Key functions of Comhairle are to support the provision of independent information, advice and advocacy services and to assist and support individuals, in particular those with disabilities, in identifying and understanding their needs and options and in accessing their entitlement to social services. The Comhairle Act, 2000 defines advocacy services as those in which the interest of a person seeking a social service are represented in order to assist such a person in securing entitlements to such a service but does not include legal representation. Comhairle is committed to supporting various approaches to advocacy and to working with other organisations to develop appropriate models.
In order to promote innovative thinking around the development and support of advocacy services, Comhairle engaged in a process of consultation in each of its five regions with selected voluntary/community and statutory agencies identified as providing advocacy services. This consultation took place during the period May to July 2002. The specific objectives were to:
A total of 11 fora were held, each of which was attended by a researcher whose task was to record and document the key elements of the discussions and prepare a report containing a synthesis of the main topics covered and the key issues emerging(see note 1). The reports from each of the workshops were collated to form the basis of the present report(see note 2).
Three main sections are included:
The Fora were attended by a range of organisations providing services that fell broadly within the ambit of advocacy. These mainly included organisations providing advocacy services as part of a wider range of services, particularly information and advice. In some instances there were specific target groups and there was a small number of dedicated advocacy services, e.g., working with and supporting people with mental health problems.
Some of the participating organisations did not define
their work as advocacy but rather as work that involved
representing and supporting clients and/or members in their
dealings with statutory agencies and other professionals.
This was a part of their everyday work of providing
services to their clients.
The underlying principles of advocacy work were
described by participants as:
Many of the participating agencies reported using advocacy generically in their work which was described as listening, supporting and empowering people and facilitating self-advocacy. The main areas of work/activity identified by participating agencies were as follows:
In practice, advocacy operates along a continuum, ranging from the provision of information on rights and entitlements at one end to enabling people to have greater control over their own lives at the other end. Intermediate stages include providing support, developing capability and ensuring equality of access.
Many participants felt they had built up skills in dealing with statutory agencies and that they possessed certain strengths such as empathy with clients, ability to help clients articulate need, the ability to listen and the ability to persist in the face of lack of response from service providers. They identified respect for the person, the client"s dignity and the client"s rights as the most important strength in their advocacy service.
While some organisations did not use the term "advocacy", others used a range of advocacy-related terms to describe the work of their organisation. These can be incorporated under the following broad inter-related categories:
Self-advocacy is essentially assisting and empowering people to be able to independently secure their rights and entitlements. It is related to the development of information capability which is based on the premise that citizens, groups and communities have the the capacity to identify their own information needs and to pursue their rights and entitlements accordingly.
Personal advocacy can be defined as providing help and support to people in accessing services and entitlements. This would also include patient advocacy and crisis advocacy
This refers to the formation of alliances and mutual support groups to pursue issues of common interest.
Citizen advocacy is the process by which people, usually on a voluntary basis, supportand advocate for individuals across the whole spectrum of daily living.
Forum participants referred to the existence of
significant barriers to accessing services,
including:
A key theme running through the Forum discussions was that many people do not have the skills or education to articulate need and to access support services accordingly. They need help in articulating their case to service providers. Some people, such as those with disabilities and those with literacy and numeracy problems, do not have an equal voice. Citizens sometimes need assistance in getting their rights and entitlements, particularly when faced with new challenges, e.g., illness, change of circumstances, advanced years. They may be fearful and overwhelmed and need an advocate to steer them in the right direction. The point was made that people"s, (e.g., parents of children with disabilities), stamina can at times be worn down by the complexity of the system and by inadequate responses from statutory organizations.
Advocacy services were seen as going some way to redressing the inequalities between the individual and large, powerful organizations and as also providing a platform for support and representation and lobbying for change at national level.
Advocacy work was seen as a valuable source of data, a feedback loop which could impact on the policy-making process.
The participating agencies (see Appendix) can be grouped into the following broad categories which frequently overlap:
CICs advocate on behalf of clients to varying degrees through writing letters, making
telephone calls, supporting people with employment appeals and networking with and acting as referral sources to other agencies. Literacy was regarded as a significant issue for many CIC clients with people requiring assistance with reading documents/letters, filling forms and writing replies. There are some CICs where individual staff have a particular expertise in the area of advocacy. Two CICs (Clondalkin and Sligo) have recently employed a full time advocacy worker on a one year pilot project basis.
MABS are involved in advising and helping people in debt and financial difficulties and make representations on behalf of individual clients with creditors and with statutory agencies, e.g. , Health Boards, as necessary. MABS staff also encourage and support clients to be self-advocates.
