Role of the Church

First, the Roman Catholic Church has been hugely influential in Irish politics. The Irish state, from the outset (1922), was influenced and reliant on the Catholic Church for both political support and for welfare and education provision. The Church was able to capitalise upon aspirations for Irish nationhood due to the high rates of Catholic followers. According to McLaughlin (Reference McLaughlin, Cochrane and Clarke1993), the Church provided the institutional links between the new political, economic and social elites and the masses.

The religious-based organisations tended to emphasise charitable principles and the duty of the rich to help the needy. A 1931 Papal Encyclical ‘Quadragesimo Anno’ espoused the principle of ‘subsidiarity’ as a means of circumscribing state encroachment on voluntary welfare and charity arrangements (O'Leary, Reference O'Leary2000). This held that responsibility for social issues lay with the basic societal units, such as the family and the parish, and only when these were seen to fail could the state step in as a last resort. The Encyclical stated that: ‘It is an injustice and at the same time a great evil and disturbance of right order to assign to a greater and higher association what lesser and subordinate organisations can do’ (quoted in McLaughlin, Reference McLaughlin, Cochrane and Clarke1993: 206). The state was viewed by the Church as having a functional role of ensuring social order; it should refrain from intervening in social affairs. As a consequence, state activity in the field of social welfare was relatively tardy in comparison with England (Donoghue et al., Reference Donoghue, Anheier and Salamon1999).

The implications of this in the LD sector have been a greater historical legacy of charitable giving and local altruism as a means of addressing welfare needs of local communities in Ireland than elsewhere. This concept of charity has remained a strong theme and was a major factor in the particular development of Irish local voluntarism. Indeed, this ‘doing good’ aspect coloured secular involvement, particularly in the social welfare field. As a consequence, Ireland saw a growth of grass-roots organisations, alongside the religious institutions, in LD support, whose motivation lay in a growing dissatisfaction with the effectiveness of state responses to supporting people with disabilities across the country (McLaughlin, Reference McLaughlin, Cochrane and Clarke1993). People with LD had to therefore depend on being supported by religious asylums or local parents groups:

This resulted in an organic, small-scale and predominantly local voluntary sector growth across the country. All political parties broadly supported this type of voluntarism and, unlike in the UK, there was little public debate about an alternative approach. Families who chose to look after their child with LD at home had to rely on parents' groups and underfunded charities for support. Family services were regarded as outside the remit of government as the traditional male breadwinner role and female carer role were enshrined in the Constitution (McLaughlin, Reference McLaughlin, Cochrane and Clarke1993).

Era of de-institutionalisation

Shortly after this, there was an ideological shift from institutional to de-institutional care and a growth of grass-roots organisations dissatisfied with the status quo. The state's favouring of the provision of community-based services through religious orders and local voluntary bodies continued in response to de-institutionalisation of people with LD. The first sign of change was the Health Act (1953) which introduced Section 65 grants for any Church or voluntary body in the community providing services ‘similar or ancillary’ to their own. This marked the beginning of a new relationship between statutory and local LDV groups. In practice, however, statutory services could be more accurately described as complementary, with voluntary organisations providing, in many cases, essential services (Donoghue, Reference Donoghue2002).

De-institutionalisation increasingly began to appear in government rhetoric in the 1960s, with greater pressure to move away from care in large institutional environments, due to increased concerns for civil rights. However, the government, aware of the extent of voluntary services across Ireland, published the White Paper ‘The Problem of the Mentally Handicapped’ (Department of Health, 1960), which favoured an extension of the activities of the voluntary organisations into the community. The later report of the commission of Inquiry on Mental Handicap (Government of Ireland, 1965) mirrored the White Paper by favouring the provision of community-based services through religious orders and voluntary bodies (Quin and Redmond, Reference Quin, Redmond, Quin, Kennedy, O'Donnell and Gabriel1996). This policy decision had a considerable impact on Irish service provision for people with LD. Local groups around the country (for example, KARE) were getting more organised, providing local services, such as schooling, adult occupation training and respite services. The government therefore recognised that these grass-roots organisations were the leading agents in advancing best practice.

