A rights-based approach for older people in long-term care The European WeDO experience by Maude Luherne, Policy and projects officer 3 April 2014, UN Social forum Geneva

AGE Platform Europe at a glance Set up in 2001, Social NGO with Belgian Statutes European Network with about 160 Member Organisations Represents directly over 30 million older people Aims to voice and defend the interests of older people and to raise awareness on the issues that concern them Co-financed by a grant of the EU (DG Justice) and by its members

What do we mean by ‘long-term care’? We have very different definitions in Europe for long-term care; we use a wide definition to cover the reality of all the different care services which are provided to answer needs on the long-term.

Long-term care in the EU Definition (WeDO quality framework for long-term care services) “They need to encompass prevention, rehabilitation and enablement, cure and care, including end-of-life care. They combine health and social care for activities of daily living (ADL) such as eating, bathing, dressing, grooming, housekeeping, and leisure. They also cover the “instrumental activities of daily living (IADL)” such as managing one’s finances, shopping, using the telephone, transportation, and in some countries other activities such as taking medication. They can be delivered in various settings spanning the continuum from the beneficiary’s home to intermediate care and (semi-) residential facilities.”

Long-term care in the EU Very diverse situations in the EU countries We face the same challenges: ‘Silos’ approach between health and social care impacting on the objective of person-centred care and support (different funding, administrations, sources of information) Financial pressure on care systems and on older persons’ incomes (1/5 older person at risk of poverty), added to lack of adapted environments, risks of social isolation, etc. Lack of support to informal carers, lack of recognition of professional care work Quality: what can I expect from the service I receive, what are my rights? Lack of adequate support to persons with dementia Prevention and fight against elder abuse There is a great diversity of needs and expectations (at health, social and financial level) in Europe regarding long-term care (LTC), but there is also a diversity of systems and funding systems. When speaking of LTC, and especially with the definition I just provided, this means a mix between different decision levels and different sectors covered which do not necessarily think of working together. There are common challenges in Europe: A ‘silos’ problem between social system and healthcare system, which makes it difficult for a coordinated, coherent LTC system to emerge, but also more generally to reach a person-centred approach to health and social support and care – this means also very different administrative and funding systems, difficulties to get information and in the end an impact on getting an adequate support Social isolation Financial sustainability ‘pressure’ on care systems and on older people’s incomes, one on five older persons are at risk of poverty in Europe. This means also very different problems of social isolation, energy poverty, geographical isolation and lack of mobility due to unadadapted environments and transport. A lack of support to informal carers Lack of recognition of professional carers work in long-term care services Question of quality: what can I expect from the service I receive, what are my rights? Finally, the adequate support and care to people with dementia, and the prevention and fight against elder abuse are common issues all over the EU

A right to long-term care? This session is on Long-term care and not, as for the other sessions ‘older persons and the right to long-term care’. There is a ‘right to health’, which actually is very similar to a right to LTC, but LTC covers a much wider range of situations not linked to health exclusively, but includes as well daily life support activities with the idea of a regular and long-term support. So I am wondering, is there a right to long-term care? We don’t decide to need care and support on a long-term basis, that’s a common risk we all are exposed to. This right covers indeed a wide variety of different health and social support activities. Care should actually be understood as support, support that we anyway all need during our lives even if we only experience it on the short term for some of us. Behind this right to LTC, we have the idea of the availability of care services answering very different needs and choices, the access of an integrated system with both health and social support provided to answer the great variety of needs, and the idea of a need for a ‘free choice’ of the different options for care. That ‘free choice’ approach is what for example Sweden set up. So Would actually developing a ‘right to LTC’ would help a better efficiency and coordination of our health and social services, not only in LTC but in all types of support provided, and help to provide a ‘person-centred’ support?

A vision for long-term care in Europe Same challenges, we need to find a common vision!

EUSTaCEA 2008-2010 European Charter of the rights and responsibilities of older people in need of long-term care and assistance 10 articles: 9 rights, 1 responsibility + Accompanying guide Translated into 9 languages EUSTaCEA (2008-2010) developed a European Charter of the rights and responsibilities for older people in need of long-term care and assistance. It is made of 10 articles, 9 rights and 1 responsibility. Based on the French and the German Charters, It is the result of reflections between ten EU countries.

