In Ireland the intersection of rights for people with disabilities and older people occurs within national equality legislation and in the Disability Act 2005. The Equal Status Acts 2000 to 2004 and the Employment Equality Acts 1998 and 2004 give protection against discrimination on the basis of age and of disability. The Equality Authority works on behalf of both groups in promoting equality, and has produced key policy documents for each, including Implementing Equality for Older People, as well as guidance on implementing equality such as Towards Age Friendly Provision of Goods & Services and Reasonable Accommodation of People with Disabilities in the Provision of Goods and Services. This suggests that building on existing joint working between the NDA, the NCAOP, the Equality Authority and the Human Rights Commission may prove productive for progressing the common equality and human rights agendas of these two groups.
The other main piece of legislation affecting older people with disabilities is the Disability Act 2005. The Disability Act is part of the Agreed Programme for Government and a commitment in " Sustaining Progress". It is a key part of the National Disability Strategy being put in place by Government to underpin the equal participation of people with disabilities in society. The provisions of this legislation are intended to build upon the existing equality legislative framework and are available in addition to equality and human rights legislation.
The Act enables provision to be made for the assessment of health and educational needs for people with a disability. In the Act, disability is defined as follows: "disability, in relation to a person, means a substantial restriction in the capacity of the person to carry on a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment." The inclusion of participation in social and cultural life as well as the economy means that those with retired status are not precluded from the definition and therefore may come within the scope of the legislation. Part 2 of the Act provides for an independent assessment of need, an individual service statement, and redress. With regard to the provision of this Part, the Minister for Health and Children may fix different dates for implementation for different age categories. This means that the commencement dates for Part 2 with regard to older people may be earlier or later.
Section 3 imposes a duty on public bodies to make public buildings accessible, as far as practicable, by 31st December 2015. This will be of benefit to people of all ages with impairments, including those who have not reached the threshold to come under the definition.
Another element of the Government's National Disability Strategy is the Comhairle (amendment) Bill. The Comhairle (amendment) Bill puts in place personal advocacy services, specifically for people with disabilities who have difficulty obtaining, without assistance or support, a social service. This has the potential to improve access to services for older people.
It can be seen that a range of rights legislation is available in common for both older people and people with disabilities which can improve their participation in Irish society. Implementation of such rights depends partly on effective awareness-raising, a process which can be supported by organisations such as the NDA, the NCAOP, the Equality Authority and the Human Rights Commission.
Historically, services in Ireland have been organised around distinct client populations of older people, people with physical/sensory disabilities, people with intellectual disabilities and people with mental health difficulties. This category division persists in the new structure of the Health Service Executive, which assigns responsibility for these groups to three different "Care Group Managers". The divisions are underpinned by separate budgets for each group. Separate funding militates against boundary-crossing of both professionals and clients, and creates a variety of difficult situations for older people with disabilities. For example, currently people with intellectual disabilities under 65 who develop dementia have no clear provision within the services. While the Psychiatry of Old Age professionals have expertise in dementia, they have no responsibility for services to this group (Wrigley & Loane 2004, p.36). On the other hand, people who have had long-term contact with the disability services may continue to receive services within the disability sector after the age of 65. The extent to which their needs as older persons are being met within these settings is unclear.
The division between categorised client groups is also evidenced in the current disability sector co-ordinating committees. These advisory committees are chaired by the Director of Disability Services, with representation from Heads of Discipline of disability service provision, voluntary sector disability service providers and people with disabilities. In general there is no representation from older services. This despite the fact that, as stated at the start of this paper, older people represent 42% of the population with disabilities.
