Starting a revolution in learning disabled arts

Starting a revolution in learning disabled arts

Mark Richardson explores the barriers faced by many learning disabled performers

 

Creative Minds is a movement that wants to start a revolution in the mainstream arts world. It wants to challenge preconceptions of the value and quality of learning disabled arts and get people talking about what high quality looks and feels like.

 

Having recently staged the second in our series of national conferences in Bristol to raise the profile and spark debate around quality in learning disabled arts practice, it’s somewhat frustrating to see that we are still up against what Lyn Gardner aptly termed the ‘chicken and egg’ scenario facing the learning disability arts sector.

 

Lyn argued recently in a Guardian blog that artists and arts organisations can only improve the quality of their practice by being seen and critiqued, and responding to that critique to shape and improve their work. But how can that happen to learning disabled arts companies which are struggling to have their work programmed in the first place? There you have it: the chicken and egg scenario.

 

Yes, it is frustrating that we’re still debating that problem almost a year into the Creative Minds movement, but as Lyn also pointed out, look how long it’s taken an arts company such as Graeae to become nationally and internationally accepted into the mainstream.

 

What constitutes good art?

Where does that leave Creative Minds? Whilst we are working hard to create opportunities to discuss the quality of learning disabled work – through our conferences, our website talking area, the media, and through our social media channels – we are still experiencing a great deal of reticence in terms of people voicing an opinion on what constitutes good and poor quality art.

 

It’s not a problem confined to Creative Minds. The Arts Council – arguably one of the biggest funders of projects and organisations that supports ‘marginalised groups’ to have an opportunity to create and experience art – is itself grappling with the definitions of quality debate. It has invested considerably into a Quality Evaluation Framework pilot in an attempt to define what quality is in participatory arts practice.

 

It will be interesting to see the outcomes of this work and what it can offer the Creative Minds debate in offering up some indication or consensus on what quality means.

 

Meanwhile, Creative Minds is pushing forward by investing in the recruitment of a National Coordinator for the programme. We are continuing to try to break down the barriers, not only to the perception of learning disabled work but also to the self-evident taboos that still prevent many people from making a judgement about the quality of what they see.

 

 

Creative Minds is a national project in partnership with 27 companies and organisations. It is supported by Arts Council England, Paul Hamlyn Foundation, John Ellerman Foundation and Brighton and Hove City Council (Creative Minds Brighton).

 

Join in the discussion on http://www.creativemindsproject.org.uk/category/talking-area/

 

To follow Creative Minds on Facebook: www.facebook.com/creativemindsproject

For further information about Carousel www.

carousel.org.uk

 

You can read Lyn Gardner’s article on learning disabled theatre at http://www.theguardian.com/stage/theatreblog/2014/oct/17/learning-disabled-theatre-creative-minds-diverse-futures 

Would you allow this to happen to you or people you care about? We should stop it now!

  1. Mark Neary posted a blog today titled Knife edge Decisions which prompted this. He talks about his and other families’ experience. He reflects on the position of the families of many of the 3500 still incarcerated facing a treck on Christmas to spend time with their relative in a completely inappropriate setting comparing it with what’s happening to Stephen thankfully released but only thanks to the Court of Protection. He also compares the treatment of people with learning disabilities if they go off the rails in their adolescence with other young people. It made me think harder about the Mental Health Act which is too often what is used (or mis-used) and I have to question what people are doing included here IF THEY DO NOT HAVE A MENTAL ILLNESS? How can it be right to put people into hospitals under a section when their only diagnosis is learning disability or autism alongside behaviours that need understanding and responding to, not controlling with locking people up?

    So most worrying that so many don’t have a Mark to fight & speak out and so many families are struggling to be heard – like Lynn, mother of Chris stuck in Calderstones recently judged to have serious  issues by CQC.

    So the flaw seems to be the inclusion of people in the Mental Health Act solely by virtue of a learning disability/autism with challenging behaviours,  such that a psychiatrist and AMHP can section them even though they don’t know them. This also raises issues for me about the extent to which they listen to the family about the problems before applying a section and whether professionals in mental health actually have the experience, knowledge and skills needed. Do they in fact have good knowledge of community services which can work with challenges and importantly care? Have the community specialist learning disability health services survived the constant health reorganisations and cuts sufficiently to be able to support crisis as they once could in our area with a dedicated challenging behaviour team including some hands on support – now no longer there? What about the local authority – out area has already had somewhere between 30 and 35% cuts and will have more than 50% cuts by the end of this government’s plans – with no protection to adult case budgets? Could we blame some for burying their heads about need, and they should know all the people coming up in school who present challenges and will need planning for. Why would they be eagerly developing highly expensive skilled community placements ready when health colleagues might turn their backs on making any contribution? After all if Health have to act in crisis then they also have to foot the bill of these shockingly expensive assessment and treatment monopolistic placements – average said to be £3500-£4500 per week!! and one of the women in Winterbourne cost £10k per week. Imagine what sort of community placement could be developed for this. It is time the government listened and insisted that the a&t placement money was put into the community. When people were resettled from long-stay hospitals in the 80’s on in the North West they frontloaded money – the government need to think whether they claw it back from these units once community services are redeveloped and bespoke [placements are developed for people at home.

    Under the MHAct action seems to run out on admission. Not clear how they can assess in such weird surroundings – assessment needs to take place in the community – and then as we move to a ‘treatment’ section there isn’t any. How could the ‘treatment’ regimes in general be relevant? How can the  ‘treatment’ of Stephanie Bincliffe who died being “treated” with years of seclusion, lack of exercise and fed to death be right? Her family would have been prosecuted if  they had done this to her! It would have been grounds to take her away from them. How was Connor being left in the bath for hours or of Chris in Calderstones restrained face down, (his mother thinks) in the mud (which is the nearest he has to a garden) be “treatment”. There can be physical intervention to hold a situation until the person starts to actually see the life they imagine starting to happen, but how can this work locked away in an institution.

    So I wonder about the accountability of the MH Tribunal and the Managers’ meetings – are they equipped with the right knowledge and skills to judge whether people’s mental health needs are indeed being met in the least restrictive way as the law demands? How can this be true when we know with the right help and support, the vast majority of people currently incarcerated in assessment and treatment units can be supported and get the right “treatment” in the community with people who care (and there are providers who care and work well with people who have challenged just as much) and who have the skills and work WITH families.

    The use of assessment and treatment units feel like psychiatric professionals have taken the power this gives them and if I’m kind might say it’s because they are so institutionalised them selves that they just don’t know that people can be worked with effectively in the community. They should come out and look at all those people who come nowhere near them, whose behaviours have been just as risky and challenging but who’ve been fortunate enough to have had a relevant response and a service that actually cares, is skilled and strives to listen and involve families and respond to their needs and the way things need to happen for the person. It can Mark include Positive Behaviour Management – but only in the context of it being properly trained and managed to understand and so prevent behaviours by such as ensuring good communication relevant to the person, a context in which the person has as much real control and choice as they can, skilled support staff who care ad genuinely like and value the person and the development of a life and activities, relationships etc that are what the person wants or is willing to explore.

    3500 people stuck in units feel like a function of people – professionals – who fail to care, fail to get past behaviour, fail to understand it or even try, fail to listen to families and people who do, fail to have any humility about the limits of their professional skills, maybe fail to have the skills, fail to know what’s possible in the community – and worryingly don’t have community experience being incarcerated themselves in the institution. The legal framework needs questionning but so do those supposedly administering it and the commissioners who should have bene planning for discharge as soon as someone is admitted. The “readiness” model applied in a unit which is nothing like the community and offers little of relevance to the person, means people could be stuck there for ever. There is a community treatment order which should be used if we really imagine recall to the unit is needed – I would hope once out everything is done to ensure they ever go back unless a mental illness crisis.

    I do wonder if many of the unit professionals would survive outside in the community? I’d like to see a requirement that all of them have to do some work in the community.

    We must also let the public who don’t know of the shocking facts of what is being done to people’s families. Ask them to imagine if it were them or their family/friends. And we’re doing this to people who don’t have the same cognition to understand, who need more help in the community not less – which makes the #LBBill essential – so I’m in. Are the rest of you?

    We need action urgently…. so all please support #LBBill and #JusticeforLB and join your voices to those in the LDA trying to bring us all together to have a single more powerful voice to DEMAND our government and the next one deals with this. Surely we should have an amazing electoral power if we all joined our voices?f you? We need all people’s rights really being upheld – professionals under the law should involve families in major decisions.

Day 15: JusticeforLB Advent Calendar

Whilst the draft LBBill continues consultations to get real change at government level and to ensure that Connor’s death has secured key human rights and proper local services, click on the link to see what happened across the 107 days JusticeforLB campaign to raise awareness and mobilise support to change things. https://www.youtube.com/watch?v=qPXAVYTCllY&list=UUlua_zqjKZzJ_jf8QME3-Xg

Learning Disability Alliance QUESTIONNAIRE – what have been the impacts of the cuts on you/people you care about??

