News on the #LBBill second draft

It is now four long months since the 12 Days of the #LBBill Christmas; we know we’ve been silent in that time here (there has been some discussion on twitter and facebook), but we thought blog readers were long overdue an update. Perhaps the most significant development has been the publication of the government consultation Green Paper: No voice unheard, no right ignored. Norman Lamb paid tribute to the #JusticeforLB team when he launched it (that includes you if you’re reading this and supporting the LBBill) and you can see our response here. So, what has happened for the LBBill in 2015 so far?

1) Feedback

We have spent time pouring over the feedback that you’ve all provided so far. You can see most of the feedback here, and there has been some sent by email. This has been absolutely critical to the process, we are insistent that the LBBill will represent what you tell us you would like, as far as we can bring all of that together. This is a crowdsourced bill, so your input really does matter.

LBBill Feedback Meeting

2) Meeting with interested people

Last month we held a meeting in London (with some joining by phone remotely) to bring together a group of interested people who had given us feedback. This group was made up of representatives from Disabled People’s Organisations, User-Led Organisations, Charities, Providers, Parents and Carers. We included as many people as the room would fit and we tried to make the group as diverse as possible. The meeting included people who had organised events to gather feedback on the first draft of the Bill, and we discussed that feedback to inform a second draft.

3) Discussion on- and offline

One of the joys of being involved with the LBBill is the enthusiasm for it, on and offline. So far this year people have spoken about the Bill at a number of events, conferences, discussions and workshops. These occasions have ranged from a self-advocate conference in Blackpool with karaoke, to online discussions in the early hours of the morning, to an All Party Parliamentary Group meeting in the House of Commons; every opportunity to discuss the Bill is important, we need more people to consider what a good, messy life for disabled people looks like.

LBBill Blackpool Conference

4) Draft 2

Following these meetings and events, the discussion and feedback was considered further and a Draft 2 was written. This draft should be available to share at the end of this month (April). We were ambitious and had initially hoped we could turn it around by the end of March but we are determined not to share a draft unless it is fully accessible, so we are taking a little longer to get the easy-read version right. Keep your eyes peeled but we should share something later this month.

5) LBBill Film

We are truly delighted to share with you this film which has been produced since Christmas. Filmed, edited and produced voluntarily by the awesome Luke Tchalenko, using footage from the November meeting, we hope that you find it useful and we’d like to see it shared far and wide:

So, even though we have been quiet on the blog, we hope you agree we’ve been busy and that we are making progress. The next stage in the process is for us to share Draft 2 (by the end of this month) and then to gather more feedback from you all.

There are also a number of occasions coming up where you can join a discussion about the LBBill. These include the Inclusion North event on National Politics and the LBBill which is taking place in Leeds on 28 April (please email Marie if you wish to attend) and the NWTDT | Pathways Associates CIC Green Paper consultation event in Preston on 12 May (please email Danielle if you wish to attend).

A new parliament will be formed in early May and we will then look to see what we can arrange around lobbying MPs, in the meantime if parliamentary candidates come knocking at your door, be sure to ask them what their policy is on supporting disabled people, and please do tell them about the LBBill.

Day 12: Twelve Days of Christmas #LBBill

As we come to the end of the #LBBill Twelve Days of Christmas, we wanted to do three things.

Firstly, we wanted to thank you all for your ongoing support and collaboration. It has always been our intention to crowdsource this campaign, to use the skills, knowledge, views and opinions of those who live and breathe this reality on a daily basis. No-one is claiming it’s the easiest approach, and I think its fair to say at times we have questioned why we do this to ourselves! However, it’s authentic and true and amazingly rewarding, not to mention useful, to see everyone contribute, discuss, debate and disagree with us. So, thank you, and please keep doing it into 2015.

We don’t have the resource to reply to all your emails and messages of support, but they are all read and all appreciated so thank you for those too. We can guarantee you that we are reading everything, and all feedback will be considered in early February.

If you’re just coming back to work today and you’ve twelve emails from us, please pace yourselves, you have until the end of the month, but we do really value your opinion and would love to hear from you.

Secondly, we wanted to reiterate the opportunities you have to hear about and discuss the #LBBill face to face in January. There are four and they were all listed on Day 14 of the #JusticeforLB Advent Calendar, so swing over there to find out more (they’re in London x2, Manchester and Leeds).

Thirdly, last but not least, we wanted to share some more responses that we received from families explaining why the #LBBill is important to them:

We are very grateful to those families who shared their thinking. For the purposes of the slideshare we had to heavily edit and just grab a sentence or two, but you can read their complete unabridged reasons here:

Why do we need the #LBBill v2

 

If you would like to add your voice to the campaign and share why it is important to you, then feel free to email us a photo and reason here. We will feature more people throughout the 2015 campaign.

Thank you all again and hopefully next Christmas we’ll be well on our way to making the world a better, happier and safer place.

Day 11: Twelve Days of Christmas #LBBill

Day 11 of the #LBBill Twelve Days of Christmas and we’re up to the final clause, Clause 8, a simple clause which would have a profound impact.

If the #LBBill becomes law, Clause 8 would remove people with learning disabilities and autism spectrum conditions from the scope of the Mental Health Act 1983.

This means that these people could only be ‘sectioned’ or otherwise treated under the Act if they also had a diagnosis of a recognised mental illness.

If a person with a learning disability or autism needed to be detained, then this would have to be done under the Mental Capacity Act. Otherwise, like the rest of the population, the only basis for detention would be the criminal law if someone committed a crime.

