Dr. Michael Browne:

I thank the Chairman. By way of introduction, I would like to briefly state my position on this hugely important matter. I have been around for some time and have been involved in research, policy analysis and reflection in this area for over 30 years, first as a research officer with the National Council on Ageing and Older People during the 1980s and 1990s and more recently with the Forum on Long-Term Care for Older People. I was involved in preparing some background papers for the seminal 1988 report, The Years Ahead, and I believe the analysis and agenda for action set out in that report remain current and very relevant to the work of this committee. In some respects, what I am saying is that we do not need to reinvent the wheel.

I do not intend to go over ground members already know and are only too familiar with from their deliberations and from their own personal experiences in dealing with constituents in various parts of the country. Rather, I want to focus on what are the key areas that require concerted attention and action. My colleagues, Professor Cillian Twomey and Ms Patricia Rickard-Clarke, on foot of their respective professional backgrounds of medicine and law, will be able to provide detailed insight into specific aspects of the challenges facing the health and social care services as they apply to older persons.

I want to make the obvious point at the outset that the term "long-term care", as used in the forum, refers to the whole spectrum of support and care, not just nursing home care. Indeed, we need to be mindful of the fact that most long-term care and support is provided in the community. We are talking here about a relatively small cohort of the older population, but a cohort to which any of us may belong at some future date. That should clearly be an impetus, if one were needed, for a whole-of-society approach to this issue.

There are some important pointers to where we are now and where we, as a society, need to be in terms of providing the type of health and social care infrastructure to which we all aspire for our older population. First, there is a major discrepancy in the Irish health care system between the way care for people with acute illnesses and that for those with slow, debilitating illnesses such as dementia are funded. A core question to be addressed by society and the Government is whether this is right or equitable. Second, while there is broad acknowledgement of the principle of enabling people to exercise their will and preferences in the way care is provided, the reality is that some people who need to be in nursing homes end up there not by choice but because of a lack of appropriate community-based alternatives. I venture to suggest that most of us will know people in that category. Third, the provisions of the Assisted Decision-Making (Capacity) Act 2015 are crucial in enabling people with reduced decision-making capacity to exercise their will and preferences. The full implementation of this legislation is of critical importance, as is the enactment of legislation relating to the deprivation of liberty. Fourth, there are some very obvious instances where, without good reason, both the level of services available and the way these services are delivered fall short of what is required. For example, there is still much to be done to ensure that the design and location of nursing homes cater for key quality-of-life considerations such as links to the community, maximising individual capacity and catering for individual preferences.

Also, people's inability to access the therapies they require at a level commensurate with need impacts greatly on their quality of life, general well-being and, indeed, on their need to have to avail of expensive acute hospital services.

All the research evidence and reflected practice suggests that multi-purpose community-based units providing a continuum of support and care, such as day facilities, sheltered accommodation and nursing units, can contribute enormously to enabling people to live independently or semi-independently. These should be made an integral part of the community care infrastructure. Such models could be developed initially in locations where existing public long-term residential care facilities have been deemed to be no longer fit for purpose. Some members may be aware of facilities with such potential in their constituencies. Space might be found in such facilities for a coffee shop, a newsagent, a clothes boutique and perhaps a betting shop but other people in the community could use these facilities too.

The potential of appropriately designed housing in the provision of support and care has not been developed to date in Ireland. There are appropriate models of housing with care that have been developed in other jurisdictions and there are some in Ireland that can and should be replicated nationwide. Housing and health and social care can no longer remain parallel lines and must converge. For this to happen we need to focus as much of our energy on local government as on national government and on housing policy as much as on health and social care policy. There is a need for local authorities to take on much more responsibility for the provision of sheltered and supported housing.

More attention is required to ensure that best gerontological practice is always applied in meeting the specific nursing, medical and personal care requirements of people with complex care needs in both nursing homes and in the community. There is a dearth of appropriately designed and staffed dementia-specific accommodation, including assisted living housing and full residential care. This gap in provision needs to be addressed as matter of some urgency. It is reasonable to suggest that people with dementia are among the most socially excluded groups in society.

The question of the respective responsibilities of the State, families and individuals in providing long-term care and support is one that has not been adequately addressed in Ireland to date. I expect that Mr. John Dunne will have something to say later on this topic.

The nursing home support scheme, the so-called fair deal scheme, is a large area of health expenditure but there is little focus on outcomes, quality of life domains or on catering for the will and preference of people who require nursing home care. The current model of fee negotiation between the National Treatment Purchase Fund and nursing homes is unsatisfactory, not least because it only provides for bed and board and takes no account of different individual care, support and quality of life needs.

The forum deliberations reiterated the point that much more can be done at local community level to prevent or delay the onset of conditions that require more extensive and expensive care and support, including, in particular, accessible transport and initiatives to combat social isolation and loneliness. It is likely that a community-based social enterprise model of support and care delivery supported by the State has significant potential to target interventions at the lowest appropriate level.

Ireland can learn much from practice in other jurisdictions with particular reference to following: legal frameworks relating to people's rights in respect of long-term care and support; models of financing; the individualised payments approach that targeting resources around individuals; the optimal balance to be achieved between community-based care and residential care; the devolved responsibilities of local government or municipalities in providing long-term support and care, including housing; the integration of mainstream and specialised housing provision; and the use of assistive technology. We can learn much under all of the headings I have just mentioned.

I will suggest five key questions that the committee needs to address. What is the optimal level of support and care we wish to provide for older people with dementia and other chronic conditions? What is the likely cost of this care? How do we wish to fund it in the short, medium and long term? How do we achieve an appropriate balance between funding provision for acute hospital care and funding for long-term care? How can we achieve social and political consensus on these matters?

The areas that need new legislation are as follows: the financing of long-term care; providing a legal framework to provide equal access to community care and nursing home care; and the regulation of home care provision. There are many areas where additional legislation is not required but rather a more targeted allocation of resources based on social consensus.

There is a broad consensus on the direction that our approach to supporting older people who need care should take. This includes the need to cater for people in the community at the lowest appropriate level of complexity and the need to provide high quality residential care when and if this is needed. This requires a greater mix of accommodation choices that is currently available and the application of best gerontological practice in all situations where older people require care and support.

We know what needs to be done as it has been articulated for the past 30 years at least. Doing it demands new thinking and innovative approaches based on an ethic of solidarity that requires society to provide a long-term health and social care infrastructure that respects the inherent dignity and personhood of all irrespective of age. As an absolute starting point we need to change the systemic bias in Ireland towards nursing homes. This requires an enhanced budget for support and care in the community and legislation to enable provision and regulation for same.