LDA needs your voice – anyone who has a learning disability, families, providers and everyone who is concerned about what’s happening.  ANSWER by 11th February – so LDA can launch the report at Westminster on the 24th February and tell our politicians and candidates for the election what we think…..

PLEASE GO TO http://learningdisabilityalliance.org/quality-checking-government/

Have you joined the LDA – if not why not join and stand together to tell our government what we expect?

In the wake of Winterbourne, and the preventable deaths of Connor Sparrowhawk (Justice for LB and LBBill) and Stephanie Bincliffe, we can’t allow abuse, neglect and the damage being done by moving people in pain into inappropriate settings in an abuse of power – away from people who care. The power must be rebalanced so people with learning disabilities have control and supportive families are listened to. We know most of the people in institutions can be cared for and develop lives in their community – not set apart. Stephanie was fed to her death this last August it would seem…and this deathmaking cost £4500/wk to lock her in isolation for 7 years…..http://www.theguardian.com/society/2014/nov/24/hospital-autistic-woman-weight-gain-inquest

Continued scandals it would appear will continue unless we see such places close and skills back in the community. Do you care enough? If so join the LDA and add your voice http://learningdisabilityalliance.org/join-us/

The LDA is developing regional connections to try to bring everyone’s voices to bear, so contact a local connection here  http://learningdisabilityalliance.org/contact/advisory-panel/

THE LDA is about all of us standing together to Quality Check the Government and the political parties and measure them by standards that really matter to us. There’s an election approaching – what are the political parties going to do about the current situation? Don’t delay – start asking now and ensure people with learning disabilities are empowered with their vote – United Response have a series on helping vote in Community Living magazine. Subscribe now and get digital access to their series..

A starting point for change

Why are the numbers in assessment and treatment units increasing despite the efforts of the Winterbourne Joint Improvement Programme? Chris Hatton has a theory and some radical suggestions for reversing this trend.

 

Over three years on from the original Panorama exposé and with less than one year left of the official Winterbourne Joint Improvement Programme, the latest information from NHS England(1) is that the position is not only not improving as quickly as was planned but that things are actually moving in the opposite direction to that mandated by the programme.

 

In this blogpost I want to confine myself to a few observations and a proposal that suggests a very different starting point to the current approach.

 

Observations

1. There is a discrepancy in the numbers, between the 3,250 people in these services identified in the latest learning disability census (2) and the 2,615 people in these services identified in the latest returns from commissioners. The reason for this is quite straightforward – both numbers are correct, it’s just that there are around 500 people in these services health commissioners don’t know about. If a person has been in one of these places for a long time (which we know isn’t unusual) how many reorganisations of commissioning have taken place (let alone all the internal reorganisations and relabellings) in that time. Are the cheques still being paid while the person has quite literally been forgotten about?

 

2. For the first two quarters for which data have been available, the number of people being transferred into these services has been substantially bigger than the number being transferred out. I was shocked by this at the time but on reflection I should not have been surprised. The focus of the Winterbourne programme has largely been on people already in these services – understandable but unlikely to be enough to tackle the systemic combined behemoth of fragmented commissioner inattention and provider expansionism supporting these services (3).

 

3. I can understand the dilemma of whether to set up the Winterbourne programme on a time-limited basis. However, the limited amount of time left presents a real problem. From what we’ve seen so far, I suspect that many commissioners and providers will be tempted to stick it out and hope that any pressure being exerted by the Winterbourne programme will go away.

 

4. According to the latest NHS England figures, by far the most common reason given by providers (via commissioners) for people not having plans to transfer out is a ‘clinical decision’.

 

This for me raises questions about the appropriate status and role of psychiatry in these services:

•  Although these are designated ‘hospitals’, institutions for people with learning disabilities were originally run by local authorities and it was only the creation of the NHS in 1948 that magically turned these places overnight into health services, partly through their gradual colonisation by psychiatry throughout the 19th and early 20th centuries.

 

• Reasons for transferring people into ’hospitals’ are frequently reported as ‘learning disability’, ‘challenging behaviour’ or ‘mental health problem’. The first two are not in themselves health issues and effective support for the third can frequently come from non-medical approaches.

 

• One would hope that ‘hospitals’ would at least provide effective physical health care for people with learning disabilities (especially as they can underpin many behaviours labelled as ‘challenging’ (4) ), but #justiceforLB and many other people’s experiences show that this simply cannot be guaranteed in these services.

 

• There is precious little evidence that these services as a ‘model’ of care are routinely providing high quality therapeutic environments for people on the short-term basis they are apparently set up to provide. With over two-thirds getting anti-psychotic medication in the last month, over a third experiencing hands-on restraint in the last three months, 60 per cent having lived in the service for a year or more (all from the learning disability census), these services are not delivering on their own terms, let alone according to other ways of thinking about a person’s life.

 

An action plan

I offer this plan as a sketch of what could happen if we start from a different set of assumptions and as the start of a conversation.

 

Most commissioners got nowhere near the target for transfers out by 1 June 2014 and, I suspect, may be too small, fragmented and focused elsewhere to give the matter proper attention.

 

– All these services should be closed to new admissions, CQC to make a clear statement that they will not register new services of this type and that they will have a process of de-registration of existing services.

 

– Funding should  be withdrawn from all commissioners still funding people in these services, that funding to be administered by a national closure taskforce. This would give the taskforce a starting budget of over half a billion pounds per year – and the Winterbourne View programme money could be added to this.

 

– Put people with learning disabilities and families really in charge of this taskforce, making decisions about who is appointed to work on the taskforce, in which capacities, and what it does.

 

– The taskforce would work to develop local, individual supports for people moving out of these services – with new people, agencies and supporters rather than the usual provider suspects (unless the usual provider can come up with something the person and family members want). This would be person-centred, with the person and family in charge of circles of support.

 

– Funding, provided at the same level as the assessment and treatment centre, to move with the person (I hear howls of protest and accusations of a two-tier Rolls Royce service but it would demonstrate what good looks like).

 

– The taskforce would also help to develop local, individual supports for other people with learning disabilities who might have been sent to these places by commissioners, including strong local structures for self advocacy and family advocacy.

 

– The taskforce would help to develop ways of supporting people with learning disabilities in acute distress/crisis for short periods.

 

Web links

1. www.england.nhs.uk/

ourwork/qual-clin-lead/wint-view-impr-prog/

2. www.hscic.gov.uk/ldcensus

3. chrishatton.blogspot.co.uk/2014/04/

acts-of-commission-commissioners-and.html

4. www.improvinghealthandlives.org.uk/

securefiles/140602_1606//Factsheet-CBed.pdf )

 

Chris Hatton is a researcher at Improving Health and Lives: Public Health England Learning Disabilities Observatory.

 

We are grateful to Chris for giving us permission to re-produce this blogpost.

We have to sort out the holes in health and welfare provision

Andrew Holman fears the failure to deal with the underlying problems in health and welfare provision is behind the lack of progress in moving people into the community.

 

As anyone reading my views about the unnecessary and indeed abusive use of Assessment and Treatment Units (ATUs) will know, I firmly lay the blame at the door of many health care commissioners. Their lack of expertise and oversight, of joined up working with social care and (despite knowing it was a problem) the lack of anyone in any position of authority doing anything about this for a great many years have all contributed to this impasse. Without sorting out those holes in health and welfare provision very little will change; indeed, add to that the savage cuts to the budgets of local services and we begin to see the scale of the challenge.

 

It is not surprising, therefore, that whilst the Winterbourne View Joint Improvement Programme has very successfully seen some people move out of these places, they failed to meet the deadline of 1 June to see everyone inappropriately placed move on. Incredibly, they saw an increase in their use, with more people being sent to them than discharged. I believe, this was because of the failure to address these underlying problems.

 

Platitudes

When I wrote to the Care Minister Norman Lamb about these concerns earlier this year, the reply from civil servants was full of platitudes – yes, they know there are problems here and there but they are all in hand. GPs know how to get “the best outcomes for their patients” when buying these services. Commissioners would soon have ‘standards’ letting councils know how their commissioners compared to others and Healthwatch would find out what people thought of their services during their visits.

 

Yet in a later interview the Minister described the Programme’s lack of progress as “an abject failure … the most depressing and frustrating task” he had faced. Talk about a disjointed response! Labour has called on the Government “to commit to a two-year deadline to end the practice of placing vulnerable people with learning disabilities at (ATUs) for long periods of time” – but without mentioning how the other problems would be solved.

