After the initial flurry of excitement about the SEN and disability reforms, I wanted to get back to the question of what changes to the law we should be seeking through #LBBill – the idea for a Private Members Bill to help make disabled people’s right to live in the community a reality. I have already blogged about the first batch of ideas.
There has been some great debate already about what we should and should not be asking for. The question of independent advocacy has come up several times, but it seems this may be covered by the new Care Act – I’ll blog about this another time. There is also an obvious need to see if the Mental Health Act 1983 can be amended to reduce the number of people with autism and / or learning disabilities who are ‘sectioned’ into institutions. This is a challenging task and one I’ll also write about later.
For now though it seems to me that the best ideas for further content for #LBBill are some amendments to the Mental Capacity Act (‘MCA’) 2005. The MCA 2005 seeks to strike the balance between empowerment and protection for people who may lack capacity to take certain decisions. It has been the subject of significant criticism for getting this balance wrong in some key respects, much of which is brilliantly set out by Lucy Series on her The Small Places blog.
We cannot hope to completely rewrite legislation as complex as the MCA 2005 through a Private Members Bill. I do think though that we could realistically expect to ‘tweak’ the MCA to make it work better for disabled people and families. The two specific ideas so far which I think have real merit are amendments to section 4 MCA to require that:
- Disabled person’s wishes and feelings must be a primary consideration in any decision taken as to what is in their ‘best interests’. At the moment the wishes and feelings of ‘P’ (the person said to lack capacity) are simply one factor to be considered by the decision makers (see section 4(6)(a)). I think they could and should have greater importance than this. If P’s wishes and feelings were ‘a primary consideration’ this would mean that they had to be considered first and could only be overriden if there were very strong factors pointing another way – see the key judgment of the Supreme Court in ZH (Tanzania) which explains what this phrase means in the context of children’s best interests (in particular Lady Hale at para 33). It seems to me that this simple amendment would instantly reduce the number of disabled people who are placed in institutions when this isn’t what they want.
- Family members of disabled people have a right to be consulted about all decisions taken in the person’s best interests, unless to do so can be shown itself not to be in the person’s best interests – in legal terms a ‘rebuttable presumption’ in favour of family consultation. At the moment, section 4(7) states that decision makers must take into account the views of and, if it is ‘practicable and appropriate’ consult the family members of P and others engaged in their care and / or concerned about their welfare. I don’t think this requirement is tough enough; it seems to me that the ‘wriggle room’ this gives to public bodies. is very unhelpful when we know that too often the MCA is used improperly to exclude families from decisions made about the care of their loved ones.
Neither of these amendments would fundamentally change the MCA – but I think each of them could really help as part of a package of reforms designed to make it far harder to place disabled people away from their communities
I would be very grateful for thoughts on these ideas and any other ways in which the MCA could be improved from the perspective of disabled people and families. As ever, none of these ideas is set in stone – we do not even have a first draft of #LBBill yet so there is plenty of time to discuss and debate these crucial issues.
PS – if you haven’t seen it yet, check out the absolutely beautiful quilt that has been made in LB’s memory.