TWENTY YEARS ON: The Commission on the Status of People with Disabilities and the development of advocacy for people with disabilities

This year marks the 20th anniversary of the first meeting of the Commission on the Status of People with Disabilities (the Commission). Advocacy featured prominently in the work of the Commission. In this article, Jim Winters, Inclusion Ireland, looks at the some of the significant milestones in the development of advocacy for people with disabilities since that inaugural meeting of the Commission in November 1993.

0
3596
Introduction

The 1990s was an important decade for the advancement of human rights of people with disabilities. Internationally, the UN ‘Decade of Disabled Persons’ came to an end in 1992. This culminated in the UN adoption of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities in 1993. The Standard Rules provided governments with a human rights framework for disability policy and legislative reform.

It was against this background that people with disabilities in Ireland began to mobilise and claim their rights as equal citizens. The Forum of People with Disabilities, a grassroots advocacy organisation led and managed by people with disabilities, was established in Dublin in 1990- The Forum advocated for the recognition of people with disabilities as citizens with equal rights. Mary Robinson, a barrister and human rights advocate who endorsed the aims of the Forum, was elected as the first female President of Ireland in 1990- The concept of equality was a recurring theme throughout Robinson’s electoral campaign. In 1992 the first Irish Centre for Independent Living (CIL) was established by people with disabilities in Dublin. The right to independent living and participation in society as equal citizens were key aims of the CIL. The prevailing narrative of disability as charity was challenged by people with disabilities. Disability, they argued, was a human rights issue and the concept of advocacy was central to that. They wanted government action.

The Irish government responded by establishing a Commission to ‘advise on measures necessary to ensure that people with a disability can exercise their rights to participate, to the fullest extent of their potential, in economic, social and cultural life’. The Commission on the Status of People with Disabilities held its first meeting in November 1993. Over the following three years it engaged in a comprehensive process of research, engagement and consultation on a wide range of issues affecting people with disabilities. Advocacy featured prominently in the deliberations of the Commission. Its final report, A Strategy for Equality, was presented to government in November 1996.

Understanding advocacy

There is no widely accepted definition of advocacy. It is a broad, contested concept, subject to a variety of interpretations. ‘Advocacy is both local and global, individual and collective, and a personal and political process’ (Birmingham, 2001: 9).

Advocacy can assist people with disabilities to make decisions that might otherwise be made for them by others. It recognises that every person has the fundamental right to self-determination and personal autonomy. Advocacy comes in many forms and operates at different levels. It operates both formally and informally. Some of the most widely used forms of advocacy associated with people with intellectual disabilities include self-advocacy, citizen advocacy, representative advocacy, and parent /family advocacy.

• Self-Advocacy involves the act of speaking up for oneself- It can take place individually and collectively.
• Citizen Advocacy involves the provision of advocacy support by a volunteer advocate. Citizen advocates develop longterm relationships with their advocacy partners.
• Representative advocacy involves the provision of independent advocacy by a professional advocate. It is usually short-term and deals with complex issues.
• Parent/family advocacy involves a parent or family member advocating for a child/family member.

There are strengths and weaknesses to each form of advocacy. Each has the potential to be used to protect and promote the human rights of people with disabilities, and they are not mutually exclusive. A person may require different types of advocacy support for different issues. For example, a person with an intellectual disability who has a parent or family member supporting them may also require the services of a representative advocate in respect of a critical or complex issue (e.g. in order to participate in a tribunal or in legal proceedings).

Advocacy and the Commission

The Commission acknowledged the importance of the various forms of advocacy in the lives of people with disabilities. However, it also placed a strong emphasis on the importance of self-determination and personal autonomy.

‘The Commission believes that advocacy is essential because it allows people to participate more fully in society by expressing their own viewpoints, by participating in management and decision-making and by availing of the rights to which they are entitled.’ (A Strategy for Equality, 1996: 95).

The Commission recommended that independent advocacy services should be mandatory in all institutional-care settings. It recommended that the post of advocate be established by statute. The Commission also made a number of recommendations in respect of the need for self-advocacy and citizen advocacy. The Commission acknowledged the fundamental right of people with disabilities to access justice on an equal basis with others. It recommended that ‘funding be provided by the Legal Aid Board to ensure that people with disabilities can employ an advocate to access expert legal representation, where necessary’ (A Strategy for Equality, 1996). The Commission warned that proper implementation of many its recommendations was dependent on the availability of effective advocacy services.