Services for older people in Ireland have historically been oriented around acute services, with very little provision for care in the community. O'Neill and O'Keefe (2003, p.1282) report that health and social services for older people were relatively poorly co-ordinated; the number of specialists was low by international standards, and older people were increasingly reliant on fully-subsidized beds in acute hospitals. Relative to other countries, community care services have been underdeveloped. For example, in 1993, only 3.5% of the Irish population used home help, compared to 14% in Northern Ireland and 19% in Sweden. As of their publication, there was also virtually no access to speech therapy, clinical nutrition or social work (Ibid., p.1284). Funding and staffing levels for older people's services has increased in recent years, and innovative programmes have been initiated such as the ERHA's HomeFirst programme and Slan Abhaile project, both of which aim to support older people to remain in their homes. However, evidence is not available as to the extent of unmet need for community care services.
In the mental health services, older people with pre-age 65 mental health difficulties are routinely discriminated against. The Inspector of Mental Health Services states that it is "common practice in most mental health services for the elderly to exclude people who have attended the general adult mental health services in a given period prior to referral" (MHC 2005, p.118). She has expressed concern that these exclusions are depriving significant numbers of elderly patients from appropriate care. She also cites numerous examples of poor quality care for long-stay patients in mental health wards, including the absence of care plans, activities, or any evidence of therapeutic direction for patients in certain locations (Ibid., pp.144, 154). In addition, elderly long-stay residents of psychiatric wards are being discharged to private nursing home beds and other settings that are unapproved for mental health care (Ibid., p.118).
The picture which emerges in Ireland is one where the organisation of services on the basis of client groups, e.g. older people, disabled people and people with mental health difficulties, creates barriers to receiving appropriate, person-centred care and support. The Government's Health Strategy, Quality and Fairness - A Health System for You, makes a commitment to a 'holistic approach' to the planning and delivery of care, and to a co-ordinated action plan to meet the needs of ageing and older people. A key issue, then, for future policy must be the development of mechanisms, protocols and funding which allow for cross-cutting, co-ordinated and integrated care for individuals on the basis of a holistic assessment of needs, not on the basis of membership of a client group.
Entitlement to many of the services which are relevant to older people and people with disabilities is discretionary. The provisions of the Disability Act 2005 apply to all people with a disability, but its provisions relating to needs assessment can be brought into force at different times for people of different ages. Everyone over the age of 70 is entitled to a medical card; this universal entitlement does not exist for people with disabilities aged between 65 and 70. Comhairle 2004 highlights problems with the current entitlements. For example, a couple aged 65-70 whose only income is an Invalidity Pension has an income above the current income guidelines. There is considerable confusion and lack of clarity about who is entitled to free or subsidised long-stay care (Mangan 2003). This situation has yet to be clarified by the Department of Health. Receipt of community care services such as community nursing and home helps is discretionary. The provision of aids and appliances such as walking aids and wheelchairs is also not clear-cut. The Mobility Allowance is not payable to anyone whose mobility problems start after the age of 66.
A significant issue arises regarding the difference in access for people with early and mid-onset impairments versus people who acquire impairments after age 65. Given the low rate of participation in employment of people with disabilities of working age, it is less likely that people with disabilities will have access to private health insurance to fund their care needs. In practice, this means that most people with early-onset disabilities are entirely dependent on the state health services, whereas people with disabilities arising in old age may be able to avail of private medicine. In addition, people with disabilities are less likely to have paid PRSI and are therefore less likely to qualify for contributory payments. The lack of employment status of people working in sheltered workshops and their equivalent means that they never qualify for the usual benefits available to workers. Finally, in general women, who make up the majority of the 'oldest old' people with disabilities, have less work-based entitlements and pension arrangements than do men, given less continuous participation in work. Again, this suggests that women with disabilities will be more dependent upon statutory services than men.
