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.

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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.

Day 6: Twelve Days of Christmas #LBBill

Day 6 of the #LBBill Twelve Days of Christmas and it’s time for Clause 4.

Clause 4 would make sure that any time the state takes responsibility for where a disabled person is to live, the arrangements made would have to be the ‘most appropriate’ for them. The starting point should be what the disabled person themselves wants. Other factors to take into account include continued community ties, links to family and friends and opportunities to have positive activities like employment or education. This clause also discusses the issue of costs. We consider that we have three options:

Option 1) Say cost is irrelevant in deciding what is most appropriate.

Option 2) Say nothing about cost.

Option 3) Say the costs of different potential living arrangements are a ‘relevant consideration’.

Option 1 doesn’t seem realistic. Option 2 seems unhelpful and vague. We think Option 3 is best because it means that cost is relevant, but not necessarily the deciding factor.

For example, if there are two living arrangements to choose between, the first is what the disabled person wants and allows strong links to friends and family, but the second is a little cheaper; the first would be ‘most appropriate’ and must be arranged.

However, if the first option is only a little better and costs twice as much, then the second will probably be ‘most appropriate’. If agreement can’t be reached, the disabled person or family would need to request a judicial review.

We have an audio introduction to the clause with easy-read images available here:

We are keen to hear whether people think that there is a better way with dealing with costs. Would what we propose work?

What factors should be taken into account when deciding what is most appropriate?

We think there needs to be a clear right to genuinely independent advocacy in this decision making process. We do not think the new right to advocacy under the Care Act 2014 is enough. Do you agree or disagree?

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

Day 5: Twelve Days of Christmas #LBBill

Day 5 of the #LBBill Twelve Days of Christmas and we’ve taken a step back from the detail to ask what it all means. Mark Neary has written a blog post offering his perspective and the astute amongst you will have noticed that LB’s pic has been replaced by Steven. It’s really important to those of us involved with the #LBBill that we situate this development in the experiences of those who it should help.

We’d like to feature more people, like Steven, whose lives could be improved if the #LBBill and the suggestions within it became law. If you are someone, or care for someone, who you think the #LBBill could help, and you would like their face to join the campaign, please email us a photo with a sentence or two of why it would make a difference and we’ll feature them later on in the 12 Days and throughout the #LBBill campaign. (Please note we will use your pics in publicity so please only use real names if you are happy to do so). Now over to Mark:

Steven

For me, there is a really simple idea at the heart of the #LBBill. If we were discussing this in relation to anyone else in the population besides physically or learning disabled people, we would be dismissed as ludicrous. The core idea is that every physically and learning disabled person has the right to choose where they live. They may choose to live on their own; on their own with support, with their families, or in a residential setting with other people. And once that choice has been exercised, other, just as important choices open up. Once someone has made a choice about the four walls they live in, then they can begin to choose how they live within those four walls.

The simplicity of the #LBBill was on my mind a lot on Christmas day afternoon. People who know mine and Steven’s story will know that he was illegally kept away from his home in an assessment and treatment unit for the most of 2010. The local authority planned to move him to Wales but on Christmas Eve 2010, through the intervention of the Court of Protection, we were able to spring him from his detainment and he came home at the very last minute to enjoy Christmas in his family home.

Watching Steven go about his business on Christmas morning, made me reflect on how different it would have been if he had been detained in the unit over Christmas. Here are a few examples from Christmas morning:

  • Steven awoke to have fresh fruit salad for breakfast, which he chooses to have every weekday morning. This was not possible at the Unit where the choice was either toast or cereal.
  • After opening his presents, he chose to watch the most eagerly anticipated of them – the new Mr Bean DVD. This would have been impossible in the Unit as the DVD player had broken a few months earlier and nobody had repaired or replaced it.
  • Next Steven listened to his new Abba triple set CD. He might have been allowed to do this in the Unit but he would have been sent to his room with his ghetto blaster, so as not to disturb the other residents and staff.
  • I brought Steven a Basil Fawlty mouse mat and naturally, he wanted to try it out, so up to the bedroom to do some YouTube surfing. This would have been impossible in the Unit because there was no PC or Internet for the residents to use – the only PCs were in the office and only the staff were allowed to use them.
  • Before lunch, Steven wanted his annual treat – Christmas Top of The Pops. We have every episode recorded since 1993! Whether he got to watch it in the Unit was a lottery – every bit of TV viewing had to be negotiated with all the other residents.
  • And finally, Christmas lunch. That probably would have ended up on the floor as the Unit weren’t particularly tolerant of Steven’s need to have all the food not touching on the plate. It’s quite a design feat with a full Christmas lunch but with a bit of patience it can be done.

That is just one day of the compromises and loses someone living in an assessment and treatment unit has to manage. Now multiply that by 364. Year after year. What a bleak existence.

Please get behind the #LBBill. It’s for life – not just for Christmas.

Day 4: Twelve Days of Christmas #LBBill

Day 4 of the #LBBill Twelve Days of Christmas and today we focus on Clause 3. We have an audio introduction to the clause with easy-read images here:

Clause 3 is about making sure that disabled people can access the care and support they need to live in their own homes, on their own, or with friends or family as they choose. The clause would impose a ‘sufficiency duty’ on Local Authorities and NHS bodies to make sure that there is the right amount of community support services so no-one is forced into residential care to have their needs met.

The purpose of the duty is to prevent isolation and segregation from the community. This is why we will need to define ‘residential’ care very carefully in the second draft of the Bill, because a disabled person may be more isolated and segregated in a ‘supported living’ setting than in a small community based residential home. What we think matters is not the label given to the place a person lives but what their life is actually like there. Do you agree?

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