This is a very interesting submission dealing with ward of court, mental capacity legislation and a lot of issues which are relevant when dealing with someone who may have issues around mental capacity and as a more humane alternative to the current ward of court system.

 

Citizens Information Board Submission on Scheme of Mental Capacity legislation

1. Introduction

The Citizens Information Board (CIB) welcomes the Scheme of Mental Capacity Bill and considers that the proposed legislation should be introduced and enacted as quickly as possible. This is necessary in order to ensure maximum legal protection for the current cohort of people whose capacity may be limited but also to protect the growing number of those who may have impaired capacity associated with increased longevity. The need to address the issue of capacity and the law in Ireland was highlighted first in 2003 by the Law Reform Commission in its Consultation Paper on Law and the Elderly which recommended that that legislation should deal with “adults who may be in need of protection”.

 

The CIB welcomes the preparation of capacity legislation which would be in keeping with human rights principles and the implementation of a life-cycle approach to disability.

 

The Board has a number of functions.  The most important of these from the point of view of this proposed legislation are:
 

To assist and support individuals, in particular those with disabilities, in identifying and understanding their needs and options

To support the provision of, or directly provide, advocacy services for people with a disability.[1]

 

The current CIB Strategy[2] is built around the concept of putting the citizen at the centre of how services are delivered and this is particularly important where people with impaired capacity are involved. The protection of vulnerable adults requires the enactment of the Mental Capacity Bill as well as a range of other measures.  The Board considers that it is important to ensure that there is a coherent approach to all protective measures and, therefore, makes suggestions about how other measures can operate in tandem with the implementation of the scheme of guardianship proposed in the Bill.

 

The legislation on mental capacity is required primarily in order to protect vulnerable people.  It is also required in order to enable Ireland to ratify the UN Convention on the Rights of Persons with Disabilities[3].  While this is a desirable objective in itself in that the Convention contains centrally important provisions relating to the rights of people with disabilities, the primary consideration in the legislation must be the protection of vulnerable adults who would be afforded   additional protection through the enactment of new legislation and through the ratification of the Convention. The repeal of the Marriage and Lunatics Act 1811 and Lunacy Regulation (Ireland) Act 1871 provided for in the Bill is also to be welcomed.

 

The Board is concerned that the current difficulties in the public finances may cause delay in the finalisation of this proposed legislation.  It urges the Government to give priority to the proposals in order to try to ensure the protection of vulnerable adults.

 

2. The Problems to be Addressed

The CIB has direct experience of the difficulties faced by people with impaired capacity from its involvement in advocacy work.   Most people with disabilities have capacity and are able to manage their affairs and decisions on the same basis as others. However, there are three groups who are in need of protection:

 

Older adults with diminished capacity who are in residential care or being cared for at home

Adults with intellectual disabilities who are in residential care or are being cared for at home

 

People with mental health difficulties who have episodes of incapacity

 

At present, the official processes open to families who have a member with limited mental capacity are wardship and enduring power of attorney. Wardship is often complex and expensive and is usually undertaken where there is property involved and/or a conflict between other family members.  Enduring power of attorney requires that the person have capacity at the time of taking it out and thus is more suited to older people or those with a definite diagnosis.

 

In practice, family members and carers frequently make day to day decisions, including decisions on the spending of money, on behalf of people who do not have capacity.  There is no legal right to make such decisions for adults nor is there any protection for the person making the decision.  In particular, there is a legal vacuum in respect of routine decision-making on behalf of people over the age of 18 who have intellectual disabilities and lack capacity. 

 

There is evidence from CIB-funded community and voluntary disability advocacy projects around the country to suggest that there is insufficient transparency or accountability on the part of some residential services as to how people’s money is managed and how charges for services are levied. [4]  While many services are developing more inclusive protocols, existing practice frequently fails to maximise people’s capacity to manage their own money. It is also unclear to what extent the right of people to be supported by an independent advocate, as set out in the HIQA National Quality Standards, is being put into practice.  

 

 

3. Provisions of the UN Convention on the Rights of Persons with

    Disabilities

The Board takes the view that the provisions of the UN convention set key guiding principles in determining the thrust of capacity legislation. In particular, the following provisions are highly significant:
 

Equal recognition before the law

 

Article 12(2)

States Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.