Advocacy since the Commission

The establishment of the Irish Council of People with Disabilities (the Council) in 1997 was one of the recommendations made by the Commission, believing that the Council would fulfil a central role in advocating for the implementation of the Commission’s recommendations. The Council was a publicly funded body comprised of people with disabilities. It established a national office and regional and local networks of people with disabilities. The Council was renamed as People with Disabilities in Ireland (PWDI) in 2000-

In 2002 Comhairle was established as the public body with responsibility for information, advice and advocacy in respect of access to social services. In the early 2000’s Comhairle provided funding to a number of organisations to develop advocacy for people with disabilities. It also commissioned Goodbody Economic Consultants to report on how advocacy could be developed for people with disabilities. The Goodbody Report (2004) set out a strategic approach to developing advocacy services for people with disabilities, recommending a three-stranded system. This was to involve a programme of support for community and voluntary organisations to provide advocacy services; a Personal Advocacy Service with statutory powers; and a Community Visitors Programme. The Community Visitors Programme was to be a form of citizen advocacy, which would focus on children and adults with intellectual disabilities in institutional care. The Goodbody Report mirrored many of the advocacy recommendations previously made by the Commission.

Following the recommendations of the Goodbody report, Comhairle introduced a programme of support for community and voluntary organisations to provide advocacy services. Although the majority of the funded projects provided representative advocacy to people with disabilities, a range of other forms were supported, including a number of citizen advocacy initiatives. In 2011 the Citizens Information Board (formerly Comhairle) introduced a National Advocacy Service for people with disabilities, providing a representative advocacy service with a particular focus on more vulnerable people with disabilities. The National Advocacy Service replaced the CIB programme of advocacy in the community and voluntary sector which ended in 2010-

The introduction of the Citizens Information Act 2007 marked a significant milestone in the context of advocacy for people with disabilities. This groundbreaking piece of legislation provides for a legal right to advocacy for people with disabilities. It provides for the introduction of a statutory ‘Personal Advocacy Service’, with the post of Personal Advocate established in law (as recommended by the Commission the Status of People with Disabilities). Personal advocates would have legal powers to enter premises, make enquiries on behalf of people with disabilities in residential and day services, and pursue a right of review or appeal on behalf of a person with a disability. It would be a criminal offence to obstruct or hinder a personal advocate in the course of his or her official duties.
However, in 2009 the government announced that it would not yet proceed with the section of the Citizens Information Act dealing with the Personal Advocacy Service because of ‘budgetary constraints’ (Mary Hanafin, Dáil Eireann Debates, 30 April 2009). It remains to be seen when the Personal Advocacy Service will be introduced.

UN Convention on the Rights of Persons with Disabilities

The Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the UN General Assembly in December 2006 and entered into force in May . The CRPD reaffirms the right of every person with a disability to self-determination, autonomy, equality and dignity. The CRPD sets out the steps that governments and public bodies must take to ensure that people with disabilities have their human rights protected, promoted and fulfilled. A key provision of the Convention is the right of people with disabilities to receive assistance in exercising their decision-making capacity (Article 12). This has particular relevance to people with intellectual disabilities.

Ireland was one of the countries to sign the CRPD when it was opened for signature on 30 March 2007. 155 countries have now signed the CRPD and it has been ratified by 127 member states. Although it has not yet ratified the CRPD, as a signatory, Ireland has demonstrated agreement with the principles enunciated in the Convention, and its intention to comply with its provisions.

Conclusions

There have been significant developments in the area of advocacy for people with disabilities since the first meeting of the Commission on the Status of People with Disabilities in 1993. However, the intervening period is marked by examples of the withdrawal of funding and support for a number of advocacy initiatives and organisations. The Forum of People with Disabilities, which had been such a driving force behind the development of advocacy for people with disabilities, closed in 2006. PWDI closed in December 2011. State support for advocacy has almost exclusively focussed on representative advocacy. There has been little support for the development of self-advocacy and citizen advocacy.

The introduction of the National Advocacy Service has been a positive development. This is of particular significance to thousands of people with disabilities living in unregulated residential services. However, the continuing failure to introduce the Personal Advocacy Service is a considerable setback for people with disabilities and disability rights.

As the Commission on the Status of People with Disabilities and the UN Convention on the Rights of Persons with Disabilities have enunciated, the availability of a range of advocacy services is vital in ensuring that people with disabilities enjoy full and effective participation in society as equal citizens. In Ireland, adequate support and funding for a broad spectrum of advocacy are essential.

References

Action for Advocacy 2004 Advocacy Models: Factsheet, London: Action for Advocacy.
Birmingham, D. 2001 Advocacy: A Rights Issue, Dublin: Forum of People with Disabilities.
Citizens Information Act 2007.
Commission on the Status of People with Disabilities 2006, A Strategy for Equality, Dublin: Stationery Office.
Goodbody Economic Consultants 2004 Developing an advocacy service for people with disabilities, Dublin: Comhairle.