Resource Centres for the Unemployed provide welfare rights services, enterprise information, adult education, one to one guidance and advice to help long term unemployed articulate need and identify options. Some centres focus on the provision of an advocacy service for young clients, particularly in negotiating opportunities aimed at career path planning, usually with training providers and employers.
Area Partnerships provide a general information service which involves form filling and telephone calls on behalf of clients. Partnerships also pursue job and training placements for clients. In addition, they attempt to influence policy through submissions and through sub-groups in the various partnership structures.
The disability-related organisations present at the Fora reported that they offered a wide range of services, in most cases to particular target groups and frequently in residential settings. While some agencies saw their advocacy role specifically in relation to job preparation and placement, e.g., for people with intellectual disabilities, others aimed to represent their client/members in a broader fashion. The advocacy work reported can be described under three headings: work with people with mental health problems, with people with intellectual/learning disabilities and with people with physical and sensory disabilities.
A number of the participating agencies are involved in the area of mental health. For example, the Irish Advocacy Network is a national organization with branches nation wide. They have developed an accredited training course for people working as advocates. Eureka (based in Tallaght) provides an information service specifically in the field of mental health and assists people with mental health problems in pursuing their rights and in accessing supported housing, counselling and alternative therapies. Schizophrenia Ireland provides information, advice and support and pursues a policy of "peer advocacy".
Some of the participating agencies work with people with intellectual/learning disabilities and provide advocacy services for their users. For example, the Brothers of Charity have an internal advocacy structure operating at local, regional and national levels where clients are assisted by staff to articulate needs. The St. John of God services incorporate an advocacy dimension to their work which often involves talking to parents regarding the client"s wishes and options. Prosper Fingal includes advocacy as an integral aspect of its services for people with learning disabilities.
A number of agencies working with people with physical and sensory disabilities were represented. For example, theIrish Wheelchair Association advocate on behalf of clients in pursuing the full social, economic and educational integration of people with disabilities. They also encourage clients to become active within the organization and to engage in group advocacy. The Multiple Sclerosis Society of Ireland provides supports and services to people with multiple sclerosis and their families. Enable Ireland provides services and advocacy for children and adults with physical disabilities. The National Association for Deaf People provides advocacy as part of its CIC service.
Other participating groups providing advocacy services in various forms included a support group for women in prostitution, older persons" support groups, Travellers" support groups, a project working with families under stress and a Health Board support service to drug abusers.
The main points emerging from the consultation process are presented here under five headings: background to advocacy work, different approaches to advocacy work, obstacles inherent in the system, developing advocacy services and target groups identified.
The general view that emerged in the Fora was that advocacy work is operating at present on largely an informal basis. It is happening in a haphazard manner and without a strategic context. However, it was also recognised that, as already stated, often organisations and agencies are actually involved in advocacy work, but do not use the term.
Some participants made the point that in the re-organisation and mainstreaming of services, vital individual support services formerly provided by the NRB were no longer in existence and stated that a new advocacy service for people with disabilities is required to fill that gap.
There was a recognition that advocacy work operates on different levels. So, for example, it was considered that CICs provide a first level service at present, through, for instance, help with form filling. There was also a distinction drawn between "short-term advocacy", e.g., once-off interventions and support to address a particular issue, and "long-term advocacy", e.g., for a person with an ongoing disability or otherwise needing ongoing support. Indeed this concept of short-term and long-term advocacy may explain why specialist agencies appear to think more in terms of empowerment than information providers. The latter are involved generally in short-term advocacy. As a result, the reality may be that people seeking advocacy to get a state benefit are looking for someone who will fight their case for that benefit and hopefully get it for them as quickly as possible, rather than looking to be empowered. By contrast, the advocate for a person with a lifelong disability may be more inclined to adopt a long-term strategy of empowerment. Of course, this is not to deny that perhaps the person, who wants help to get a state benefit, is also being empowered so that s/he can fight for his/her rights without help in future.
Three broad approaches to advocacy work can be identified from the Forum discussions:
While none of the contributors appeared to see the models as being mutually exclusive, the comments generally appear to demonstrate a leaning towards one or other of the models. Comments from the representational view of advocacy referred to, for example, "representation", "listening and acting on behalf of", "naming, blaming and claiming".
By contrast those emphasising the empowerment model spoke of advocacy involving:
"equipping people with the necessary skills", "assisting self-determination", "empowering and not acting in a "saviour" role".