The EUSTACEA project The European Charter for older people in need of long-term care and assistance : Ten articles Art. 1: Right to dignity, physical and mental well-being, freedom and security Art. 2: Right to self-determination Art.3: Right to privacy Art. 4: Right to high quality and tailored care Art. 5: Right to personalized information, advice and consent

The EUSTACEA project The European Charter for older people in need of long-term care and assistance : Ten articles Art. 6: Right to continued communication, participation in society and cultural activity Art. 7: Right to freedom of expression and freedom of thought/conscience: beliefs, culture and religion Art. 8: Right to palliative care and support, and respect and dignity in dying and in death Art. 9: Right to redress Art. 10: Your responsibilities

WeDO (2010 - 2012) European Quality framework for long-term care services Translated into 11 languages 11 quality principles and 7 areas of action Case examples and good practices Methodology for a participatory approach The second one is WeDO. Using the charter as a reference, it developed a EU quality framework… It is the results of active work of national coalitions of stakeholders and provide both principles and ideas for action. Objectives identified Ensure a common analysis and vision on long-term care and raise awareness Increase the participation of older people in the identification of their needs and the health and social care services they require, in quality development measures and innovation processes; Help to develop fair and sustainable solutions to improve the wellbeing and dignity of older people in need of care and assistance by facilitating the exchange of good practices within a country and cross border; Promote better coordination and exchange of information between the different stakeholders to improve the quality and efficiency of the services, and especially between policy makers, service providers and care professionals, and between the professional and the informal carers; Improve the quality of long-term care systems by reaching a good balance between efficiency, cost saving and quality improvement; Through these actions, improve the quality of life of older people in need of care and assistance.

11 ‘Quality principles’, a quality service should be: Respectful of human rights and dignity Person-centred Preventive and rehabilitative Available Accessible Affordable Comprehensive Continuous Outcome-oriented and evidence based Transparent Gender and culture sensitive WeDO (2010-2012) developed with a multistakeholders, multilevel participatory approach a European Quality framework for long-term care services. It is translated into 11 languages, contains 11 quality principles and 7 areas of action on what a quality service is, and what it should contribute to. Each principle and area of action is illustrated by case examples and good practices. In addition, it contains a ‘Do’ part in a methodology for a participatory approach applicable by any organisation which would like to use the quality framework. It is followed by the WeDO2 project (2013-2015) preparing trainings to create reflections on what is good care, and how to use the EUSTaCEA charter and WeDO Quality framework as training tools.

7 ‘areas of action’, a quality service should contribute to: Preventing and fighting elder abuse and neglect Ensuring good working conditions and working environment and investing in human capital Empowering older people in need of care and create opportunities for participation Developing adequate physical infrastructure Developing a partnership approach Developing a system of good governance Developing an adequate communication and awareness-raising Objectives identified Ensure a common analysis and vision on long-term care and raise awareness Increase the participation of older people in the identification of their needs and the health and social care services they require, in quality development measures and innovation processes; Help to develop fair and sustainable solutions to improve the wellbeing and dignity of older people in need of care and assistance by facilitating the exchange of good practices within a country and cross border; Promote better coordination and exchange of information between the different stakeholders to improve the quality and efficiency of the services, and especially between policy makers, service providers and care professionals, and between the professional and the informal carers; Improve the quality of long-term care systems by reaching a good balance between efficiency, cost saving and quality improvement; Through these actions, improve the quality of life of older people in need of care and assistance.

The vision A rights-based approach to care European Charter of the rights and responsibilities of older people in need of long-term care and assistance Age-friendly environments and active ageing concepts as key to drive change WHO age friendly cities and participatory approach Integrated response to care and person-centred approach Multi-stakeholders approach Crucial role of informal carers and need to support them

A European movement Continuous exchange of practices and experiences from the field and reflection on tools to implement the framework We have 4 new countries: Poland, the UK, Bulgaria and Spain. It is about changing attitudes, takes time, step by step and with the help of multiple stakeholders at multiple levels (regional policy makers to ombudsmen, HR agencies and social service providers, older people organisations and informal carers organisations, at local, regional national and EU level.

What can WeDO? www.wedo-partnership.eu The WeDO partnership, informal network (EU and national coalitions) in 16 countries WeDO2 project (2013-2015) developing training tools Inspire EU coordination, inspire national and local stakeholders Easily transferable www.wedo-partnership.eu A european movement so What can we do? A WeDO partnership Ex.: European organisations, Austria, Slovenia, Belgium, Greece, Spain Continuous exchange of practices and experiences from the field and reflection on tools to implement the framework Already +200 good practices, a website with news and activities from the different countries. The WeDO2 project: training tools to be tested Ongoing inspiration of EU coordination, as well as national and local stakeholders

Thank you for your attention!

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