CITIZENS INFORMATION BOARD AND THE NATIONAL ADVOCACY SERVICE FOR PEOPLE WITH DISABILITIES
Presentation to the Joint Oireachtas Committee on Health and Children
26th November 2015
TABLE OF CONTENTS ESTABLISHING AN ADVOCACY SERVICE FOR PEOPLE WITH DISABILITIES................................................ 2 THE NATIONAL ADVOCACY SERVICE FOR PEOPLE WITH DISABILITIES (NAS) .......................................... 4 THE NAS MODEL OF ADVOCACY AND HOW DO WE DO OUR WORK ...................................................... 4 NEED FOR STATUTORY POWERS .............................................................................................................. 5 RECOMMENDATIONS ............................................................................................................................... 7 CONCLUSION ............................................................................................................................................ 8 APPENDICES.............................................................................................................................................. 9 APPENDIX ONE: EXTRACT FROM CITIZENS INFORMATION ACT 2007................................................ 10 APPENDIX TWO: NAS POLICY ON ACCESS AND ELIGIBILITY ............................................................... 12 APPENDIX THREE: NAS ADVOCACY CODE OF PRACTICE .................................................................... 16 APPENDIX FOUR: ADVOCACY PLANNING ........................................................................................... 26 APPENDIX FIVE : STAFFING AND 2015 BUDGET ................................................................................. 34 APPENDIX SIX : PEOPLE SUPPORTED BY THE NATIONAL ADVOCACY SERVICE IN 2014 ..................... 35
Presented by Eileen Fitzgerald, Senior Manager, Citizens Information Board.
CHAIRMAN I have been asked to address this Joint Committee on the establishment of an independent advocacy service for users of health and social care services. I will speak from the experience of the Citizens Information Board on the establishment of an independent advocacy service for people with disabilities and hope it will inform this discussion.
ESTABLISHING AN ADVOCACY SERVICE FOR PEOPLE WITH DISABILITIES There are approximately 400,000 people with disabilities in Ireland and from time to time some people need access to an advocacy service, but most do not, or would not if services were offered and delivered differently. While advocacy services are undoubtedly required, it is important not to lose sight of the requirement that public services be designed and delivered in a manner which facilitates people in using those services and minimises the need to seek help to understand and use the services. In a perfect world, the public, regardless of having a disability or not, should be able to access services, understand their entitlements to services and then use them without intervention by anyone else.
The current experience for many people with disabilities living in the community or residential services is one of marginalisation in terms of health, housing, employment and social participation.1 There are still over 3,000 people living in congregated settings 2 in Ireland. Research has demonstrated that the quality of life for people in residential settings is often compromised and there may be restrictions on their rights and choice, and decision making is often taken away from the individual. Many people with disabilities have limited support from family and community and need to access an advocate who is independent of all service providers to ensure they are included in decisions about their lives.
Over the past 4 years the National Advocacy Service has worked intensively with over 2000 people, supporting them to have their voices heard. In addition, NAS has engaged with significantly more people by phone and linked them to other services if their service need was other than advocacy or if their enquiry did not correspond with the access criteria to NAS. NAS targets its service offer to 1
“Evaluation of the Programme of Advocacy Services for People with Disabilities in the Community and Voluntary Sector” 2010 Roundtable Solutions 2 “Time to Move on from Congregated Settings – a Strategy for Community Inclusion” HSE 2011 defines a congregated setting as a residential service for more than 10 people (except mental health settings) 2
people with disabilities who are isolated from their community and services, have communication differences, are inappropriately accommodated, live in residential services, attend day services and have limited or no natural supports. In 2014, over 35% of people supported by NAS had an intellectual disability, 20% had a physical disability and nearly 20% had mental health issues. Issues addressed include moving out of institutional care, inappropriate accommodation, income support and access to personal finances, and quality of life issues. Case Example Mark has mental health issues and lives in a congregated setting. He has requested support to gain further access to his finances. He does not understand why the service provider has control of his finances and why he only receives thirty euros per week. He would like to have more money to spend every week so that he could undertake activities of his own choice. The Advocate worked with Mark and his Service Provider and Mark now has access to his money with the necessary supports, which enable him to become more independent. Without the support of an advocate, Mark’s situation would not have changed.
Practice has changed also for other people in this
In line with its responsibilities set out in the Comhairle Act 2000, the Citizens Information Board (CIB) has incrementally developed mainstream advocacy provision in Citizen Information Services to enable people to access their rights and entitlements. Under the National Disability Strategy 2005, the Citizens Information Board was designated as the organisation to provide advocacy for people with disabilities, with the terms of the proposed Personal Advocacy Service (PAS) set out in the Citizen Information Act 2007. In anticipation of these responsibilities, CIB undertook and published research on International models of advocacy intervention.3 CIB set up 46 pilot advocacy projects for people with disabilities in collaboration with various community based organisations from 2005. In 2008, the implementation of PAS was placed on hold. As a result, the sections of the Citizen Information Act 2007 relating to PAS have not been implemented to date. Various stages of advocacy service development and restructuring have led to what is now one national organisation, the National Advocacy Service for People with Disabilities (NAS).
THE NATIONAL ADVOCACY SERVICE FOR PEOPLE WITH DISABILITIES (NAS) The National Advocacy Service for People with Disabilities (NAS) provides an independent, confidential and free, representative advocacy service that works exclusively for the person using the service and adheres to standards as set out in NAS code of practice.4 NAS is fully funded and supported by the Citizens Information Board. NAS is staffed by 28 Advocates and 8 Senior Advocates, managed by 4 Regional managers and a National Manager and supported by 5 Administrative staff. Given the remit and resources of NAS, it is inevitable that it reaches only a small proportion of people who could benefit from the support of a representative advocate. The criteria for prioritising access to NAS are adapted from the criteria for the Personal Advocacy Service (Citizens information Act 2007) combined with practical experience.
