As many of my readers will know, I spent three hundred and twelve days in hospital before I moved into a nursing home (or congregated) setting. Due to limited accommodation facilities in the West of Ireland, my new ‘home’ was located in a city more than one hour and 40 minutes’ drive away from family and friends. It was a city that I had not previously lived in and I knew no one. Although I have now made great friends in this city, it was a very frightening time to be sent directly from my hospital bed.
This congregated setting was meant to be a three-month respite period. From there, the plan was to progress to a home within the community where I could live independently. Seven years later, I am still here living in a cramped room in a congregated setting. It has been a long seven-year struggle with the ruling bodies assigned to aid my recovery. At times, I feel I am no further along in my struggle than the day I arrived here.
For more than a decade, there has been efforts across Ireland to promote the transfer of people with disabilities from congregational settings to community living. Research finds that community living, not congregated living, enables people with disabilities to enjoy a higher quality of life. A recent HIQA report, which compared both community and congregated living, found that individuals living in the community setting reported higher levels of overall health and wellbeing compared to those living in congregated settings. Residents who moved to smaller community homes consistently told HIQA inspectors that they were happier and had a better quality of life compared to when they lived in campus or congregated settings. One reason for this might be that smaller community homes promote increased personal freedoms and control over one’s own life. In other words, community living empowers persons with disabilities to live ‘an ordinary life’. These findings are important. Independence and freedom are basic rights that are advocated for, and protected under, the United Nations Convention on the Rights of Persons with Disabilities. Yet securing community living has proved difficult due to inadequate funding and the current housing crisis. A situation exasperated further by a global pandemic.
Despite numerous challenges and difficulties, as well as failure and opposition, my steady persistence to secure a home for myself has been constant. I am not alone in my struggle for independent living. There are countless other individuals also seeking to find a home within their community, and move out from a clinical residential setting. With the aim of increasing awareness, I have documented my struggles over the past years since my injury to find suitable accommodation.
Despite numerous difficulties, I felt I had finally made progress when local council offered myself a house in Castlebar town in May 2020. I felt a flutter of excitement creep over me as plans were drawn up to adapt the house to suit my needs; in a community surrounded by family and friends and much needed support. Sadly four months later I learned “due to the Covid pandemic funding was no longer available to complete renovation work’. I was back to square one with no a reminder that there was “no guarantee funding could be gotten and how long all would take’. So once again I wait in limbo until whenever “the situation changes” and “resources become available’.
I hope that highlighting my struggle and my journey will somehow empower or help others who are also struggling to live independently within their communities again.