Research studies in countries that have pursued deinstitutionalisation and community living have shown that family concerns before transition are, for a majority of families, replaced by support after transition (Mansell et al. 2007, p. 42)
Right: Ms. Rachel Malone and Mr. Micheál D’Arcy, enjoying a day out by the sea! They are both members of DPE Camera Club and both have stayed with host families.
Thirty-seven years of Community Care!
Institutionalisation of people who are seen as ‘different’ is a relatively recent development in the history of humankind (Mansell et al. 2007, p.1; Pohl 1999, p.57). Unfortunately it has become ingrained in our modern narrative of what is an acceptable life for people with intellectual disability (ID). This acceptance is so ‘normal’ to us here in Ireland that despite thirty.seven years of so called Community Care we have still to embrace the challenge of reintegrating people back into their local communities. How we do this is a matter of opinion, but it seems obvious to me that everyone, including yours truly, should be supported to live in our environments of choice. This rights-based approach won’t appeal to everyone, especially those who measure a person’s worth by how much wealth they produce. However, there are a number of step-down alternative living arrangements that most Irish people might just about tolerate. Many of them stem from the 1950s and 60s, but it’s never too late to try something ‘new’!
Take Shared Lives, for example (www.naaps.org.uk). This home.sharing service is provided by individuals, couples and families in local communities. They provide a range of accommodation and support options, including long term accommodation, to people with ID. Placements are arranged by schemes that approve and train the providers, receive referrals, match the needs of service-users to households, and monitor the arrangements. It is essential that placements should provide committed and consistent relationships of mutual benefit, i.e. real relationships. In England, households can provide support for up to three people at any time; up to two people in Wales. Community Living Welland/ Pelham in Canada, run Residential Alternatives which supports 126 individuals throughout the community, having shut down their old congregated institutional accommodation. Several individuals live independently in the community with some staff supports, but an integral part of their Residential Alternatives is the Support Home Program.
There are approximately 42 individuals living with families or with other adults, and they are considered part of these households. The household provides accommodation and personal supports to the individual(s) sharing their home. Staffing supports for Residential Alternatives vary from a few hours each week, to 24-hour support.
In Australia, Perth Home Care Services has a similar service called Alternative Family Care. The ‘alternative family’ (not to be confused with 1960s Hippies) receives a payment and regular weekend and annual short breaks in return for sharing its home.
Here in Ireland, the Health Service Executive in Limerick places about twenty adults on such a scheme, some of these move on to supported independent living options such as shared tenancies—two or more service-users living together, single apartment living etc.
In Counties Longford, Westmeath and Laois, the Muiríosa Foundation has been providing full-time accommodation to adults with ID since 1993. Their Room to Share scheme provides between twenty and thirty people with accommodation, and the Foundation plans to extend this ‘home.sharing’ scheme as part of the government’s Transformation Agenda. Payments to hosts vary and include a contribution from the service-user’s disability allowance.
Contract family accommodation
The ‘perceived’ inability of volunteer host families to provide for children and adults with complex care needs has led to the development of professional ‘contract families’ (Heslop et al. 2003). One such example is the joint venture between the Brothers of Charity Services and Ability West, in Galway (Murphy 2009). In April 2007, Pobal, under the Enhancing Disability Services (EDS) pilot scheme, funded the venture. Essentially a short.breaks or ‘respite’ service, it has the potential to accommodate a number of home-sharing arrangements.
Each family is paid an annual retainer, as well as expenses for each session, based on the level of need catered for. In return they agree contractually to provide a specific number of nights per month. Sixteen to twenty nights a month is not unusual in such schemes. More than one service-user may be matched with a contract family.
Placing adults who have specific needs with families is not a novel concept. There is evidence of support for the idea in post-famine Ireland (Finnane 1981). In practice, however, it emerged rather later.
In the 1960s a small number of dependent elderly people were boarded out in Dublin. This was followed in other counties including Co. Westmeath where two of the six people placed in 1983 had what was then referred to as ‘mental handicap’ (Gilligan and Keogh 1985). The Commission of Inquiry on Mental Handicap (1965) advocated the boarding out of children, following the fostering of one child with ID in 1962 (Hearne and Dunne 1992).
Today, The Health Service Executive (HSE) may make arrangements for the boarding out of dependent people in a private house, with payment for all or part of the costs. While boarding out of older people was developed prior to the setting up of the old Health Boards in 1973, it has not developed in a major way. The Boarding Out Regulations set out standards as to accommodation, cleanliness, safety and other related matters. They state that not more than six people can be boarded out in one house (Citizens Information 2009). This stipulation would not be acceptable today, where alternative accommodation must be personal and not congregated.
