Some Thoughts on Lamb and Veto

This post, which I hope will be the first of a series, aims to provide some brief thinking on Norman Lamb’s consultation ‘No voice unheard, no right ignored‘.

My knee jerk reaction is that very little will change through this consultation. The best example: living close to home and in settings of one’s choice. As the consulation acknowledges, this is something that the LB Bill has flagged as a major issue, and quite rightly so.

This is the lengthy quotation from page 19 of the consultation

‘We have listened closely to stakeholders, including the Justice for LB and LB Bill campaign, about strengthening people’s rights, so we want to hear your views on whether it should be more explicit, that in carrying out their functions on:
• either, in the case of LAs, decisions about individual living arrangements;
• or, in the case of NHS commissioners, arranging the provision of assessment and treatment services in hospital inpatient settings (for example lasting over 1 month);
that NHS commissioners and LAs should have regard for:
• the need to ensure people remain in or close to the community that matters to them;
• the need to maintain links with family and friends;
• the need to maintain opportunities to participate in work, education, training or recreation;and
• the principle of delivering support or treatment in the least restrictive setting possible, consistent with the wishes and choices of the individual;
The default attitude and cultural approach should be that the statutory bodies have to make efforts to do what is in line with people’s wishes and recognise the importance of people being in their own home or community or close to or with their family, if that is their choice, rather than people, supported by their families, having to fight to justify why this matters.’

Seeking to consult on such restrictive choices is simply not enough. The consultation still accepts as a starting point that NHS commissioners and LAs ‘should have regard for’ absolutely essential things, such as family ties. This does not guarantee effective protection of family ties.

From a mainstream human rights perspective, placing someone in care (like an ATU) far away from home breaks (or risks to break) family ties. This is an interference with the right to respect for private and family life that both the person with disability has, but also her family, under Art. 8 ECHR. If the interference is disproportionate, then the interference becomes an unjustified infringement. We know all this from the ECtHR’s case law on children being removed to foster care, such as Olsson v Sweden. In terms of disability rights, this reasoning is strengthened by reading Art. 8 ECHR in light of Art. 19 CRPD on independent living.

If this the legal position, then reality suggests that it is very difficult to get this right respected, as evidenced by Mark Neary‘s experience.

If we want to be serious about strengthening the rights of persons with disability to live in the community and maintain family ties, then persons with disability should at least have a veto right againt arrangements about where to live. For example, the LA introduces a care plan that involves relocation in an ATU, far from home, and the person with disability does not want this. The veto should be respected by the LA and then the burden would fall on the LA to go to court and get the veto reversed. With legal costs being what they are, the LA might prefer to propose a care plan that is mutually acceptable.

Certainly, such a veto right approach is no magic bullet. But it does get you somewhere.

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Sir Terry Pratchett, Death, and Social Care

At the time of writing this post, the news have spread about three young men with disability who have died in social care settings: Connor Sparrowhawk, Thomas Rawnsley, and Nico Reed.

There is also the excellent initiative of the LB Bill and the recent launch of the Department of Health’s ‘no voice unheard, no right ignored’ consultation.

All this is familiar to anyone interested in issues of social care. Why mention them? With the news of the death of Sir Terry Pratchett, one quote from his work has struck me: It’s not worth doing something unless someone, somewhere, would much rather you weren’t doing it’.

All these initiatives are troubling to the status quo.

There is inertia at the heart of the system of social care. The passing of the Human Rights Act did little to change the legal position of persons with intellectual disability: persons with intellectual disability, when deemed to lack capacity, cannot exercise their human rights. The passing of the Mental Capacity Act was a minimalist intervention: it codified the legal position of the common law on best interests and the choice was made not to link the Mental Capacity Act with the Human Rights Act.

However, the issue is not just legal: what is adult social care about, in everyday practice? what are social workers trying to achieve? what are ATUs supposed to be doing? It’s all very well to talk about overarching aims, e.g. inclusion, independent living etc. I cannot see any tangible effort being made towards empowerment of persons with disability.

Radical change is required. Upheaval and mayhem is the way to go. The best interests test must be abandonded, in favour of a human rights test. The Convention on the Rights of Persons with Disabilities must be incorporated in an Act of Parliament and become part of English law. That will be the beginning of true change. And yes, it will cost the earth. Unless this happens and until this happens, disability rights will resemble new wine in old skins.

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