Alvernia House, in Portlaoise, closed its doors on 4 September 2012, with 27 people with intellectual disability moving into alternate living arrangements in community settings in the Midland area. The following is an account of one of these people, Philip Brady, and his progress so far in his new home.
Philip (42) moved from Alvernia into Russellstown in mid-July. He is a native of Mullingar and his new home in Russellstown is on the outskirts of the town, only a 10-minute drive from his parent’s house. Philip lives in the house with one other service user, Donal. On one of the very first visits to the house in Russellstown, Philip’s father Phil remarked that ‘it was a dream come true’ to see Philip in his own house. This sentiment, I think, encapsulates what it means to make the transition from institutionalised care to a community setting. Perhaps the most significant change in Philip’s life in terms of the two settings can be summed up in one simple word, choice. Philip is no longer expected to conform to the needs of the majority, as was the case in Alvernia. A recent study (Fitzsimons 2012) found that a common feature of institutionalisation was that the person with intellectual disability relinquishes control and responsibility of their own life. What we are seeking to do is empower people with the willingness to take back that control and responsibility and to live their lives on their own terms.
This has started with Philip on a small scale. Slowly the rigid routine of institutionalised life is being broken down. Philip now decides what time he would like to get up; he decides what clothes he is going to wear and what food he is going to eat. However, it is not simply a process of being presented with choices and responding. He increasingly has more input in these choices. For example, within the last month he has started to make his own lunch with staff support. This is something which may seem trivial, but it is a far cry from the set unit meals of Alvernia and it is another important step on the road to self-determination. That was a big day in the house.
Philip has recently had his first person-centred planning (PCP) meeting in Russellstown. The meeting was attended by Philip’s father, sister and brother, along with staff and Philip himself- Before the meeting we were keen to establish a plan that was specific to Philip, instead of a ‘fill in the blanks’ exercise not necessarily tailored to the person’s personal goals and aims. The meeting focused on improving Philips quality of life in specific domains, such as recreational activities (The Brady family and Philip have always had a lively interest in a broad range of music.), Philip’s identity as a Mullingar man and creating social roles for him. Philip sees himself as a son of Philip and Kathleen and a brother to his six siblings. He is fond of his nieces and nephews and is endeavouring to be a good housemate to Donal. However, Philip will require supports to develop his role as a neighbour and to become a more active citizen. This is something all of us working with Philip are keenly pursuing with him.
Philip’s transition from Alvernia has not all been plain sailing. There are challenges every day, not least is the often difficult task of trying to motivate him to try new things and engage in new activities. This reluctance is most likely the result of his institutionalised way of life for so many years. All we can do as staff, working closely with his family, is to try to expose Philip to as many new experiences as possible which may lead to a more fulfilling life. This is perhaps the most evident change between Philip’s former institutionalised life and his current way of life. The decision to engage in these new experiences, or not to do so, ultimately lies with one person—Philip.