Tools to guide and evaluate rights-based policies on long-term care


The European Centre for Social Welfare Policy and Research published in 2019 a report on the outcomes of a project on older people’s right to long-term care. Funded by the Swedish Ministry of Health and Social Affairs. This piece of work aims to fill in an important gap in monitoring the situation of older people with care and support needs, based on a human-rights approach.

What is it about?

The project developed two complementary tools that can facilitate the assessment and monitoring of governments’ policies and the outcomes of those policies in upholding the rights of older people with care and support needs.

  • The Rights of Older People Index (ROPI) includes a set of indicators that can capture a country’s legislative and policy framework (structures) and its national standards, guidelines, monitoring mechanisms and resources (processes) in relation to the realisation of the rights of older people with care and support needs. The ROPI gives a snapshot of the commitments made by States to promote and protect the rights of older people and of the mechanisms that they have put in place to make these rights a reality. It does not however reflect whether these laws and policies are sufficient, whether they are implemented in practice and how they affect the lives of older people who need care and support.
  • This is why the project has also developed a Scoreboard that gathers information on the outcomes of these policies and measures, with a view to understanding the extent to which these improve the enjoyment of human rights.

These two tools cover 10 domains: (1) Equal access to & affordability of care & support, (2) Choice, legal capacity & decision-making capacity, (3) Freedom from abuse & mistreatment, (4) Life, liberty, freedom of movement & freedom from restraint, (5) Privacy & family life, (6) Participation & social inclusion, (7) Freedom of expression, freedom of thought, conscience, beliefs, culture & religion, (8) Highest standard of health, (9) Adequate standard of living and (10) Remedy & redress. And the two sets of indicators have been used to gather results from 12 European countries, namely Austria, Finland, Ireland, Italy, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden Switzerland, and the United Kingdom.

What are the key findings?

> No right to long-term care: based on the findings access to different forms of care to live independently is not yet a guaranteed right by law (unlike access to health care, for example), outside of Sweden and Finland, and to some extent Switzerland. All other countries either restrict access based on income or devote too few resources to care despite seemingly ‘generous’ legislation (e.g. Portugal).

> Most problematic areas: first, there are no sufficient guidelines and measures to avoid the use of restraints in care settings. Second, there are key concerns in terms of allowing older people living in institutions the possibility to maintain their family or community life. Third, there is lack of entitlement to adequate and affordable housing for older people. Finally, there is a lack of awareness of rights among older persons and lack of mechanisms to promote awareness and to provide support and redress in case of breach of rights.

> Gap between commitments and practice: the comparison between structure, process and outcomes indicators demonstrated that there are areas where generous entitlements in paper do not fully translate into fulfilment of rights in practice.

> Gender differences: although it was not always possible to disaggregate data by gender, differences between men and women have been raised in the findings.

> Insufficient data: the report uncovers important gaps in data.

Main recommendations

  • Collect more disaggregated data
  • Mainstream the challenges and needs of older people in policy discussions both at the EU and national levels
  • Involve older people and their representative organisations directly in decision-making processes affecting their life
  • Make sure measures are tailored to the specific needs of the older population
  • ensure that both institutional and home-based services are regularly monitored to avoid violence and abuse

Download here the full report:
From disability rights towards a rights-based approach to long-term care in Europe

AGE logo AGE has contributed to the development of the conceptual framework and the initial iterations of the indicators. Although we warmly welcomes the two tools, we also acknowledge their limitations. Read here our full reaction to this report.

Rights-based_approach_to_LTC-AGE_joint_EP_event_Mar2020-banner-withLogos2 On 26 March 2020, AGE is joining forces with the European Centre for Social Welfare Policy and Research to run an event in the European Parliament. The aim is to present and discuss the main findings of the report together with policy makers, policy experts and representatives of civil society organisations.
For more information, please click here

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