by Mary de Paor

Transferral of property

In their wish to provide for their child, some parents consider donating/willing their family home to their child’s service provider, in the hope that their child will be enabled to continue living in familiar surroundings–perhaps with other persons of a similar level of disability and the assistance of support staff. Not many parents would be in a position to make such a donation, but it is a dream which some would like to make a reality.

During his term as Minister for Health and Children, Brian Cowen, set up a working group to examine donations of property by parents of persons with a learning disability to a health board or voluntary organisation. There are many complex questions involved, for any hypothetical property. Is it located within the catchment area of the relevant service? Would extensive repairs or alterations be needed to make it suitable as a group home? Has the person with disabilities been consulted about his/her wish? Are there other compatible service users who could live with him/her? What support will be required, and are they available? What are the legal issues concerning the ownership of the property and responsibility for continuity of care for the relative? What happens if a different service becomes more appropriate to the relative’s needs? Is it more feasible to transfer property to a health board which has the statutory responsibility for care, than to a voluntary service contracted (by the health board) to provide a service?

Understandably, the Minister’s Review Group on the Transfer of Property has not yet completed its work. Michael J. Murphy, Financial Controller for the Hospitaller Order of St John of God, is a member of the group. He summarises the views of the St John of God Order on the matter:

‘We view the issue as being around rights, ethics and equality. We believe that it is inappropriate to link the provision of a service which is provided at no charge to the user with the donation of property. Access to a service is a right and as long as there is a resource issue, this access has to be managed through waiting lists, with only those judged to be in greatest need receiving a service. There is an ethical issue around accepting a donation in a situation where there is a potential conflict of interest around accessing a service. Principles of equality might be compromised. However, unrestricted donations from whatever source are to be welcomed and encouraged.’

Private cooperatively-owned group homes

Some ten years ago Eithne Clarke brought together a small group or parents who formed ‘Lorrequer House’ to purchase a property, having negotiated a partial grant from the [then in operation] Department of the Environment Capital Grant Scheme for Sheltered Housing. In the beginning ‘The Bungalow’, in Drummartin Dublin 14, was used as five-day accommodation, but eventually it became a full-time residence. The parents’ committee recruited a team of house parents and employed FÁS students. The project has involved a great deal of administration and maintenance work, Lorrequer House has benefitted from the voluntary talents of the founding parents and the residents’ siblings who include solicitors, an accountant and a social worker. It is only recently that the Eastern Health Board has taken some responsibility for staffing costs.

Although Eithne Clarke has had a number of enquiries over the years from other parents interested in how ‘The Bungalow’ was established, she is not aware that anyone else has actually set up a privately-owned group home.

Group homes

Over the past decade, many service providers across the country have developed group homes for a number of their adult clients, although demand still far outstrips the number of properties and support staff available. Successful transition to community living requires extensive preparation and coordination, and should never be arranged precipitously when an individual is in crisis or trauma, or in need of temporary respite-care. Quality of life issues in community living, increasingly in group-home settings, are regularly studied and monitored.

Voluntary Housing Associations

In her book, Moving on, Rita Lawlor recounts how happy she was to move into her own flat–independent living with some assistance from a support worker. Her accommodation was arranged with The Housing Association for Integrated Living (HAIL), the Dublin voluntary housing group established in 1985 to provide housing with security of tenure for people with special needs, including physical disabilities, mental health needs and families on low-incomes. In 1999 HAIL had 48 dwelling units, providing housing with security of tenure for 116 people. It has a mixed housing development in the north city area of Dublin which consists of ten family homes, nine apartments and five wheelchair-adapted bungalows. HAIL’s Housing Support Service helps residents with a wide range of issues from household budgeting to broad emotional support. The association has received financial support from several bodies, including Dublin Corporation, First Active, The People in Need Trust and St Brendan’s Mental Health Association. During 2000, HAIL hopes to complete a development in North Clondalkin and is negotiating for sites in the Tallaght area and in the inner city.

Other learning disability services have established supported living sections. For example, the Brothers of Charity have established the Peter Triest Housing Association, and in Dublin, the ‘City Gate’ service of the St John of God Brothers has worked in cooperation with Respond!, a voluntary housing authority with headquarters in Waterford and a Dublin office at High Park Convent, Grace Park Road, Dublin 9.

Supported living provides services with another innovative model for group and individual living. On the next page, some service-users in the Midlands Health Board area describe their lifestyle, and Kathy O’Grady discusses the principles of supported living