THE NAS MODEL OF ADVOCACY AND HOW DO WE DO OUR WORK Representative Advocacy is a relatively new service in Ireland, and drawing on its experience over the past decade, CIB and NAS have developed standards, policies and procedures in line with international best practice, to ensure that the representative Advocacy service we provide operates to high professional standards. Independent, representative advocacy empowers and is directed by the people who use it. It is person centred, accountable, accessible, impartial and independent of service providers, families and other supports. Advocates are supported and supervised and record their work on a confidential case management system. Independence is central to the work of NAS, in that the advocate will not share information with third parties unless directed by the person. Particularly important, NAS advocates are not influenced or compromised in carrying out their independent, representative advocacy role by any other party. This ensures robust advocacy practice and places the will and preference of the person at the centre of the situation.
Issues to be addressed can be about any aspect of the person’s life, and may be directed by the person, or where the person’s will and preference cannot be ascertained, the advocate approaches the matter using the four internationally recognised methods contained in the NAS Advocacy Planning Policy (namely, witness observer, person centeredness, rights based approach and ordinary life principles). An experienced Advocate can and does represent the will and preference of people
National Advocacy Service Code of Practice 2015 4
who communicate differently and who cannot articulate their wishes. This requires time and skill, line management and supervision, as this is complex work and the advocate must earn the respect of both the person they are representing and the service provider.
Case Example Aisling has been placed in an old style institution following the breakdown of another placement. Aisling has lived in residential settings all her life. She is advanced in years and has no family and no circle of support. There is no plan to ascertain Aisling’s wishes. Aisling is non-verbal and it is not known how much insight she has into her situation. With the support of an advocate, Aisling was able to have her voice heard and to ensure that her will and preference was included in the decision making process. Aisling is now moved to a community house and the advocate has observed Aisling to be much more content. Without advocacy Aisling’s situation is unlikely to have changed.
NAS has experienced a wide range of expectations and misunderstandings as to what representative advocacy is and should be.
Representative Advocacy is a means of empowering people by
supporting them to assert their views and claim their entitlements and where necessary representing and negotiating on their behalf.
It is not about making decisions for someone, mediation,
counselling, care and support work or consultation.
ADVOCACY AND COMPLAINTS Whilst NAS will assist and /or advocate for an individual in making a complaint about a service, advocacy practice tends to focus in the first instance on ensuring that the person’s voice is heard and to seek an early resolution of the advocacy issue. This will often be done in a less formal way which may lead to a more expeditious outcome. NAS also supports individuals to make complaints to the Office of the Ombudsman where an internal complaints process has not resolved matters to the individual’s satisfaction.
NEED FOR STATUTORY POWERS There continues to be misunderstanding about what Advocacy is and the role of an advocate. NAS frequently experiences issues with service providers when seeking information and their meaningful engagement with the advocacy process. They may engage with advocates but this can be experienced as tokenistic. This can be hugely time consuming and can detract from advocating in relation to the advocacy issue and can take time away from working with other people who need the service. 5
Although NAS continues to engage in extensive relationship building and demonstrating the value of advocacy through good practice, the lack of statutory powers does mean that issues can arise in the following areas:
Access to services – where providers do not facilitate NAS’ presence in situ;
Access to information – where an individual cannot give written consent, NAS may not obtain access to documents;
Decision making – as services slowly begin a cultural shift away from ‘best interests’ many decisions are made on behalf of individuals without reference to the person, their will and preference and/or their advocate;
Obfuscation in relation to delay in replying to correspondence, access to key decision makers.
NAS has welcomed the incorporation of advocacy into HSE/service provider Service Level Agreements, however, it is essential that training and capacity building for service provider staff around advocacy is included as part of staff training and development. On some occasions the front line staff and local manager are unaware of the inclusion of advocacy in Service Agreements, do not understand why an advocate has been requested and what their role is and therefore can be circumspect about the advocate’s involvement. Senior Professionals and management equally so. NAS does provide information sessions on advocacy and training for staff and management, but does not have the resources to deliver all that is required. A joined up approach to training and awareness raising is required, with all stakeholders committed to the same standards. All services should be obliged to train their staff on working with Advocates. This will assist in breaking down barriers in order that people with disabilities are recognised as equal citizens who are entitled to have their voices heard by all of those involved in their lives.
CIB is in discussion with the Department of Social Protection to seek statutory powers for NAS to overcome barriers to access.
In the meantime, NAS continues to develop a number of responses to reach the people who need the service.
RECOMMENDATIONS In relation to the establishment of an independent Advocacy service for users of health and social care services, CIB and NAS make the following recommendations.
Statutory Powers for NAS Examine the potential impact of introducing legislation to support access for NAS advocates in situations where resistance is experienced, and how this could improve overall acceptance and recognition of NAS’ role, and ensure a right of access and information and for meaningful engagement with NAS and with other advocacy service providers.
Overarching Framework for Advocacy There are many different forms of advocacy and many different providers in Ireland, all playing valuable roles. There does need to be an overarching framework to ensure that citizens can easily access the best advocacy service for their situation. In addition, as there is a very wide interpretation of the definition of advocacy, there can be confusion over what advocacy is and what the different models offer. All Advocacy provision should meet certain standards to ensure quality service provision.
Accordingly, there is a need for the establishment of a framework of advocacy in the social care area. This framework would identify:
Different advocacy models;
Different advocacy providers;
Co-ordinated approach across providers with linkages across those providers;
Establishment of accessible information on advocacy including a dedicated website;
Establishment of national standards and quality assurance in advocacy and mechanisms to ensure those standards are met;
There is a need for a co-ordinated approach to advocacy services that would cover people with disabilities, those who need support with decision-making and patients within the health services who need help in establishing their rights.
Education and capacity building – there is a need for training and capacity building across the range of service providers involved in both health and social care in relation to person centeredness and Advocacy to enable a cultural shift;
Incorporation of advocacy into Service Level Agreements and other contractual and policy documents;
Continuation of Advocacy in HIQA standards and review of same.
These standards of advocacy practice should be used as an assessment tool by regulators and inspectorates.