 
Article 12 (3)
States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

Article 12 (4)
States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence.

Article 12 (5)

States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.

 

 

 

 

 

Access to Justice

 

Article 13 (1)

States Parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.
 

Article 13 (2)
In order to help to ensure effective access to justice for persons with disabilities, States Parties shall promote appropriate training for those working in the field of administration of justice, including police and prison staff.

 

 

4. Core Elements of the Bill

The CIB acknowledges that the basic requirements of the UN Convention are addressed to a considerable extent in the proposed legislation. In this regard, the Board particularly identifies the following aspects of the Bill:

 

Provision of a statutory presumption of capacity

Assessment of capacity as time-specific and issue-specific

The provision of all practicable steps to help a person to make a decision before regarding him/her as unable to do so

Proposals for a scheme of Personal Guardianship and for the Office of Public Guardian

The integration of the enduring power of attorney and guardianship into one legal framework

Legal protection for people engaging in bona fides informal decision-making in connect with the personal care and health care of a person whose decision-making capacity is impaired

The setting out in legislation of key guiding principles:

 

- Providing all adults, including those who may be vulnerable, with the maximum degree of autonomy consistent with appropriate standards of protection
 

- Ensuring that the best interests of the impaired person must always be the main factor in any decision.

 

The Board agrees with the main proposals for the scheme of personal guardianship, together with the setting up of an Office of Public Guardian to replace the Wards of Courts system for adults who lack capacity to make their own decisions.  This scheme is in accordance with international best practice and should serve to greatly enhance the protection of vulnerable adults.  The Board also welcomes the proposed introduction of an offence of ill treatment or wilful neglect.   The proposal in relation to informal decision making (Head 16) will cover a great many of the everyday decisions that carers and family members make on behalf of others who are unable to make such decisions.  The reference to assistance to the individual to enable decision-making offers significant potential for the development and enhancement of supported decision-making which is provided for in Article 12 (3) of the UN Convention. The proposal also makes some allowance for “mixed” capacity, the ability to make some decisions or to make decisions in some situations but not in others.

 

The presumption of capacity is an essential component of any rights-based legislative provisions. This means that everyone has legal capacity but some people need more support than others in exercising that capacity. Capacity should be assessed in a way which is fair and appropriate and which is free from prejudices based on external factors such as old age, mental illness or intellectual disability. It is important, therefore, that the legislation provides for that support and concentrates on supported decision making wherever possible  as well as introducing fair and accountable mechanisms for substitute decision making

 

The CIB welcomes the proposals to prepare Codes of Practice for guidance on the details of these proposals.

 

5. Concerns

The CIB has concerns about some aspects of the proposed legislation as set out in the Scheme of the Bill.

 

5.1 Supported Decision-making

The UN Convention is clear (Article 12(3)) that people should be supported in exercising their legal capacity. The presumption of legal capacity should, therefore, be a major emphasis in legislation.  Where a person has limited capacity, supported decision making is often appropriate for everyday decisions, with substitute decision making reserved for major medical/financial decisions.

 

The CIB takes the view that the Scheme of Mental Capacity Bill does not place sufficient emphasis on the concept of supported decision-making especially since people with different degrees of capacity will need to be assisted. The presumption of legal capacity should, therefore, be reflected in a major emphasis in legislation on the concept of supported as distinct from substitute decision-making – the latter should be exceptional and should be only be used when all avenues in supported decision-making have been exhausted.

 

5.2 Access to an Independent Advocate

Head 9 (5) provides that the court may appoint a suitable person to act in the name of, or on behalf of, or to represent the person to whom the proceedings relate.  Head 6 (2b) provides for the court to appoint a person (personal guardian) to make decisions on a person’s behalf. However, the Scheme does not make any automatic provision for independent advocacy for people who may be vulnerable because of diminished capacity.

 

The CIB believes that consideration should be given to including provision in the mental capacity legislation for people having access to an independent personal advocacy service. This would be consistent with the provision for the establishment of a Personal Advocacy Service in the Disability Act 2005 and the Citizens Information Act 2007.