In the 1970s, the state introduced legislation that saw a shift in providers away from the Church and towards this burgeoning local ‘lay’ voluntary sector. The Health Act (1970), which has been deemed the principal Act governing health care in Ireland, firstly continued to provide funding to voluntary activity and, secondly, made sure that the state's new social services and home help did not interrupt voluntary activity, especially in the area of disability services, preferring to focus on the presence of drug abuse and child protection services (Walsh, Reference Walsh1999). In the first case, section 26 of the Act meant continued support for voluntary activity in similarly loose terms. However, most voluntary groups have since continued to apply for Section 65 grants from the earlier legislation. In the second case, access to the home help service has been at the discretion of HSEAs, with many preferring to use the voluntary sector:

The development of home help has been constrained by the absence of an adequate legal basis, appropriate funding or agreed national quality standards (Haslett et al., Reference Haslett, Ruddle and Hennessy1998), which was typified during the study when all carers' home help hours within one health board region had been halved. This ad hoc development of statutory services and on-going support for local voluntarism has been typical in Ireland's history of LD service provision.

Planning and local politics

While the government has continually ‘recognised’ the LDV sector, it has at the same time failed to set up a national spatial strategy for planning LD voluntarism. This means that at the regional and local level, there has been no distinct geographic plan that aims to structure voluntary home care across scale. The lack of legislation and mandatory provision has meant that community care can appear quite different in different parts of the country:

The absence until January 2005 of any organisation responsible for managing the health service as a unified national system (now under the remit of the Health Service Executive) has left behind a legacy where the impact of human agency and the cult of the individual have been ubiquitous in community care, where politically strong advocates have been instrumental in promoting the development of a particular service. The lack of mandatory requirements in the planning of community care has meant differences in approach exhibited by local HSEAs with different political leanings, which can result in the creation of areas of ‘winners’ and ‘losers’:

HSEAs have not historically put much emphasis on LD domiciliary services and have left them largely to the voluntary sector, preferring to concentrate on residential care provision. When coupled with the organic nature of the voluntary sector, community care service catchments have become more decentralised and inconsistent, responding to localised needs, or being prompted differently by active individuals. Representation has thus been along geographical or user category lines and only rarely both (Donoghue, Reference Donoghue1998).

According to the voluntary organisations interviewed, within the medley of associations and groups there is a lack of shared knowledge between service providers, and from a geographic point of view it appears that service provision is often ad hoc and poorly integrated across the country:

While there have been some integrated initiatives in child services, it still remains fragmented for adult services. In particular, those organisations not concerned with influencing the wider policy process have been intent on focusing on their local services, not the national picture. Furthermore, even some ‘national’ voluntary agencies are territorially designed to meet the very specific needs of particular places, such as CaringforCarers, a ‘national’ support service based in County Clare. While voluntary sector advocacy elsewhere has generally focused on the national scale to effect change, such as in the UK and Canada (Kitchin and Wilton, Reference Kitchin and Wilton2003), in Ireland the sector appears to be unique in terms of its focus on the local.

The focus on the local has largely been a result of Ireland's history as a British colony, when power was centralised in Dublin. The political landscape has since remained dominated by local clientelism as a mode of governance. The system of proportional representation supports four or five TDs (Irish Ministers) representing each constituency, with one of the highest representative ratios in Europe between each TD and the public (approximately 1:8,000) (Breathnach, 1992). This allows the public greater access to their political representatives and the ability to force constituency TDs to compete against one another (Kitchin and Wilton, Reference Kitchin and Wilton2003). Any change to this scenario remains unlikely, as it is in politicians' interest to foster clientelism, as local government reform would erode their power. This focus on the local political agent aggravated many carers and voluntary organisations alike, as they often played gatekeepers and arranged the allocation of services to users. While many parents were forced to access their services through this means, they disagreed with the fairness of this method of delivering services:

As a result of clientelism the LDV movement is highly fragmented, and has thus generally been organised at the local, constituency scale, at which change can be effected. Given the importance of the local scale in Irish politics, grass-roots groups, such as KARE, the Newbridge Access Group (NAG) and Fingal Awareness of Disability and Equality (FADE), have been both unable and unwilling to ‘jump scale’ and lobby at the national level, preferring to use the clientelist system, targeting specific local politicians to effect change (Kitchin and Wilton, Reference Kitchin and Wilton2003).

While attempts have been made by disability rights bodies, such as People with Disabilities Ireland Ltd, to jump to the national scale, they have been reminded that their very survival is dependent on the benevolence of central government. In relation to their attempts at co-ordinating and enlarging the sector's role and authority, according to Meade (Reference Meade2005) the state has mutated from generous benefactor to stern assessor within state–voluntary partnerships and has reminded community organisations of their own vulnerability. Consequently, these community groups have by and large been unwilling to ‘jump scale’ (Kitchin and Wilton, Reference Kitchin and Wilton2003) to effect change at the national level as they have been afraid to ‘rock the boat’, because they feel they might not get the funding.