CONCLUSION Measuring the impact of Advocacy provision requires more attention. In CIB, we have seen how effective NAS independent representative advocacy can be. Changes in the quality of life for one person in a residential setting can influence change for many others in that service. However, Advocacy is not the panacea to resolve service gaps. Advocacy gives voice, highlights need, highlights gaps and inadequacies in service provision. It means that those who “cannot shout the loudest “have someone to speak up for them, and ensure that they are heard. We are all entitled to be heard, thereafter the responsibility to provide the relevant service to the proper standards lies with the Service provider.
As service providers improve the quality of the service they deliver, the
requirement for Advocacy services should lessen.
NAS looks forward to continuing to support people with disabilities and to working with a range of service providers and agencies to ensure the upholding of the individual’s will and preference.
I have attached some further information, including NAS policies for your attention.
Eileen Fitzgerald Senior Manager Citizens Information Board November 26th 2015
APPENDICES APPENDIX ONE:
Extract from Citizens Information Act 2007 pg 10
NAS Access and Eligibility Policy
NAS Code of Practice
NAS Advocacy Planning Policy
Staffing and 2015 Budget
People supported by the National Advocacy Service in 2014
APPENDIX ONE: EXTRACT FROM CITIZENS INFORMATION ACT 2007 Citizens Information Act 2007 “Functions of personal advocate. 7D.— (1) A personal advocate assigned to a qualifying person under this Act shall— (a)
if appropriate, make or assist in making an application for an assessment under Part 2 of the Disability Act 2005 in respect of the person and assist, support and represent the person in accordance with the said Part 2 in relation to the application, assessment and service statement (if any) prepared in respect of the person,
assist, support and represent the person— (i) to apply for and obtain a social service or services specified in the application under section 7B(1) concerned or, if appropriate, in a service statement prepared in respect of the person, and (ii) if the personal advocate considers it appropriate to do so, to pursue any right of review, reference or appeal to a body other than a court if the application for such service or services is refused,
for the purpose of assisting the person to promote the best interests of his or her health, welfare and well-being, provide support or training or both to— (i) the person, or (ii) a member of the person’s family, a carer of the person or any other person, including a member of an organisation or group, who is actively involved in promoting the health, welfare or well-being of the person, or both for so long as the personal advocate is performing functions under paragraph (a) or (b) in respect of the person.
(2) A personal advocate assigned to a qualifying person under this Act may, for the purpose of performing his or her functions, at any reasonable time enter any place where day care, residential care or training is provided for the person and make such inquiries in such place in relation to the person as he or she considers appropriate.
(3) Subject to the Data Protection Acts 1988 and 2003, a personal advocate assigned to a qualifying person under this Act may, for the purpose of performing his or her functions, do all or any of the following:
(a) obtain from a statutory body or voluntary body any information relating to the person that the personal advocate considers necessary; (b) attend and represent the person at any meeting, consultation or discussion at which the interests of the person are being considered and which the person would have attended if he or she were not a qualifying person; and (c) identify any person referred to in subsection (1)(c)(ii) who may assist the qualifying person.
(4) A statutory body or voluntary body that provides social services shall co-operate with a personal advocate in the performance of his or her functions.
(5) A person who by act or omission obstructs or hinders a personal advocate in the performance of his or her functions shall be guilty of an offence and shall be liable on summary conviction to a fine not exceeding €2,000 or imprisonment for a term not exceeding 3 months or both.
(6) Proceedings for an offence under this section may be brought and prosecuted by the Minister
(7) Notwithstanding section 10(4) of the Petty Sessions (Ireland) Act 1851, summary proceedings for an offence under this section may be instituted within 12 months from the date of the offence.
(8) In this section ‘application’, ‘assessment’ and ‘service statement’ have the meanings assigned to them respectively by Part 2 of the Disability Act 2005.”
APPENDIX TWO: NAS POLICY ON ACCESS AND ELIGIBILITY NAS POLICY ON ACCESS AND ELIGIBILITY 1.
The purpose of this policy is to set out how NAS will deal with requests for advocacy and the critieria which will be applied in deciding whether to provide a service. In recognition of the fact that NAS does not have the remit or resources to provide an advocacy service to everyone who seeks one, it aims to ensure that NAS avoids direct or indirect discrimination and reaches the people most in need of advocacy while maintaining high standards and running the service efficiently.
This policy applies
to all decisions on whether to provide advocacy services to a person
to policy and resource allocation decisions by NAS management
to the design and operation of other NAS policies
Background and Guiding Principles
This policy relates directly to NAS Core Values of Respect and Equality. Everyone who tries to access NAS will be treated with respect, be given clear expectations of how and when their enquiry will be assessed and have the right to appeal the decision not to provide a service at that time or for that issue. NAS services will be available to all people with disabilities on a fair and equal basis. To be eligible to apply for an advocacy service from NAS, a person must have a disability and be aged 18 or over. NAS does not provide a service to people under 18.
NAS has a particular remit to try to ensure that it reaches those who may be most in need of the service, eg. people who have no natural supports, people in residential services not linked to an active circle of support outside of the residential setting, and other people whose opportunity to seek support independently is extremely limited due to their disability, their circumstances or a combination of both.
NAS is committed to equal opportunities both as a core value and in accordance with Equality legislation (Equality Acts, consolidated 2004). This means that no group of people with disabilities will be directly or indirectly excluded from service. In order to avoid indirect discrimination, it will sometimes be necessary to take positive measures (as defined in Section 14 of the Equal Status Act 2000) to promote access to NAS for those who may who may have
limited opportunity to access the service independently. This may have the unavoidable effect that others do not receive a service at that time.
Responsibilities of NAS Staff
An initial assessment as to whether a service will be provided will be carried out by the staff member who receives or is assigned the enquiry. Each person will be treated with respect and dignity and their own assessment of their situation will be taken seriously. Every individual situation is different and it is important that advocates use discretion in making the decision to open the case at that time, to place the person on a waiting list or to refuse the enquiry as an advocacy case. If a staff member is unsure at any point, they will discuss the matter with their line manager.
In determining whether or not NAS should become involved, NAS will apply the criteria outlined in Appendix 1, assessing each criterion separately and also considering the case as a whole.
Having made an assessment on the basis of these criteria, NAS advocates will also consider any current guidance from the NAS Regional Manager (see below re. interpretation of guidance).
