity of a person to decide?

    The HSE Consent Policy 2022 says that many disagreements can be resolved with discussion and further assessment. Rarely it may be necessary to look for legal advice or recourse to the court.

  • Useful Resources

    Decision Support Service Website
    https://decisionsupportservice.ie/

    Citizens Information Service – Assisted Decision-Making (Capacity) Act 2015
    https://www.citizensinformation.ie/en/health/legal-matters-and-health/assisted-decision-making-act/

    Family Carers Ireland – A Practical Guide for Family Carers on the
    Assisted Decision-Making (Capacity) Act 2015
    https://familycarers.ie/media/3012/a-practical-guide-for-family-carers-on-the-assisted-decision-making-capacity-act-2015.pdf

Data Protection including Sharing of Information

  • What is GDPR?

    The General Data Protection Regulation (GDPR) (EU) 2016/679 is a regulation on data protection and privacy for all individuals within the European Union. It came into force across the European Union on 25 May 2018. It forms the basis of our Data Protection laws, the Data Protection Acts 1988-2018.

    A data controller who holds information about you must:

    • get and use the information fairly.
    • keep it for only one or more clearly stated and lawful purposes.
    • use and make known this information only in ways that are in keeping with these purposes and keep the information safe.
    • make sure that the information is factually correct, complete, and up to date.
    • make sure that there is enough information – but not too much – and that it is relevant.
    • keep the information for no longer than is needed for the reason stated, and
    • give you a copy of your personal information when you ask for it

    Source: Source: Data Protection Basics – Data Protection Commission 2019

  • When does data protection law (GDPR) apply?

    Data protection law only applies where personal information is processed by ‘automated means’ (such as electronically) or as part of some other sort of filing system. Personal data doesn’t have to be in written form, it can also be information about what a data subject looks or sounds like, for example photos or audio or video recordings.

  • What is not covered by data protection law (GDPR)?

    Processing data for personal or household activities is not covered by GDPR

    GDPR does not apply to the processing of personal data by an individual for ‘purely personal or household’ activities, with no connection to a professional or commercial activity.

    This is sometimes known as the ‘personal/household/domestic exemption’. This might cover activities such as correspondence, keeping an address book, or certain social networking, where these activities are purely personal.

    Source: Data Protection Basics – Data Protection Commission 2019

  • Is a conversation or telephone call subject to data protection laws (GDPR)?

    Irish and British courts have upheld that talking or purely verbal communication, where the information is not processed electronically or manually, is not covered by the data protection laws.

    “In determining the appeal, the court held that a purely verbal communication was not a communication for the purposes of the GDPR “as it cannot reasonably be interpreted as falling within the definition of Material Scope as outlined in Article 2”. However, a barrister’s notes were sufficient to constitute a filing system even if the notes were later disposed of.”

    Source: Court case – Scott v. Data Protection Commissioner (No. 2) [2022] IECC 5 Reported in Irish Legal News, article by Killian Flood BL – 2/12/2022

  • Does an organisation or service need my consent to process my personal information?

    An organisation must have a valid and legal reason or a “legal basis” to process your personal information.

    Consent is perhaps the most well-known reason to process personal information, but it is not the only legal basis for processing personal data or even the most appropriate in many cases.

    There are 6 legal basis for collecting or processing personal data.

    1. Contractual necessity – under terms of an agreed contract
    2. Compliance with a legal obligation – for example: a GP’s legal duty to care for a patient
    3. Protecting vital interests –essential for the life of the person or other people
    4. Tasks carried out in public interest/by an official authority example: HSE providing healthcare
    5. Legitimate interest – examples: fraud prevention, public security
    6. Consent: Where consent is needed for data collection or processing it must be freely given, specific, informed, and an unambiguous indication of the person’s wishes, by statement or by a clear affirmative action.