Those leaning towards a support model indicated that advocacy involved: "helping people deal with issues", "supporting people", "being there for someone", "facilitation". This approach included the presentation of information choices in an impartial manner, allowing the individual to make the final choice.
Overall, there was no clear indication whether this difference in approach in terms of models is in any way connected with the type of agency involved, for example, generalist information provider as compared with specialist support agency. However, it is reasonable to suggest that the empowerment model may feature more amongst specialist agencies, while the representation/support models are more likely to be adopted by services involved in information provision.
Although much of the discussion in the Fora centred on the role of advocacy in the context of individual casework, there was also a recognition of advocacy in a wider context. For example, a question was raised as to the role of advocacy in situations where relevant services are not available in the first place. The answer given was that the provision of advocacy resulted in gaps in service provision emerging which could be brought to bear on policy formulation and legislative change. Advocates were thus seen as having a wider role to educate service providers as to the needs and rights of a particular group. There was, however, the contrary view expressed that the advocate should only act on behalf of an individual and that the wider policy feedback role should be catered for through other structures.
A number of factors were identified as impinging on people"s access to entitlements and services and which, therefore, had a bearing on the type of advocacy services needed.
All of the Fora identified the need to place advocacy work on a more formal footing. This was described in one Forum as the service having a paralegal role. Dedicated training (coupled with accreditation) was a recurring theme and was seen as essential to the establishment of advocacy at the more formal level. This was particularly the case if advocacy services are to develop beyond the basic level referred to above (i.e. initial information, phone calls, letters etc.) and take on a more in-depth specialist role.
Common areas of need identified were funding, resources, staff continuity, staff supervision and support, internal and external training. Strategic development and ongoing monitoring and evaluation were also identified as key requirements. Practical issues such as insurance and indemnity were also raised.
The question of how dedicated advocacy workers might be employed was considered, for example, whether a wide range of individual voluntary/community groups would employ advocates or whether advocates would be employed by one agency regionally with local groups referring people as required.
More work was called for in order to identify good practice models and to formulate protocols for action. Improved feedback mechanisms were seen as necessary to facilitate change and improvement of services. The following were regarded as essential components of the development of advocacy services:
There was a clear view that the provision of advocacy should be based on individual needs assessment -- for example, not everyone with a disability has the same needs. Specific groups likely to need advocacy were identified as follows:
It was emphasised that membership of any grouping does not automatically imply need for an advocate. Needs vary from group to group and from person to person. However, those with severe learning difficulties and those in long term care settings were identified as groups who have a particular need for an advocacy service. People who are housebound were seen as needing a domiciliary information, advice and advocacy service.
Those in closed institutional settings were regarded as particularly vulnerable. It was emphasised that it was critical that an advocacy service for such persons be independent of the agencies and authorities providing the services. As already stated, there was a view that an advocacy service depending on funding from these agencies may have potential conflict of interests. It was also stated that there is a huge need for information and advocacy services among clients of psychiatric services.
The needs of those with low levels of literacy were seen
as requiring greater attention in the context of ensuring
that all sections of the public are fully informed about
rights, entitlements and existing services.
There was a strong consensus about the issues and the
development needs among all of the participating agencies.
The development needs identified referred in the main to:
training, good practice, resources and support structures.
While a variety of different advocacy methods are needed to
cater for different situations, resources, training and
support should be such as to foster an approach that
maximises individual capability and promotes self-advocacy.
At a more subtle level it must be recognized that people
may lack the capacity to articulate their needs/wishes.
Building the capacity to self advocate is, therefore, vital
and should be funded as a key part of an advocacy
service.
A need for a new ethos of service delivery for people with disabilities was identified. For example, one view expressed was that a new born child with disabilities should as of right be allocated an advocate from birth to ensure that s/he had all that was needed to become a self- actualising human being capable of fulfilling his/her full potential. This now happens in Canada where the advocate convenes a multi-disciplinary team to draw up a package of care. Those responsible for implementing the programme are identified and the advocate is assigned an ongoing monitoring role.
A substantial need for staff training in advocacy skills was identified. In this context it was felt that there was a need for skills audits amongst staff, both full-time and volunteers.
Training was required on two fronts - generic advocacy training in the first instance with additional training in speciality areas as required. The basic training should be geared towards heightening the sensitivities of advocates, e.g., disability awareness training. Training for peer advocacy was identified as vital. There was also a need for training for a self-advocacy role, for example, for people with disabilities.
Training should include:
Appropriate accreditation of training was regarded as highly important. There is a need for an Irish based, client centred training programme in advocacy skills. Initiatives mentioned were the Irish Advocacy Network designed programme to train peer advocates.
