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 1

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 2

What do we mean by ‘long- term care’? 3

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.” 4

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 5

A right to long- term care? 6

A vision for long- term care in Europe 7

EUSTaCEA 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 8

The EUSTACEA project o 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 9

The EUSTACEA project o 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 10

WeDO ( ) 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 11

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 12

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 13

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 14

A European movement 15

What can WeDO? -The WeDO partnership, informal network (EU and national coalitions) in 16 countries -WeDO2 project ( ) developing training tools -Inspire EU coordination, inspire national and local stakeholders -Easily transferable - 16

Thank you for your attention! 17

AGE Platform Europe Rue Froissart Bruxelles – Belgique Contact person: Maude Luherne tel. : fax : Register to our newsletter Coverage!