Home-sharing describes an arrangement whereby a person with ID lives with a host family. Homesharing (all one word) on the other hand, refers to an arrangement where the person with ID takes in a housemate or lodger in return for assistance with daily living. An example of this is Wesley Homeshare in Australia, which ‘provides a professional matching and monitoring service to bring together householders with a disability with people of integrity for mutual benefit’. Volunteers are recruited, coordinated, trained and supported to become ‘homesharers’. These homesharers are matched with householders with ID to provide practical help, share some expenses and provide companionship and security overnight in return for low-cost accommodation.
The aim is to allow householders to remain in their own homes (e.g. on the death of a relative/carer) and to avoid institutionalisation or relocation to an artificial group home arrangement. According to the cited website, homesharing also helps to address social isolation, dependence and feelings of self worth, loneliness and connectedness to the community; and optimise householder’s health, well-being and independence. It reduces reliance on expensive staff-based alternatives and the workload of case managers.
In one sense, nearly all the alternative options mentioned here strive for some form of independent or supported independent living. In addition to Home.sharing and Homesharing (described above) and Sheltered Apartment Living ( referred to in the final section of this article), there are many other forms of accommodation supports. Microboards (well developed in Northern Ireland) and other similar schemes operate by putting in place a circle of support to allow the beneficiary to live alone in his/her own home or with a person(s) of his/her choosing.
In Northern Ireland and other countries, people with disabilities use direct payments (cash) to enable them to employ, either directly or indirectly, individuals who assist them with everyday tasks. This model grew out of calls from people with high levels of support, many of them living in institutions, who demonstrated that this was both effective and efficient (Egan 2008).
Currently, people in the Republic of Ireland do not have a right to a direct payment, which would enable them to employ a personal assistant (PA). However PA services are provided by a number of service provider organisations, including the Irish Wheelchair Association (IWA), Cheshire Ireland, Enable Ireland, RehabCare and Centres for Independent Living, among others. These services are funded primarily by the HSE, and to a lesser extent by FÁS (Egan 2008).
NETWORK FIRST, run by the St John of God North East Services in Co. Louth, which largely subsidises the purchase of family assistance, is an example of this. However, it is aimed at people living with their immediate family, rather than people living alone—although some people living alone are given subsidies to purchase assistance, including overnight breaks.
The HSE provides some personal care services directly to people with disabilities. According to the HSE document Home Care Support Schemes for Carers, ‘Packages may also consist of direct cash grants to enable the patient’s family to purchase a range of services or supports, privately’ (Citizens Information 2009). The main priority group is older people, but in some areas the ‘care package’ is liberally interpreted by the HSE. For example, The West Limerick Centre for Independent Living is one of a number of service providers contracted by the HSE to administer care packages for the purpose of supporting people with disabilities, through the provision of personal assistance. In 2007 it delivered 57,800 hours of PA services to 110 people with disabilities (Egan 2008).
The Irish Wheelchair Association’s Assisted Living Service is the largest provider in Ireland, delivering in excess of one million hours to about 1500 people. It incorporates two models. In the Self Direct Service model, the service user ‘directs’ the PA and reports to the IWA Coordinator (similar to NETWORK FIRST in Co Louth). In the Support Service model, the service user and their PA both report to the Coordinator.
Over the past decade the Cheshire Ireland model of service has moved away from a residential setting towards a Person-centred independent living approach. Currently over one-third of Cheshire service users live in self-contained accommodation with daily support.
Sheltered apartment living
This model uses a number of apartments in an apartment block, with an in.house caretaker or family that supports the tenants in return for rent.free or reduced-rent accommodation. Like all the examples in this article the idea is not new. ‘Unobtrusive caretakers’ were used in the USA during the 1960s (Lee 1969, p.30).
The same model can be used to support a number of houses in a large housing estate or medium-sized town, where tenants can call on the caretaker at any time between 6pm and 8am (or at other times depending on the delivery structure) and where the caretaker can access the tenant, within a relatively short time span.
This article is just an appetiser of what is out there and what has been out there for over thirty and more years. As a young idealistic social worker in the 1970s, I could never have imagined having to write such a dated paper in the twenty-first century. Still, I suppose it’s never too late to try something new.