Funding: grants and charity fundraising

Another consequence of the particular cultural and political history of Ireland has been the ad hoc funding of the voluntary sector. Of particular note here is the extent with which HSEAs allocate tasks and funding to the voluntary organisations. In some HSEAs, there is an obvious commitment to provide community services formally, instead of through the use of voluntary agencies. One traditional HSEA situated in a large rural area had a commitment to public service provision, while a more conservative metropolitan HSEA was committed to policies centred on the dismantling of public provision in favour of contracting out to the voluntary sector. This has profound geographical consequences on the appearance of the landscape of care at a local level across Ireland:

On the other hand, in areas where a HSEA is deemed to be less progressive, the voluntary sector has, perhaps by necessity, become a much stronger provider of services. Due to the lack of prior statutory coverage of community care services in these areas, community care for the HSEAs are generally still based on the provision of residential services, where voluntary groups are heavily relied upon for domiciliary care support:

While these different cases give rise to a different landscape of care for people with LD, in both of these cases, however, there is a lack of emphasis on any national quality standards or a definition of a particular set of ‘core services’. The development of ‘core services’ would have implied the establishment of clear criteria for their provision and eligibility, and the provision of earmarked funding for them (DFI, 2002). According to Donnelly-Cox and O'Regan, the vagaries of the statutory–voluntary relationship in Ireland have meant the sector has generally been regarded as ‘loosely defined and lightly regulated’ (Reference Donnelly-Cox and O'Regan1998: 1). As a result, the coverage of LDV services across scale in Ireland is largely based on localised needs with little allegiance to places outside their remit.

Consequently, while the issues of state sector contracting have had a longer history in Ireland, in comparison with the UK, for example, the reality is that formal contractual arrangements are still in the negotiation stage (Donnelly-Cox et al., Reference Donnelly-Cox, Donoghue and Hayes2001). A White Paper, Supporting Voluntary Activity (DSCFA, 2000), has attempted to address the statutory–voluntary relationship and lay out some principles for the future operation of the relationship. However, despite the long-established tradition of voluntary action in Irish society, there still remains a much looser funding arrangement with the voluntary sector at the local scale.

A major reason for funding and contractual arrangements remaining looser than elsewhere is the long history of deprivation in Ireland. Government cutbacks throughout the 1980s and early 1990s were to have a detrimental effect on voluntary sector operations, with the government being somewhat ambivalent to the sector and reluctant to enter into formal contractual agreements (Donoghue, Reference Donoghue1998). Today, despite getting funding under section 65 grants from HSEAs, many voluntary service providers still rely very heavily on charity fundraising. Even some large national organisations providing essential services for people with LD must rely on their own fundraising. Down Syndrome Ireland is a primary example: it provides family support, social and education services, and disseminates information, yet at the local level almost all funding for branches comes from fundraising. To show the extent of fundraising, the Comparative Nonprofit Sector Project found when public sector sources of income are viewed in comparison with cash from other sources, they are almost matched by funding from private sources, which is principally income from individuals (44.2 per cent of all income to social services) (Salamon et al., Reference Salamon and Anheier1998). It appears that individual giving is higher in Ireland than in other Western European countries (ibid.), perhaps due to the long-standing Catholic notion of charity.

Even though much of the Church's power has waned, its charitable legacy is still evident in the name and ethos of many disability and care-giving bodies. According to the Directory of LDV services, 50 out of 237 LDV centres, based all over the country, are still church-affiliated, making up 21 per cent of the total (NAMHI, 2003). While the direct involvement of religious orders in these organisations is in significant decline, it is still important for many lay volunteers, as discovered by Geoghegan and Powell (Reference Geoghegan and Powell2006). As the mission statement of Crosscare, a carer agency in Ireland, states:

For some, however, the construction of care and support as an act of benevolence to dependent and needy subjects is anathema. Disability lobby groups elsewhere have resisted any association with religious and other such charities (Oliver and Barnes, Reference Oliver and Barnes1998). Such resistance has also led to intense debates about whether individuals should be constructed as requiring care or personal support (for example, Thomas, Reference Thomas2007). However, as Dowse (Reference Dowse2001) points out, the disability movement's promotion of a strong disabled identity may be difficult to achieve for people with LD. She acknowledges some people with LD will have cognitive limitations which curtail a broader awareness of the political voice expressed by other disabled people.