Week 10: Why the #LBBill is more than the Care Act #107days

Today’s guest blog post is from Steve Broach, a key protagonist in the #LBBill. Here he reflects on why we need the Bill.

It is such a thrill to see the map of the UK turning green as Justice for LB supporters contact their MPs to ask them to support #LBBill, the proposed new law to reinforce disabled people’s right to live in the community with choices equal to others.

Getting the Bill to this stage has involved the collective wisdom of a huge number of passionate and committed people. We have had input on the content of the Bill from disabled people’s organisations, individual disabled people, families, carers, friends and allies. The text of the second draft of the Bill is much improved from its first draft, with a stronger rights focus including implementation of the right to independent living in Article 19 of the UN Disability Convention.

There are some ideas in the bill that can be traced back to one individual, like Mark Neary’s original idea that all placements made by the state should be subject to approval, which is reflected in Clause 5. Others have emerged from the free-flowing discussion, debate and dialogue that has characterised the process so far.

We had hoped to have more time to debate Draft 2, it’s my fault we don’t, because I’d thought the ballot for private members’ bills was in July, whereas in fact it is on 4 June. This is the kind of mistake that would get a professional campaigner fired, but as we are all volunteers and no-one’s in charge I’ll probably get away with it. Apologies nonetheless.

So the key action now is to get as many MPs as possible informed about and supportive of the Bill, so that when we know the outcome of the ballot we have the best chance of getting a high-ranking MP to sponsor the Bill (see the #LBBill process post for a more detailed explanation of this).

One of the question supporters are likely to be asked by MPs and their staff is what difference would #LBBill make, and in particular, wasn’t this all dealt with last year in the Care Act 2014? The short answer to these questions is, a huge difference, and no. A more compelling answer to the difference question has been given by Sara Ryan in an amazing post as part of this Week 10 of #107days.

So I’ll take the lawyer’s question, which is why the Care Act isn’t enough.

I’ll be the first to agree that the Care Act is a step forward. The well-being duty in Section 1 has the potential to transform the approach to how social care is provided to disabled people. However, the Care Act is an act about social care, it says nothing about the NHS services that many disabled people need. It also falls far short of implementing a right to independent living.

In particular the Care Act doesn’t do any of these things which #LBBill would do:

1. Require the state to ensure that all disabled people can live in their community, with choices equal to others and the support necessary to ensure their full inclusion and participation in the community (Clause 1)
2. Expressly reject any idea of capping expenditure on care at home at the level of the cost of residential care (Clause 2). This is likely already to be unlawful but it is known that this practice goes on and it should be outlawed.
3. Require the state to secure in every area a sufficient supply of community support, and to make sure disabled people are employed to plan and commission these services (Clause 3)
4. Ensure that the most appropriate living arrangement is made for every disabled person who needs state help, which will generally be the arrangement they choose (Clause 4)
5. Require appropriate approval of all living arrangements made by the state (Clause 5)
6. Require reporting on all living arrangements made by the state, to create the disinfecting effect of sunlight which is so badly lacking at present (Clause 6)
7. Make the Mental Capacity Act 2005 more respectful of the rights of disabled people and their carers, as a prelude to proper systemic reform of the MCA (Clause 7)
8. Take people with learning disabilities and autism out of the scope of the civil sections of the Mental Health Act 1983 (Clause 8)
9. Ensure the provision of appropriate community mental health services to people with autism and learning disabilities (Clause 9)
10. Abolish the use of secret ‘panels’ and require disabled people and those around them to be properly involved in all decisions made about them (Clause 10)

So, none of #LBBill duplicates anything that is in the Care Act, or other existing legislation. It’s all new and it’s all what the community of #JusticeforLB supporters has said is needed if the law is to properly reflect and respect disabled people’s human rights.

With the government expected to announce today its intention to repeal the Human Rights Act and replace it with a British Bill of Rights, let’s get our politicians thinking about the rights disabled people and their families have said they want and need to be enshrined in law. Please keep pushing so that every MP knows about #LBBill and knows how much it matters in advance of the ballot.

With thanks to Caron Stuart-Cole of Graphics on the GO for this brilliant image.

Day 103: Person centred practice, nursing students, and a legal webchat #107days

Day 103 is our first three-way share of a day. It is shared by Max of the UK Learning Community for Person Centred Practices, Bridget and Sarah from School of Nursing Sciences at UEA, and Steve Broach from Doughty Street Chambers.

