Bill, Bill and Bill

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.

11 thoughts on “Bill, Bill and Bill”

  1. Great stuff, Mark.

    My only concern is how you define ‘most appropriate place’. For me, that’s a no-brainer. For a council, it might mean ‘cheapest’… we need some kind of guidance on who defines it and how.

  2. Mark

    What strikes here is that we families must get a good understanding of these Acts and of the implications for our son’s and daughters if we do not. LA’s in the main do go for cheapest. This as we know has implications on safe and just support/ care as well as for ‘appropriate’ housing. Assessments of need and capacity vary wildly year on year, depending on the assessor. The ‘reducing dependence’ and the ‘slimming down costs’ dogmatists, are too often very dangerous. Most of us have been, through the life scarring thief …that is the LA assessment challenge or complaints process.

    Many parents or families are now too old or have always been unable to research and or fight for right(s) under the law, and many champions cannot any more, fight back. There are real implications for those no longer supported and or home care etc monitored, by mum and or dad. These new acts are difficult to comprehend for even the most capable.

    But we who still can, are right with you … and where we can ,we are right alongside those who cannot. But more power to all our elbows is needed in the form of all our understanding of the current and any new Statutes..

    Example: I commented on a very hard won, and when it happened a ‘difficult’ meeting with LA five weeks ago. Where we hoped to resolve the non delivery of last years care plan and the ongoing nil support for health and crises for our middle aged, severely learning and physically sight impaired ‘independent’ living (who has Down’s)son. Since then…not a tweet. We are still ‘it’ for many basic and too many dangerous support gaps.

    We are old. I asked in this chilly and very daunting meeting ‘is it possible for help/support to be given to arrange (not fund) a holiday’, (for our son when we are gone). The brisk blunt brief stopper response was, ‘a want not a need, end of. No discussion ….move on.

    I wondered how this manager views own want’s or need’s as a human person, ……for a holiday … or in any other regard? Eg a home…is .a ‘want or a need’?

  3. And what about including the incoperation of the UN Convention for Persons with Disabilities Article 19 text is below. This text was written by disabled people during the drafting of the convention. This Government and Labour have ratified the UN COnvention for Persons with disabilities – it would be useful to have it incorperated into UK domestic law – similar status to the European Convention on Human Rights that has been incoperated into UK law by the Human Rights Act.
    Article 19 – Living independently and being included in the community

    States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

    a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

    b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

    c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

    I am very interested as a disabled person with LDs to get involved in this bill – it would be a pitty if disabled people including those with LDs are not involved in the drafting of this bill. Disability Rights Commission managed to get an disabled persons rights to independent living private members bill – would it be useful to look at that one I it was sponsored by Jack Ashley before he died. Please forward the LB Bill contact details to me name, email address and tel numbers. Thanks

  4. This is very informative – I think its great to have a bill in light of what happens to disabled people who are forced into institutionalised settings. My view as a disabled person is that the state or the LA must not be allowed to force anyone into any form of segregated institution of any sort. As soon as the state provides a judicial process to decide who or who should not be allowed to live in their local community – this puts all disabled peoples (including my) rights at risk as there is no presumption for all disabled people to have a right to live in their own homes in the community of their choosing. We need to start from the place that all disabled people must have the right to be educated and live in their own local communities – this right is not vetoed by the state. A good place would be the incoperation of UNCPD Article 19 (disabled peoples human right to independent living) – already recognised by the recent ILF court of the appeal case (see more on DPAC’s website) and UNCPD article 24 (the right to inclusive education).. The problem is that as soon as Governments want to support institutionalised settings, then there is less money available to enable disabled people to live inclusively in the community.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s