It is the implementation of the law, not the law itself, which is holding back progress

One of the key aspects about the law, both domestically and internationally, is that the law has to be clear and enforceable.

We can see this ‘in action’ where most of the criticisms of the National Minimum Wage have not been the way it’s been drafted, but the way it’s been implemented.

There can, of course, be ‘bad law’. Arguably, the freedom of information should contain a ‘carve out’ where public interest overrides commercial gain say for outsourced NHS providers (where surplus generation might trump safe staffing).

And so it goes on.

A lot of effort has been put into an instrument called the United Nations Convention on Rights of People with Disabilities. Under the guidance to the Equality Act, dementia is clearly a disability. Framing dementia as a disability totally alters the nature of the narrative, where the emphasis shifts from ‘friendliness’ to legal rights of people with dementia.

That rights are universal and inalienable means that it is not legally possible internationally to discriminate against somebody on the grounds of mental capacity, or to breach fundamental human rights in a disproportionate way.

Prof Peter Mittler is a very modest man, quite remarkable given his groundbreaking achievements. He has had a glittering career as a leader in putting disability on the political agenda. One of his recent speeches will give you a flavour of his work.

Mittler in fact habitually resides in Manchester. #DevoManc won’t have escaped your notice. Manchester, in particular the local areas such as Salford, has been at the forefront of living better with dementia, not least due to the massive successful work of Hazel Blears. Blears’ work has been second to none as a parliamentarian in promoting dementia in English policy.

But here Mittler makes a fundamental point which should concern us all. That instruments such as the United Nations Convention on the Rights of People with Disabilities have been known about for some time. In our jurisdiction, the governing party is about to replace the Human Rights Act with another framework, a Bill of Rights. Currently it is unclear whether the UK will remain signatories to the European Convention on Human Rights, but most legal scholars expect us to be not least because of the legal mess in devolution agreements if we left. We are, notwithstanding, signed up to the United Nations Declaration on Human Rights.

The ‘rub’ comes into the enforceability of these rights, and for people at large to take these rights seriously. I personally notice a massive sea-change on the ground, in terms of the embedding of a ‘rights based consciousness’. Clicking on the link below will take you to Prof Peter Mittler’s question at the end of Dr Dennis Gillings’ progress report for the Alzheimer’s Society annual conference (#Dementia2015). Jeremy Hughes, CEO of the Alzheimer’s Society, brings up the correct point about the “rulebook”. Kate Swaffer, as Co-Chair of Dementia Alliance International, a group consisting of and campaigning on behalf of people living with dementia, is praised in Mittler’s comment.

Link to Audioboom recording

1 Response

  1. Peter Mittler July 25, 2015 / 8:31 pm

    Here’s a summary of what I said, sent to the main speakers at the conference:

    Professor Peter Mittler
    This note summarises information about the potential of the UN Convention on the Rights of Persons with Disabilities to achieve change for the UK dementia community.

    Although the global dementia community is fully covered by the definition of disability in Article 1 of the UN Convention on the Rights of Persons with Disabilities (CRPD), it has shown little interest in using its right to access it until very recently.

    New developments have been stimulated by the WHO First Ministerial Conference on Dementia held in Geneva in March 2015. The conference unanimously adopted a strong human rights-based resolution proposed by Marc Wortmann, CEO of Alzheimer’s Disease International (ADI) on behalf of 34 national member societies from all continents, including the Alzheimer’s Society and Alzheimer Research UK.

    Although this resolution did not include a reference to the Convention, access to the CRPD was one of the specific demands made by Kate Swaffer, Co-founder of Dementia Alliance International (DAI) at the opening session. ADI and DAI work collaboratively but independently. The essence of this resolution was then incorporated into the Call for Action by WHO Director Dr Margaret Chan at the Concluding Session of the Conference. WHO has also taken several other initiatives to incorporate CRPD Principles and Articles into its 2014-2021 Global Action Plan.

    ADI is now in touch with relevant organisations and individuals at UN level to discuss ways in which the dementia community can benefit from the Convention and be fully represented in UN initiatives in the wider field of disability. Its CEO already has a strong relationship with WHO as co-author of Dementia: A Public Health Challenge (ADI and WHO 2012), published shortly after its World Report on Disability (WHO 2011).

    The UK Mental Health Foundation is about to publish the first authoritative and evidence-based report on the right of people with dementia to access the CRPD and to use it to inform policy and practice in their own communities (Rights, dementia and the social model of disability: a new direction for policy and practice? (MHF in press). Furthermore, elaboration of the concept of well-being in the 2014 Care Act is consistent with the General Principles and most of the Articles of the CRPD.

    The Alzheimer’s Society, Mental Health Foundation and the Joseph Rowntree Foundation are already involved in human-rights based projects which focus on the individual needs and rights of people living with dementia in their own homes or in residential accommodation. Alzheimer Scotland promotes the CRPD on its website and there is also a high level of CRPD awareness in Northern Ireland, as well as in the Republic of Ireland and some other European countries. The Convention will be discussed during the Alzheimer-Europe conference in September 2015 as well as at the ADI International Conference in April 2016.

    In ratifying the CRPD, the UK government has made a formal commitment in international law to implement its Principles and Articles and to submit regular reports on its progress to the UN Human Rights Bodies represented by the UN CRPD Committee. These reports reflect a form of accountability to its own citizens as well as to the international community. The UK’s first report will be considered by the Committee in 2016.

    Civil Society organisations such as Disabled Persons’ Organisations (DPOs) have the right to submit parallel reports which are considered by the Committee at the same time as government reports. It is clear from the Committee’s Concluding Observations on 24 countries that these parallel reports are reflected in the recommendations made to Member States. DPOs are then well placed to use these recommendations to enter into dialogue with their own governments and civil society organisations.

    The UK Equalities and Human Rights Commissions are collecting evidence for submissions as National Human Rights Institutions. UK DPOs have not so far formed a coalition to make a joint representation to the UN – unlike many other European countries but it is likely that some will submit individual reports.

    1 Statutory and voluntary agencies with a commitment to people affected by dementia should use the policy and practice framework provided by the CRPD – for example in the new guidance on dementia to be developed by the National Institute for Health and Care Excellence (NICE).

    2 Voluntary agencies should consider using their right to submit parallel reports to the UN bodies monitoring the implementation of the CRPD in the UK, bearing in mind that these reports are more effective if they are prepared by a coalition of NGOs rather than by single organisations.

    July 2015

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