 

Jan Tregelles of Mencap, and Vivien Cooper of The Challenging Behaviour Foundation, chipped in to more accurately sum up. “A new deadline is important but we really need to see the development of long-term and sustainable care in local communities to ensure people get the right support, in the right place, at the right time. What is imperative is that a clear plan is drawn up which engages everyone who has a role to play in not only moving people out of units but also preventing people being unnecessarily moved into them.”

 

They continue: “Urgent action needs to be taken to bring together better informed clinical decision-making with the development, funding and monitoring of local support and services. Further delays in this programme are simply not acceptable”.

 

NHS England’s decision to appoint Sir Stephen Bubb to come up with and implement a plan overnight with the help of a handful of his members has caused a storm in grass roots learning disability circles. Bubb’s lack of involvement in his ‘breakfast meeting’ and subsequent development of his plan has rightly got Gavin Harding (National Forum and Winterbourne View Engagement Group) and Gary Boulet (People First England) steaming.

 

Gary expressed surprised at the announcement. “There’s no doubt people with a learning disability should have been involved to plan this,” he said. Gary is also involved with the Learning Disability Alliance which aims to bring people together to work for better solutions.

 

Disappointed

Gavin says: “I was disappointed to see that Stephen Bubb had not spoken to people with learning disabilities or families”. He goes on to talk about the incidents of abuse in almost all settings for people with learning disabilities and concludes that a lot of organisations should “get their own houses in order” first and, perhaps controversially, “we need to change the way providers work in the community before moving people into the community”. Whilst Gavin has a point, my fear there is that some people will have to wait in institutions a very long time before that happens.

 

Gavin is looking forward to working as co-chair with Norman Lamb on his group and he will not be a token co-chair. But the lack of clarity about their role under Bubb’s leadership will be a problem.

 

They have now decided to set up a wider group, involving others but I fear the decisions NHS England have taken with Bubb have gone too far already.

 

As Gavin reminds us,“We do need to work together on this. We will be stronger together as a team. We may disagree with each other but we need to be strong.” Let’s hope, for the sake of those incarcerated in these institutions, it doesn’t take too long.

 

Andrew Holman is Director of Inspired Services.

A call to action

When will politicians start listening to people with integrity and good maths and stop depriving people of their liberty in expensive unaccountable institutions? asks Jo Clare

 

The assessment and treatment system which spawned Winterbourne View creates optimum conditions for human rights abuses: it sends people far away from home, isolates them from those who know and love them, puts them ‘out of sight and out of mind’ of those who place and fund them.

 

This system has separated 13 year old Josh Wills from his family for two years and led to the preventable death of 18 year old Connor Sparrowhawk. Latterly, such was the disregard for natural justice  for Connor, known as LB (Laughing Boy) that Southern Health were initially allowed to investigate a death for which they were ultimately found responsible. By the end of the #107 days Justice for LB campaign, no-one in charge at Southern Health had been held to account for Connor’s death.

 

Rotten unjust deal

To seal the rotten unjust deal, already toxic conditions are augmented by perverse incentives and conflicts of interest. Serially detaining people at very high prices is more lucrative than successfully assessing, treating and resettling people. In some cases, psychiatrists responsible for reviewing the appropriateness of detention or placement are in the pay of providers who benefit from serial and prolonged detention. As there is no transparency about conflict of interest, how can NHS England or Norman Lamb trust any of the thousands of decisions that a person is ‘appropriately placed’?

 

And then the whole poisonous system is protected by a widely accepted myth, that there are no alternatives, whereas there are alternatives. They exist everywhere, quietly keeping thousands of people out of the assessment and treatment system. What does not exist everywhere is the money to fund them, the local crisis and respite services to support them, and the will to commission them. A social care commissioner faced with huge budget cuts may choose not to fund  a complex, risky, local community solution which costs £100,000 per annum, when there is an in-patient place paid for by the NHS going begging at £350,000.

 

So, with the opportunity for a fresh start and instant impact, the new NHS England CEO, Simon Stevens, responds to the Transforming Care debacle by haplessly appointing Sir Stephen Bubb, CEO of Association of Chief Executives of Voluntary Organisations, to lead an exclusive  group of provider Chief Executives and advisors to produce a guide to reform the healthcare system for people with learning disabilities.

 

No conflict of interest there then. With no credible remit, the threat of a ten year plan, and hubris a-plenty, families and advocates of people subjected to this cruel system are furious with his appointment.

 

Powerful self-advocacy

In stark and welcome contrast, Day 99 of #107 days Justice for LB, the right people were around the table and the lights went on. In Leeds, CHANGE and Lumos combined to present a powerful self-advocacy event ‘Our Voices, Our Choices, Our Freedom’ and Norman Lamb‘s representative listened to experts by experience from all over the country (See Rosemary Trustam’s report of this event “It’s our freedom”  on p.24). Oxfordshire Family Support Network also adopted the day and launched their articulate  and illuminating report ‘A local experience of national concern’, dedicating it to the memory of LB.

 

We wait with bated breath until somebody in politics combines listening to the right people with integrity and good maths and works out that the overall economics, as well as the ethics, are on the side of liberty and human rights, not deprivation of liberty in expensive, unaccountable institutions. And if, armed with that, politicians do not have the power to end this system now, you might be forgiven for asking “What is the point of them”?

 

Jo Clare is CEO of Three Cs and a Community Living adviser.

 

Join the Campaign

Community Living magazine supports the Campaign for a Fair Society’s call to end, once and for all, the abusive system which spawned the Winterbourne View scandal.

 

Why not join the 3,000 lives campaign and write to your MP asking them to respond to the call for action?

Advocacy with teeth

Under the regulations of the Care Act, local authorities will have a legal duty to provide advocacy in certain circumstances. Belinda Schwehr explains.

Under the Care Act, from April 2015 onwards, ‘paid for’ independent advocacy, can be procured through the local authority in the context of assessment and care planning, if there is no-one else appropriate to do it, unpaid.

This duty covers the support of people who have some mental capacity but who have substantial difficulty in being involved in the care and support ‘processes’, so its scope is broader than the Mental Capacity Act IMCA obligations.

Advocacy Regulations underpin the message of the Guidance and must be complied with as law.

Crucial questions

There will be debate about the use of the Mental Capacity Act ‘four building-blocks’ approach to the question of whether someone cannot retain the presumption of capacity, in the context of assessment processes, for professional decision-making about ‘this person has still got some capacity, but’….

There will also be anxiety about whether the new duty, alongside the introduction of a major piece of reforming and consolidating legislation, will make it more likely that  people’s natural advocates, their relatives, will take fright and just say ‘No’, to doing it for free.

If they are unwilling – perhaps because they are too busy or they believe themselves to be inappropriately skilled or lack knowledge – how is a council likely to respond?

The Guidance is not clear whether the willingness of the relative is a pre-condition to their appropriateness but says it’s for the council to judge whether a relative who exists is ‘appropriate’ – implying that they will refuse a person an advocate if an appropriate ‘other’ merely exists.

But if that person is unwilling, could a council defensibly say that there’s no duty to fund one for an individual who will, by definition, be facing substantial difficulty, without one?

An answer can be found in the Guidance if one looks hard. It says that this service differs from the IMCA one as it provides support for people for whom there is someone who is appropriate to consult for the purpose of best interests decisions under the Mental Capacity Act but who is unable or unwilling to facilitate the person’s involvement in the local authority process.

Decisions about access to advocacy that need to be made at ‘first contact’ are complicated and likely to lead to a lot of aggravation and dissent. The identification of a potential need for advocacy may arise through the process itself, from the person themselves, carers or family. But it is a judicially reviewable decision and where an authority has outsourced or commissioned all or some of this process – for example, by contracting out its Front Door or Courtyard to a private company – the authority will maintain overall responsibility for this judgement.

Scope

The duty covers people in relation to their assessment and not just care planning, regardless of whether a move into residential accommodation, funded by the state, or Deprivation of Liberty is being considered. It is mandatory, in relation to the review of a care and/or support plan whereas under the IMCA scheme it is discretionary.

It covers people in relation to safeguarding processes too, regardless of whether anyone is considering what are called ‘protective measures’ (ie. DoLS process, or an application to the Court of Protection for a welfare order).

It covers people who have substantial difficulty in engaging, even if they are carers and not service users; ie. in relation to any assessment of a vulnerable person’s own needs as a carer.

The Guidance adds these scenarios as triggers, if there is doubt:

“where a proposed care and support plan may involve restricting a person’s liberty to the extent that they may be deprived of their liberty, in any setting, an advocate must be involved. For example;

• where a family member strongly opposes a care and support plan that involves moving a person who lacks capacity into a care or nursing home; (but note, not into supported living!)

