Mr. Paddy Connolly:

I thank the Chairman and members of the committee for the opportunity to make an input. As I address the committee, children with a disability are being restrained and secluded in schools, children have been waiting years for essential speech and language therapy and persons with a disability are living in residential settings which in many cases provide little in terms of a good quality of life and are often neglectful, demeaning and sometimes brutal, where physical and sexual assault are most likely significantly under-reported. The number of adverse events recorded by Irish hospitals and health care facilities in 2011 included 10,000 incidents of violence, harassment, aggression or abuse of patients. Over 4,300 of these incidents involved a physical assault on patients, including persons with disabilities.

It is the experience of Inclusion Ireland, based on over five decades of work, that persons with an intellectual disability require advocacy support in a broad range of areas throughout their life cycle. I am particularly conscious that the language of "patient" and "patient safety" is not in most cases appropriate to persons with a disability who need advocacy support to express their will and preference. It is a different argument, although the patient safety argument dominates this sphere. There are issues in education and employment, obtaining or changing other public services, when they are victims of crime because they are invisible in the criminal justice system, in family law where they are represented disproportionately in child care proceedings and when making health care decisions because consent is rarely obtained.

The issue of congregated settings has come to the forefront of popular and political debate. This is, however, an issue that stretches beyond one institution in one location. I was in an institution last Saturday and a family member told me that in the 60 years her son has been in the centre he has never left the complex. Another family member told me that in the 52 years her son has been in the complex they have never been called together as a group of families to discuss their issues. The neglect and abuse in these institutions is not acceptable and many of the community group homes that people are being moved into offer little more in quality of life.

The HIQA has shown this over a long period of time. Recent coverage has shown that only 7% of the centres inspected by the HIQA managed to comply fully with the HIQA process. Inspectors found that there was a high level of restrictive practice and restraint, that centres did not safeguard people's civil and legal rights and there was a lack of adequate safeguards and external scrutiny to ensure residents’ rights were vindicated. This is all covered in the HIQA reports.

I am conscious of the time so I am summarising the document I provided to the committee. The Ombudsman correctly referred to the issue of people suffering in silence. We are told all the time by family members that they are afraid to complain or to raise their heads because they are concerned that if they complain it will affect the service they will get. In many instances, and this has been said to us many times, the services have instructed families that if they make a complaint they can go elsewhere. That is a common theme that arises for families - if they are not happy with a service, they should find a service elsewhere. Of course, there is no other service to be found.

To cut to the chase, the landscape of advocacy services for persons in receipt of health and personal social services is characterised by a lack of co-ordination, consistency or oversight. A range of advocacy services are currently being funded, including Inclusion Ireland, Sage - the Support and Advocacy Service for Older People, Patient Focus, Empowering People in Care or EPIC advocacy for children and young people in care, and others. Despite the investment in advocacy services in the voluntary sector certain things remain the same. There is currently no co-ordinating or oversight body for advocacy, there is no central funding stream as funding is only provided on an ad hocbasis, no public body has responsibility for developing standards or codes of practice and there are no national standards or codes of practice for organisations providing advocacy services.

Obviously, advocacy services operate alongside other public bodies, including the Office of the Ombudsman, the Office of the Ombudsman for Children, the Irish Human Rights and Equality Commission and the Citizens Information Board. Again, there is a lack of co-ordination and connection between these bodies and voluntary advocacy services. An important new development will be the decision support service which is provided for in the Assisted Decision-Making (Capacity) Bill and will operate under the aegis of the Courts Service. The decision support service will have a role in providing information and guidance, the development of codes of practice and powers of investigation in respect of decision-making arrangements under the legislation. There is a need for this body, as it develops, and advocacy in a broader sense to be co-ordinated.

Inclusion Ireland believes there is a need for a broad spectrum of advocacy supports, as was first recommended by the Commission on the Status of People with Disabilities in 1996. Building on the recommendations of the commission’s report, the Goodbody report in 2003 recommended a programme of support for organisations providing advocacy services, an independent advocacy service with statutory powers and a community visitors’ programme for persons in long-term residential care. However, none of these recommendations has been implemented. Funding for community and voluntary organisations providing advocacy services and supports has been cut. The relevant section of the Citizens Information Act that would afford legislative powers to an independent advocacy service has not been commenced, and this is important because this is an action that could be taken immediately. The community visitors’ programme for persons in long-term residential care has not been introduced.

I will not repeat what has been said, but there is a lack of co-ordination. The National Advocacy Service is grossly under-resourced. There are 35 advocates nationwide while there are 3,500 people in congregated settings and a further 4,000 in community group homes. Even getting to that group of people is absolutely impossible for the NAS.

Finally, Ms Ita Mangan, chairperson of the Citizens Information Board, in her presentation to the social protection committee in June 2015, called for "a co-ordinated approach to advocacy services across a number of areas but particularly in the context of the implementation of the assisted decision-making legislation...".

Inclusion Ireland suggests an immediate action which could be taken is the introduction of a personal advocacy service, as provided for in the Citizens Information Act 2007. Inclusion Ireland is proposing the establishment of a national advocacy authority. This new body would have responsibility for co-ordinating and overseeing the provision of all advocacy services for persons in receipt of public services. It would work alongside existing bodies such as the Office of the Ombudsman, the Office of the Ombudsman for Children and the Irish Human Rights and Equality Commission. Inclusion Ireland recommends that such an authority be responsible for setting standards and developing codes of practice and that one of its first tasks be to develop a national strategy for advocacy. We also recommend the introduction of a national signposting service, as mentioned, to guide people on how to make complaints and access advocacy services.