In cases where an overall consideration of the circumstances indicates a severe risk of harm to the person’s health/ welfare/ safety/ well-being if they are not provided with the service, the decision may be taken, in consultation with a manager, to provide advocacy regardless of any guidance in place.
Where the decision is made not to provide a service to a person at that time, every effort will be made to signpost to another appropriate service. The person will be informed of their right to appeal the decision and given a copy of the complaints policy and eligibility criteria. If they need assistance to appeal the decision, an attempt will be made to source support for them to do this.
Responsibilities of NAS Management
NAS Management has a responsibility to ensure that NAS fulfils both its commitment to equal opportunities and its remit to reach those who may be most in need of advocacy, e.g. people who have no natural supports, people in residential services, and other people whose ability or opportunity to seek support independently is extremely limited due to their disability, their circumstances or a combination of both.
Regional Managers may issue written guidance to advocates from time to time, based on review of service data and designed to ensure that certain groups do not face indirect discrimination in accessing the service (i.e. “positive measures” under Section 14 of the Equal Status Act 2014). For example, this might mean requiring that advocates set aside a certain amount of time to proactively engage with particular residential institutions or with groups who are demonstrably under-represented in NAS’s caseload. The guidance document should contain a rationale and where possible should refer to the evidence of underrepresentation. All such guidance should be reviewed on a quarterly basis and should be revoked in writing if the circumstances which gave rise to it no longer apply.
While it is unavoidable that such guidance may mean that other cases have lower priority, guidance should never be expressed or interpreted as automatically ruling out a particular type of case or category of applicant. Each case should always be considered on an individual basis, applying the criteria set out in Appendix 1. Where an overall consideration of the circumstances indicates a severe risk of harm to the person’s health/ welfare/ safety/ wellbeing if they are not provided with the service, the decision may be taken to provide a service regardless of any guidance in place.
Recognising that demand is always likely to exceed supply, NAS will also seek to respond to the advocacy needs of people with disabilities by innovative and collaborative arrangements with relevant organisations such as Citizens Information Services, self-advocacy groups, the Ombudsman’s Office etc.
The situation may occasionally arise that a manager becomes aware that a person making an enquiry has also contacted another regions in an effort to access advocacy and has been refused. In such instances, the relevant regional managers will liaise to ensure consistency in application of access and eligibility criteria.
When a person is refused a service or placed on a waiting list, they will be advised of their right to appeal the decision and given a copy of this policy, including Appendix 1, and the document “How to Make a Complaint against NAS”. The Complaints Policy and procedure will be followed in relation to the handling of the appeal.
Other policies which may be of particular relevance to situations covered by this policy include:
Case Management Policy
8. Review Date This policy will be reviewed as necessary as and no later than July 2016.
Appendix 1 The criteria for assessing eligibility for the advocacy service are adapted from the criteria for the Personal Advocacy Service (Citizens Information Act 2007), combined with practice experience. 1. Without advocacy, a person with a disability is unable to obtain/ has difficulty obtaining access to services, facilities or rights on an equal basis with a person without a disability; 2. The risk to the person’s quality of life; 3. The risk of harm to the person’s health/ welfare/ safety/ wellbeing if they are not provided with the services they are seeking to obtain, and the degree of risk; 4. The need of the person to have an independent advocate; 5. The availability or absence of natural supports, e.g. family members willing and able to advocate on behalf of the person or other supports; 6. The availability of other services already linked to the person (e.g. disability specific organisations) and avoidance of duplication of service; 7. The benefits likely to accrue; 8. If it is apparent that due process has already been exhausted and/or no possible avenues for redress exist; 9. Any other relevant matters in the view of the NAS Regional Manager.
Version 1 Developed by NAS Policy Advisory Group November 2015
APPENDIX THREE: NAS ADVOCACY CODE OF PRACTICE
NAS Advocacy CODE OF PRACTICE Contents MISSION STATEMENT ………………………………………………………….…………………….……………........………………. 17 VISION STATEMENT …..………………………………………………….…………………………………………..................……..17 CORE VALUES …….……………………………………………………………………………………………………….…….......….…...17 CODE OF PRACTICE –PURPOSE………………………………………………………………………….………………….…..........18 CODE OF PRACTICE –VALUES AND STANDARDS…………………….…………..…….……..………………………..........18 Value 1 : Independence…………...……………………………….……………….…………………………………………………….18 Value 2 : Autonomy....………………………………………………………………………………………………………………….…..19 Value 3: Equality/Citizenship……………………………………………………………………………………………………...……20 Value 4: Respect …………………………………………………………………………………………………………..…………………22
THE NATIONAL ADVOCACY SERVICE
MISSION STATEMENT The National Advocacy Service for People with Disabilities (NAS) provides an independent, confidential and free, representative advocacy service that works exclusively for the person using the service and adheres to the highest professional standards. VISION STATEMENT Our vision is to work towards a society that ensures the full participation of persons with disabilities. We identify the core human rights as being dignity, autonomy, equality and independence. We recognise the capacity of persons with disabilities to make their own decisions equally with others, in accordance with United Nations Convention on the Rights of People with Disabilities (UNCRPD). CORE VALUES NAS staff have identified and agreed five Core Values which inform the work of NAS. 1. Independence NAS works with the person independent of others and free from all conflicts of interest. The advocacy process is led and guided by the person. 2. Autonomy NAS supports the right of the person to self-direction/determination (i.e. to be in control of their own life) and to make informed decisions based on their will and preference. 3. Equality/Citizenship NAS supports the right of every person to assert and enjoy their human rights, to participate in society as an equal citizen and to fulfil their full potential within a life of their own choosing. 4. Respect NAS works with the person in a way which demonstrates respect for the person as an individual and for their privacy, dignity and autonomy. 5. Empowerment NAS aims to facilitate the person to be an active participant in decisions which affect their life, through the way in which the advocacy process is carried out as well as the outcomes it seeks to achieve.
CODE OF PRACTICE-PURPOSE The purpose of this Code of Practice is to ensure that the five Core Values of NAS are consistently reflected in the way in which NAS carries out its work by setting out basic standards for NAS advocacy practice and the management and administrative practices which support it.