•where a person is objecting to leaving their home in the community;

• where a care and support plan is so restrictive that paid staff make all the day-to-day decisions about a person’s life (in any setting);

• where a care and support plan involves serious restraint, such as placing a person in seclusion, or physical restraint which is distressing to the person (there is no real justification for the addition that it needs to be distressing – restriction is legitimate if it is proportionate but if it is distressing it is more likely to be regarded as overstepping that line);

• where a care and support plan involves serious restrictions on freedom to associate with family and friends or partners (ie. prohibitions);

• where a care and support plan makes no provision for the person to be able to ‘go out of’ the place where they live, ie. for leisure or social activities;

• where a care and support plan makes a person entirely dependent for everything on paid staff and there are no family or friends involved.

The content of the advocate’s role

The advocate’s role is complex and varied. It includes assisting the person to understand their rights under the Care Act:

“for an assessment which considers their wishes and feelings and which considers the views of other people; their right to have their eligible unmet needs met by the council and to have a care or support plan that reflects their needs and their preferences as far as is appropriate”.

This is in effect the public law principles underpinning social care. The Guidance insists that the role includes assisting the person to understand their ‘wider rights’, including their rights to liberty and family life (ie. their human rights). The role extends to assisting a person to challenge a decision made by the local authority; and where a person cannot challenge the decision even with assistance, then to challenge it on their behalf where the advocate believes the decision is inconsistent with the local authority’s duty to promote the individual’s wellbeing.

This is to be done by a written report. In effect, this is a letter to the council’s Monitoring Officer to raise matters of illegality or poor administration – which cannot be done effectively without knowing adult social care legal principles.

The local authority is told by the Guidance that it should convene a meeting with the advocate to consider the concerns and to provide a written response to the advocate following the meeting.

Advocates will therefore need training in the legal framework of local authorities’ rights and duties, and that means that councils’ own staff will, sooner or later, also need training.

There is at least one special message for costs brokers and councils in the Guidance that should be imprinted on the hearts and minds of providers and advocates:

“Periodic reviews, and reviews in general, must not be used to arbitrarily reduce a care and support package. Such behaviour would be unlawful under the Act, as the personal budget must always be an amount appropriate to meet the person’s needs. Any reduction to a personal budget should be the result of a change in need or circumstances”.

Who should be providing this advocacy?

The Guidance emphasises that it would be unhelpful to the individual and to the local authority for a new advocate to be appointed if it becomes apparent that an IMCA entitlement is also triggered. It would be better if the advocate appointed in the first instance is qualified to act under the Mental Capacity Act (as IMCAs). Local authorities do not have to commission one organisation to provide both types of advocacy. But there are obvious advantages:

– existing IMCA services can buy in the services of smaller advocacy organisations and it is better for the person receiving the support;

– it is easier for those carrying out assessment and care planning to work with one advocate per individual rather than two; and

– it is easier for the local authority to manage and monitor one contract rather than two.

The advocate must not be working for the local authority, or for any organisation that is commissioned to carry out assessments, care and support plans or reviews for the local authority.

Given the subtle differences between –

• self-directed advocacy (albeit funded by the council, for a vulnerable adult struggling with the processes)

• directly paid for advocacy support in relation to maximising the prospects of a good assessment decision by the council

• being a best interests IMCA ‘advocate’ for a person formally lacking capacity

• independent ‘expert’ input into an assessment, paid for by a council for dispute resolution purposes

• delegated social work assessment on behalf of the councils,

chaos could arise if one individual or organisation swapped hats on a client-to-client or day-to-day basis. But the ban on it being done by someone who works for a council or its formal delegate, on assessment and care planning, seems an unnecessary restraint on an expert’s freedom to provide freelance services to more than one sort of organisation. It may not even be sustainable, given how thin this sort of expertise is spread nationwide.

Paid capacity

Nor can an advocate be appointed if they are providing care or treatment to the individual in a professional or a paid capacity. This does not mean that a provider can’t offer advocacy to a council for other providers’ clients.

A provider’s role, on review or initial placement, will still be to be a best interests consultee, even if not an advocate. But to discharge that role helpfully, and supportively for the organisation, a long term prudent business strategy would be to consider running a formal advocacy service, albeit for others’ clients, so that the knowledge is there, in-house, to be put to good use for business purposes.

Belinda Schwehr

Care and Health Law

A bit of edge – and a lot of talent

If you like a bit of edge with your art, then Peckham Platform is the place to go, says Simon Jarrett

 

Exhibition: ‘Practice Makes’

Intoart, Peckham Platform

London SE15.

 

A day-glo pink and green modernist angular structure set on one of London’s most ‘take us or leave us’ high streets cries out for bold, different and challenging art.

 

‘Practice Makes’ does not disappoint on any of those points. The exhibition arises from the work of ‘Intoart’, an art collective that includes a group of learning disabled artists who work from a South London studio.

 

For this show, three artist mentors – Mawuena Kattah, Philomena Powell and Clifton Wright (all with learning disabilities) – worked with a group of six young people from Tuke school, a school for pupils with severe, profound and complex learning disabilities in Peckham.

 

The results are beautifully displayed, the work of each mentor placed alongside the work of their ‘mentee’ allowing us to see both the influence of the experienced artist and the burgeoning talent of those they have taken under their wing. Each mentor has also produced a commentary on the process and the results of their work.

 

Brooding foreground

The work of the mentor artists can therefore be viewed in its own right. I was particularly taken by Philomena Powell’s Brighton Beach where blocks and lines of shades of blue and purple set the sea and sky against a brooding foreground of rocks and grass. In her notes she acknowledges Turner’s use of light and Hockney’s Swimming Pools as influences on her work, and her subtlety and insight with light are clear.

 

Her influence has evidently rubbed off on her student protégé, and  Chanell Shea’s Rings has a striking depth of colour and assuredness of line that bode well if this young person chooses to pursue a life in art.

 

All of the partnerships have worked well. Mawuena Kattah’s marvellously loose, strikingly coloured  portraits inspired by her trips to Ghana and Ghanaian family have inspired a superb, uplifting Pattern series by Ashan Ali.

 

Angular

Clifton Wright, whose angular representation of the Intoart Studio workspace next to the Tuke School workspace I admired very much, describes in his notes how in the relaxed but hardworking atmosphere of the studio he was able to pass on ‘tips of the trade and give the young people my personal experience with art in general’. It clearly worked as his mentee Abdalla Alkatheeri has produced two strikingly mature, confident portraits, Family and Friends and A Man Called Jack, which display great ease and confidence with form and colour.

 

Well done Intoart for this idea and to Peckham Platform for recognising its value and hosting it, as well as for organising hands-on, free workshops for young people to go alongside it.

 

This isn’t about ‘art therapy’ or ‘doing art’. It’s about talented young artists who see themselves firmly in the British artistic tradition, helping to unearth and bring through the next generation of talent.

 

Bring on the next exhibition – I’ll be first in the queue.

 

The young people mentored were: Ahsan Ali, Abdalla Alkatheeri, Kadeem Baugh, Stefan Jones, Chenell Shea, Kaya Sherriff.

 

http://www.intoart.org.uk

http://www.peckhamplatform.com/

Why not ‘put your daughter on the stage’?

What happened when Ellen Goodey received an Arts Council grant to direct a play? She and her dad, historian Chris Goodey (author of A history of intelligence and ‘intellectual disability’) decided to write a play together. Then Ellen put it on the stage. Chris Goodey takes up the story.

 

In 2012, Ellen Goodey received an Arts Council grant to direct a play. The idea came from the Ramira Arts Collective’s Ray Downing, based at Stratford Circus Theatre in East London. He saw no reason why someone with learning difficulties and lots of performing arts experience should not have the chance to be a director. He suggested that Ellen and I write a play between us, on any subject we liked.

 

Even though we immediately came up with two completely different ideas, and even though we are father and daughter, we managed to blend. Ellen’s idea, stimulated by what was going in her personal life at the time, was a play about the things that are with us all the time: life, death, duty, friendship. And I wanted to do something that illustrated my research on the history of learning disability.

 

Interleaved

In phase 1, we developed a script for The Princess of the Graveyard Palace. Ellen wrote the lines for her story about a dying king, a princess reluctant to take over, and her friend who somehow holds things together. This was interleaved with scenes from history that were presented as the princess’s dreams. There was also a dramatic (but intentional) intervention, mid-performance, by the late Mabel Cooper, who had spent twenty years in an institution. Ellen and I wrote the final scene together, in which the two worlds fuse. Ellen was supported to direct the whole piece (I stayed out of this part). Two pilot performances were given in December 2012. On this basis we succeeded in getting a phase 2 grant to develop the play into something that might eventually be shown to the general public.

 

Both phases had an inclusive cast. The second time around, Ellen decided that rather than cast members having to learn lots of lines, she would rewrite her scenes in terms of movement, dance and music. Not only did these particular scenes then blossom enormously, they really highlighted the values of the performers, and their insistence on what is important in life. And at the same time they pointed up the absurdity of the scenes based on historical events about discrimination (not only in the form of learning disability), which remained in dialogue form.