 

The role of independent advocates would be particularly important to minimise any potential conflict of interest between the individual being assisted and the person providing the assistance. The National Quality Standards for Services for People with Disabilities includes provision for access to an advocate as a criterion underpinning informed decision making and consent:

 

The individual is facilitated to access his/her nominated representative or an advocate, or advocacy services of his/her choice when making decisions, in accordance with his/her wishes.

 

Vision for Change recommends that “all users of the mental health services – whether in hospitals, day centres, training centres, clinics, or elsewhere – should have the right to use the services of a mental health advocate” (p.25).

 

While the Scheme states that in determining the person’s best interests, the

person making the determination and the Court must, so far as reasonably practicable, encourage the person to participate or improve his or her ability to participate as fully as possible in decision-making, it may be that  implementing this will require the presence of a skilled advocate. For example, an independent advocate could play a critical role in supporting a person going through the courts system by:
 

Accompanying the person at hearings on assessment of capacity

Assisting him/her in understanding the process

Helping him/her to make a complaint, lodge an appeal or seek a review an appeal or seeking a review).

5.3 Informal Decision-making

Head 16 on informal decision-making offers protection from civil and criminal liability to carers who routinely assist a person where s/he carries out the actions in the best interests of the individual whom s/he reasonably believes lack capacity to consent. This means in effect that persons not formally appointed as personal guardians are delegated significant powers. While the CIB recognises that such informal decision-making is necessary for both pragmatic and legal protection reasons, the Board is of the view that the exercise of informal decision-making should be monitored and that provision should be made in the legislation for the Office of Public Guardian to have a role in this regard.

 

5.4 Personal Guardian

Head 6 provides for the appointment of a personal guardian and Heads 7 and 8 set out the powers to be given to the personal guardian. As set out, these powers – personal welfare (including living arrangements) and property and affairs are extensive. Ideally, the appointment of a personal guardian should be based on risk analysis taking into account the particular needs of an individual related to his/her  capacity and living situation at a particular point in time.

 

The CIB takes the view that this is an area where careful consideration is required in order to ensure that one individual does not exercise undue control over another. In this regard, the Board points to evidence[5] of relatives managing the finances of people with an intellectual disability in a manner that may not be in the best interests of the latter. The Board agrees with a view expressed by both Inclusion Ireland and the NDA[6] that consideration should be given to appointing  more than one person  to act as ‘personal guardian’ for people deemed to lack capacity which is provided for  in Head 10.  The legislation should also make provision for excluding people from acting as guardians where there is a significant conflict of interest, e.g., in relation to spending a person’s money. The provision in Head 10 which allows the court to require the personal guardian to submit reports to the Public Guardian is an important one.

 

At present, the social welfare legislation provides for a system of appointment of agents to deal with the social welfare payments of people who lack capacity. The CIB does not consider that guardians need to be appointed if the only issue in question is the management of the social welfare payment.  However, it does consider that social welfare agents should be subject to the overall supervision of the Public Guardian.

5.5 Special and General Visitors

The Office of Public Guardian can appoint special and general visitors (Head 32 and 38). This is a welcome and important provision and one where the availability of resources commensurate with its effective implementation will be crucial. The CIB considers that   the provision that a special visitor should be a registered medical practitioner should be looked at again taking into account the importance of ensuring that the social model of disability informs all decisions.

5.6 Advance Care Directives

While the principle of taking account of the person’s past and present wishes is noted as an underlying principle in Head 1, the Scheme does not provide for advance directives whereby a capable person could give binding instructions concerning situations (e.g. advance refusal of certain treatments) that may arise in the event of the person’s incapacity. The CIB takes the view that, while this is a complex area, it is one which has a potentially significant role in ensuring that people whose capacity becomes impaired can have their wishes met which, for example, could be particularly important in an end-of-life care scenario. The legislation should, therefore, deal with the issues raised in the Law Reform Commission’s Report on Bioethics: Advance Care Directives.   The Government should consider including the draft Mental Capacity (Advance Care Directives) Bill with this legislation.