    Source: Data Protection Basics – Data Protection Commission 2019

    The HSE does not use consent as the legal basis to process personal data when it relates to providing healthcare services. The HSE can process personal data as a provider of healthcare services as these are tasks carried out a) by the HSE as an official authority and in the public interest and b) to protect vital interests. Healthcare services include health and personal social services.

    “The HSE does not require consent to process personal and special category data when it relates to providing healthcare services.”

    Source: HSE Staff Procedures and Guidelines – Data Protection 2023

    Service users should be informed of how their personal health information is used. Consent is required to use their information for any purpose other than the delivery of care.”

    Source: HIQA Guidance on Information Governance 2017

  • More Information

    Data Protection Acts 1988-2018.

    Data Protection Basics – Data Protection Commission 2019

    Data Protection: HSE Staff Procedures and Guidelines – Legal Basis to use Personal Information 2023

    HIQA Guidance on Information Governance 2017

Department of Social Protection – Appointment of Agents

  • When may an agent by appointed?

    The Department of Social Protection advises that where a customer is unable to manage their own financial affairs an agent may be appointed to collect the payment and act on behalf of the claimant or beneficiary. The payment will be made electronically to a nominated bank account. It is recommended that a separate account be set up for this purpose.

    In all cases, a medical practitioner must certify that the customer is unable for the time being to manage his or her own financial affairs for reasons which may include one of the following: an inability to understand the basis of possible entitlements to benefit; an inability to understand and complete the claim form; an inability to understand and deal with correspondence and enquiries concerning the claim; an inability to manage benefit payments received.

  • What is the role of an agent?

    A close family member or a person appointed to be a care representative is among those who can be appointed agents. The agent must be over the age of 18 years. Where the customer is resident in a care centre for a continuous period of four weeks or more, and where no other suitable person is available and willing to be appointed, a representative of the care centre may be appointed to act as agent.

    The agent is responsible for ensuring that the payment is used for the benefit of the customer; monies are not spent on items or services that the customer has an entitlement to and are available; The payment is lodged to an interest-bearing account for the benefit of the customer; any changes in the customers’ circumstances are reported to the Department.

    The agent must also keep a record of all sums received and all transactions made in relation to the benefit payment, and produce the records if requested to do so by the customer, his or her nearest relative, or an officer of the Department. The Department may cancel an agency arrangement at any time where it has reason to believe that the arrangement is not working satisfactorily or that the payment is not being used for the benefit of the customer. If this occurs, the agent must, where appropriate, return the payments on request.

  • Further information on appointing an agent

    Department of Social Protection – Appointing someone (an agent) to act on your behalf

    https://www.gov.ie/en/service/451fd7-authority-to-appoint-an-agent/

    Citizens Information Service – Agency Arrangements for Social Welfare Payments

    https://www.citizensinformation.ie/en/health/legal-matters-and-health/legal-arrangements-for-incapacity/#l35cf7

HSE Patients Private Property Accounts

HSE and HSE-funded services may hold residents’ money for safekeeping under the Health (Repayment Scheme) Act 2006. The legislation was enacted in June 2006 to provide a legal basis for the repayment of long-stay charges which had been imposed on persons with full eligibility since 1976.

  • Patients’ Private Property Accounts:

    The 2006 act sets out how the HSE must operate patients’ private property accounts. The Patient’s Private Property Account is the money and personal property of a person in long term residential care, being cared for by or on behalf of the HSE due to a physical or mental disability or ill health.

    The HSE has produced Patients’ Private Property (PPP) Guidelines which set out the procedure to be followed by staff in the administration of patients’ private property accounts. The HSE advises that “the guidelines set out the steps that must be taken to ensure that persons’ interest are protected and provides clear guidance on the use of funds for the benefit of the person, particularly where a client may not have full capacity to manage, or to make decisions around the best use of, their funds.”

    The guide emphasises that if there is no reason to doubt the capacity of the person then the golden rule is to ask the person and get their permission before doing anything with their funds; the HSE’s only role is to carry out any reasonable request of the person as effectively as possible.