 

What have we learnt so far? That if you have faith and patience, and if you give your director and actors the time and space, they will take you and the audience somewhere you didn’t know about. At least, you will think you didn’t, but then it turns out as if you are looking for the very first time at what is in fact utterly familiar.

 

The artistic evaluators reporting to the Arts Council were very positive and we are about to apply for a final grant to give public performances.

 

For Ellen on this play and many other things, see www.ellengoodey.co.uk.

 

For Chris on history, see www.historyoflearningdisability.com/site-authors-e-texts/chris-goodey/the-psychologists/

From words into action

With only eight months to go before the general election there are several practical steps that can be taken to encourage voting by people with learning disabilities. In the third article in this series, Diane Lightfoot explains what these are.

 

We’re now eight months away from the general election, and halfway through our series of columns to promote voting by people with learning disabilities. In our first two columns we explored the barriers to voting, including legal obstacles and more subtle difficulties, like the complexity and inaccessibility of information on voting. We also recommended that all organisations working with people with learning disabilities engage in a listening exercise where they find out exactly what prevents them from voting.

 

Now it’s time for action. There are several practical steps that need to be considered to encourage voting, and the sooner they are taken the more likely it is that people with learning disabilities will have their democratic say. The most important considerations are registration, mental capacity and access to information.

 

Registration

Ensuring your potential voters are registered is mundane but essential. This step has been complicated this year by a new development – the shift from voters being registered through the “head of household” to being registered as individuals. This is a welcome and modernising move but it does mean that service providers will need to take special care to ensure that the people they support are registered under the new system.

 

Research has shown that for complex reasons, including the legal registration of services, people with learning disabilities have historically been registered to vote at much higher rates than have actually voted. Most people who are registered under the previous system will be transferred automatically to the new Individual Electoral Registration. However, some will not, and they should receive a letter telling them to register again at www.gov.uk/register-to-vote. This can be a complex process, so it is wise to identify staff members who will be able to provide support.

 

In addition, if some of the people you support do not receive a letter confirming they have been transferred to the new system, or if you are unsure if they were ever registered at all, then it is best to err on the side of caution and check their registration status. This can only be done through local electoral services. You can find out yours at the Electoral Commission’s excellent website

http://www.aboutmyvote.co.uk/

 

Mental capacity to vote

Having got the basics of registration sorted, the next step is to consider whether the people you support have the mental capacity to vote. Many support workers and service providers falsely believe that most people with learning disabilities lack the capacity to vote. This is simply not true – the 2005 Mental Capacity Act makes clear that a person should be presumed to have capacity unless explicitly proven otherwise.

 

All that someone needs to do to demonstrate capacity is show that they are able to choose between candidates and understand that they are choosing someone with political influence rather than, say, voting in an X Factor competition. The individual can make their choice by whatever criteria they like. It is not up to anyone else to judge if those reasons are valid or not. Experience suggests that only a small minority of people with very complex needs would not pass this test.

 

Even if you believe that some people you support do lack capacity, the job does not end there. Another requirement of the Act is that a person is not treated as unable to make a decision unless all steps to help the person make that decision have been taken. That means using all the time between now and May 2015 trying to develop an individual’s understanding of politics and voting so they can participate if they wish to.

 

Access to information

With registration and capacity established, it’s now time to move on to the more interesting but challenging task of giving the people you support the right information on the parties and candidates. The best way of doing this is by engaging directly with your local political parties who have a vested interest in giving people information which could lead to a vote. This is particularly true in a marginal or fiercely contested seat, of which there will be many in 2015.

 

We recommend that you draw up local engagement plans, based on parliamentary seats. Work out who the major political parties are in your area – a little Googling should be enough to establish this – and work out what you would like them to do for you. This might simply be to provide easy read information, something which may not have occurred to them before. If they need persuading, remind them that there are 1 million voters with learning disabilities in England alone, a sizeable voting block they should be courting.

 

Some organisations may be more ambitious. Some of United Response’s services organised a hustings event before the 2010 election, where representatives of the political parties addressed people with learning disabilities directly, before taking questions. Although this takes time, nothing could be more powerful in increasing awareness of politics among people you support, and showing them its relevance.

 

Invite significant local parties

Whatever you would like the parties to do, get in touch with them as soon as you are able, so that they have time to respond appropriately. It’s important to note at this point that it is against the law for charities or other service providers to be biased against any political parties, as well as a disservice to the democratic freedom of the people you support. Therefore it is crucial that all of your significant local parties are invited to provide information, even ones that your employees might not agree with.

 

If you get these basics right, you have gone a long way to making the playing field more even for people with learning disabilities. Our next columns will focus on accessible information on the voting process itself, which support workers and advocates can use to work directly with people with learning disabilities. This can make all the difference on election day itself.

 

Diane Lightfoot is Director of Communications for United Response.

Getting to work in the Dolphins’ Den

Dolphins’ Den is an innovative project to help people set up a business or community project. Andrew Bright, whose idea this was, explains how it works.

 

I came up with the idea of Dolphins’ Den after being frustrated about the lack of employment opportunities for people with learning disabilities. As a Service Quality Director at Thera, my role is to use my experience of having learning disabilities to make sure people receive good support and have the same opportunities as everyone else.

 

Dolphins’ Den is based on the belief that people with learning disabilities should have the opportunity for self-employment. We run a series of workshops for people to help them come up with ideas, think about what it means to set up a business or community project and what the next steps are. Finally, we match people with a mentor, a local person who has experience of running a business or community project.

 

The first two Dolphins’ Den workshops in Preston took place on the 15 March and 15 April. We had 12 participants plus their support workers and/or family carers. Participants travelled from all over the county to come to the workshops, some coming from Lancaster and some from Skelmersdale and Chorley.

 

Most of our Preston participants have clear ideas about what they want to do. We have a group of people who would like support to make their advocacy group sustainable by expanding the services they provide.

 

Another idea is to set up a project to support young people with learning disabilities to use public transport. We also have two people who would like to set up a car cleaning business.

 

Other people would like to follow their hobbies and interests to create a business in baking and jewellery making.

 

After attending the third workshop on 13 May, participants were matched to a mentor who will work with them for six months and support them in the next steps of setting up their business or community project or expanding their existing one. When the mentoring ends, we will celebrate everyone’s progress and achievement at a celebration event.

 

For the first time in the history of the project, we will be holding three extra workshops. Local business people who were not able to commit to mentoring but wanted to support the project have organised workshops that will help participants expand on ideas about peer mentoring, marketing and business planning.

 

The Preston project is running parallel to one in Burnley, run in partnership with Vedas. So far the projects have been very successful and we are hopeful that the project will generate real self-employment opportunities for people.

 

Dolphins’ Den is a really important project for Thera because people sometimes need support and coaching from others to make their ideas happen. The project has been great in bringing the local community together and making it more inclusive.

 

If you would like to find out more about Dolphins’ Den, visit: www.thera.co.uk/dolphinsden

or email dolphinsden@thera.co.uk

Medical evidence – a crucial weapon in obtaining benefits

For many people it can be a battle to obtain and maintain the benefits they are entitled to. Independent medical evidence is a crucial weapon in that battle but may be harder and more expensive to obtain in future, says Charlie Callanan.

Controversy has arisen about how busy general practictioners deal with requests from patients for medical evidence to support applications for certain welfare benefits. Last year a Local Medical Committee (a statutory body that represents GPs in different areas of the UK) in South Wales advised local GPs that they have a right to refuse to provide, and to charge the patient where it is provided, a letter or report regarding their benefit claim or appeal.

