This week, the Citizens Information Board (CIB) published the report of an evaluation conducted on its Programme of Support for Community and Voluntary Advocacy Organisations (see here). The CIB has funded 46 pilot advocacy projects nationwide since the establishment of the programme in 2007 and these projects provide advocacy support to people with disabilities to speak up about their rights and assert entitlements to essential social services.
The evaluation centred on the effectiveness of the community and voluntary advocacy pilot projects funded to date and the impact advocates had on the lives of people with disabilities they represented. In addition, the evaluation team was asked to assess whether there was a need to implement the Personal Advocacy Service (PAS) envisaged in the Citizens Information Act 2007. The report published is strongly in favour of the introduction of the PAS and sets out a number of recommendations on restructuring the current programme of support for community and voluntary advocacy organisations.
Before discussing the detailed recommendations made by the evaluators, it is important to bear in mind the context in which advocacy services for people with disabilities are developing in Ireland. The commitment to introduce legislation establishing the PAS was a key aspect of the National Disability Strategy as launched in 2004. However, due to the controversy surrounding the other legislative components of the strategy (in particular the limited recourse to the courts in the Disability Act), the introduction of the PAS was the aspect of the Strategy which had received the least attention from the media, disability activists and academics alike. In the current climate, much of the focus remains on cuts to frontline disability services (see Charles O’ Mahony’s post), and the failure to introduce the PAS is often overlooked – however, the introduction of a system where state-appointed advocates can support people with disabilities to challenge inappropriate, inadequate service provision, or lack of consultation in decisions made affecting them should be a vital concern. It is also a priority in ensuring Ireland’s compliance with the UN Convention on the Rights of Persons with Disabilities, particularly with regard to Article 12 on Equal Recognition before the Law and 13 on Access to Justice.
The Evaluation Report published this week refers to one of the first reports on Developing an Advocacy Service in Ireland, commissioned by the Citizens Information Board in 2004, which suggested that an effective national advocacy system should have three core elements – a statutory advocacy service (such as the PAS), a programme of support for community and voluntary organisations and a Community Visitors Programme (an independent investigative mechanism to monitor the treatment of people with disabilities in institutions). Of these three key ingredients for an effective advocacy service outlined above, only one is currently operational – the Programme of Support for Community and Voluntary Organisations.
It was originally envisaged that the programme of support would commence two years prior to the establishment of the PAS, so that the community and voluntary sector would be able to inform practice in the statutory service and highlight areas in need of urgent redress. However, the Programme of Support was launched in 2005, and although legislation on the PAS was passed in 2007, the establishment of that service has been indefinitely delayed. This has placed additional pressure on community and voluntary advocacy sector to reach people with disabilities who have fallen through the cracks of service provision, a key issue which has been identified in the Evaluation Report.
The PAS established in the Citizens Information Act 2007 is to be an independent state body whose function is to assist people with disabilities in accessing essential social services. Personal advocates are to assist people with disabilities in making applications for services and submitting formal complaints if services to which the person is entitled are not provided. These advocates can also provide support and training to the person and their family while applications or complaints are being made. Qualification for the PAS is based on need, so a person with a disability will be entitled to a personal advocate if she needs a service which she is unable to obtain without the assistance of an advocate and there is a substantial risk of harm to the person if they do not receive the service. Both adults and children with disabilities are eligible to apply, but in the case of children, it must be proved that their parent is not capable of assisting the child in obtaining their entitlements, before qualifying for a personal advocate. Applications must be made in writing and should state the services which the person is seeking. In acknowledging the issue of potential lack of resources, the legislation has also specified grounds on which the PAS should prioritise their services, respectively, urgency of needs and risk of harm, degree of benefit of having an advocate appointed and availability of alternative advocacy services.
By contrast, qualification for a community or voluntary advocate from the organisations funded by the CIB is entirely dependent on the criteria set by the individual organisation. Each pilot project employs a single advocate, who is overseen by a steering group (usually consisting of 4 or 5 organisations, some or all of whom may be disability service providers). The flexibility inherent in the current pilot projects was designed to allow organisations to cater for different groups of people with disabilities in need of advocacy (physical/sensory disabilities, intellectual disabilities, mental health difficulties, etc) and to provide whatever form of advocacy was deemed most appropriate in the individual’s particular circumstances. Some broad general guidelines were published by the CIB in 2005 (and updated in 2007) which set out the role and functions of funded disability advocates and general principles for advocacy practice.
The Evaluation Report found that most of the community and advocacy organisations examined were providing supports to adults aged between 18-64, and that very little advocacy was offered to children under 18 or to adults over 65. This is particularly surprising in the current context in the wake of the Ryan Report and the Leas Cross Report, and since it is clear that children and elderly people with disabilities would benefit significantly from advocacy support, the next phase of advocacy service provision must attempt to redress this gap. In assessing the overall effectiveness and impact of the advocacy services provided, the evaluators concluded that “advocacy has been a transformative experience for those using the service” and that it “brings a significant improvement in the lives of people who are vulnerable, marginalised, hidden, ignored or overlooked.” However, the Evaluation Report concluded that “the lack of standardisation of expectations, policies and procedures militates against unified standards.” The evaluators also noted that many of the complex cases undertaken by experienced advocates should be dealt with by a statutory advocacy system such as the PAS. The difficulties experienced by advocates in accessing those in need of advocacy (due to barriers or delays imposed by service providers and family members) could be substantially redressed by the introduction of the PAS. Case studies illustrated these difficulties very clearly, demonstrating how advocates were excluded from care planning conferences, meetings and consultations, despite in some cases having written permission from service users to attend. These examples demonstrate need for statutory powers to ensure that advocates can effectively represent those they support and be kept informed of developments relating to that person’s circumstances.
The Evaluation Report recommends the introduction of a new structure for the delivery of both community/voluntary and statutory advocacy services in Ireland. It proposes that future development of a national advocacy service should take place through the Citizens Information Service (CIS) network. This network already provides information on public services to members of the public in 250 locations nationwide and has a management structure which could ensure a coherent and consistent approach to the delivery of advocacy services. According to the evaluators’ recommendations, the CIB would retain overall responsibility for funding the Programme of Support for Community and Voluntary Advocacy Organisations, and the 5 regional boards of management of the CIS network would take responsibility for delivering advocacy at local level (employing advocates, agreeing protocols for advocacy practice, establishing a reporting structure, etc). This approach would also address difficulties noted in the report concerning the independence of advocates who are supervised by a steering group of service providers, especially where advocates may have to assist people with disabilities to make complaints against the service providers in question.
The report argues convincingly that this national structure will ensure the smooth operation of the PAS, once it is formally established. It is proposed that the Director of the PAS will be appointed by the CIB, and that “PAS powers will be devolved to senior advocates in each of the regions for those who are eligible under the legislation and by agreement with the Director of PAS.” In addition, this should ensure that statutory advocates retain links with the community and voluntary sector and that there is a clear system of referrals for those who need statutory advocacy. However, it will be important to sustain the current momentum to ensure that the PAS is indeed established. Finally, the report does not consider expanding the remit of the PAS as outlined in the Act but this should also be given serious thought, particularly in light of the proposed Mental Capacity Legislation. The appointment of advocates with statutory powers should certainly be considered for inclusion in this legislation as a less restrictive alternative to the imposition of adult guardianship, as this would be in accordance with the state’s obligation to support people with disabilities in the exercise of their legal capacity, as outlined in Article 12 of the Convention on the Rights of Persons with Disabilities.