There are separate income maintenance payments for older people and people with disabilities. Two of the main weekly payments for people with disabilities - Disability Allowance and Disability Benefit - cease to be payable at age 66. Invalidity Pension and Blind Person's Pension are payable after age 66 but from that age they are indistinguishable from Old Age (Contributory) Pension and Old Age (Non-Contributory) Pension respectively. The Household Benefits Package is available to all older people and to recipients of Disability Allowance and Invalidity Pension regardless of age. Social welfare payments to those over 66 are generally higher than those payable to persons under 66. People aged over 80 get an extra payment. The automatic entitlement of all over 70s to a medical card can also be seen as a recognition of the extra costs of ageing. The extra amounts payable to people aged 66 and over are not specifically related to the extra costs of ageing and there does not seem to have been any objective assessment of what those extra costs are or if the extra amounts bear any relationship to those extra costs.
The 1996 Commission on the Status of People with Disabilities identified access to the built environment as a key factor in enabling full participation of people with disabilities, and devoted an entire section of its report to this issue. It recommended instituting a policy of Lifetime Adaptable Housing. This recommendation has yet to be adopted. An NDA survey published in 2004 on social participation found that over 30% of homes in Ireland are not accessible (NDA 2004b).
As part of the assessment of housing need, older people and people with disabilities are listed as separate categories (Fahey and Watson 1995). Fahey and Watson suggest that physical illness or disability is the factor most likely to lead to special housing needs of local authority applicants for all household types. In its 1999 submission to the NESF on housing, the NCAOP reported a 10 percent increase in the number of households headed by an older person identified as in need of Local Authority housing between 1996 and 1999 (NESF 2000, p.88).
It also expressed the following main concerns:
The latter two issues, in particular, are common for people with disabilities of all ages.
In addition to Lifetime Adaptable Housing, older people with disabilities also need an accessible environment in order to enable their continued inclusion within their local community. In Ireland, the Building Control Act 1990 provides the legislative framework for the development of the built environment. The Part M regulations require that access to all new non-residential buildings should be 'adequately' provided. With reference to housing, Part M requires that all new dwellings be 'visitable' by people with disabilities. Responsibility for ensuring compliance with Part M rests with owners, designers and developers of buildings. The NDA is currently carrying out research into the effectiveness of the Part M regulations. Preliminary findings from the research suggest that the monitoring for compliance with Part M is poorly co-ordinated, haphazard and piecemeal. The findings also suggest that Part M has not improved access to the built environment for many people with disabilities. (NDA 2005c) The Irish Government has announced plans to amend building control legislation in order to strengthen enforcement. The proposed legislation includes introduction of a Disability Access Certificate for all new buildings and a simplified means of redress. In addition, the Disability Act 2005 includes further requirements for compliance with Part M by public bodies. Section 25 of the Act requires specified public bodies to ensure that their public buildings are, as far as practicable, accessible to persons with disabilities by 31st December 2015.
Other initiatives which are having a positive effect on the built environment include the implementation of the Barcelona Declaration (1995) and the Public Service Accessibility Initiative (PSAI). In 2001 the Irish Government established a project to implement the Barcelona Declaration amongst local authorities. The NDA was assigned responsibility for facilitating this process. The majority of local authorities have now endorsed the Declaration, and thereby made a commitment to 'adopting measures towards the necessary adaptation of urban spaces, buildings and services of all types, in order to allow full use by disabled persons'. Under the PSAI, an Excellence Through Accessibility award has been developed which is based on the highest standards of accessibility, and which will recognise improvements in public service accessibility. The Excellence Through Accessibility award was launched in 2005. Finally, Section 52 of the Disability Act 2005 provides for the establishment of a 'Centre for Excellence in Universal Design' within the NDA. The Centre will contribute to the development and promulgation of standards of excellence in universal design.
