#LBBill – justice for all the dudes – thoughts on first draft
We are all delighted to get to this point. We are particularly pleased to have such fantastic Easy Read versions – huge thanks to all at CHANGE for the images and formatting and to Alicia and Dave for the words.
This first draft is very much a start of the discussion about how the law needs to change. However we are clear about the two linked things we think the Bill needs to do:
- Make a legal reality of disabled people’s right to be fully included in their communities.
- Make it harder for the state to force disabled people to go away from their homes where this is against their wishes and / or the wishes of their families.
So what do these first ideas – crowdsourced as George Julian wrote in Community Care – come down to? In short the draft Bill contains one principle and three sets of ideas.
The principle is that in everything the state does it should pay regard to the need for disabled people to be fully included in their community (clause 1). There is an obvious link here to the well-being principle in section 1 of the Care Act 2014 but the #LBBill principle is broader – not least in applying to all health bodies and children’s services as well as adult social care. We are not obsessed with bricks and mortar; what seems to matter to us is not whether something is called a ‘care home’ but whether disabled people get to be a part of ordinary life going on around them in their communities.
The three ideas can be summed up as follows:
- Duties on the state to support disabled people properly at home – and to make sure any living arrangements made are the ‘most appropriate’ available for them. Clause 2 stops the state capping the cost of care at home by reference to the cost of residential care. Clause 3 requires the state to ensure that there is a sufficient level of support available in every local area to meet disabled people’s needs. Clause 4 is the ‘most appropriate’ living arrangement duty – requiring that disabled people’s own wishes and feelings are given top priority when this duty is in play. There is also an important requirement that living arrangements made by the state are reviewed at least annually to make sure they remain the ‘most appropriate’ available.
- Approval and reporting duties in relation to ‘residential’ living arrangements, designed to shine a spotlight on these cases and make sure no-one gets forgotten. We want to define ‘residential’ to include any situation where a person is moved from their own home – including certain types of supported living placements like those Mark Neary has written about as ‘modern warehouses’. Clause 5 requires advance approval for any such placements – whether from the disabled person, their parent or the court as appropriate. Clause 6 requires anonymous reporting of all such placements to the Secretary of State which will then be published in an annual report so the level of ‘residential’ placements can be tracked over time.
- Changes to the Mental Capacity Act 2005 (‘MCA’) and the Mental Health Act 1983 (‘MHA’) to make them work better for disabled people and families. Clause 7 amends the MCA to require proper consultation with disabled people and families before a finding of incapacity is made in relation to any decision, to ensure disabled people’s wishes and feelings and human rights are at the centre of all best interests decisions and to create a presumption of consultation with families in best interests decision making. Clause 8 – simple but controversial – removes people with autism and learning disabilities from the scope of the MHA unless they have a secondary mental illness. Although we appreciate that the MHA offers some safeguards to disabled people and families, this recent case at the European Court of Human Rights seems to illustrate perfectly why these safeguards don’t work for disabled people (see in particular para 8).
So these are the first ideas. In my view taken together they would make a real difference to the lives of disabled people and their families, particularly those at risk of going into an institutional setting. However I’m convinced these first ideas shouldn’t be the last ones, in that there are undoubtedly more and better ideas which Justice for LB supporters can help us with in the coming weeks and months. If anyone has any ideas for ways we can discuss the draft Bill please let us know via the LBBill blog or on Twitter or Facebook (#LBBill).
I can already see ways the Bill can be improved – from the macro level (we need to incorporate more fully the words of Article 19 of the UN Declaration on the Rights of Persons with Disabilities, the right to independent living) to the micro level (Deputies under the MCA should have the right to approve residential living arrangements and this needs to be included in clause 6). I look forward to hearing all the other suggestions and improvements I am sure will come now the first draft is out.
At the same time as telling us how the draft Bill can be improved, please use the links on the LBBill blog to show your support for the Bill, including using Writetothem to email your MP.