Setting the context for de-designation
The development of services for people with intellectual disability in the latter half of the 20th century saw the beginning of a process of specialisation that led to the emergence of ‘special’ places for so called ‘special’ people. The Commission of Inquiry on Mental Handicap (1965) described the existing status of services for people with intellectual disability in Ireland; it called for greater equity and fairness for people with intellectual disability and inspired the development of local facilities across the country. Special centres and special schools were developed in the 1960s which also introduced the development of a range of specialised professions, which included registered mental handicap nurses (RNMH, now RNID), special education teachers and other professionals such as occupational therapists (OT), speech and language therapists (S<), physiotherapists, psychologists, psychiatrists and social workers.
A range of therapies were devised that required special equipment including hydro-therapy pools, multisensory rooms and snoezelen rooms. The underlying assumption in specialisation was that people with intellectual disability had special needs. The model was one that led to more sophisticated and varied specialisations, leading to a service that could respond to a broad range of special needs in a highly sophisticated and nuanced manner. Local parents and friends groups were guided by the zeal of the specialist movement, in that something special was better than something ordinary.
In order to promote full citizenship of people with intellectual disability, Irish government policy began to acknowledge the importance of inclusion, participation in mainstream society and the significance of valued social roles for people with intellectual disability (Robins, 1986).
Throughout the twentieth century in Ireland, home for many people in care with intellectual disability was in a large residential centre, institution or psychiatric hospital. These facilities were situated on the outskirts of large towns with the ‘inmates’ hidden away, protecting the community from the ‘insane’, ‘mentally sick’ and ‘retarded’ (Robins, 1992). By 1981, the census figures showed that there were approximately 1900 people with intellectual disability in the care of psychiatric services (Mulcahy and Reynolds 1984). Others were placed in the care of religious orders and, in later years, in the care of the health boards.
A report of the study group on the development of psychiatric services, The psychiatric services: Planning for the future’ (1984) recommended that people with intellectual disability would not in the future be admitted to psychiatric hospitals and that those with intellectual disability already living in a psychiatric hospital should be catered for separately from those with a mental illness. It also recommended that some of this cohort be considered for placement in specialised community services with adequate back-up facilities.
The report Needs and abilities: A policy for the intellectually disabled (1990) outlined the best approaches to meet the needs and realise the abilities of people with intellectual disability (Department of Health 1990). The report recognised that people with intellectual disability have the right to live as others in the general community. This vision placed an onus on the government to respond positively by planning to provide community-based services with an emphasis on positive quality outcomes for the people concerned.
Alvernia House and the transfer programme
Alvernia House in Portlaoise was de-designated under the Mental Treatment Act (1945) and the centre became a facility for people with intellectual disability, and part of the community care programme in 1989. An area of St Fintan’s psychiatric hospital in Portlaoise was separated from the psychiatric services and devoted to the care of 39 adults with intellectual disability. The residential service was provided over three floors of a building that was built in the middle of the 19th century and which was adjacent to the psychiatric hospital. The accommodation consisted mainly of large dormitories, large day rooms and dining rooms.
In the intervening years, international best practice called for the development of community-based services. In keeping with this philosophy, the Midland Health Board (MHB), as part of its 1998 service plan, established a project team to review the future direction of service provision for the 39 people with intellectual disability who continued to live in Alvernia House. As a result of the recommendations of the project team, a no-admissions policy to Alvernia House was implemented and the transfer programme was subsequently established in 2001. The Midland Health Board’s transfer programme secured ring-fenced funding to re-house a total of 206 people with intellectual disability from congregate care in HSE facilities in the Midlands; 39 of whom resided in Alvernia House, Portlaoise, Co Laois.
A consultation process commenced with the people residing in Alvernia House, nursing and care staff, staff representatives, families and the wider community. In 2006, six people with intellectual disability moved to a community group home in Vicarstown, Co. Laois. The success of community living for those individuals further endorsed the HSE’s commitment to progress the transfer programme for other people with intellectual disability living in HSE congregate care settings across the Midlands.
The transfer programme was also in keeping with the Irish government’s health strategy (Quality and fairness: A health system for you” (2001)) which further endorsed policies previously outlined in Planning for the future (1984)). Quality and fairness (2001) is a blueprint to guide health policy makers and service providers towards the vision of a health system in the field of intellectual disability comparable to the best examples in other countries. One of its principles is that all new service developments will be coordinated through person centred planning (PCP), with the principles of community integration at its core. In 2011, the HSE published a long-awaited document entitled Time to move on from congregated settings, a strategy calling for the continued transfer of people with intellectual disability still residing in congregated care settings in Ireland. It is important to remember that there are still over 4000 people with intellectual disability languishing in large congregated settings in Ireland today! This strategy describes it as essential for current programmes to include PCP, advocacy, support for community inclusion, in-home supports, community-based primary care and specialist supports and a right to work and lifelong education.
Making it happen
In 2011, a joint application was submitted to Genio for ‘once-off’ funding by the HSE Regional Disability Services and the Muiríosa Foundation (formally the Sisters of Charity of Jesus and Mary Services), to support the progression of the remaining 27 people with intellectual disability living in Avernia House to more optimal individual services in the community. As a result of this successful application, staff training in a new model of care, individually assessed needs and research in the use of assistive technology were implemented to act as a catalyst for the move from Alvernia House.
Regional Disability Services (RDS) of the Health Service Executive (HSE) Midlands area is pleased to announce that Alvernia House, Portlaoise closed its doors on Monday 4 Septemeber 2012, with the transfer of 27 people with intellectual disability to alternative living arrangements in community settings in the area.
All people who formally resided in the congregated-care facility in Alvernia House are now living their lives as part of the wider community. People are supported based on their individual needs in their own apartments, rented accommodation with signed tenancy agreements and in community houses supported by staff from the HSE and the Muiríosa Foundation (MF). The ultimate aim in this new model of service is to empower people with intellectual disability to lead lives of their own determination, where they will continue to be supported by the HSE and MF.
Disability service provision in Ireland has gone through a process of evolving change through the years, with religious organisations being the predominant service providers for the last fifty years. Specialised services for people with intellectual disability were developed in earnest throughout the 1960s, and it was from this process of specialisation that the notion of normalisation was introduced into Ireland. Planning for the Future (1984) was an attempt to separate people with intellectual disability from people who had a psychiatric illness, and it made recommendations to move people with intellectual disability from large psychiatric hospitals to community services. Quality and Fairness (2001) reiterated those recommendations, and community intellectual disability services continued to develop. In the MHB region the transfer programme (2001) started a process of de-institutionalisation for 206 people with intellectual disability from three large institutional settings, 39 of whom resided in Alvernia House. As part of the de-institutionalisation process in the Midlands, person-centred planning has been utilised with the stated aim of making the services about the person rather than about the services. The challenge today in implementing the congregated settings report is not only to effect closure of the large institutions, but also to continue to meet the support needs of the individuals in a person-centred way as they move to community living. Achieving community presence is the first step in community participation. It is important to remember that this is only the start of a process of including people with intellectual disability in their individual communities. The challenge begins now.