Ms Sarah Lennon:

I echo the thanks from Inclusion Ireland for the invitation to speak here today. As Ms O'Shea has already said, it is really important that the committee is addressing not only of the issue health, but also the issue of well-being. If we take well-being as a byword for happiness, we can understand why people with disabilities wish to move away from the idea of a medical or charitable model to a model that is embedded in human rights and equality. The convention offers us an opportunity to do that in Ireland. While it does not create any new rights, as is routinely said, it was designed as a response to the unique barriers that our society throws up for persons with disabilities in accessing their rights. We will look at only three of its 50 articles today. Any one of them might have been relevant, but we will keep it to three in the interests of brevity.

Article 25 relating to health requires that state parties provide persons with disabilities the same range, quality and standard of free or affordable health care and programmes as other persons. Through research we know that people with disabilities have a lower uptake of health promotion and screening services such as cervical and breast cancer screening. Disabled women may find health screening information inaccessible or may not have the support they need to make appointments. Information on these services should be provided in a range of accessible formats for all persons with disabilities. Issues relating to health inequality become even more important as people get older. The Irish longitudinal study on ageing, TILDA, reported that people with disabilities were much more likely to experience social exclusion and loneliness and three times more likely than the general population to experience depression as they age. Additionally, older adults with disabilities were more likely to experience vision and mobility challenges, chronic constipation, higher prevalence rate for falls, higher incidence of mental health and emotional health issues and a much higher incidence of poly-pharmacy, that is, using five or more medications. People living in congregational settings, institutions and community group homes were more likely to feel socially excluded. Inclusion Ireland believes that health and social care services should plan for the appropriate supports needed in the future. They should use the data available to put those plans in place for people as they age. These supports should be person-centred to protect against social exclusion and loneliness particularly for those in or leaving institutional settings

Article 12, which is focused on equal status, is often described as the beating heart of the convention. It is concerned with equal recognition before the law, which is central to accessing all sorts of services, including health services and is critical for well-being. Equal status in Ireland has been taken to mean supported decision making and having a choice on how to spend money, where to live and living in the community. Instead, in Ireland we retain the Lunacy Regulation (Ireland) Act 1871 on our Statute Book. Under that Act, people can be made lunatics and idiots by law. Until the commencement of the Assisted Decision-Making (Capacity) Act 2015 in full and with it a supported approach to decision making, we retain that status-based approach. The Assisted Decision-Making (Capacity) Act introduces modern infrastructure for supporting people to make decisions or in some limited circumstances to have decisions made for them but in accordance with their will and preference. Budget 2018 must include appropriate resources for the decision support service, DSS, within the Mental Health Commission. It has taken almost two years since the enactment of the Assisted Decision-Making (Capacity) Act for the recruitment of a director of the DSS to begin. Once appointed he or she must be given the resources to carry out his or her important functions, including developing codes of practice. Self-advocates and experts through experience must be consulted in developing those codes of practice. Budget 2018 must also provide funding for the education of individuals, their families and members of the public.

Article 19 on community living requires state parties to recognise the equal right of all persons with disabilities to live in the community. A recent comment by the CRPD committee said institutions create isolation, lack of control, lack of choice, rigidity and a paternalistic approach. As we sit here today, 2,580 persons remain in residential institutions in Ireland in spite of their planned closure by 2018, as set out in the report, Time to Move On from Congregated Settings. The programme for Government targets a move of one third of residents by 2021, a figure most likely to be reached by the deaths of residents. Ireland must accelerate the process of de-congregation and de-institutionalisation while ensuring that persons with disabilities receive individualised supports in the community.

The UN convention reaffirms the right of people with disabilities to health and social supports in the community, rather than segregation. Ireland must commit to and resource a personalised budget system. We are currently undergoing a task force process. It is essential that we come out of that with a tangible system for people to have personalised services. In the United Kingdom direct payments have improved independence, well-being and quality of life.

The CRPD committee has said that state parties should ensure the personalisation of support, including personal budgets.

I thank the committee again for the opportunity to raise these issues relating to both health and well-being. They are only the tip of the iceberg in terms of the Convention on the Rights of Persons with Disabilities, CRPD, and its potential impact. The convention has the potential to change radically how we think about the rights of persons with disabilities and how, as a society, we interact with each other. It is to our shame that Ireland is the last EU country to ratify. We are among the last 15 in the world to do so. We know from the experience in other countries that ratification has accelerated reforms. The progress has been slow in Ireland. We urge the State to ratify as soon as possible.