Mr. Brian O'Donnell:

I thank the Chairman and fellow members of the committee. I am very happy to accept the invitation of the committee. I will be brief.

The National Federation of Voluntary Bodies is the national umbrella organisation of non-governmental service providers who provide services to people with intellectual disability and autism. In all, we have 60 member organisations which between them account for 85% of direct service provision to people with intellectual disability and autism in the State.

Statutory responsibility for the provision of services rests with the Health Service Executive, HSE. It discharges that responsibility by engaging with voluntary organisations on a service arrangement basis.

The United Nations Convention on the Rights of Persons with Disabilities provides us with a clear framework to focus on the ways in which Government and society must ensure participation restrictions are identified, addressed and removed, and thereby people with disabilities can be afforded their human right to live inclusive lives in the community as fully active and participating citizens. The convention enshrines the principles of respect for the inherent dignity and individual autonomy of persons with disabilities, respect for difference and acceptance of persons with disabilities as part of human diversity in humanity. The convention recognises the value of existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities.

I will touch briefly on ways in which the principles of the convention are relevant at all stages of the life course of an individual with a disability, but first I want to share with the members a very brief outline of the life story of one person as an embodiment of the potential that the full ratification and implementation of the convention would bring. At the national federation, we work closely with a self-advocate, Martin Dooher. Martin has an intellectual disability, health difficulties and uses a wheelchair. He has given his permission for us to share his story with the members today. When Martin was a child, his parents were told, as was the practice of the day, that the best option for his life and that of his family was for him to live in an institution, and so he was moved from Ballina, County Mayo, to live in a congregated setting in Cork at the age of nine. For a number of years he lived in various institutions, none of which was close to his family, and in his 20s he began living in bungalows on congregated settings lands, followed by group homes in the community, and then an apartment that belonged to the service provider. Finally, at the age of 65, just before Christmas last year, Martin became a tenant in his own apartment, which he secured through mainstream social housing and with the supports he needs in place from the supported independent living programme with the service provider that supports him, namely, the Brothers of Charity services.

For Martin, the universal good things in life - living where he chooses, with security of tenure, maximising his potential for independent living with supports in place as required - have become a reality. He is enabled to make valued contributions in the wider life of the community as an advocate, a neighbour, a pet owner, a friend and an uncle. He can have his family come to stay in his own home. These things happen when the services and supports that are offered are tailored to the individual choice and needs of the person, with the various Departments taking up their appropriate roles. For Martin, his housing is provided by an approved housing body through the local authority, while supports are in place via a voluntary service provider funded by the Health Service Executive, HSE. Fundamentally, the natural supports that come about through being part of a community are growing and developing.

As we move through the life cycle, the range of Departments that have significant responsibility for maintaining the vision of life lived to its full potential in line with the UN convention grows. As children reach school age, for instance,the national federation warmly welcomes the implementation of a new policy for allocation of special needs teaching resources in mainstream school settings, which will come into effect in autumn 2017, as a wonderful example of the potential of Departments to influence positive change. The focus of this policy moves from a deficit-based approach that provided resources based on the diagnosis of a child to a system based on the profiled educational needs of each school. This will address the unfairness that existed in the previous system, whereby many parents were struggling to access assessments to quality for educational resources, which had a particularly negative impact on children from disadvantaged areas.

Similarly, as young people move into the transition from school to post-school options, the comprehensive employment strategy for people with disabilities provides a framework which must be implemented to ensure a range of Departments meet their responsibilities to enhance inclusion and develop the potential of individuals to access work, and that of employers to recognise the value of people with disabilities as employees. The 2011 census provides stark evidence of the extent to which people with disabilities are much less likely to have employment than other people of working age, something that is even more acute for people with intellectual disabilities. The national federation strongly advocates for the implementation of the comprehensive employment strategy through cross-departmental collaboration to ensure current barriers to employment are removed in order that the vision of the strategy, that is, that people with disabilities are supported to maximise their potential and enabled to have jobs, earn a living, and make a contribution, is fully realised in line with the State responsibilities set out in Article 27 of the convention.

Article 19 of the convention unequivocally recognises "the equal right of all persons with disabilities to live in the community, with choices equal to others", and places responsibility on states to take:

[E]ffective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.

Very positive work has taken place under the National Housing Strategy for People with a Disability 2011-2016, which is a joint strategy of the Department of Health and the Department of Housing, Planning, Community and Local Government, to mainstream the assessment and allocation of housing resources to meet the needs of people with disabilities. Under the strategy, pathways for people with disabilities to access mainstream housing options through funding schemes such as the capital assistance scheme, the capital advanced leasing facility and the housing assistance payment, HAP, have been improved, and housing and disability steering groups have been established at local authority level to ensure an ongoing cross-sectoral focus on the meeting of the housing needs of people with disabilities.

However, at this time there are very significant barriers which mean that many people are not enabled to access the opportunity to live in community settings in line with the convention. There has been a lack of provision of funding for residential supports in the community over the past eight years which means that even with the mainstreaming of housing options, the funding for the supports to enable people to take up these options is severely limited. The numbers of people with disabilities requiring support and the increased age of carers is leading to built-up emerging need. In just one of our member organisations, for example, 285 people are living in their childhood home, with family support, in which the primary carer is over 71 years of age, and 98 of whom are over 80 years of age. Additionally, in this one service provider organisation, there are 205 carers in the 61 to 70 age range, and these represent significant emerging need for residential support to come, which needs to be planned for now.

It is fair to say that what is required as a matter of urgency is a commitment by Government to a multi-annual investment programme commencing with budget 2018. We have clear evidence that accessing the human rights set out in the United Nations Convention on the Rights of Persons with Disabilities to live in the community, to be seen as a contributing member of society and to reach one's full potential is transformative in the life of people who have had the opportunity to do so already. We look forward to the day when all citizens with disabilities in this State are given the opportunity to reach their full potential and access their rights as set out in the convention.