 

 

5.7 Regular Review

Head 14 provides that decisions on capacity are to be subject to review at regular intervals. While an application for a review can be made at any time, with the permission of the court, those without someone appointed to act on their behalf, may not be capable of asking for a review. The CIB considers that the provision for intervals of not more than 36 months for such reviews is too long, taking into account, as the Law Society[7] points out, that:

 

Most applications in respect of capacity will be  for a an interim order  and must include provision for a review

Where a declaration of capacity or incapacity is being made (and a personal guardian is being appointed), this may be of longer duration and  the criteria for review must be determined by a court/tribunal having regard to the individual circumstances

Risk analysis by the Public Guardian should be one of the criteria necessary to determine the frequency and type of review.

 

The CIB considers that the legislation should provide for regular automatic reviews (say every 12 months). The extent and nature of the review would be determined by the circumstances of each individual involved.

 

 

 

5.8 Review of Existing Wards of Court

Head 41 provides for an optional arrangement for existing Wards of Court to make an application for a review of a declaration that a person lacks capacity to make decisions. However, under this provision, people will remain a ward of court unless they actually make an application under the new legislation.

The CIB agrees with the recommendation of the Law Society that the legislation specifically provides for a mandatory review, within a specified period (say 6 months), of all persons who are currently wards of court.

 

5.9 Management of Personal Finances

In practice, many people with intellectual disabilities manage their own finances and operate bank accounts.  This usually happens without any assessment of their capacity to enter into a contract.   However special arrangements may be needed for people who have limited capacity so that they have the benefit of banking services but are not open to exploitation. Financial institutions should consult with the Public Guardian as to how they can fulfill their duty of due care, for example, making provision for limited accounts, joint accounts, etc. Consideration should be given to including in the legislation a requirement for financial institutions to implement protocols on the rights of people with a disability to open bank accounts, take out loans and manage their own money in accordance with Article 12 (5) of the UN Convention referred to above.
 

5.10 Legal Representation

Head 15 provides that the Court may draw up an appropriate scheme to provide for legal advice and for legal representation of a person where the Court believes that representation is warranted. However, there does not appear to be any provision in the Bill for an automatic entitlement to legal representation in relation to determination of legal capacity.

 

The CIB suggests that, in addition to a stronger provision for legal representation, consideration should, as already stated, be given to making provision for independent non-legal representatives, such as an advocate, to accompany and support an individual in court.

 

5.11 Title of Bill

The CIB notes that Inclusion Ireland[8] has suggested that the legislation be renamed ‘legal’ capacity rather than ‘mental’ capacity. This suggestion should be given careful consideration in the context of the principles outlined in the UN Convention on the Rights of Persons with Disabilities.

6. Coherence with Other Measures

Vulnerable adults may live at home or in residential care.  Their protection therefore needs to address both situations.  This means that, as well as the legislation on mental capacity, a number of other measures need to be in place.  In particular, mandatory standards should be set for all services, whether community-based or residential, and these need to be monitored.

 

6.1 Other Measures in Mental Capacity Legislation

The CIB considers that the mental capacity legislation should cover all areas where substitute decision making is required.   

 

Health (Repayment Scheme) Act 2006[9]

The CIB agrees with the Law Society recommendation that The Health (Repayment Scheme) Act 2006 should be amended by the Mental Capacity legislation so that any determination on capacity in relation to patients’ private property accounts is made under the provisions of the Mental Capacity legislation and that the Public Guardian should be given a supervisory role in relation to the operation of patients’ private property accounts for persons who lack capacity and, where necessary,  applications in relation to the use of funds should be made to the Public Guardian. Currently, the HSE manages such accounts in accordance with the legislation.

 

Nursing Homes Support Scheme Act 2009

The CIB considers that the Bill should provide that the Care Representative provisions of the Nursing Homes Support Scheme Act 2009 be integrated into the guardianship provisions of the Mental Capacity Bill.  This is essential to avoid duplication of people representing people with impaired capacity. 
 

Mental Act 2001

The relationship between the provisions of the Mental Health Act 2001 and the mental capacity legislation should be explored further, particularly in respect of people compulsorily admitted under the Mental Health Act 2001.

