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.