We know that the Mental Health Act creates some rights for people who fall under its scope and their families, but these rights are not enough to justify detention and compulsory treatment. We think it is wrong that disabled people should be treated under mental health legislation if they don’t have a mental illness.

This is explained further in today’s audio introduction film with easy-read images:

What do you think?

Do you have experience of the Mental Health Act being used in relation to people with learning disabilities or autism spectrum conditions who do not have a mental illness? Would this clause have helped?

Let us know what you think, on the feedback pages of the blog, on facebook, twitter, or by email. Thank you.

Day 10: Twelve Days of Christmas #LBBill

Day 10 of the #LBBill Twelve Days of Christmas and we’re onto Clause 7.

The focus of Clause 7 is making the Mental Capacity Act 2005 work better as a safeguard for disabled people and families. It is supposed to empower disabled people and support family involvement, but we are concerned the opposite is happening and it is being used to enforce the wishes of the public authority and exclude families from decisions.

This, and our proposed changes are explained further in today’s audio introduction film with easy-read images

We propose three changes in Clause 7:

  1. Make it impossible for a person to be found to lack capacity to make any decision, unless there has been consultation with the disabled person and friends and family members about their ability to take the decision for themselves.This could only be overridden where it was necessary and in the person’s best interests for capacity to be decided without consultation. This would typically be restricted to emergency situations, not choices about where they live.

  2. Make disabled people’s own wishes and feelings ‘a primary consideration’ in every decision taken about them where they lack capacity to decide for themselves. This would require their full range of human rights to be respected.

  3. Require consultation with family members and friends in all best interests decisions, as long as it is possible and in the disabled person’s best interests to do so. We think that the current requirement for family and friend consultation is much too vague and easy for state bodies to ignore.

We think these changes would make the Mental Capacity Act a much stronger and safer piece of legislation. Do you agree?

Are there other changes to the Act you would like to see?

Let us know what you think, on the feedback pages of the blog, on facebook, twitter, or

Day 9: Twelve Days of Christmas #LBBill

Day 9 of the #LBBill Twelve Days of Christmas and we’re back to the detail of the Bill’s first draft with Clause 6.

Clause 6 makes absolutely sure that disabled people are not simply left in living arrangements made by the state without anyone checking up on how the arrangements are working.

Arrangements must be working well for the disabled person and recent coverage has revealed instances of abuse and neglect, so Clause 6 attempts to protect against that.

This would be done by requiring the state body to report to the Secretary of State each year about what is happening in cases where arrangements have been made which take disabled people away from their homes.

This is explained further in today’s audio introduction film with easy-read images:

The Secretary of State would have to report to Parliament on what progress is being made to help disabled people stay in their communities, in particular how state bodies are being assisted to comply with the duty in Clause 3 of the Bill to increase the availability of community support.

It is also important that Clause 4(5) of the Bill requires a review of whether the living arrangements remain the ‘most appropriate’ available for the disabled person at least every 12 months. This supports Clause 6 by making sure that the state body has the necessary information to make this report.

Do you think Clause 6 will be effective? Is there anything else we could do to make sure people are not ‘out of sight and out of mind’?

We have transferred the email comments onto the feedback pages yesterday and have been blown away with the attention to detail and feedback on each clause. Please keep it up, we’ve only three clauses left now and really appreciate the input. Let us know what you think, on the feedback pages of the blog, on facebook, twitter, or by email. Thank you.

Day 8: Twelve Days of Christmas #LBBill

Day 8 of the #LBBill Twelve Days of Christmas and it’s the first day of 2015, so we thought we’d focus on why the Bill is needed.

A couple of days ago we asked you to share with us your thinking. Today we have a slideshare from four families to explain why the #LBBill is important to them

We are very grateful to those families who shared their thinking. For the purposes of the slideshare we had to heavily edit and just grab a sentence or two, but you can read their complete unabridged reasons here:Screenshot 2015-01-01 13.13.18

If you would like to add your voice to the campaign and share why it is important to you, then feel free to email us a photo and reason here. We will feature more people at the end of the Twelve Days of Christmas, and throughout the 2015 campaign.

We hope that 2015 proves to be a very successful year for all of you, and especially for the #LBBill. Thanks again for all the support.

 

Day 7: Twelve Days of Christmas #LBBill

Day 7 of the #LBBill Twelve Days of Christmas sees us moving on to Clause 5.

Clause 5 is Mark Neary’s original idea, that state bodies should lose the right to make arrangements for where disabled people live away from their existing home without the new arrangements being approved. Approval would have to be obtained in all cases other than arrangements made under the Mental Health Act 1983 when a person is ‘sectioned’

The approval would come from a person with parental responsibility for a child under 16, from a young person or adult aged over 16 if they had the mental capacity to decide where they live for themselves, or from the Court of Protection for a young person or adult who lacked mental capacity to decide where they live. (The cut-off for parental approval is 16 because this is the age from which most of the provisions of the Mental Capacity Act 2005 apply, including the presumption of capacity and the supervision of the Court of Protection for those who can’t make their own decisions).

To make approval meaningful, the disabled person and family members would have to be given specified information about why proposed arrangements are the ‘most appropriate’ available and what other options have been considered. This will help disabled people and family members challenge proposed arrangements which do not meet the tests set out in Clause 4.

There’s an audio introduction to Clause 5 with easy-read images here:

At the moment we do not actually say in Clause 5 that if the necessary approval is not given then the proposed living arrangements cannot be made and the state body will need to support the disabled person in their own home.

We have had some feedback that we should spell this out. Do you agree?

Are there any other changes you would make to Clause 5?

Let us know what you think, on the feedback pages of the blog, on facebook, twitter, or by email. Thank you.