 

Freedom of Information and Data Protection Legislation

The personal guardian should be able to exercise the personal rights under the Freedom of Information and Data Protection legislation.

 

6.2 Care Standards

The setting and monitoring of care standards is an essential feature of the protection of vulnerable adults.  There is now a robust system of regulation in place for the monitoring of nursing home facilities for vulnerable adults.  There is no system of monitoring in place for people with disabilities who are in residential care nor for vulnerable adults living at home.   The Board welcomes the government’s stated intention, to proceed with proposals for “the protection of vulnerable adults with disabilities who are in residential services provided by, or on behalf of, the State”.   The Board strongly recommends that the “National Quality Standards: Residential Settings for People with Disabilities” be implemented quickly.

 

Vulnerable adults living in the community are equally in need of protection.  The proposed mental capacity legislation should also take account of the concerns set out in the Law Reform Commission’s Consultation Paper on the Legal Aspects of Carers. This report deals with the regulation of home care for vulnerable adults. The Mental Capacity legislation could enable personal guardians to agree contracts of care on behalf of vulnerable adults.

 

 

6.3 Inter-agency Collaboration

While the main focus of the Scheme is on the courts system, in practice, social care decisions are made, and will continue to be made, by different people in people’s homes or in care settings. So the key challenge for the effective implementation of the legislation is that people making decisions or supporting decision-making all work according to the same protocols. This requires that those involved have the information and training they need to enable, facilitate and make the best decisions. This requires interagency collaboration between, for example, the proposed Office of Public Guardian, the Department of Health and Children, the HSE, the Office for Disability and Mental Health and voluntary sector service providers.

 

6.4 Information Dissemination

A key factor in the effectiveness of the proposed legislation will be the extent that people – citizens, families, support workers, advocates and service providers –are aware of its provisions. This will require the proactive dissemination of information on the legislative provisions and the related regulations and implementation guidelines. The involvement of the proposed Office of Public Guardian, the Department of Justice and Law Reform, the Department of Health and Children, the HSE and the Office for Disability and Mental Health will be necessary in this regard.

 

 

7. Conclusion

Any new capacity legislation should underpin and support the right to self-determination, the right to participate and the right to make choices in keeping with the provisions of the UN Convention on the Rights of Persons with Disabilities. The focus in the Scheme of Mental Capacity Bill on an issue based approach to capacity is a welcome development. The emphasis on the presumption of legal capacity should be re-enforced with a strong legislative focus on supported decision-making.  The capacity legislation needs to be introduced urgently but should be done in conjunction with the placing on a  statutory footing of the HIQA National Quality Standards for Residential Services for People with Disabilities, the introduction of a similar set of mandatory standards for community-based services and the full implementation of the Disability Act 2005. The implementation of the legislation will require strong inter-agency collaboration with appropriate staff training, proactive information dissemination and ongoing monitoring.  As far as possible, the administrative consequences of implementing the legislation should be minimised. 

 

 

 

 

 

[1] The CIB funded and supported a pilot programme of 46 disability advocacy projects nationwide and is now in the process of establishing a National Disability Advocacy Service.

[2] Citizens Information Board (2009), Pathways to Services: Putting Citizens at the Centre, Strategic Plan for 2009-2012.

[3] Ireland was among the first countries to sign the Convention on the Rights of Persons with Disabilities in 2007.

[4] The CIB is currently compiling a Social Policy Report on Charges and Managing People’s Personal Finances in Residential Services for People with Disabilities.

[5] Feedback from CIB-supported Community and Voluntary Disability Advocacy Projects

[6]http://www.nda.ie/website/nda/cntmgmtnew.nsf/0/66292BBCC27B2914802575B7003D5E83?OpenDocument ; http://www.inclusionireland.ie/documents/ObservationsfromInclusionIrelandonMentalCapacityBill.doc

[7] http://www.lawsociety.ie

[8] www.inclusionireland.ie

[9] Section 9 of the Health (Repayment Scheme) Act 2006 provides for the operation of patients’ private property accounts generally and in the context of patients who lack capacity to manage their own funds.