Older persons’ views on the right to autonomy and independent life Nena Georgantzi Legal Officer UN Social Forum 1-3 April 2014, Geneva

Busting the myth of ageing Dependence is not part of the normal course of ageing Autonomy does not decrease with age BUT there is an increased risk of loss of autonomy and independence in old age In many European countries when people reach legal retirement age, they no longer have equal rights in retaining their autonomy, nor do they have access to systems of support. This is because societies, legal and social protection systems perceive declining abilities and dependence as the inevitable destiny of old age. For example, in Greece if disability occurs after the legal retirement age there is no disability allowance available. This means for example that older persons with dementia, which in its advanced form is one of the most severe disabilities as individuals need 24h support, receive no financial help to cover for the supporting needs in their everyday lives. Similar discrepancies exist in Germany, France, Belgium, Ireland and probably many other countries. This means that our culture, our laws and policies accept autonomy decreases with age; that the older the person, the more vulnerable, the more passive and the less self-reliable and the less autonomous he/she becomes.

“What I miss is the freedom to choose, to choose when I get up, what to have for lunch, what to wear today” From Accompanying Guide to the European Charter of the rights and responsibilities of older people in need of long-term care and assistance Such ageist perceptions exist both in formal restrictions of autonomy, such as systems of guardianship or involuntary imposition of protective measures, but they are moreover prevalent in informal restriction based on pure age prejudices and stereotypes about one’s capacity to act beyond a certain age, such as not giving people the choice of where to live, what to wear, what to eat, or even what time to go to bed.   Yet in reality, autonomy does not decrease with old age, it is our societies, our environments, our laws and policies which are too slow to adapt to the ageing population.

Autonomy/Independence WHO Policy Framework on Active Ageing (2002) Autonomy is the ability to make personal decisions about how one lives on a day-to-day basis, according to one’s rules and preferences. Independence is the capacity of living independently in the community with no and/or little help from others The WHO Policy Framework on Active Ageing defines Autonomy as the ability to make personal decisions about how one lives on a day-to-day basis, according to one’s rules and preferences. Autonomy ultimately includes the notions of legal capacity, dignity, self-determination and is about both holding rights and responsibilities.   Independence is the capacity of living independently in the community with no and/or little help from others. Autonomy is a pre-requisite of independence, but the latter also requires a set of enablers, such as the organisation of social and health systems which provide adequate care and support, empowerment of the individual, environments adapted to older persons’ needs, training professionals and informal caregivers to provide for personalised assistance. In other words autonomy is allowing older persons to choose the channel they want to watch on TV and independence is giving them the remote control in case they cannot reach for the TV.

Autonomy and independence in the context of ageing Distinction between compulsory and voluntary is blurry De-institutionalisation is not a panacea Beware of well-equipped prisons But also autonomy is not only about taking voluntary decisions Distinction between compulsory and voluntary is blurry People who live voluntarily at home but are dependent upon the schedules and routines of carers (forced choice) When there is no alternative to institutional care, because older persons do not have family or resources to receive care at home In situations of advanced dementia people may not be able to express wishes, object, nor understand the risks, implications or side effects of treatment or placement. For these patients, just like objection may be unconscious or irrational due to the cognitive decline, passive agreement does not necessarily mean that the person accepts the measure taken. De-institutionalisation is not a panacea The issue of autonomy and independence is not institution-specific. These situations do not occur in institutional settings alone, as care at home, delivered by a wide range of providers without applications of human rights standards, entails equal if not greater risks of human rights violations. Beware of well-equipped prisons Without good links to where people live, without bus, train, taxi and other community transport it could mean we have provided housing suitable for older people to remain within, but we have simply put them in a well-equipped prison. This is crucial when defining what kind of independence we provide; do we just provide gagdets to allow older persons live at home and be a less of a burden to social expenditure or do we provide inclusive solutions that allow them to live and contribute in the community?

Autonomy or Economy? Now in the context of demographic and financial crisis, the question is more often one of economy than of autonomy. For example in Spain many older persons have been withdrawn to informal care at home because their families can no longer afford to cover the expenses of residential care, which exposes them to risks such as inadequate care, abuse and limited autonomy as this is not done with prior assessment of their needs and without any support for care at home. The focus of ageing policies so far has been on who pays to maintain older people and how public services get delivered to cater for specific needs, lacking any thinking of how policies and the delivery of services can fulfil the fundamental rights of older persons to autonomy and independence. The pressure on public budgets are increasing the risk of human rights violations against older persons in many EU countries and it is more timely than ever to shift the discussion from economy and needs to rights. http://www.rtve.es/alacarta/videos/telediario/crisis-economica-afecta-cada-vez-mas-residencias-mayores/1432350/

Saying that the CRPD is enough is abstract and dangerous. A comprehensive framework with specific consciousness of ageing is necessary. Saying that I do not mean that the CRPD does not sufficiently reflect This is why it is high time to zoom in to the specificity of ageing and looking into ways of a comprehensive, instead of fragmented approach of rights of older people. It does not have a specific consciousness of ageism and age discrimination, nor of the intersection of age and disability.   and clarify issues of autonomy and independence for persons with disabilities For AGE a new legal instrument is necessary to raise awareness of the specificity of human rights challenges of older persons, which are linked to stereotypes and prejudices about ageing. This means that we should continue to clarify and build awareness of how far the CRPD applies to older persons who are persons with disabilities and how it can be used as an advocacy tool and at the same time

AGE Platform Europe Rue Froissart 111 1040 Bruxelles – Belgique Contact person: Nena Georgantzi E-mail: nena.georgantzi@age-platform.eu tel. : +32.2.280.14.70 fax : +32.2.280.15.22 www.age-platform.eu