Alternative view
Guidance from DWP says that claimants do not need to request medical evidence themselves as DWP staff manage evidence gathering. However, it is often the evidence provided through DWP that the client may disagree with and wish to get an alternative view. They may, for example, wish to query the medical assessment for employment and support allowance (ESA) provided on behalf of DWP by Atos Medical Services.   DWP may ask the GP for evidence but this will be via a pro forma that may be inadequate in explaining the patient’s disability and how it affects them.
The renewal of the issue of getting medical evidence comes at a time when our clients are probably more likely than ever to need such evidence. Many are being made to undergo more regular medical reviews for ESA awards.   Some clients are trying to claim Personal Independence Payment (PIP), a medically-based disability benefit, while existing DLA claimants face having to go through the PIP medical assessment in future to get transferred to that benefit.   Part of the thinking behind the introduction last year of ‘mandatory re-considerations’ – the step clients must now go through in challenging decisions before being allowed to submit an appeal – is that the DWP gets its decisions right earlier in the claims process. So clients are being encouraged to get additional medical evidence to help to make that happen.
DWP decision makers, and appeal tribunals, have to consider and weigh up all evidence available to them, regardless of whether this is provided by the claimant or via DWP. Evidence might come from carers, psychologists, occupational therapists and social workers, among others. The important point is that the evidence should be relevant to the qualifying conditions for the welfare benefit that the client is trying to obtain.   The reality is that where the benefits rules relates to the nature and extent of the claimant’s disability, decision makers and appeal tribunals tend to give more weight to medical than non-medical evidence. So for those benefits – ESA, PIP, and DLA for some existing claimants – it is especially important to consider getting supporting medical evidence.
You can write, with your client’s signed consent, to their GP, consultant or other health or social care professional. But it is very likely that where they have a consultant treating a main disabling condition the client will know much more about the condition and how it affects them than the GP. Where your client has multiple health problems their GP could be in the best position to provide an overall picture of those problems.
If you request a letter or report from a doctor or other health professional regarding your client’s limited capability for work for an ESA claim, or about entitlement to PIP, you might ask the doctor to include the following:
• Patient’s name, DOB and national insurance number
• Confirmation of the main disabling conditions/illnesses
• Medication and treatment, and referrals made to other health services eg. physiotherapy
• Comments on the patient’s ability to carry out the activities that are relevant to your client in the ESA work capability assessment or the PIP assessment (as applicable), including the effect of any pain or fatigue.   The last bullet point is very important as such specific comments from a doctor can help a decision maker or appeal tribunal to focus on the activities that the claimant submits they have difficulties with.
If the letter is required for an appeal it is important to ask the doctor to comment on the patient’s circumstances at the date of the relevant decision, especially where it has been some time since the decision was made.   It is best to avoid asking ‘leading’ questions or anything that suggests you are telling the doctor what to write. If the case goes to an appeal tribunal the tribunal judge may ask to see a copy of the request that was made to the doctor.
Payment
Generally only GPs or private health professionals require payment for providing a letter. You should be told in advance if a charge will be made to your client for providing the evidence and how much it will be.   For many clients it can be a battle to obtain and maintain the benefits they are entitled to. Independent medical evidence is a crucial weapon in that battle which clients and their representatives will have to continue to seek where required. But it may be harder and more expensive to obtain in future.
Links www.disabilityrightsuk.org/ getting-medical-evidence-appeal
Charlie Callanan is a welfare rights adviser with over 15 years experience in the charitable and statutory sectors.

Giving people a voice in their history

In our series introducing historians working in the growing field of learning disability history we meet one of its pioneers, Professor Jan Walmsley. Co-author of numerous books and articles combining oral history with archival research, Jan explains how, and why, she has supported people with learning disabilities and their families to have a voice in telling their own history.

 

I currently hold the honorary title of Professor in the History of Learning Disability at the Open University. As far as I know I am unique in this respect, though I am sure I’ll soon have company as the subject is becoming increasingly popular.

 

This was not the case in the mid-1980s when I first became interested. I took a degree in history, graduating in 1971, then by a complicated set of events, found myself project managing a learning package called ‘Mental Handicap Patterns for Living’ at the Open University in 1985. It was my first real exposure to learning disability and I was quite surprised at the content. It all seemed so obvious. Why did it need an education package to persuade people that people with ‘mental handicaps’ should enjoy an ordinary life? To me, an outsider, it was obvious. But of course it was not obvious, because of the past.

 

This is what sparked my interest. When did day centres start? What was the history of hostels? Why create a learning package to teach the obvious? I started reading, but could not find the answers.

 

In 1990 I began a PhD. I interviewed women and a few men with learning disabilities about ‘caring’. To be able to ask the right questions, I set about reconstructing the history of services in Bedfordshire where my respondents lived. In the course of this I met an inspiring woman, Rene Harris, who had started Luton Mencap in 1955. I owe much to Rene whose moving stories brought the subject to life. I also spent two weeks in the Bedfordshire Record Office with its amazing collection of archives relating to twentieth century history. The two experiences taught me that to understand the recent past you need both good oral informants and a sound knowledge of written sources.

 

I am proud to have contributed to a growing interest in the subject. In 1994 Dorothy Atkinson and I started the Social History of Learning Disability Research Group at the Open University which has helped put the subject on the map. It remains dedicated to hearing from different stakeholders, including family carers, staff, and people with learning disabilities, as well as academic historians, to create a rounded picture of the past.

 

My most recent project has been gathering staff memories of working at Princess Marina Hospital in Northamptonshire, asking what that can teach us about good practice.

 

Underlying themes

Why does it matter that we remember the past? My sense is that policy has lurched from institutions to community care to personalisation today. Each time we repudiate the past, believing they were wrong, that we know better. But people who cannot meet our expectations of independent adulthood continue to challenge us, as they did our ancestors. And many underlying themes remain the same. Parents still worry about what will happen when they die, as did Rene Harris. Institutions continue under a different name. Scandals still happen. Just changing the words in policy does not change the underlying challenges. Recognising this should help us manage the present better.

In search of ‘an ordinary life’

Integrate organised a day to explore what people want from their lives and how they can be helped to achieve it. Sue Pemberton reports.

 

Integrate along with other organisations across the country have been working with Paradigm to help the people they support pursue an ordinary life.

 

After being part of a national pilot and committing to Pardigm’s aim of  ‘an Ordinary Life for All’, Integrate decided to hold a conference for the people they support, their families, support staff, trustees and anyone else with an interest in the organisation.

 

The day was entitled ‘Your day, your say’ and was planned with a number of Integrate’s Quality Checkers (individuals who receive a service but also check the quality of the services Integrate provide to others), a team leader, a manager, several senior project workers and the CEO.

 

Integrate have always believed that values have to be demonstrated throughout the organisation so it was planned to be a day with joint facilitation and participation from all involved. ‘Ordinary Lives’ needs the support of the management team to succeed so having some of the senior managers committed to it helps to spread the importance of the message round the organisation.

 

Apprehensive

We were apprehensive that people would not turn up so it was gratifying that 69 people came along to make their voices heard about the support they receive and how things could be improved.

 

Cafe style discussions took place with lots of drawing and visuals to highlight individuals’ understanding, first about what support is and then about good support. People wrote or drew their own message on a sunray and attached it to our sun expressing what good support meant to them. We had to extend the sun as there were far too many sunrays to place around one sun.

 

Many of the comments were positive. Good support is:

“Planning things together and working as a team”

“Staff are polite and helpful”

“They listen to me”

“Staff help make things fun and enjoyable”.

 

It was heartening to know that people think they receive good support and have the opportunity to develop their lives.

 

After a break for a pie and peas lunch, followed by some lovely cream cakes, we went on to demonstrate, using role-play, good and not so good support. Armed with green cards for good support and red for not so good, the role-play was accompanied by lots of cheering and booing, showing that people have a pretty good idea of what they want from a support worker.

 

People moved from table to table, giving them the opportunity to discuss their ideas with as many people as possible. Finally, circles were placed on the floor and people chose the six most important things they felt we needed to follow up.

 

A positive development was that several people came forward to be part of a focus group to continue the work.

 

Team leaders, manager and staff were told in no uncertain terms that next year the Quality Checkers group, along with the new task group, will be facilitating the next event.

 

Everyday ups and downs

This was a remarkable day, giving people a voice and demonstrating who knows best about the support someone needs and receives – the person themselves.  It was interesting but not surprising that people don’t want anything different from you or me in their lives, just an ‘ordinary life’ with the everyday ups and downs we all experience. They just want some help to cope with it or indeed some help to make it happen.

 

The new task group meets monthly, following up actions from the conference and then developing their own terms of reference. The group uses the ‘Doughnut’ Person Centred Tool‘ to show what are and what are not their responsibilities as a group.

 

Several of the group attended the My Life conference at Ribby Hall near Blackpool in January and have grown in confidence at presenting, representing and feeding back to groups of people, expressing their views and speaking up for others.

 

We hope we are making a difference and that this is the start of people having more autonomy and more of a say in creating their ‘ordinary lives’.

 

Sue Pemberton is CEO of Integrate and a Community Living adviser.

Jacob – an ambiguous portrayal of an ‘idiot’

Simon Jarrett argues that George Eliot’s loveable but pitchfork-wielding ‘idiot’ Jacob represents a challenge to social progress in the mid-nineteenth century.

 

Brother Jacob

By George Eliot

Published 1860 (43 pages)

 

George Eliot published her novella Brother Jacob in 1860 at a time of great social change. A new class of tradesmen and small-business people were challenging the traditional power of the land-owning classes and new ways of capitalist thinking were dominating society.

 

Radical thinker

Eliot herself was part of this process of change. As a woman writer, intellectual and radical political thinker, she believed that her writing would not be taken seriously by male society and therefore swapped her real name of Mary Ann Evans for the masculine pen name of George Eliot.

 

In this context she told the story of Jacob, ‘a very healthy and well-developed idiot,’ one of seven sons of a modest, rural family.