Traditionally, most care for people with disabilities and older people has been carried out by women from the home. In terms of long-term care, Ireland has the second lowest expenditure on long-term care amongst 19 OECD countries (OECD 2005). This suggests that the system remains heavily reliant on informal care. The population of the "oldest old", people aged eighty years and over, is projected to increase three-fold in the next thirty years, to over 300,000 (NCAOP 2005b, p.10). The 2002 census shows that 34% of people over age 75 are living alone in private households. It is likely that a significant number in this group receive substantial informal care. Given current trends towards women working, and the likely increase in the population of the oldest old and of older people with long-standing disabilities, demands for formal care will increase substantially over the coming years. On the other hand, the structure of formal care is likely to change, as recipients of care push for more user-controlled, home-based supports to enable them to live independently in the community. The response to demographic and labour force changes, then, in responding to increased demand, should re-orient itself towards community-based, user-controlled support, rather than replicating existing structures of care. A re-structured care system also requires a partnership approach between older people with disabilities, families, statutory agencies, the voluntary sector, the private sector and local communities (NCAOP (2005c), p.7). Current developments regarding standards in long-term care are to be welcomed. The Social Services Inspectorate is working on the development of an inspection system for public and private residential care for older people, and the Irish Health Services Accreditation Authority is working on the development of accreditation standards for residential care.
The NCAOP has made specific recommendations on the financing of long-term care (NCAOP 2005c). The Council emphasises the need to provide a continuum of care, of which long-stay care is a part. Long-term care is generally defined as assistance with instrumental activities of daily living and activities of daily living, whether provided in a residential or domestic setting (p.5-6), whereas long-stay care refers specifically to residential care. The NCAOP's submission divides care needs into self-care, community-based care, care and case management and long-stay care. In evaluating care needs, it is important to consider both health and social care dimensions of care (p.4-5). They define essential care needs as: personal assistance, home help services, meals on wheels, day care and respite care, allied medical services, and intermediate housing including sheltered housing (p.7). In light of the evidence outlined above regarding the high incidence of mental health needs amongst the older population, the NDA also believes it will be vital to provide community-based mental health services and supports as an essential service. The NCAOP supports the financing of long-term care through a modified social insurance scheme (p.8). The NDA points out that such a scheme should not be confined to PRSI-eligible people, which could potentially exclude people with lifelong disabilities who had not worked, and women whose years spent working in the home left them without sufficient PRSI cover in their own right (NDA (2005b)).
The NCAOP's submission quotes important OECD findings about the overall costs of long-term care. Long-term care costs are very sensitive to disability trends; postponed onset of disability reduces costs (NCAOP (2005c), p.13). Incorporating a social model of disability into this analysis means that by improving the built environment, enabling accessibility through assistive technology and providing adequate personal assistance, the costs of long-term care can be reduced.
One process that can assist with preparing for ageing is what is sometimes referred to as 'permanent planning'. Preparing person-centred care transition plans helps to minimise the negative consequences of transitions in support arrangements. This issue arises in particular for those people with intellectual disabilities who live the majority of their lives at home with support from their parents. Reilly & Conliffe's work on future planning for ageing adults with intellectual disabilities argues for incorporating quality of life issues when planning around residential transitions. Their research also highlighted, amongst the carers surveyed, a lack of awareness of the need for future planning. About half of the respondents indicated that registration on the Intellectual Disability Database was "tantamount to a concrete future plan" (Reilly & Conliffe 2002, p.113). Such evidence indicates a lack of both recognition and adequate planning for the growing population of older people with intellectual disabilities.
An area where there are common issues for both people with disabilities and older people is that of capacity for decision-making. The Law Reform Commission has recently published its consultation document on vulnerable adults and capacity. The document aims to review the issue of legal capacity for vulnerable individuals over 18 in a range of decision-making areas, including the areas of capacity to enter into a contract, capacity to enter into relationships and capacity for healthcare decision-making (LRC 2005). The NDA and the NCAOP look forward to informing the development of new legislation on capacity and its associated provision and practice. While there are commonalities in the appropriate legislative framework for both groups, the differences in the situations of people with incapacity or limited capacity in early and mid-life versus those in later life will also need to be addressed. For example, the disability movement has emphasised the need for independent advocacy in interactions between people with disabilities and statutory bodies. This suggests that people with disabilities may be less inclined to favour familial guardianship for assisted decision-making.