  • Appropriate use of funds from the Patient’s private account:

    In general, it is not appropriate to use funds for the upkeep, refurbishment, maintenance or decoration of accommodation or for medicines, aids, furniture or equipment where any such costs are a matter for the HSE to fund, either by contract, by regulation or by government scheme e.g. medical card.

    However, a person may from their own funds, add to what is provided, additional items or services which are over and above the norm of what the HSE provides. This may include for example items of bedroom furniture or enhanced aids or appliances from which the person would benefit. The HSE advises local discretion, purely based on the person’s best interests, in relation to such decisions.

  • Patients' Private Property Account Central Unit:

    Under the 2006 act, the HSE may invest money held in any patient’s private property account unless otherwise directed in writing by the account holder, or by a next friend appointed by a court. According to the HSE website excess Patient Private Property funds are invested in a central investment fund. The funds are invested in Government Guaranteed Fixed Interest Deposit Accounts on behalf of clients. Any interest earned on investment belongs to the person and cannot be retained by the HSE. Interest earned is lodged to each account weekly and a charge (permitted by law) is deducted (20% of the interest earned). The Comptroller and Auditor General are entitled to audit these accounts annually.

    There is a provision in the act, and it is also HSE policy, that the direction of the Circuit court is sought in all cases where the HSE uses in excess of €5000 in client funds for the benefit of the person in a single calendar year. The initial decision to spend such funds is made after a review of the person’s care plan where it will have been decided by a multi-disciplinary team that the spending will benefit the person.

    This legal provision only applies where the person does not have the capacity to make that decision for themselves. HSE guidelines say that any concerns about the practical issues associated with making circuit court applications must be treated as a matter entirely separate from determining the extent to which the person would benefit from their funds being used.

  • Further Queries & Contacts:

    If you have queries on the HSE Patients’ Private Property service offered, the HSE recommends that enquiries be made to the relevant HSE Care Centre or contact the PPPA Central Unit at:

    HSE, Block 6, Central Business Park, Clonminch, Tullamore, Co Offaly.
    Tel: 057 931 8424
    Email: pppacentralunit@hse.ie

  • Further information about Patient Private Property Accounts

    Health (Repayment Scheme) Act 2006

    http://www.irishstatutebook.ie/eli/2006/act/17/enacted/en/html

    HSE Webpage – Patients’ Private Property Accounts

    https://www.hse.ie/eng/services/publications/corporate/patients20private%20property20guidelines.pdf

SAGE Contracts of Care for Nursing Home Residents. A Discussion Document

  • What is the SAGE Contracts of Care report about?

    SAGE is a support and advocacy service working within Third Age, a national voluntary organisation for older people.

    In a discussion paper produced in September 2017, SAGE examined the matter of contracts for care for nursing home residents.

    Many of the important issues identified and many of the recommendations made are also applicable to contracts of care (written agreements or contracts for services) for designated centres for persons with disabilities.

  • Contracts of Care – matters relevant to disability services

    The document looks at how contracts for care are structured and their content. It looks at how they are presented and entered into by those involved. It considers the matter of reduced decision-making capacity and the difficulty that creates in engaging with, agreeing to and signing a contract.

    Other applicable issues raised include the absence of realistic alternative support in the community, making the move to a home inevitable rather than a choice and provisions for termination of the contract that are less favourable than would apply in standard tenancy agreements.

    Contractual terms that promote improved person-centred care and protection of the person’s human rights and dignity are presented and the need for accessible information and independent advocacy is also addressed.

Download Sage Contracts of Care for Nursing Home Residents – Policy and Practise. A Discussion Document

www.sageadvocacy.ie/media/1126/sage-nursing-home-contracts-discussion-document-sept-2017.pdf

The Medical Council Guide to Professional Conduct and Ethics for Registered Medical Practitioners, 8th Edition 2019

Other Resources

Contact Us

If you cannot find the answer to your question please contact Inclusion Ireland directly.

Email: info@inclusionireland.ie

Tel: 01 8559891