When asked why they were supporting #JusticeforLB and #107days the UK Learning Community for Person Centred Practices had this to say:

We wanted to support the #JusticeforLB campaign because it highlighted how far we still have to go in the UK with promoting person centred planning, thinking and approaches. Even though these approaches were right at the heart of the ‘Valuing People’ strategy for people with learning disabilities since 2001, staff at the Assessment and Treatment Unit where Connor Sparrowhawk was confined in the 107 days running up to his avoidable death did not understand what Connor’s family were trying to achieve by holding a Person Centred Review at the ATU, and did not respect this work, saying it “Was not the Care Programme Approach”. It seems clear from the Verita’s report, and from other accounts, that if the ATU had listened properly to Connors’ family when they told them what was important to Connor now and in the future, and the things that would help to keep him healthy and safe (such as a proper approach to his epilepsy), his death could have been avoided.

This is what they decided to do:

I contacted the campaign on behalf of the UK Learning Community for Person Centred Practices. Our national gathering was coming up on April 30 2014, and I wanted to ensure that everybody there heard about Connor’s story. At the closing of the gathering, Gail Hanrahan, a close friend of Connor’s family spoke to everyone so passionately and movingly about Connor and his life. We shared a #JusticeforLB postcard with every participant (about 50 people) and asked them to make 2 pledges:

1. Firstly to tell us how they would use their postcard to share Connor’s story, and
2. Secondly what they would do in their work to ensure that within their sphere of influence, people and their families were listened to.

We’ve followed up those pledges asking people to let us know what they’ve done. Here are some of the responses we’ve received.

Cath Barton said ‘I always read Sara’s blogs and share and have made a pledge for George Julian’s #hairhack fundraiser which is raising money for Justice for LB and Rowcroft Hospice’.

‘My action is to always support people and their families to have a voice and be listened to. I hope my role as Community Circles Connector will help people develop relationships and networks which will support them to be heard and valued’.

Penny Jackson said ‘I am due to deliver Person Centred Thinking training in July to our Independent Futures staff and will be including LB’s story within this’

Max Neill took the big #JusticeforLB poster to share with the Preston Learning Disability Forum. They displayed it at events during Learning Disability Week in Preston.

Every story about how these person centred skills have worked and made a difference increases the impetus for change. If we can succeed in turning these person centred behaviours into everyday habits, at scale across whole services and sectors, then we can create fundamental lasting change in the culture, in the way we include and involve families and in the way we regard people.

Max and TLCPCP have written a fuller write up of their context, their gathering and the actions that have followed. You can read it in full here.

The second group sharing Day 103 are staff with interests in safeguarding and learning disability from the School of Nursing Sciences, UEA, Norwich. When Bridget Penhale and Sarah Richardson were asked why they were supporting the campaign they said:

We didn’t know LB personally but followed his mother’s blog from before he was admitted to Slade House and were very upset at the news of his untimely death. We have followed and supported the development of the campaigns since.

They were keen to ensure that a large number of staff and students at their university heard LB’s story. This is what they have planned:

On Day 103, sessions in the Essential Nursing Practice module for first year undergraduate nursing students are being dedicated to LB. The module covers the role of the Community Learning Disability Nurse and one of the specific topics today is about epilepsy; this is a core condition that our students learn about from the beginning of their programme (but also focus on throughout their course).

The Enquiry Based Learning Package is dedicated to Connor and students taking the module will be introduced to him at the beginning of the day. The Lecture on Introduction to Epilepsy will also be dedicated to Connor.

Information about Connor and the campaign will also be available for everyone working in or visiting our building on that day (through a slide on our plasma screen in the reception area of the building). We will continue to raise awareness about Connor, his life and untimely death throughout the coming year(s) – for as long as it takes.

The final person sharing today is Steve Broach, a barrister at Doughty Street Chambers. Described on twitter yesterday as a miracle, a ‘competent barrister able to put suffering people at ease’, Steve has very generously offered to run a legal webchat, an hour long Q&A session tonight at 7.30pm.

Steve will be holding a free web Q&A on the law in relation to education, health and care services for disabled young people in England. Steve will look at both the current law and the changes coming soon under the Children and Families Act 2014 and the Care Act 2014. He will also cover what the Human Rights Act 1998 should mean for the standard and quality of care disabled young people receive. Steve can only answer questions about the law in England, as the other UK nations have different legal frameworks, although some of the general points he makes will be relevant across the UK.

We are very grateful to Steve for his offer, and know that many of you will wish to make use of this opportunity. To participate you can send your questions in advance using the hashtag #JusticeforLBLaw, or add them on our facebook page, or as a comment to the web-chat blog page, and Steve will answer as many as possible tonight.

Please note Steve can only answer general questions about the law and cannot provide advice on individual cases during this session.

Please share the information about the web-chat far and wide, this is a great opportunity, and one that we hope many people will be able to learn from.