21 June 2013

Older people’s decisional segregation

One of the human rights violations which older people experience is how their wishes are overridden by others. The right to legal capacity is a core provision in the UN Convention on the Rights of Persons with Disabilities and actions are being taken to stop infringements of autonomy. A new treaty is being drafted to protect older people’s rights. Before jumping on the treaty bandwagon we should examine whether and how the purpose – implementation of older people’s rights – can be achieved using existing standards and mechanisms. The dual risk of developing a new treaty is that we will divert attention away from implementation, and new provisions will set a lower standard from that which already exists.

From right: Chris Belcher, Esther Rantzen and myself

This is a retracted version of a presentation to the annual conference of the Solicitors for the Elderly, at the British Library’s conference centre.

We are getting older, faster than ever before. In 1980, just prior to the convening of the First World Assembly on Ageing, there were 378 million people in the world aged 60 years or above. That figure has risen to 759 million now and is projected to jump to 2 billion by 2050. The human rights world has been slow to realise the impact.

Some human rights standards for older people do exist, like the 2002 Madrid International Plan of Action on Ageing. Useful as these may purport to be, governments freely ignore them because they are not legally binding (a legal point) and few people have heard of them (a visibility point). There’s action now in various parts of the world to develop a binding text. The Organization of American States is working towards a regional convention on the rights of older people. The African Commission on Human and Peoples’ Rights is drafting an additional protocol to the African Charter on Human and Peoples’ Rights. The Council of Europe beat America and Africa however, having published in 2009 a Recommendation on “ageing and disability in the 21st century: sustainable frameworks to enable greater quality of life in an inclusive society”.

The UN has also creaked into action. In 2010 the General Assembly established an Open-ended Working Group on Ageing to look at strengthening rights protection of older people. One of the ideas is to develop a new UN treaty on older people’s rights. So what issues would the new treaty address? In July 2012 the UN High Commissioner for Human Rights published a really fabulous report. It set out a range of global human rights challenges facing older people: social protection and right to social security, health, work, food security, housing, access to justice, issues around end of life decisions, and preventing and remedying violence, abuse and financial exploitation. The following month she also published an “analytical outcome paper” which is also worth reading.


Ageing and disability

People with disabilities age. Ageing can also cause disability. Rather than a specific number (30, if you ask an 18-year old), the High Commissioner points out that age a social construct “based on custom, practice and the perception of the role a person plays in his or her community.” Much the same can be said about disability, which is not a diagnosis but an interaction between an impairment and the person’s environment. In this way ageing and disability are the two rings in a Venn diagram, they are, in her words, “factors that, separated or combined, can make a person vulnerable to a range of human rights violations”. I want to look at one particular right, key in the ‘disability rights’ world and fast emerging as important for the ‘older rights’ community too.


Decisional segregation

Since MDAC’s inception in 2002 we’ve been rather obsessed about how laws let other people to take decisions for people diagnosed with some sort of mental impairment. We know that in many cases the adult in question is not even told about the procedure which strips her of the right to make decisions about her own life. A brief psychiatric report is all that’s required for a court to place the person under guardianship. A guardian is then appointed: this is often a person who the adult doesn’t know or doesn’t like, and who makes decisions that the adult isn’t informed about or doesn't want. These decisions can have a drastic effect on people’s lives in the areas of work, finance, voting, parenting, healthcare, and even sex.

In many places family-level corruption fuels the system. A $ub$titut€d decision-making system enables you to cash in on your relative by having them placed under guardianship, shipping them off to a distant social care institution and grabbing their money – Cheerio, auntie, I’ll come and visit… probably! These decisions are made supposedly in the person’s best interests. The UN High Commissioner too is worried about the “fraudulent loss of the enjoyment and exercise of their legal capacity, with the purpose of taking control of their financial affairs.”


Enhancing the possibilities for people to control their own lives

There’s a natural tension between the right to autonomy and the right to be protected from harm. Older people are sometimes more susceptible to various harms than others, like being sold needless double-glazing for their windows, signing their fortunes away to strangers, or being subjected to domestic violence.

States must ensure that both autonomy and protection rights are respected, protected and fulfilled. The challenge is to ensure an appropriate balance. Historically, many States have erred on the side of protection, not just from actual or imminent harm but protection from the person’s own decisions. These are decisions which others think are bad or bonkers. The CRPD reigns this in and limits the harm to “exploitation, violence and abuse” – that’s the language of Article 16 of the CRPD. Everyone should have dignity of risk, yet we tend to want people with disabilities, and older people, to be kept in protective glass bubbles. In this worldview, the person is reduced to their arthritic hip where everything is a life-threatening trip.

Respecting dignity, autonomy and the to make one’s own choices is the very first guiding principle of the UN Convention on the Rights of Persons with Disabilities (CRPD). The drafters of the CRPD were animated by a mass deprivation of decision-making powers of people labeled as incompetent. In law we think of self-determination as the right of peoples to govern their own nation. These macro concepts are useful at the micro level too, when we talk about a person determining her own life, setting goals and make choices. For others, self-determination means empowering someone so that they have control over decisions in their life – making sure they have and know how to use a sword to forge their way and a shield to protect them. Think modern day Roman soldier, but with more stylish sandals.

The American psychologist Julian Rappaport (1987) says that self-determination means “enhancing the possibilities for people to control their own lives”. I think that’s a beautiful way of putting it (thank you to Michael Wehmeyer for introducing me to Rappaport’s work in Oslo earlier this week).

The treaty body which monitors the CRPD says that the Convention requires States to “replace” regimes of substitution with ones which have a default of support. Countries nudging their laws towards this edict, albeit slowly. The Czech Republic and Latvia last year abolishing plenary guardianship in their laws and introduced forms of supported decision-making. We’re working with another ten or so European countries which are heading that way.


Elder legal capacity

The shift towards a system of support applies to older people too. The UN High Commissioner for Human Rights makes an explicit link between the CRPD and elder law, saying that CRPD negotiations and how the text is applied for people with disabilities “can guide the consideration of equality before the law for older persons and must be extended and further elaborated vis-à-vis their particular circumstances”. The 2009 Council of Europe Recommendation makes a similar point. It says that older people with disabilities want to live “with the maximum degree of freedom and autonomy, in human and physical environments and with support services that facilitate rather than hinder this style of life.” The Recommendation makes an observation which is often overlooked even by human rights NGOs, namely that women, people form minorities, migrants and LGBT people are at risk of discrimination when organising services and supporting autonomy and independent living (para. 1.3).


Standard-setting v. implementation 

It’s great that there is so much focus on legal capacity. But the risk of new standards appearing in an older person’s treaty is that the standard will be lower than the CRPD. We can already see this happening. The Organization of American States’ draft treaty sets out that “[a]ny and all restrictions on legal capacity must be properly substantiated, limited in time, subject to periodic review, and applied solely to specific decisions in which a lack of capacity and the need for proxy consent has been determined.” That may sound full of lovely safeguards, but it’s a perpetuation of guardianship systems which always purport to be in the person’s best interests and are always claim to be a measure of last resort. In reality, guardianship systems favour other people’s convenience and encourage swift guardianship. Nothing else is tried because nothing else exists. The last resort is concurrently the first resort too.

The CRPD represents a significant normative milestone. An enhanced international political focus on older people is long overdue, and this can be achieved by appointing a UN Special Rapporteur on Older People. But I’m not convinced that the UN should embark on yet more standard-setting when the standards which exist can be applied to older people, and mechanisms which exist should be used and tested. If there is to be a new treaty, we need to pay very careful attention to ensure that its provisions progress CRPD standards, rather than detract from them. 



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