The Code of Practice should be read in conjunction with the NAS Policies and Procedures which provide more detail on how specific aspects of NAS’s work should be carried out, in accordance with the Core Values. NAS advocates are bound by this Code of Practice and adhere to NAS Policies and Procedures.
The Code of Practice is first and foremost for advocates to assist them in carrying out their work. It may also be useful
to inform people with disabilities about what they can expect from the service (an information guide is also available);
to inform and educate service providers, family members and other people who come in contact with NAS about the basis on which NAS advocates work;
To assist managers with training, support and supervision and service review and monitoring.
CODE OF PRACTICE – VALUES AND STANDARDS This Code of Practice sets out the standards to which NAS provides representative advocacy, which are directly informed by the five Core Values. The Code of Practice focuses on the responsibilities of advocates and management but all NAS employees including administration staff carry out their role in a manner consistent with the Code.
NAS works with the person independent of others and free from all conflicts of interest. The advocacy process is led and guided by the person.
Standard 1.1. Independent, representative advocacy is led and guided by the views, wishes, rights, needs and interests of the people who use the service NAS Advocates a) work exclusively for the person using the advocacy service – supporting them, expressing their wishes, respecting their confidentiality and sharing all relevant information with them.
b) will not share information with third parties unless directed by the person. Only in exceptional circumstances will information be shared against a person’s wishes, in order to meet legal responsibilities or to prevent immediate and significant harm to the person or to others. The advocate will inform the person where such situations arise. c)
are not influenced or compromised in carrying out their independent, representative advocacy role by any other party.
d) are alert to the situations where this may arise and avail of appropriate support and guidance from their manager in dealing with such situations.
Standard 1.2: Independent, representative advocacy looks out for and minimises conflicts of interest NAS Advocates a) understand the concept of conflict of interest and are vigilant for situations in which conflict of interest may arise. b) clearly and consistently explain their role to all stakeholders in order to establish clarity of expectations and boundaries. c) act in accordance with the NAS Conflict of Interest Policy. d) consult with their Regional Advocacy Manager about any potential, or perceived potential, conflict of interest in a timely way and in accordance with Conflict of Interest Policy. e) tell the person seeking independent, representative advocacy about any actual or potential conflict of interest.
NAS Management f) ensures comprehensive policy and procedures around conflict of interest are in place. g) supports advocates to identify and appropriately manage conflicts of interest.
NAS supports the right of the person to self-direction/determination (i.e. to be in control of their own life) and to make informed decisions based on their will and preference. Standard 2.1: Independent, representative advocacy aims to support people to have greater control over their lives and to maximise their involvement in decisions which relate to their advocacy goals.
NAS Advocates a) aim to build a working relationship with the person and to understand, respect and represent the person’s will and preferences. This will usually involve spending time with the person in their various environments. b) involve the person in all aspects of the process. c) keep the person informed throughout the process. d) access and /or assist the person to access relevant information about available choices. e) aim to present information in ways that assist the person to consider and weigh options and possible consequences in order to make their own informed decisions and choices. f) support the person to be directly involved in decision-making processes which affect them. g) ensure that all practicable efforts are made to remove any barriers to communication and to employ whatever methods or resources might assist communication.
NAS supports the right of every person to assert and enjoy their human rights, to participate in society as an equal citizen and to fulfil their full potential within a life of their own choosing… Standard 3.1: Independent, representative advocacy tries to ens ure that people’s rights are upheld. NAS Advocates a) work to protect and uphold the human rights of the person. b) work to uphold the person rights and status as a citizen. c) support the person’s right to take risks and experience failure. d) work to ensure equality through due process for the person, making full use of internal and external redress mechanisms where necessary and seeking further advice and support as required. e) maintain up-to-date knowledge of relevant policy and law and seek further advice where necessary. f) ensure, through following policy on conflict of interest, that they are able to challenge organisations and institutions where rights restrictions or violations are observed. NAS Management a) ensures advocates receive appropriate training and/or can access expertise as necessary in relation to rights, policy and law.
b) ensures advocates are fully supported by NAS, in accordance with the Conflict of Interest Policy, when challenging other organisations and institutions in relation to rights restrictions or violations. Standard 3.2: NAS, and all its publications and communications, are accessible to the people who may wish to use the service. NAS Advocates a) make every effort to communicate with a person using the person’s preferred communication style. b) explain the service as clearly as possible and as often as required. c) actively promote the service and seek out people who may not be able to easily reach the service. d) are flexible in making the service available at a time and place suitable for the person, subject to the lone working policy.
NAS Management e) provides all written publications in plain English. f) makes alternative formats available on request. g) makes Sign Language interpretation available on request. h) makes interpretation and translation to other languages available where practicable. i) supports advocates efforts to work in situations where communication is difficult through appropriate policies and procedures, toolkits, assistive devices, training and support.
Standard 3.3: Independent Advocacy is available to those who need it and services are allocated in a fair way. NAS Advocates a) have an understanding of direct and indirect discrimination and do not discriminate directly or indirectly against any person who may need independent, representative advocacy. b) apply policy and procedure in relation to enquiries, access and eligibility and prioritisation. c) clearly outline the access and eligibility criteria of NAS, explain the boundaries of the advocacy service and decline inappropriate cases sensitively and clearly with appropriate signposting and explanation of how to appeal the decision. d) if a waiting list is in operation, state the expected waiting period and keep the person updated on this.
NAS Management e) ensures that comprehensive policies and procedures around enquiries, access and eligibility and prioritisation are in place and that there is an appropriate appeals mechanism for refusal or discontinuance of service. f) ensures that policies and procedures are equality-proofed and do not directly or indirectly discriminate against any person or group. g) ensures that advocates are fully supported in applying policies and procedures around enquiries, access and eligibility and prioritisation.
Standard 3.4: The Service is proactive in seeking out people who have difficulty in getting a service and who may not be able to enquire or seek advocacy support. NAS Advocates a) promote the service in residential services and isolated communities. b) promote the advocacy service through varied channels. c) develop relationships with people living in residential services who may need independent, representative advocacy support. d) develop relationships with statutory and voluntary organisations to increase enquiry pathways.
