Ms Anne Winslow:

I thank the Chairman, Deputies and Senators for facilitating us and giving us an opportunity to present to them in the context of the UN Convention on the Rights of Persons with Disabilities and especially its relevance to health and well-being. We are honoured to be here with CIL and the other organisations that have presented to the committee before us on this topic. I am accompanied by my colleague, Ms Joan O'Connor, the Disability Federation of Ireland, DFI, development manager in policy and research. I work part-time as a senior policy adviser to the DFI. I will give the committee a little background on the DFI and I will outline both the need for a whole-of-government approach to addressing the needs of people who have disabilities and the link to health. I will also outline the need for increased resources and a multi-annual investment programme.

The Disability Federation of Ireland, DFI, is an umbrella body of 130 organisations. Through our work with individuals and organisations, the DFI works to shape and promote an equal society which is fully inclusive of people with disabilities. We listen to and are in touch with the current needs of people with disabilities.

On the issue of health and the United Nations Convention on the Rights of Persons with Disabilities, CRPD, as Mr. Lee has said, the road to ratification of the convention has been a long one, more than ten years so far. The most recent hurdle to achieving this goal has been our work on the Disability (Miscellaneous Provisions) Bill 2016, but that still requires more improvements and more work. Ireland is the only EU member state that has not ratified the CRPD.

Disability tends to be narrowly perceived as a health issue, a view which has been reinforced by the medical model of disability. We see this routinely through our interaction with public services and across Departments. Disability tends to be boxed in with health issues. Even within the HSE itself there are divisions in various health sections between mental health, disability, acute care, primary care, and health and well-being. This does not necessarily lead to a well co-ordinated approach, nationally or locally. In the UN convention, disability covers the whole person. The DFI advocates for a whole-person approach.

Health is determined by a broad range of factors, most of which are outside the health sector. Social well-being and economic and environmental factors are the main determinants of health. We all understand health to encompass basic health services and also disability specific services such as living independently and being included in the community. It is, however, not just health and disability-specific services that will achieve quality of life for people with disabilities and their families. There needs to be interconnectedness between the Department of Health and other Departments to achieve an adequate standard of living. We need to provide social protection, including poverty reduction, and this comes under the Department of Social Protection. Provision of accessible housing stock comes under the Department of Housing, Planning, Community and Local Government. Being able to provide access to inclusive, quality education comes under the Department of Education and Skills. Access to work in an environment that is open, inclusive and accessible comes under the Department of Jobs, Enterprise and Innovation. Transport has also been mentioned in the context of people with disabilities being able to avail of national transport services, which is the responsibility of the Department of Transport, Tourism and Sport. Those factors support an individual to live with health and well-being in their community but are outside the direct responsibility of the health sector. Despite this, the burden on the health sector has increased and is being placed on the Department of Health and on the HSE. This will continue to increase if these factors are not adequately addressed. The demand will grow for health and disability services and therefore increase the costs for the Department of Health. In the absence of a whole-of-government approach to addressing these needs, the outcomes will continue to be modest. If there is more pressure on health services, people cannot get jobs or transport.

We recognise that as our services are structured in this State it is the responsibility of the Department of Health to remind other Departments of their responsibilities to deliver adequate services for people with disabilities. In effect, the Department of Health is holding the problem. Why is this so important? I believe a cross-departmental approach is required to see some changes in the health and well-being of people with disabilities and for the health sector to begin to see a level of return on its investment, because we know the investment in disability services is large.

A way of doing this is through the Government's national disability inclusion strategy implementation plan. This has been overdue since January 2016 and it has still not been cleared by Cabinet. It requires that all the Cabinet, including the Taoiseach and the Ministers of various Departments, understand disability as a cross-cutting issue that needs the proofing of decisions across Departments. The co-ordination as envisaged between Departments under the national disability strategy did not occur. We still have numerous examples of disjointed ways of working. Younger people with disabilities are being inappropriately placed in nursing homes due to a lack of a co-ordinated response from the Departments responsible for housing and health. It is ironic we have the decongregation programme to move people out of institutions while we have young people who have always lived in the community being moved into nursing homes, and this was referred to by Mr. Lee. There is disjuncture between mainstream employment policies, which are the responsibility of the Department of Social Protection and the Department of Jobs, Enterprise and Innovation, and the comprehensive employment strategy for people with disabilities, which is the responsibility of Department of Justice and Equality. This results in people with disabilities being excluded from mainstream activation measures and moves away from that seamless and co-ordinated approach we want.

The public sector duty is a legal obligation on all public bodies to promote equality and protect the human rights of all who are affected by their policies and plans. Today we ask the committee in its capacity to seek to implement a whole-of-government approach with specific actions. This would lead to more effective outcomes for people with disabilities and a more efficient use of resources, especially in health. It would make Ministers and officials in each Department accountable.

I also wish to highlight outcomes for people with disabilities in budget 2018. People with disabilities are having difficulty getting timely and effective interventions at the earliest opportunity.

The budget allocated to disability services for 2017 was €1.68 billion but we are still asking whether the outcomes were good. The situation is worsening for people with disabilities in this country. As Mr. Lee stated, poverty for people with disabilities is increasing while the situation is improving somewhat for the population in general. The disposable income of people with disabilities fell by 7.4%, a drop of €1,047 per year, between 2010 and 2015. This means people's income is down by €20 a week. This is a massive hit at a time they and their families are under pressure, and it needs to be restored. People can manage under pressure and cuts only for so long. People with disabilities and their families have been doubly hammered, by the cuts in their pocket and by health cuts. Up to 1,100 young people with disabilities are living inappropriately in nursing homes due to a lack of appropriate housing and community supports. The list goes on.

The Department of Health and the HSE need to move from a crisis mode approach to providing services for people with disabilities to an advance planning approach that can plan for addressing the true needs. The Disability Federation of Ireland has much evidence to support planning, for example, the number of people diagnosed with particular disabilities or conditions each year, data on the number of people with disabilities in each county and the impact of this on them. We are a long way from having enough quality services for people with disabilities to live and take part in their communities like everyone else.

We need action on the UN convention and the Government's national disability inclusion strategy. Implementation matters and budget 2018 matters. We need a cross-departmental multi-annual investment programme for the delivery of community services and supports, as well as Departments working together to improve inclusion and value for money from the health spend.