Q&A with Bristol Disability Equality Forum

Last week Mike from Bristol Disability Equality Forum got in touch. He had some questions that had been put together by the Forum, family members and their allies about the proposed LB Bill.

We’re delighted that Forum members agreed we can post their questions and our answers here. We think they may be useful to other people to. Please add your questions too and we will try and answer them.

We would like to make some ‘big points’ at the beginning:

  • Justice for LB is not an organisation – it is a campaign which anyone who cares about what happened to Connor can get involved with. We don’t have any money or staff – but we do have a lot of people committed to stopping what happened to Connor and to Steven Neary happening in the future.
  • The idea for #LBBill came about from lots of online discussions about the need to make some legal changes to help disabled people stay at home and not go into institutions. A small team are working on the Bill, including Steve Broach, Mark Neary and Sara and Rich, Connor’s parents. It is no one person’s idea though, it ‘belongs’ to everyone involved in Justice for LB.
  • #LBBill is just one part of what Justice for LB is campaigning on – see the #107days blog for a summary of some of the other wonderful things that have happened and are still happening with the campaign.
  • The basic idea behind #LBBill is that we need to change the law to make it harder for the state to force disabled people to go into institutions and to keep them there, where this isn’t what the disabled person and / or their family want.
  • There is an obvious link between this and the wider movement promoting disabled people’s right to independent living and human rights generally, which we wholeheartedly support. We are not in any way trying to get in the way of a wider Independent Living Bill – we hope #LBBill can help raise the profile of wider disability rights issues but we completely recognise that the right to independent living and the incorporation of the CRPD as a whole is something the disabled people’s movement should lead on and is leading on. This Bill is focussed on the relatively narrow issue of reducing the use of residential care, as set out above.
  • We have a first draft of the Bill which we have been working up based on the ideas so far – but if at all possible we don’t want to publish this until an Easy Read version is ready so everyone gets the same chance to have their say. So some of the answers below are based on this draft of the Bill which we will publish for discussion as soon as possible, hopefully with the Easy Read version.
  • At this stage, we would love to hear more ideas from anyone interested as to what should go in #LBBill – whether broad themes / issues or specific legal changes.

Our responses to your specific questions are below in italics:

The campaign

1 It is excellent that People First and CHANGE are involved. Are there other Disabled people led organisations taking part?

We would like as many disabled people and/or user-led organisations as possible to get involved, and many already are. People First England and Change have supported #LBBill in the initial stages by producing the easy-read summary, because they offered to do so having been involved in #107days. We are an ‘open source’ campaign – we welcome any organisation getting in touch and deciding how they want to work with the campaign and promote / influence #LBBill. For example, People First England chose to take information about Justice for LB to the party conferences and talk about #LBBill to people they met there. They did this themselves – and we would fully support any other disabled people led organisations doing similar things. Please spread the word!

2 Are you approaching other campaigning / lobbying organisations or groups etc?

We aren’t formally approaching anyone. All the information about #LBBill and the wider Justice for LB campaign is freely available online – in relation to the Bill, all the key information is on this blog. We use Twitter (@JusticeforLB) and Facebook to spread the word. We recognise that social media is not accessible to many disabled people and we would love to work with anyone interested in putting on accessible events or making information more accessible. This is how the Easy Read document we have just launched got produced – I put a call out on Twitter, lots of individuals and organisations got responded and People First England and CHANGE ended up taking the lead with funding from the Housing and Support Alliance.

3 Have you been in touch with the UN’s CRPD committee, IDA (International Disability Alliance) or the European Network on Independent Living (ENIL)

In short, no. We would love to speak to anyone who is interested in the ideas behind the Bill.

4 How will you be spreading the word about the LB Bill, aside from using the internet?

We are hoping to secure mainstream media interest and are in preliminary discussions with a small number of journalists. However it is really down to all the individuals and organisations who support the ideas behind the Bill to spread the word through their own groups and networks. We are particularly keen for local press or media coverage and local discussions amongst disabled people and their allies, including family members, parents and carers. Please let us know if you need any additional information from us to get those conversations started.

The LB Bill

5 Does the LB Bill aim to:

a) Bring the UNCRPD fully into UK law?
b) Or, bring specific Articles of UNCRPD into UK law? For example Article 19.
c) Or, introduce or update existing laws to be in-line with the UNCRPD.

At the moment, a combination of b) and c). As said above, the aim of #LBBill is to make it harder for the state to force disabled people into residential care against their wishes. All the current draft clauses go to this aim. One of them seeks to reflect part of Article 19 CRPD, by imposing a duty on public bodies to secure a sufficient supply of community support. Another seeks to make disabled people’s wishes and feelings the starting point in any best interests decision, in line with Article 12 CRPD. If there is anything in the first draft of the Bill which is inconsistent with the CRPD then it should come out – we hope there isn’t. However – key point – the entire content of the Bill is up for discussion. That is the point of having several months between publishing a first draft, which really is just to help debate, and the time when we will need something close to a final draft Bill to lobby MPs and prospective MPs, which is early 2015.

6 Does the LB Bill aim to replace or update the relevant parts of the Mental Capacity Act (MCA), Mental Health Act and the concept of ‘best interests’ to be inline with the UNCRPD.

For example the wishes of a Disabled person and their families should always be considered in local authority and health trust decision making.

Yes – this is one of the current draft clauses. In fact the draft clause goes further – as set out above, it would make the disabled persons’ wishes and feelings the starting point for any best interests decision, as well as requiring family consultation. This reflects the recommendations from the Essex Autonomy Project, which has looked at how to make the MCA CRDP-compliant. In terms of the MHA, the first draft of #LBBill has a clause which would take people with learning disabilities and autism out of the scope of the MHA entirely, unless they have a secondary mental health problem. This will be very controversial and will need a lot of discussion and debate.

7 What would the LB Bill mean in relation to the Autism Act 2009, Children’s & Families Act 2014 and Care Act 2014. Some of us have very serious concerns about parts of these, leaving to much room for ‘interpretation’ by authorities and service providers.

Couldn’t agree more in relation to the problem with regulations and guidance which leave gaps for interpretation. Steve has blogged about the problems with the Autism Act here. The plan for #LBBill would be to put as much as possible into the primary legislation – in fact at the moment the draft Bill doesn’t mention regulations or guidance at all, but we may need this later to deal with points of detail. Again, this is all up for discussion. We also need to look carefully at the Care Act 2014, which of course is not yet in force and doesn’t yet have final regulations or guidance. There are important points of crossover, not least advocacy.

8 Has there been discussion of specific legislation, regulations or guidance around additional funding?

There has been lots of discussion about how the changes we think would help will fit with existing law. In terms of additional funding – our plan is to present a Bill which is ‘resource neutral’ – this stops the government arguing that it shouldn’t be introduced through the Private Members Bill route and takes away a major argument against what we are proposing. Of course the system needs additional funding – but we feel strongly that lots of money is tied up in institutional care which should be released to fund community support.

We hope this is a helpful first response. If you have any follow up questions please do let us know. Please also let us know if you think there are places we can talk about #LBBill, more materials we should produce or anything else we can do to make the idea more

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