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Establishing an Observatory on Human Rights in Long-term Care

AN INTRODUCTION TO THE PROJECT “ESTABLISHING AN OBSERVATORY ON HUMAN RIGHTS IN LONG-TERM CARE”

Sage Advocacy has secured funding from the Irish Human Rights and Equality Commission under its Human Rights and Equality Grants Scheme 2021-22 on a project called “Establishing an Observatory on Human-Rights in Long-Term Care in Ireland”.  One of the key objectives of this project is to give people who experience long-term care and support services the opportunity to have their voice heard and affect change.

Sage Advocacy is a support and advocacy service with a particular focus on older people, adults who may experience situations that increase vulnerability and healthcare patients.

This project is concentrated on recipients of Long-Term Care and support services.

Long-Term Care is a variety of services offering support to people who require assistance in daily life for a period of time that is not expected to be short-term. Long-Term Care is provided in Ireland primarily through nursing homes/long-term care settings and through home support services.   

The principle of ‘nothing about you/without you’ is central to our work.

The Observatory project is committed to supporting those who experience long-term care to take part in important decisions about the future of long-term care and support services in Ireland.

The project will seek to establish what are the key human rights issues for people who receive Long-Term Care and support services- from a both a health and social care needs perspective and broader issues of equality, social inclusion, safeguarding and the right to self-determination.

It will also examine the most effective methods for capturing the voice of people experiencing long-term care.

A report on the project “Establishing an Observatory on Human Rights in Long-Term Care” will be published by Sage Advocacy.

What is an Observatory on Human Rights in Long-Term Care?

Human Rights Observatories gather information in relation to human rights and publicise the findings. There are many different ways that this can be achieved. Observatories can concentrate on policy and how that affects human rights. They may also gather information that is collected by the public, governments or academic publications. Some Observatories also conduct research with relevant people. 

Plans for the future Observatory

This project will establish the terms of reference for the future Observatory on Human Rights in Long-Term  Care. The project will establish a stakeholder advisory board to guide the terms of reference. 

There are a range of stakeholders that need to be meaningfully involved to ensure that an effective and sustainable Observatory is developed. In keeping true to Sage Advocacy's values of nothing about you without you, the focus in this initial project is on those with lived experience of long-term care, and their families and carers.  We look forward to engaging with other relevant stakeholders in the future stages of the development of the Observatory.

How can services provide support to the project? 

If you work in a service that provides long-term care and support and would like to know more about how you can help the project, please click here.  

Aims of the Project “Establishing an Observatory on Human Rights in Long-term Care”

A key aim of the project is to influence policy and public discourse about long-term care and ensure a refocusing of care in the context of human rights.

The Programme for Government has committed to establishing a Commission on Care, please see notes below for more information.

The project wants to ensure that the human rights of people receiving long-term care support services are central to the Commission on Care’s work.

It will seek to ensure that the Commission on Care hears and listens to as many voices as possible of the people who have lived experiences of long-term care and support.

The project will conduct preliminary research to identify key human rights issues in Ireland’s current system of long-term care and support services.

This preliminary research will examine human rights in long-term care and support services – from a health and social care needs perspective including broader issues of equality, social inclusion, safeguarding and right to self-determination.

The project will also investigate targeted funding supports that other European countries have adopted may help to improve family life and increase realisation of human rights for the person receiving long-term care.

A report will be published by Sage Advocacy as part of the “Establishing an Observatory on Human Rights in Long-term Care” project which will be submitted to the Commission on Care.

How to get involved

The Project wants to hear directly from people who have lived experience of long-term care and support services about the human rights issues that are most important to them.

Taking part in this project is voluntary.

You can decide whether or not you want to take part.

You can change your mind even if you said that you wanted to take part at the start. You will be asked for your consent before taking part.

For people with lived experience of Long-Term Care:

Please participate in as many of these methods as possible. The printable questionnaire download has information on support available. You can also contact Niamh, the project coordinator directly, if you would like a copy to be posted out to you or require further assistance. Her contact details are outlined below. If you complete the questionnaire, you may be invited to attend a focus group. We would also like you to complete the online survey if you can. 

For family members, carers, partners, neighbours:

Please complete the Online survey only. 

  • Questionnaire: A questionnaire has been developed as part of the project. The questionnaire will be confidential (private). It asks people to tick statements that apply to them. Please click the Download Questionnaire link or button below to print the questionnaire or fill it in online.
  • Focus Group: A focus group is a group of people who get together to talk about something that they all have an interest in. People who have experience of long-term care will get together and talk about what they believe are the key human rights issues in Ireland’s current systems of long-term care and support services. The discussion will be recorded and the project coordinator will include parts of the discussion in her report. 
  • Online Survey: An online survey is available for people with experience of long-term care and their supporters to fill out. A supporter could be a family member, a partner, a friend or a neighbour who supports someone in need of long-term care. The results of the survey will be outlined in the report.  Please click here for the survey.
  • Evaluation: The project will ask everyone who participates for their opinion on how the project has made it easy or difficult for people who took part. We also want to find out if the people who took part feel that the project is looking at the most important issues. All of this feedback will be featured in the report.
Download Questionnaire

Project Co-Ordinator “Establishing an Observatory on Human Rights in Long-term Care”

Niamh Delany is the project Co-Ordinator for the project. Niamh has facilitated self-advocacy and empowerment for many groups experiencing long-term care and support services.

She is passionate about human rights and participation for all citizens. Niamh has designed the project together with Sage Advocacy to identify key human rights issues in Ireland’s current systems of long-term care and support.

To contact Niamh call on 087 9609419 or email at niamh.delany@sageadvocacy.ie.

Notes:

What is the Commission on Care?

In June 2020 the Programme for Government set out a commitment to establish a commission to examine care and supports for older people. (see gov.ie - Programme for Government: Our Shared Future).

The Programme for Government stated: “The impact of COVID-19 has been particularly difficult for older people. It has been challenging for those who live on their own and for those residing in nursing homes.

Learning from COVID-19, we will assess how we care for older people and examine alternatives to meet the diverse needs of our older citizens. We will establish a commission to examine care and supports for older people.”

The Minister for Older People, Mary Butler TD told the Dáil: Care Services – Tuesday, 28 Sep 2021 – Parliamentary Questions (33rd Dáil) – Houses of the Oireachtas that the Government is “assessing the focus and remit of a Commission on Care for older people.”

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