 

Jacob is very large, wears a smock and carries a large pitchfork, in a classic representation of the ‘village idiot’. His wicked brother David dreams of starting a confectionary shop, selling delicacies to the booming, consumer-oriented middle class. Planning first to make his fortune in the West Indies, he steals the few guineas his mother has saved over the years.

 

Almost foiled by Jacob, who surprises him in the act of burying the money prior to fleeing the family home, David only escapes by convincing him he is burying the guineas so that they will grow as sweets.

 

Years later David returns to England with a false, aristocratic identity and a modest fortune, to open a confectionary shop in a nearby town. The shop is successful but his plans to marry into a wealthy merchant family are foiled by his idiot brother. Jacob bursts into the shop one day, terrifying David’s future wife and prospective in-laws. Stuffing himself with David’s magnificent pies and sweets and never letting go of his pitchfork, he hugs David and tells the in-laws that this is his brother ‘Zavy’ who has come back from the Indies with his mother’s ‘zinnies’ (guineas), now grown into the sweets he sees before him.

 

David’s deception is unmasked and he is jeered out of the village, his business ruined.

 

Jacob is in some ways a classically ambiguous Victorian portrayal of an idiot. He is endearingly innocent and gullible but alongside this loveable simplicity lie his dangerousness, his menacing pitchfork, and his propensity to violence if thwarted in his animal desires. His innocence and truthfulness unmask the manipulations of his evil brother.

 

New capitalism

Yet Jacob represents something else. The confectionary shop changes the town. Housewives and maids no longer cook but buy luxurious prepared foods. This leaves them, dangerously, with time on their hands. The new capitalism represents a threat to the social order and challenges assumptions about the place of women. The actions of the simpleton Jacob restore the old order. The shop closes and the women start to cook again.

 

For Eliot Jacob may represent a loveable, traditional past, but he is also a threat to progress with his obstinate, timeless, unchanging ways.

“It’s our freedom”

Many people with learning disabilities know what it’s like to spend time in an institution. That’s why their voices should be heard above all others in the campaign to get them closed. Rosemary Trustam attended a conference at which the rallying cry was: “It’s our freedom”.

Our Voices, Our Choices, Our Freedom was a one-day conference organised by CHANGE and Lumos.

 CHANGE is a leading national human rights organisation led by disabled people based in Leeds which employs people with learning disabilities.  Lumos was set up by J.K. Rowling when she learned that children in institutions in Europe were being held in cages. Lumos, the spell from Harry Potter which sheds light in dark places, aims to shine light on institutions to get them closed and children cared for in their family or substitute family.

 The aim of the conference was  for people with learning disabilities to share experiences and views – both of institutions and solutions – and to develop their proposals on closure of institutions to take to Government.

The conference was chaired jointly by Catherine from CHANGE, a mum with learning disabilities employed by CHANGE to train professionals in parenting, hate crime and sex and relationships, and Gavin Harding MBE, founder of Voices for People, a representative on the Winterbourne View Joint Improvement Board and a local district councillor, recently appointed Selby’s deputy mayor.

Shaun Webster, a project coordinator and lead on the joint work with Lumos in Europe at CHANGE, has been helping Lumos to develop the voices of children and young people giving them the benefit of CHANGE’s expertise in peer support, communication and co-leadership.
Shaun described himself as a parent, grandparent and a person with learning disabilities. He told delegates that he worked, lives on his own, has learnt to speak up for himself and knows people look up to him and respect him. “Although some of you may feel you have less power than me, I didn’t always live like this”, he said. He described how he used to be treated like a child, often felt scared, worried he would lose his support and never believed he could ever live on his own. He had no confidence as his support worker held the power and determined what he could do.
Bullied
Shaun got a job in a warehouse but wasn’t allowed to try out other parts of work and he was bullied. Things changed when he got a good support worker, properly trained who respected him, took time and asked what he wanted, valuing his opinions and believing in him.
Working for CHANGE on the same pay and an equal basis has given him confidence and developed his skills. He knows his rights and has the freedom to decide how he wants to live his life, speaking out if he’s not happy.
Shaun spoke passionately about the power of coming together and supporting each other to have a voice and about people being included as equals and experts, not given token involvement. “Today is about closing down institutions. People’s ideas are needed about what should happen after Winterbourne,” he said.

Institutions are usually big buildings with strict rules and routines, where  people’s  ‘choices’ are dictated and their rights to a private family life denied. Georgette Mulheir, Chief Executive Officer of Lumos,  spoke of the damage done to children, particularly the most severely disabled and poorest whose families can’t afford to visit. “They are scarey environments with lots of abuse,” she said. Without the experience of making small everyday choices, young people struggle to make bigger choices, such as where they want to live. They have to learn to be free.

Like a prison
Expert by experience Daniel Doherty started his journey in a foster family but at six years old “I did ‘something I shouldn’t have done’”, he said. He was told he was going on holiday but was sent to an institution where he lived until he was 16 years old. “It was old, dark and damp – like a prison”, he said. He had no idea why he was there and had lost his friends. Going out was a privilege and allowed ‘only if you were good’. If you were bad you were put into a quiet room for punishment. There were no choices. You could be punished for asking too many questions.
During the Queen’s Jubilee celebrations, when Prince Charles came, people were doped up to stop them saying anything embarrassing. They had to share baths so bathing was usually in dirty water. Food was ‘like porridge’. Nothing personal, like pictures, was allowed. “I felt like an animal and that the only way I would get out would be in a box”. Their only freedoms were coded songs they sang to warn each other of approaching staff – for example, if people wanted some privacy together.
When the institution closed in the early 1990s under the Community Care Act, he was placed without support in a communal flat, away from an older friend who has since passed away. Although Daniel’s life has changed now and he has a lot more choice and control he still has bad dreams and wakes sweating.

It’s easy to forget just what happened to people in institutions and what can still happen even in smaller services that take control over people’s lives.

These are some of the delegates’ comments :

“They made me have my hair cut and hide under the bed when my sister came”.

“I was only told last minute about the institution closing“.

“Staff on one shift were very good, but on the other shift had a different approach and that’s when the problems started”.

“I didn’t know the institution was closing – no one told us; we were just moved”.

“I didn’t like having to share in a dormitory – one lady used to bang on the door – it was very upsetting and scarey”.

“When I went into meetings I didn’t understand what they said all the time”.

“I couldn’t put pictures of my family up on the wall”.

“I didn’t get the choice to do things I wanted to do – doors were locked and I needed staff to go to the shops”.

“I didn’t talk about my worries with staff or family as I didn’t want to worry them”.

“When I moved I didn’t know what it would be like until I was there”.

“Worst was being far away from my home and family. It wasn’t easy to talk to staff as they put things in the day notes”.

Messages

Care Minister Minister Norman Lamb was unable to attend because of a family bereavement. He sent a video message promising a summit meeting in September to hear delegates’ proposals. However, Zawar Patel, the DoH lead for learning disabilities, was there and heard the messages.

The delegates’ message “It’s Our Freedom” and the conference activities were spread through social media with the twitter hashtag #voiceschoices seen over 1.3 million times during the day.The conference title became a rallying cry shouted out by delegates illustrated further by a conference song, ‘We have the right to live our lives; We are proud disabled people…’

owerful feelings – indignation and anger that abuse is continuing both in institutions but also in the community where services were being cut – were expressed. There was also a knowledge and confidence of their rights and the need to speak out to ensure they get them.The energy of the day was felt too through the delegates’ contributions to the debate – from the floor and within the workshops – which led to the development of the demands they wanted to present to Norman Lamb.

http://www.changepeople.org/blog-and-news/our-voices-our-choices-our-freedom-conference-presentations/

What people want from the government

•  They should stop building new institutions – use the money to support people in the community;

• Everyone to have opportunities for jobs, with training of health professionals mandated to have someone with a learning disability involved in delivery;

• People with learning disabilities to be employed in care and involved in the whole process including the top level of work and checking services – and to be paid for it;

• There should be no residential homes for people with learning disabilities and people should be offered ordinary housing;

• People should be helped to develop confidence, be introduced to new experiences and have someone to stand up for them or help stand up for themselves;

• There should be more role models of people with learning disabilities;

• Things should be made more accessible.

One need, independent living

Female researcher

A research project run jointly by the University of Central Lancashire and the Children’s Commissioner looked at the obstacles to independence for young people with disabilities. The findings are reported by Jane Lloyd, Zac Carr, David Corr, Chris Knowles, Ellie Reed, Daniel Sheehan and Rosie Winstanley

 

We are a group of young people armed with the experience of having a diverse range of disabilities including learning disabilities. Between November 2012 and August 2013, we were part of a team who carried out a research project with staff from the University of Central Lancashire and the Office of the Children’s Commissioner. One of the research staff is writing this article with us about independence.

