The situation of younger people with disabilities living in nursing homes in Ireland - phase 1 (Plain English Summary)

This research is very timely given Ireland’s recent ratification of the UN Convention on the Rights of Persons with Disabilities, the imminent full commencement of the Assisted Decision Making (Capacity) Act, 2015 together with proposed legislation dealing with Deprivation of Liberty. Although the sample in the study is small, it offers valuable insights into the referral of, and pathways into nursing homes for younger people with disabilities. Whilst law and policy are centred on the enabling of people with disabilities to live the lives of their choosing in the community, the report notes that the supports to enable them to do so ‘are underdeveloped, unplanned and often not sufficient to meet their needs‘. Instead of taking a human rights based, social model approach, which would look to the person’s will and preference, there is an overemphasis on the medical model in the assessment form. There is little focus on a person’s abilities, capabilities or on options for care in the community. Indeed a person’s preference for care seems to have been poorly recorded or not recorded at all. The research makes it clear that younger people with disabilities do not often have a meaningful say in decisions that profoundly affect and impact their lives, rather their referral to nursing homes is defined by their level of functioning. The vast majority of these people, who enter nursing homes remain there without assistance to achieve an outcome of living independently and without really being in control of their own lives. The report concludes with some very good and practical recommendations for both government and practice. These include adopting a personalised approach to the assessment and care of younger people with disabilities, and a commitment to exhaust all possibilities with the person centrally involved, assisted where necessary, before nursing home care is considered. We hope that government and the Department of Health will take the time to review the findings and recommendations of the report, and to take the necessary action to address the inappropriate placement of younger people with disabilities in nursing homes