There has been a dramatic change in what services for people with intellectual disability look like in an Irish context. In the Irish Midlands, since 2000, a transfer programme has attempted to vigorously improve people’s lives through the closure of large congregated institutions. The objective was to get people with intellectual disability out of hospital settings and into community-based homes where smaller groups of people with intellectual would co-reside. People’s lives improved because they had the benefit of enhanced privacy—their own bedrooms, rather than dormitories, they no longer had to use communal bathrooms and they had home-cooked meals in less stressful living environments. Although this may seem basic and self-evident, the previous reality still continues for the 4000 people in Ireland and around the world who still live in hospital settings.
Many people who moved to community-based residences continue to avail of day attendance at segregated facilities for people with intellectual disability. The assumption was that actually moving people into houses was an end in itself—with an almost magical allure that living in a nice house in the community with people with similar needs, where needs were being met, equated to having a life. The normalisation movement in the 1960s, social role valorisation (SRV) theory in the 1970s, and the introduction of person-centred planning (PCP) in the 1980s were attempts to convince service providers that people with intellectual disability wanted and needed more in their life than being minded and kept safe in comfortable aesthetically-pleasing buildings.
The deeper philosophical constructs of normalisation were missed, as long as there was an assumption that if people’s lives looked normal from the outside, that meant that they had fulfilling lives. While SRV was a popular concept, it was seen more as a luxury than a necessity in the life of the person with intellectual disability. We struggle to find examples of the SRV theory translated into practice. PCP has been a further attempt to improve people’s lives through discovering their true essence; it should ensure that the person with intellectual disability has opportunities to experience the unique things that give their live particular definition. The fact remains, however, that many PCPs are carefully crafted lists of activities that are circumscribed by the items on the service menu, but that do not grasp the essential person-ness of PCP. Many PCPs fall into the trap of asking for more of what is already offered in ‘special land’. The correct vision for people must be based on their universal human needs that are common to all of us and are not based on their ‘special’ needs, but on their ‘ordinary’ needs.
The closure of institutions in the Midlands and the opening of community group homes is only one step in the right direction. In reality, the group homes remain service settings. The first assumption was that a community house would be a ‘home for life’. But as people’s support needs change, they may be at risk of being moved to different settings. This can be also as a result of service needs. Some individuals who have moved from an institutional setting have improved their skills, and they are now over-supported in staffed houses. Staff are busy in home craft and do not always give the person with intellectual disability the opportunity to participate in personal activities, such as cooking and laundry. Opportunities to embrace person-centred active supports are not seen as a priority; it is often easier to do ‘for’ rather than ‘with’ the person with intellectual disability.
Contact with families; whether in the context of PCP meetings or informal reviews, can reveal the overriding theme of gratitude for what the service provides for their family member. There may be trepidation around expressing concerns or voicing complaints. And they may have a fear of being asked to do more with their family member. The question that has to be asked for each person is: ‘is there a better way to support the person to get a life?’ Families are becoming more aware of more individualised approaches to meeting the support needs of the person with intellectual disability, but they are at the same time cautious and do not want to ‘rock the boat’. The danger in this is that the group home model serves to set limits on the ordinary life opportunities that the individual could have outside of a service setting. The following case study illustrates this.
Andrew is a 29-year-old man who attended a special residential school for children with autism. He is the eldest of a large farming family. Many of his brothers and sisters reside in and around the family home. When he finished his education the only option available to him was to go into a large congregate setting where he remained a resident for over 10 years. Now Andrew has been moved to a community residence with five other people six miles from a town and 20 miles from his home. While every effort is made to ensure that his care needs are met, Andrew is a hostage to transport because he lives far from amenities and has limited access to the community. When his family are asked about his life, they state they are ‘grateful’ for what he has as it is much better than the institution from which he was moved. Their modest hope for their son would be that he would live in his own house with supports near their home so he could be more involved in his family life. They recognise and embrace his role as their loving son and brother and his need to be involved in his community.
In this case we have a clear direction from the family as to what an ideal life would look like for Andrew. It is fair to say that Andrew’s vision would concur with the family’s vision; Andrew loves going home, he counts the days from one visit to the next and most of his conversation is about his family and farming. When services listen to families and to the person with intellectual disability, and if they hear what they are saying, then enacting the vision should not be that difficult, because there is an agreed and shared goal. However, with the emphasis on Andrew’s custodial care, the drive for this change can be derailed, the status quo is maintained, and the model of the group home life prevails.
Patrick is a 20-year-old man challenged by the effects of foetal alcohol syndrome (which results in poor impulse control). As a child he was taken into care, with frequent moves, and lapses in his education. As an adolescent he was removed from a foster care arrangement and resided in a group facility for children with intellectual disability. In an effort to move him from congregate settings, Patrick was supported to have his own living arrangement. Patrick is now a tenant in an apartment where he resides on his own, supported by one-to-one staff during the day. At night time assistive technology is used to minimise risk. In reality, Patrick remains very isolated from the mainstream of society.
The problem is that Patrick is not in control of his life; he is subject to the staff interpretation of an individualised service, which is limited by their assumption that his life is good because he has a one-to-one staff presence. A lot of his engagement is with paid support staff, with the emphasis on protecting him and restricting him to activities such as sanding wood. The reality for Patrick is that the diagnosis of foetal alcohol syndrome defines him and restricts his opportunities. There is a distinct lack of socially valued roles and many missed opportunities for contributing to his community.
Despite service provision moving from large institutions to smaller group homes, or to one-to-one service provision, there is still a danger that the sole reliance on paid staff places individuals in a vulnerable position. There is a danger of not listening to the visions articulated by families and ignoring the voice of the individual with intellectual disability—circumventing the individual’s desire to get a life. As we re-consider our services, we have to pay much more attention to what the individual’s life would look like if they did not have an intellectual disability—and support them to achieve that. We need to inspire and empower families that ‘it is OK to dream’ and that service providers are ready to listen and to embrace change, with the ultimate aim of supporting the person with intellectual disability to ‘get a life’.
The challenges ahead are not easy and there are many obstacles that go with dismantling expensive, ineffective, inefficient and traditional services. It is difficult to configure how to disentangle and realign resources as we move from block funding of existing services to individualised funding—which is not in itself a guarantee that it will result in the person with intellectual disability ‘getting a life’. The vision for the person has to be based on the universal human needs—not their special care needs in the context of special services—rather, on the ordinary ways we can support them to ‘get a life’. The litmus test is whether we can look at their lives, replacing regret with a feeling of joy and satisfaction that, YES, they did ‘get a life’.