Yesterday was a great day. It began with a trip up to Steve Broach’s chambers for a discussion on the #LBBill with Steve, Sara, George and Rich. I knew that I was breaking Steven’s normal Monday routine, so I booked a support worker to do an overnight on Sunday to deal with any fallout in the morning. I managed to get out of the house about 7am and was at Grays Inn at 8.30. For a 10.30 meeting!
We covered an awful lot of ground in the meeting. It started with a “hair standing up on the back of the neck” moment when Sara unveiled the LB quilt. It is incredible. And it kind of set the tone for the meeting. Or at least reminded us how to go about things. The #LBBill isn’t an organisation. Or a concordat. Or a group even. It is a movement, where as many voices as possible can be heard. Whatever it is, I don’t like to take it apart to understand it – I think it’s best to just go along with the ride.
The draft Bill is really shaping up and should be ready to go out for further debate in the next couple of weeks. Steve has already blogged about this but a quick summary of the key points of the draft Bill so far:
1. A statutory requirement that any placement for a disabled person is the most appropriate to meet their needs. This would obviously include having the wishes of the disabled person and their family as the main driver. Other factors would include keeping people in their local area (if that is what they want) and the need to live as part of a local community. There would a specific duty that is enforceable in court. So, if the disabled person or their family felt that the public body was not taking into account all the relevant factors, or had contrived a decision as to what is the most appropriate place, they could bring the matter to court.
2. A statutory requirement that if the public body wanted to place the person in a residential placement, they would have to get approval from the court, if there is disagreement with the disabled person or the family. Hopefully, this would prevent those situations where a person is suddenly uprooted from their home and moved to residential placements and then the family have a long fight to get their family member back home. This requirement turns the current way of doing things on it’s head – now it is down to the public body to make the case for moving someone. This will be the “sign off” duty.
3. A general duty to make provision for community based living and support for people. This would push public bodies to be more transparent about their provision (or what they are willing to provide). Obviously, this follows on from points 1 & 2 and would demand more honesty if the public body was not prepared to provide the necessary conditions for the person to live in “the most appropriate place” for them. Basically, the public body would have to put in writing their reasons for not providing the support for the person in their own home of their choosing.
We also discussed changes to the MCA, primarily to give backing to points 1-3 above. As things stand at the moment, the wishes and feelings of the person are just one factor when professionals decide on someone’s best interests. Amending this so that the disabled person’s wishes and feelings are the “primary” consideration would mean the public body would have to put up a very strong case not to accord with the persons wishes and feelings. Likewise, the MCA currently states that family members must be consulted in best interest decisions “if it is practicable and appropriate”. This small clause often allows public bodies to exclude families completely. We’d like the MCA changed to say that family members have a right to be consulted about all best interests decisions. Tweeking the MCA to cover these two points would give a lot of power back to disabled people and their families.
One other factor that many people have brought up as important to the Bill is to address the way public bodies are increasingly using the Mental Health Act to get their own way and bypass the Mental Capacity Act. We keep hearing stories of people being moved miles away under section and that section is used as a trump card. It would be fabulous if we can cover this in the Bill and Steve is taking more advice from people with more experience in the MHA on how we can incorporate this into the Bill.
The rest of the meeting was taken up with discussions about setting up the #LBBill website – this should be ready in the next couple of week at the same time that the draft Bill is ready. That led us on to thinking about a launch for the BIll and we’ll be asking for more ideas over the next couple of weeks. So, the next big tasks for the LBBillers are to continue debating the content of the Bill, encourage as many people as possible to get behind the Bill, start to lobby your MPs to support the Bill and once the Draft is complete, to start thinking of more proactive ways that everyone can be involved in taking this forward.
It was a full on meeting and I felt knackered by the end of it. On the way to the Tube. Steven’s support worker phoned, apologising for interrupting the meeting but Steven was desperate to talk to me about something. Steven came on the phone and for about five minutes he couldn’t talk for laughing. The Housing association’s housing manager had just been round to inspect Steven’s house and at some point she mentioned she liked Mr Bean and asked Steven if he liked him as well. Steven showed her all his DVDs and she said “What a coincidence”. The support worker told me that Steven collapsed with laughter when she said this but nobody could work out why. Eventually Steven told me – “Lady was talking like Bill Hislop”. In case you’ve never seen it, Bill Hislop is Muriel’s father in Muriel’s Wedding. “What a coincidence” was Bill’s catchphrase in the film whenever his mistress turned up unexpectedly.
By 5pm, I arrived at the hotel for my respite night. I was so tired I laid down on the bed and half imagined I’d still be there at 7 the next morning. I did get myself down for dinner and had a simple feast of chicken and chips, rhubarb crumble and a pint of Guinness. It was lovely. I asked for the bill and was just about to tap in my pin number when I noticed the bill came to £177.35. Surely the pudding couldn’t be that over priced? Found out I’d been given the bill for the table of four next to me, who’d managed to get through several bottles of wine. Once the matter was sorted and feeling like I’d just paid for a bargain, I treated myself to another Guinness.
A day of bills.