NATIONAL ADVOCACY SERVICE FOR PEOPLE WITH DISABILITIES: Capacity and consent in advocacy

by Louise Loughlin, Regional Advocacy Manager, Region 2 (Westmeath Citizens Information Service) National Advocacy Service for People with Disabilities

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The National Advocacy Service for People with Disabilities was formally launched on the 30th March 2011 at Dublin Castle by the Minister for Social Protection Ms Joan Burton TD. The National Advocacy Service provides independent, representative advocacy for vulnerable people with disabilities. It is a countrywide service managed by five Citizens Information Services in Dublin (Clondalkin), Westmeath, Offaly, Waterford and Leitrim. The service is funded and supported by the Citizens Information Board.

Advocacy has been defined by the CIB in 2007 as ‘a means of empowering people by supporting them to assert their views and claim their entitlements and where necessary representing them and negotiating on their behalf’. The new service aims to provide advocacy services for people with all types of disabilities, that is to say, physical disabilities; sensory disabilities; intellectual disabilities and mental ill health. Those who are most vulnerable could include a person living alone in a rural setting, or a person in an institution.
In relation to the issue of capacity itself, it is important to give consideration to the European Convention on the Rights of Persons with Disabilities. Ireland has signed this convention but has not yet ratified it. Article 12 of the said Convention provides that ‘Persons with Disabilities enjoy legal capacity on an equal basis with all others in all aspects of life.’

All those engaging with persons with disabilities from service providers, statutory agencies to community and voluntary agencies should start from the premise that an individual has capacity to understand the nature and consequence of a decision in the context of available choices at the time. All adults are therefore presumed to have capacity unless proven otherwise. Such a decision is to be made on the balance of probabilities.

A person only lacks capacity if they are unable to

  • understand information relevant to the decision
  • use / weigh that information as part of the decision making process
  • communicate the decision by any means even involving a third party.

It is often the case that in reaching those who are at their most vulnerable, the individual concerned may not have a recognisable system of communication. This could be, for example, due to an intellectual disability or a physical disability such as through an acquired brain injury as a result of a road traffic accident. Providing advocacy for such an individual has often been described as non-instructed advocacy. The National Advocacy Service prefers to adopt the terminology used by ASIST (Advocacy Services in Staffordshire England), who use the following definition, ‘A policy for offering advocacy to people who do not have a system of communication that is recognised by the advocate.’

This area of advocacy can present many challenges for the client, the client’s family and the advocate as well as any service providers engaged in the process. Much literature and discussion has taken place over recent years on this particular topic.

The nub of the issue is really, where a person is unable to provide informed consent to engage with the advocacy process, how can an advocate truly know what that client’s wants, needs and desires are; and thereafter how can the advocate then go on to present that person’s case?

The starting point therefore is to recognise that each of us as a human being has certain rights that are germane to our existence. In the area of advocacy these are often referred to as the 8 domains to a quality life and can be summarised as follows:
1. Competence

2. Community presence

3. Continuity

4. Choice and influence

5. Individuality

6. Status and respect

7. Partnership and relationships

8. Well being.

Therefore, advocates who are engaged with clients who do not have a system of communication that is recognised by the advocate, can use the 8 domains to a quality life to ascertain how a proposal would impact upon the client. For example, where an individual resides in an institution, and a proposed change is made with regards to other residents who may share a room or be in close proximity to the client, the advocate may wish to observe how that individual affects the client. Does the client become more relaxed or more agitated in the presence of that individual? Do they express a desire to leave the vicinity of that individual or to remain in their presence? By working carefully, closely and over a period of time an advocate can begin to understand how these 8 areas work for each individual. The advocate can perhaps then go on to negotiate with the institution and/or any other service provider as appropriate. In the above instance, perhaps the client would wish to remain in close proximity to their current neighbour rather than have that neighbour moved away from them.

In the past, if an individual may have been unable to express a need or an intention to make basic life choices, it was assumed that they were incapable of making those decisions. This often led to situations where it was assumed that persons with intellectual disabilities who are unable to provide their consent, were satisfied with living life in congregated settings such as institutions; had no choice on how to spend their day or what activities they were involved in, had limited or no access to their own funds and were deprived of engagement in their immediate community. The National Advocacy Service can develop the relationship with the individual and by working through the advocacy process, ascertain how the person’s choices can be implemented where at all possible.

The National Advocacy Service is presently engaged, along with members of the National University of Galway Centre for Disability, Law and Policy and CIB, in a non-Instructed Advocacy Working Group. The purpose of this working group is to define what we mean by non-instructed advocacy, to establish protocols and referral procedures for dealing with such cases, and to provide all members of staff of the National Advocacy Service with a clear set of policies and procedures to undertake such work.

We should not lose sight of the fact that advocacy for people with disabilities delivers significant value and can be a transformative experience for those using the service. The National Advocacy Service is part of the CIB family, is wholly independent from any service provider, and we aim to be as free from conflict of interest as far as possible. The National Advocacy Service aims to provide a Person-centred approach to advocacy and the work undertaken should be tailored and proportionate to each individual’s circumstances. The service aims to be of a high quality with highly capable advocates who are supported by regional line management and form part of a national structure. There are opportunities for professional development and professional delivery. We aim to provide a seamless service where advocates will offer nationally a quality assured, valued service that is accessible to people with disabilities and actively seeks out those who are most vulnerable, regardless of disability type.

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