I thank the Chairman and members for the opportunity to address the joint committee today. .I will speak from the experience of the Citizens Information Board on the establishment of an independent advocacy service for people with disabilities and I hope our experience will inform this discussion.
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 an accessible manner which facilitates people in using those services and minimises the need to seek help from others to understand and use the services.
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.
There are still more than 3,000 people living in congregated settings. 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; 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.
During the past four years the National Advocacy Service, NAS, for people with disabilities has worked intensively with more than 2,000 people, supporting them to have their voices heard. In addition, NAS has engaged with significantly more people by phone, linking them to other services if their service need was other than advocacy or if their inquiry did not correspond with the access criteria to NAS. NAS targets its service offer to people with disabilities who are isolated from their community and services, have communication difficulties, are inappropriately accommodated, live in residential services, attend day services and have limited or no natural supports.
In 2014, more than 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, which would be a significant part of the work.
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.
We set up 46 pilot advocacy projects for people with disabilities in collaboration with a range of community based organisations around the country. In 2008, when the implementation of personal advocacy service, PAS, was placed on hold and the sections of the Act were not implemented, we started to look at the various stages of development of the national advocacy service, which has been restructured a number of times and is now one national organisation, the National Advocacy Service for People with Disabilities, NAS.
In terms of its remit, 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. It is staffed by 28 advocates, eight senior advocates and managed by four regional managers and a national manager, supported by five administrative staff. There are 45 staff. Given the remit and resources of NAS, it is inevitable that it reaches only a small number of people who could benefit from the support of a representative advocate. Representative advocacy is a relatively new service in Ireland, and drawing on 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 standards.
Independence is absolutely central to the work of the National Advocacy Service, NAS, in that the advocate will not share information with third parties unless directed by the person. Of particular importance is that the 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, namely, witness observer, person centeredness, rights based approach and ordinary life principles. In that context an experienced advocate can and does represent the will and preference of people who communicate differently and who cannot articulate their wishes. This requires time and skill, support 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.
NAS has experienced a wide range of expectations and misunderstandings as to what representative advocacy is and should be. This is a very important issue in the context of the new service being set up. 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.
I welcome the developments the Ombudsman is talking about. NAS assists people in making complaints. NAS tries very hard to work to seek an early resolution prior to people having to go into the complaints procedure because of the complexities of the complaints process. NAS also supports people to make complaints to the Office of the Ombudsman and we try to support people right through that process.
A key issue for the National Advocacy Service is the need for statutory powers. That is very important to consider in the context of all advocacy work. NAS frequently experiences issues with service providers when seeking information and meaningful engagement with the advocacy process. There continues to be misunderstanding about what advocacy is. The services may engage with advocates but this can be experienced as tokenistic. This is hugely time consuming for advocates and can take time away from working with other people who need the service.
Although NAS continues to engage in extensive relationship building with services, the lack of statutory powers means that issues can arise in the following areas: Access to services – where providers do not facilitate NAS’s presence in situ; access to information – where an individual cannot give written consent, NAS may not be able to obtain access to documents; decision making – as services slowly begin a cultural shift away from "best interests" to the will and preference of people, many decisions are still being made on behalf of individuals without reference to the person, their will and preference and-or their advocate; and, there is obfuscation through delays, that is, delays in replying to the National Advocacy Service, delays in replying to correspondence and delays in giving access to key decision makers.
The NAS has welcomed the incorporation of advocacy into HSE and service provider service level agreements, but it is essential that there is training and capacity building for service provider staff about advocacy and that this is included as part of staff training and development. On some occasions when an advocate presents, the front-line staff and local manager are unaware of the inclusion of advocacy in service agreements and do not understand why an advocate has been requested or what their role is. Sometimes they think advocates are inspectors and therefore can be circumspect about the advocate's involvement. Senior professionals and management can be equally so. The NAS provides information sessions on advocacy and training for staff, but it does not have the resources to deliver all of this. A joined-up approach to training and awareness-raising is required. All services should be obliged to train their staff on working with advocates. This will assist in breaking down barriers so people with disabilities and others can be recognised as equal citizens and their voices can be heard. Currently, the CIB is in discussion with the Department of Social Protection to seek statutory powers for the NAS to overcome these barriers.
With regard to the recommendations the CIB and the NAS wish to make, one relates to statutory powers to ensure a right of access and information and for meaningful engagement with the NAS and other advocacy service providers. In terms of an over-arching framework for advocacy, I share the views of my colleagues that there are many different forms of advocacy and many different providers in Ireland, all playing valuable roles. However, there is a need for the establishment of a framework of advocacy which would identify the different advocacy models and different advocacy providers; provide a co-ordinated approach across services and linkages; establish accessible information on advocacy, including a dedicated website; establish national standards and quality assurance in advocacy and mechanisms to ensure these standards are met; and, provide 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. There is a need for training and capacity building around the range of service providers involved in both health and social care with regard to person centeredness and advocacy to enable a cultural shift. Advocacy should be incorporated into service level agreements and other contractual and policy documents. There must be a continuation and strengthening of advocacy in HIQA standards and a review of those. These standards should be used as an assessment tool by regulators and inspectorates.
To conclude, measuring the impact of advocacy provision is an important piece of work and requires more attention. In the CIB, we have seen how effective the NAS independent 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. It gives voice, highlights need and highlights gaps and inadequacies. It means that those who cannot shout the loudest have somebody to speak up for them. We are all entitled to be heard but 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, over time the requirement for advocacy services should lessen.
The NAS looks forward to continuing to support people with disabilities and to working with a range of service providers, including our colleagues here, to ensure the upholding of the individual's will and preference.