NAS Management e) regularly examine policies, procedures and practices to ensure that they do not have the effect of excluding people with particular types or levels of disability or who live in particular settings. f) monitor gaps in service provision and proactively work towards solutions. g) promote the advocacy service through varied channels. h) provide information to agencies or individuals who are potential sources of enquiries. i) work in partnership with statutory and voluntary organisations to increase enquiry pathways.
NAS works with the person in a way which demonstrates respect for the person as an individual and for their privacy, dignity and autonomy. Standard 4.1. Independent, representative advocacy values the peopl e who use the service and always treats them with dignity and respect. NAS Advocates a) explain their role clearly to the person they are working with at the outset of the relationship and as required, in the manner most suited to that person’s preferred communication style. 22
b) give people space and time to express their views, recognising that some people need considerable extra time to establish communication. c) always respect the privacy and dignity of each person by the way they relate to them. d) do not do anything the person does not want them to do . Only in exceptional circumstances will decisions or actions be taken that conflict with a person’s wishes, in order to meet legal responsibilities or to prevent immediate and significant harm to the person or to others. The advocate will inform the person where such situations arise.
Standard 4.2: Independent, representative advocacy is accountable to the people who use the service NAS Advocates a) understand they are accountable to the person they are supporting and to NAS. b) are easily contactable by the person within appropriate hours, which are clearly explained to the person. c)
review the advocacy plan with the person on a regular basis.
d) share any information they have received about the person with the person. e) ensure everyone they support knows how to make a complaint about the advocacy they receive. f)
participate in regular case review and supervison to monitor work progress and ensure self reflection.
NAS Management g)
monitors who engages with NAS, including how cases are prioritised, and uses this information to identify gaps and inform development.
h) actively seeks feedback from people who engage with NAS and incorporates this into planning and service delivery. i)
has a clear, effective and accessible complaints policy and procedure.
Standard 4.3: Independent, representative advocacy is accountable under the law NAS Advocates a) work within the law. b) understand their legal responsibilities in relation to safeguarding and work within the relevant policies. c) are alert to legal arrangements which may be already in place (eg Ward of Court, Enduring Power of Attorney, Barring or Protection orders, Mental Health Act orders, arrangements under the 23
Assisted Decision-Making Bill when it comes into force etc.) and work appropriately to promote the person’s rights, will and preferences within these parameters or to challenge their validity through the appropriate channels. d) do not assist anyone to break the law.
NAS Management e) ensures appropriate policy and procedures are in place where specifically required by law. f) ensures policy and procedure accurately reflects current law and is regularly reviewed and updated.
Standard 4.4: Independent, representative advocacy is effectively managed NAS Advocates a) work within this Code of Practice and NAS Policies and Procedures, including access and eligibility criteria. b) inform their manager of any conflict of interest or other concern arising in a particular case.
NAS Management c) ensures advocates receive appropriate support, supervision and training. d) ensures appropriate case management policies and procedures are in place, are reviewed regularly, and are followed.
NAS aims to facilitate the person to be an active participant in decisions affecting them, through the way in which the advocacy process is carried out as well as the outcomes it seeks to achieve. Standard 5.1. NAS aims to facilitate the person to be an active participant in the advocacy process to the degree that they wish. NAS Advocates a) support the right of the person to be in control of their own life and to make informed decisions based on their will and preference. b) do not do anything the person does not want them to do. Only in exceptional circumstances will decisions or actions be taken that conflict with a person’s wishes, in order to meet legal responsibilities or to prevent immediate and significant harm to the person or to others. The advocate will inform the person where such situations arise.
c) work on the basis of the presumption of capacity and in all cases aim to support the person to exercise their decision-making capacity to the greatest extent possible. d) supports the person to identify as a rights holder and to assert their human rights. e) communicate in the way the person finds most suitable. f) work at the pace of the person. g) seek to involve the person in the process as much as they wish to be involved. h) assist the person to build their capacity to participate in the process, if the person wishes. i) when representing or assisting the person in external processes take every appropriate opportunity to promote the right of the person to participate directly and highlight the changes in process which that would require.
NAS Management a)ensures that policies and procedures support advocates to work in a way which is empowering to the person, including supporting adequate allocation of time. b) ensures that policies and procedures are reviewed regularly in light of feedback on the experience of people using the service and feedback from other stakeholders.
Version 1 Developed by NAS Policy Advisory Group November 2015 25
APPENDIX FOUR: ADVOCACY PLANNING ADVOCACY PLANNING POLICY 1.
The purpose of this policy is to set out the role of the advocacy plan in providing a framework for the advocacy process and ensuring that the process is guided by the wishes, rights and interests of the person.
This policy applies
to all situations where NAS advocates are considering how to develop and implement an advocacy plan with or on behalf of the person
to policy and resource allocation decisions by NAS management
Background and Guiding Principles
This policy relates directly to all NAS Core Values in the Code of Practice and should be read in conjunction with the Code. The advocacy planning process is one of the key ways in which NAS ensures the values of Independence, Autonomy, Equality, Respect and Empowerment are maintained throughout the advocacy process.
NAS aims to provide a person-centred service which is focussed around the needs and circumstances of each individual. In developing the advocacy plan the advocate will take as much direction from the person as possible but will also use other recognised approaches to ensure that the person’s rights, needs and interests can be represented in a transparent and accountable manner where it is not possible to rely solely on direct communication from the person.
The Equal Status Acts 2000-2011 prohibit direct or indirect discrimination on the grounds of disability in the provision of services. NAS aims to ensure that everyone will receive a standard of service which meets their needs. A person will not be excluded from advocacy or receive a lesser service because they communicate differently or because their disability affects their ability to give a clear indication of their views and wishes.
Every person has a right to access advocacy. This right is explicitly recognised in several contexts including:
HIQA National Standards for Residential Care for People with Disabilities (Standard 1.6) and Older People (Standard 3.5);
The Mental Health Commission’s Code of Practice “Guidance for Persons working in Mental Health Services with People with Intellectual Disabilities”; and “Code of Practice on Admission, Transfer and Discharge”;
Many HSE service-level agreements
In addition, the Assisted Decision-Making (Capacity) Bill 2013 does not explicitly mention advocacy but stipulates that no-one shall be assessed as lacking decision-making capacity unless all practicable means have been tried to assist them to exercise capacity.
NAS commitment to person-centred practice
NAS policies and procedures on eligibility, enquiries, prioritisation and case management recognise that people who communicate differently and/or are perceived by others as lacking decision-making capacity.
often have a particular need for advocacy
may have decision-making capacity which has not been supported, recognised or understood
have a right to access advocacy on an equal basis with people whose disabilities do not affect their ability to indicate their views and wishes
NAS recognises that working in a person-centred manner with people with varied and complex needs calls for a wide range of recognised competencies and skills and will ensure that advocates have adequate training, support and supervision.
Consent and Authority to Act
Where possible an advocate will obtain written authority from the person to carry out the advocacy plan.
If this is not possible and the person can indicate consent other than in writing, the advocate will record their consent, describing how it was given.
Where a person cannot give direct verbal consent to the involvement of the advocate, the advocate will spend time getting to know the person’s methods of communication, including body language and behaviour, and be alert to indicators as to whether the person is content with their interaction and involvement. Consent will be assessed on an ongoing basis and not assumed based on an initial interaction.
NAS does not seek the “consent” of any other party “on behalf” of a person who cannot express consent directly. There is no legal basis for proxy consent apart from Enduring Power 27
of Attorney and Ward of Court arrangements. NAS will engage with the Ward of Court Office/Committee/Donee of Power of Attorney as part of an advocacy plan where appropriate. 5.5
NAS advocates’ actions on behalf of a person are authorised by their adherence to the Advocacy Plan and to the NAS Code of Practice and Policies. Where necessary and appropriate, they will outline to third parties how their involvement and actions reflect this authority. Where barriers are posed by third parties (such as requests for an Authority to Act signed by a family member) the advocate should discuss this with their manager and agree an appropriate strategy.
Developing the Advocacy Plan
When beginning work with any person, the advocate will develop an advocacy plan. The plan will set out:
The issue(s) to be addressed;
The person’s will and preferences, as far as these can be established by direct communication where possible or by observation and/or gathering information from those who know the person well;
The advocacy approach chosen for each issue;
Strategy, actions, timeframes and key dates /deadlines where relevant on each issue;
The third parties relevant to addressing the advocacy issue..
The advocate will review the plan regularly with the maximum possible input from the person. 6.2
NAS advocates always work in a person-centred way, taking as much direction from the person as possible and paying attention to the person themselves and their relationship with their environment to establish what issues are impacting on the person. The aim of the advocacy process is to ensure that the person’s will, preference and interests remain central to all decisions affecting them.
Where the advocate is not able to rely solely on direct communication from the person in the development of an advocacy plan, one or a combination of a number of recognised approaches may be used to develop a plan. The approach chosen will depend on the person’s circumstances and the nature of the issue.
The approach(es) chosen in relation to each issue should be recorded. Advocates will document clearly why a particular approach or combination of approaches has been chosen.
Advocates will continue to be alert to opportunities to remove barriers to communication with the person and establish their will and preferences on an issue directly. 28
Advocates engage in reflective practice through support and supervision to ensure that all elements of the advocacy plan and all actions taken reflect the person’s will and preferences as far as these are known and/or support their rights and interests.
The advocate will be able to explain clearly how and why they came to a particular conclusion or pursued a particular course of action. The contributory factors and rationale for decisions will be clearly recorded in the case notes.
Everybody using the service will be informed of the complaints policy and procedure, where possible, and encouraged to raise concerns if they feel the advocate is not carrying out the advocacy plan as they would wish. If a person cannot make a complaint themselves, a complaint will be accepted from another person on their behalf. Anyone who comes in contact with NAS may make a complaint.
Communicating with third parties
NAS operates a confidential service. The advocate will seek direction from the person relating to the aspects of the advocacy plan they may share with relevant third parties. If obtaining direction on this is not possible the advocate will explain to relevant third parties the approach they are using in relation to a given issue at a given time and where necessary may explain decisions or actions with reference to the plan and the advocacy approach adopted.
Other policies which may be of particular relevance to situations covered by this policy include: Access and Eligibility Policy Prioritisation Policy Case Management Policy Equality Policy Complaints Policy
APPROACHES TO INDEPENDENT, REPRESENTATIVE ADVOCACY Definition: By “Approach” we mean a particular emphasis or focus that the advocacy plan takes in supporting a person to have the life they prefer. Four internationally recognised approaches to independent, representative advocacy are set out below: 1. Person-Centered 2. Witness Observer 3. Ordinary Life Principles 4. Rights Based Approach Practitioners report that an integrated approach is often most effective in delivering advocacy. With continuous training, education, and development NAS advocates and managers are competent and confident in using all of the approaches, either separately, or in combination.
Definition: By “person-centred approach” we mean a process of continual listening and learning, focussing on what is important to someone now and in the future, and acting upon this, being led by the client and where required in alliance with the circle of support. [Thompson J. Kilbane J. Sanderson H. (2008) Person Centred Practice for Professionals, Open University Press] NAS seeks to work always in a person-centred way, in the sense that advocates strive to keep people at the centre of decisions and the issues that affect them.
From the perspective of the person, who is advocated for, being person-centred could mean: You could take time to get to know me, learning about the way I communicate, gaining a deep understanding over time of what is important to me. You could spend time with me in places I spend my time and you could talk to people who say they know me well. Then you may feel you can relay my perspective with confidence so other people listen and you can represent what is important to me well. Overview of the approach This approach is generally understood to be based on a medium/long-term trusting and mutually respectful relationship between the advocate and person. In spending time with the person, the advocate builds up a picture of their lifestyle, preferences and needs which is aided by the advocate’s independence from service systems. The advocate is in a unique position to describe and, where 30
necessary, represent the person’s views ‘as if they were the advocate’s own’ (O’Brien, 1981). In doing so the advocate is raising the profile of the person’s unique perspectives, and as such is promoting a person-centred approach to service delivery and decision making.