The point was made that second level education should promote the concept of self advocacy among all citizens.
There was concern that models of best practicewould be taken fully into account in the setting up of advocacy services. The main Good Practice components identified referred to - confidentiality, monitoring and evaluation, transparency, a client led and client empowerment ethos, good record keeping, good inter-agency networking, non- judgmental ethos, realistic expectations by both staff and clients, adequate and ongoing training for workers, security of funding for the service, mechanisms to influence policy, community development/bottom up model and provision for different advocacy approaches.
The following were identified as the key factors to be
taken into account in the development of advocacy
services:
Advocacy should be provided at the point of service
delivery rather than as an additional service.
Advocacy work is generally regarded as resource, skill and time intensive. Resources are required at two levels:
Funding for advocacy work should be additional to funding that is primarily service-related in order to maximise capacity and not undermine or compromise the service-providing role. In a general way people working as advocates need to have access to a range of supports, including panels of experts with whom they can consult in difficult cases. Up to date IT and Internet access were regarded as essential for effective advocacy work. Funding to independent information/advice services should be such as to enable them carry out advocacy as an integral part of their work.
The Forum of People with Disabilities (2001) report(see note 6) referred to the need for paid, named and trained advocacy workers who can deliver and support advocacy - "disabled people need to know how to access advocacy workers, where to access them, and that they operate under a code of practice and ethics" (p.42).
The following were identified as specific areas
requiring immediate attention:
The implications for action arising from the Forum
discussions can be stated under four main
headings:
developing advocacy as an integral part of independent information provision;
training and skill enhancement;
identifying models of good practice;
identifying areas where specialist advocacy services are required.
The development of independent information services is based on the premise that access to information is much broader than physical access to buildings and databases, important as these are in themselves. It also means dealing with barriers to access, including lack of awareness, the institutionalisation of information and the need to develop the capacity of individuals to identify their own information needs and to act on that information as required. In the context of advocacy, as much attention needs to be given to the conversion and use of information as to its provision.
Citizens themselves can often have a good understanding of their needs and their local situation without having the ability to express this verbally. What they require is a language to enable them to articulate those needs and to assert their rights. Information workers have a fundamental role to play in promoting awareness, access to and the effective exploitation of information. While citizens may be capable of using information purposefully, they may not have the time, resources or skills to identify, locate and exploit information that is not immediately available to them. The information worker thus becomes an enabler and facilitator as well as a provider and advocacy is a way of working rather than an end in itself.
The enhancement of advocacy in the information-giving context also needs to take account of the fact that individuals are, to a greater or lesser degree, part of local communities and frequently tend to have unstructured information environments in their everyday lives. Networking is thus highly important and opportunities for liaison, information exchange and mutual support need to be promoted. The vitality of local networks is fundamental to promoting awareness, access to and exploitation of information within communities. There is thus an important local development component to the provision of a comprehensive information/advice/ advocacy service.
This approach avoids the trap of operating on a "first come-first served" basis. Rather information strategies, including advocacy and representation, are developed in accordance with needs identified by individuals and groups in the community.
As part of this dynamic, self-advocacy by citizens becomes a key goal of the service but in reality the service would do some of the advocacy work while promoting capacity development and self-advocacy as far as possible. This approach would also facilitate the process of highlighting issues which are of concern to users of services and thus strengthen the link between advocacy and social policy work. Additional mechanisms are required to ensure that the advocacy aspect of the work of independent information providers is recognised and accepted as legitimate by statutory bodies
Further work is required to develop this broader approach in CICs and other independent information/advice services and to enhance their current way of working. In the first instance, a small number of CICs might be targeted to test out this approach in conjunction with other community-based organisations. The experience and learning from the two Comhairle-funded CIC pilot advocacy projects and other current initiatives at local level would obviously be important in this regard.
A key point that emerged from the discussions was that there is a significant need for comprehensive and ongoing training in advocacy. Such training needs to be at a number of levels to cater for both those who engage in advocacy as part of an information giving role and advocacy "specialists" who work full-time with specific categories of people.
Training needs to be developed at three
levels:
Ongoing work is required in respect of identifying, promoting and supporting good practice in advocacy work.Existing relevant initiatives in the Irish context need to be assessed and evaluated to identify appropriate structures and parameters for such services.
Joint working on an ongoing basis should take place between Comhairle, the National Disability Authority, the Equality Authority and other relevant statutory and voluntary/community organisations to explore further the development of specialist advocacy services in both institutional and non-institutional settings. This would include:
