Foreword by Paula Tesoriero, NZ Disability Rights Commissioner.
In July 2017 I commenced my role as Disability Rights Commissioner. As a disabled New Zealander, I have a good understanding of many of the barriers and challenges that disabled people can face when going about their everyday lives. However, even I can still be surprised by the extent of the systemic paternalism within our community. The “we know what’s best for you approach” is still evident in some of our laws and practices. Those who are considered to be “lacking capacity” are particularly vulnerable. Well-meaning families, clinicians and lawyers too frequently step in and make decisions about what they think is best.
This report considers legal and ethical issues associated with residential care for older people when the care is provided in circumstances where the resident concerned has not consented. That is, situations where older people who experience dementia related conditions are “placed” in secure rest home or residential facilities even when they do not want to be there. These individuals live in locked facilities and are prevented from leaving. Even if they are compliant and do not object, they have their liberty and personal choices curtailed.
The current law in this area is complex and some of the contributors to this publication argue that it is outdated and no longer “fit for purpose”. It is also difficult to reconcile common practices with the requirements of the United Nations Convention on the Rights of Persons with Disabilities, which provides that disabled people have a right to live in the community with choices equal to others, including where they live and with whom. Furthermore, there are concerns about the extent of the legal safeguards in place to protect the rights of residents once they are “placed in care”.
Each essay in this publication outlines a particular perspective or concern relevant to this issue. The papers in this compendium represent the views of the authors only. They do not necessarily represent the views of the Commission nor of other contributors. These papers are based on presentations from a series of seminars that took place throughout New Zealand during 2016 and 2017. Over 450 people from a wide range of clinical and professional backgrounds attended the events and participated in workshops to identify and discuss areas of concern and changes that need to be made to provide better legal and human rights protections.
The purpose of this compilation is to generate further discussion and debate about what is a significant, but often invisible, issue for many New Zealanders. Around 5000 older New Zealanders are living in secure aged care residences. What is glaringly absent from this compilation is the perspective of those who live in these facilities. We do not know much about how they feel about the situations they are in or what it is like to be forced, against your will, to live in a place that is not your home and is not where you want to be. It is important that we advocate for these people and do whatever we can to ensure that they are supported to live the best life that they can and that their rights, preferences and wishes are respected. Dementia and cognitive decline are conditions that any one of us might face as we age – we all have a vested interest in ensuring that we “do the right thing” and that the law and practice in this area aligns with international obligations and expectations.