NAS acknowledges that for some people there may already be others in their life taking a personcentred approach. NAS advocates, in some situations learn about what is important to and for the person by listening to the people they know and trust, in order to build up a picture of the relevant factors from their point of view.
ORDINARY LIFE PRINCIPLES [OLP] APPROACH
From the perspective of the person being advocated for: You could think about the quality of my life and think about how changes or decisions about my life will affect me. You can ask questions of powerful people who are making decisions about me to make them really think about the decision from my point of view – this keeps me at the centre of the decision so decisions are made which are in my ‘best interests’ from my point of view Overview of the approach This approach centres around eight quality of life domains which are used as the basis for a series of questions that the advocate can put to the decision maker or service provider on behalf of the person. OLP provides a framework for questioning and challenging the decision maker or service provider in a non-confrontational way and encourages services to put the person at the centre of the decision making process. OLP places the person at the centre of this process about the best way to support them to live their life in a way which reflects their own preferences and values, and reflects generic ordinary life principles. Using this model advocates must:
ensure that the services are made explicitly aware that the advocate is protecting ordinary life principles by referring to the eight domains to a quality of life and not expressing their personal view of the person. This distinction is crucial and is at the heart of understanding the notion of representative advocacy.
be clear in their own mind as to the difference between arguing for the person’s ordinary life principles and disputing the service provider’s methods of care implementation.
refrain from actively arguing for or against a particular support package; or any element of it. The advocates’ role is to use the elements within the ‘eight domains to a quality of life’ to question
and seek justification in order to promote services which undeniably meet the wishes and needs of the person. See Toolkits for relevant OLP approach documents. 3.
From the perspective of the person being advocated for: You could just watch me in my world and see what you can find out about my life, the way I am treated, the environments I spend my time in. You can see how people relate to me. You won’t make any judgements on what you see. What you see and report to people in my life could make them think differently about me and my life – it could lead to things getting better in my life. You could come back after a while to see if things have got better. Overview of the Approach There is a real value in the advocate’s role in being an observer or witness to the ways in which the person lives their life. The advocate may see or hear things that indicate the person’s preference will and pleasures which can in turn be used to represent the person. Conversely the advocate may see or hear things that are unacceptable or which pose a threat to the person’s wellbeing. The witness observer approach does not require the advocate to make judgements or assumptions, merely to report on the facts of his or her observations. In doing so, the advocate may be bringing to the attention of service providers or decision makers factors that they had not previously been aware of or taken into account. Examples would be lack of stimulation; dislike of certain people, foods, surroundings or activities; appropriateness of routines and systems; the communicative function of key behaviours or actions. See Toolkits for documents supporting this approach. 4. RIGHTS-BASED APPROACH From the perspective of the person being advocated for: You could think about my rights (which are the same as yours!) and make sure I get what I am entitled to, that I’m safe and that my rights as a person and user of health and community services are upheld. If you think something is happening in my life which breaks law or infringes my rights you may need to get legal advice or ensure there is effective representation. Overview of the approach: This approach begins with the premise that we all have certain fundamental rights that can be clearly defined and explicitly measured.
The advocate will work to ensure that the person’s rights are: 32
Respected [that is, having the right recognised, stopping people and institutions from denying or limiting the right]
Protected [that is, having laws and measures to ensure the right is not violated and prevent its violation]
Fulfilled [that is, given sufficient recognition, funding, and other positive acts that enable and assist enjoyment of that right]
Where the advocate is of the view that an individual’s fundamental rights are being limited, he or she is empowered to intervene on behalf of the person to challenge such limits and seek redress.
This may be the case where the person is being denied food or drink, is being restrained or held captive, or is the victim of abuse, neglect, mistreatment and exploitation. With this advocacy approach, the role of the advocate is to ensure, using a variety of means, that the basic human rights of the person are promoted and defended. These imposed limits are motivation to take affirmative action on behalf of the person. Where the advocate believes that the injustice being done to the person may be illegal, they should seek appropriate legal representation for the person. See Toolkits for documents supporting this approach.
INTEGRATING APPROACHES Effective advocates are skilled at working in an integrated way so that they do not rely solely on one or two of the approaches outlined above. Instead they are able to combine the approaches to represent the perspective of the person, and raise issues on their behalf in a credible way.
This policy will be reviewed as necessary and no later than July 2016.
Version No.1 Produced by NAS Policy Advisory Group November 2015
APPENDIX FIVE : STAFFING AND 2015 BUDGET NAS operates with the following staff (WTE) •
4 Regional Managers
8 Senior Advocates
NAS staff operates from 31 locations across the country and shares premises with Citizen Information Services (13), Money Advice & Budgeting Services (1), CIB (4) and other (13). The 2015 NAS budget allocation is €3,103,045. Approximately 80% of the budget relates to Employee costs.5
NAS Mid Year Report 2015 34
APPENDIX SIX : PEOPLE SUPPORTED BY THE NATIONAL ADVOCACY SERVICE IN 2014 The 2014 Service activity and caseload statistics are collated from www.advocacycase.ie. This is the electronic case management system developed to support casework in the NAS and in CISs. It provides a tool for case management, which supports consistency of approach, case review and safe storage and retention of files.
Provision of NAS services in 2014 was consistent with previous years.
NAS Case Statistics The number of people in receipt of services since 2011 NAS Statistics
People at Start of Period
Total Client numbers
People Supported By Type of Disability People with:
Mental Health difficulties
ORGANISATIONAL STRUCTURE The NAS Region WESTERN REGION • • • • • • • •
CLARE DONEGAL GALWAY LEITRIM LIMERICK MAYO ROSCOMMON SLIGO
MIDLANDS & NORTH EAST REGION • CAVAN • LAOIS • LONGFORD • LOUTH • KILDARE • MEATH • MONAGHAN • OFFALY • WESTMEATH GREATER DUBLIN REGION • DUBLIN • FINGAL • WICKLOW SOUTHERN REGION • CARLOW • CORK • KERRY • KILKENNY • TIPPERARY • WATERFORD • WEXFORD