 

Things that increase independence

A lot of the young people and families talked about the transition from being a child to a young adult. People in the research said that the two most important things are that young people have timely clear assessments of what they need and that the assessments should result in a plan to help them get what they need. Plans should include specific advice; for example, physiotherapy, to make sure adaptations are in place if they are needed.

 

Young people in the research also said that having community activities that they enjoy, and which suit their abilities and interests, are important ways of increasing independence. We also think it’s really important that when disabled young people begin to get older, at age 16 and 17, they should be able to do grown-up things, like going to stay in a hotel.

 

After reading the experience of people who took part in the research, we think it’s very important that as disabled young people with learning disabilities get older they get the support to learn new activities and life skills, like cooking, ironing and looking after pets. One young person we interviewed thought that school should help young people learn these life skills.

 

Young people also talked about needing help to make important decisions, like where to live. They thought their parents might be able to help, but they said (and we think it’s very important) that young people with learning disabilities’ rights to have their own voices heard is supported.

 

One young person said: “It shouldn’t be the parent who decides where you live”.

 

We think it’s important for disabled young people to have someone they know and trust who can speak for them if they need it; but the person needs to know how to keep in the background until they’re needed!

 

Some of the young people in the research thought that having somewhere to live, away from parents helped them feel independent. After reading the interviews, and from our own experiences, we think that having somewhere to live that respects disabled young people, and protects their dignity is really important. This means having their own private space that gives them privacy if they live in a shared house. Young people described having money to be able to choose basic things like clothes as important. Some people said they would want the right and space to have a pet.

 

We believe that to be able to live independently, young people with learning disabilities need the right help; and that support staff and personal assistants need to have training to learn how to do it.

 

Things that make it hard to be independent

We learnt, from our own experiences and hearing about the lives of the people in the research, that the way young people with learning disabilities are treated can make a big difference to how independent they feel, and become.

 

From the stories of people in the research and our personal  experiences, we think that being treated like ‘kids’ with adults always thinking young people who have learning disabilities should be with their parents, makes it difficult to get any independent experiences.

 

Always doing things, and being with carers or parents makes it hard to get used to doing things without them. The way young people are treated and talked to can also make it difficult for them to become independent: for example not being respected, or being ‘shouted at’; and adults making assumptions about what young people with learning disabilities can, and can’t decide for themselves.

 

We learnt about things that negatively affect the choice of where young people with learning disabilities live. Parents believing that no one can care for their son or daughter better than they can results in young people with learning disabilities missing out on experiences.

 

Young people having a choice is very important. Some people might not want to move out.

 

One young person said: “Having to live in shared accommodation can be difficult if you’re not used to sharing”.

 

Things that help get a job

We think one of the most important things to help young people find work is that they should have a career path that interests them. The young people in the research said they need to have volunteering opportunities to try out, learn and get experience of work. They also thought schools should help them get voluntary work experience.

 

The young people also said that employers need to know how to help young people who have learning disabilities, through giving them help and support to learn; for example, by showing them what to do.

 

We hope you have enjoyed reading about our research. As well as writing a written report of the things we found out about, we produced a DVD to help explain what we learnt. One of us even appeared live on the BBC Breakfast programme! We showed the DVD to parents, young people and services for young people. We are planning to create a website as a result of the research and have met with MPs at the House of Commons to present our findings.

 

You can find full details of the project at: OCC website http://www.childrenscommissioner.gov.uk/content/publications?search=See+things+our+way

 

Key Messages

• Being treated like ‘kids’ with adults always thinking young people with learning disabilities should be with their parents, makes it difficult to get any independent experiences.

 

• To live independently, young people with learning disabilities need the right help; and support staff and personal assistants need to have training to learn how to do it.

 

•Young people with learning disabilities’ right to have their own voices heard should be supported.

 

• Having somewhere to live that respects disabled young people, and protects their dignity is really important.

 

• Young people with learning disabilities should be supported to have a career path that interests them and volunteering opportunities to try out, learn and get experience of work.

 

• Employers need to know how to help young people who have learning disabilities, through giving them help and support to learn; for example, by showing them what to do.

How can we make sure we never again get the kinds of institutional scandals that keep happening?

Rosemary Trustam reports on Paradigm’s seminar Connecting Our Voices

 

A new groundroots energy has sprung up against the abuse in institutions, prompted in particular by the #JusticeforLB campaign. An independent review, fought for by the family, found that the death in the bath of Connor Sparrowhawk known as LB (Laughing Boy) was preventable. He was in the unit for 107 days so the family started the 107 days campaign to ensure that individuals and services are held to account and that things are put in place to ensure this can never happen again. They invited people and agencies to adopt a day with an activity to highlight awareness and raise funds. (For details of the objectives go to: http://107daysofaction.wordpress.com/what-does-justiceforlb-look-like/ )

 

Community Living went to Paradigm‘s seminar Connecting Our Voices which had adopted day 55. Supported by Nan Carle, the seminar aimed to connect people and highlight injustices like this and work together to develop some action. LB’s presence was symbolised by an empty chair and people from around the country shared their horror about his death.

 

Dr Sarah Ryan, LB’s mother, was the keynote speaker. She spoke of public issues – everyone’s concerns, and private troubles – personal to their family. She described the continued adherence to a medical model by authorities who define the ‘condition’ as the ‘problem’ rather than acknowledging the role of society – the social model. We saw LB in the midst of his family, lovable, funny, “a cool and querky dude who was great to hang around with”. At 18 he suddenly became very anxious and unlike himself, unpredictable, hostile and aggressive. Other than Direct Payments there was no support. He attacked his mum, who he had always idolised, and when he punched his school PA was taken to a local assessment and treatment unit. Sarah described this as “the worst thing I’ve ever done”. They thought it was a specialist unit with a team of specialists who would assess and work out what was the matter. What they found was a badly run unit with staff who didn’t listen, who insisted he was an adult and who took no notice of the family’s description of his epilepsy. He’d always been sensitive to medication changes but the unit gave him an anxiety drug and didn’t notice he’d had a seizure. The family was unaware he was having two to three hour baths unsupervised as ‘part of his treatment’ which resulted in him drowning in the bath. They had to fight to get an independent report and to get it made public. The judgement was that this was a preventable death. As staff had been told by Sarah that he had had a seizure, they had the opportunity to prevent it.

 

The mother and brother of Chris from Wigan were there to tell their story – Chris had been sent away and was at risk of being sent even further away. This family’s experience showed how authorities used their power to act against people’s best interests and ignore families. The family described how they felt like ‘ghosts’.

 

People contributed ideas to counter complacency in accepting low standards, ignorance of what makes good support and the over-reliance on systems to protect individuals. People were appalled at the lack of commitment to bringing Chris home and offered their voices and some practical support to Chris’s family in their fight to get a local solution.

 

Day 82 was adopted by Manchester Institute of Education’s Learning Disability Studies bi-annual conference. They have been campaigning to save their unique course with people with learning disabilities embedded in its recruitment, teaching, assessment, research and ownership. People with learning disabilities are rarely included in academia as experts teaching and researching. Excluding them leads to the ‘them’ and ‘us’ culture amongst professionals who think they know best. In LB’s case this was seen in judgements that dismissed his epileptic seizures as attention-seeking behaviour and ignored the family’s knowledge.

 

The course leaders have managed to get the university’s commitment to embedding the learning disabilities steering group members’ input into a wide range of professional courses. Dr Craig Blyths, director of the programmes, said: “We fought long and hard to try to get them to see the error of their ways”. Despite the decision to discontinue the course in the Institute of Education, there were encouraging signs of continued commitment with their support for the conference and funding for the partnership steering group to go to Germany later in the year.

 

Day 82 was chosen to mark the outrage at what had happened. Although people unconnected with learning disabilities do care many people don’t know about it. Sarah felt that the health and adult services’ culture and structure underpin the problem and give little value to the lives of people with learning disabilities. Oxfordshire Local Authoriy, Sarah said, talk but don’t act. The Southern Health Group closed the unit but then banned baths in the next door unit even though no one there has epilepsy! People need to learn about the appalling provision and commissioners should know what is needed. It was clear to all of us that services do not listen to families nor do they understand the value of their knowledge and real partnership working.

 

The 107 days campaign also drew attention to other heart-breaking cases: Nico who choked to death the summer before Connor’s death in Southern Health Unit in Oxfordshire. Nico needed good health support for his complex needs in the community – the speech therapy support for his swallowing ceased when he moved from children’s to adult services; 11-year old Josh from Cornwall admitted to a unit in Birmingham and two years later was no nearer to returning to locality until publicity of his family’s over 500 mile trip at weekends to visit him led to Norman Lamb asking the NHS and local authority to work together for a solution.

 

Recently we’ve heard about Claire, a young woman from Swansea, whose family got an injunction to stop her being moved to Brighton but lost the court case and the Health Board has moved her at short notice and without warning the family, saying they couldn’t cope with her challenges. http://www.bbc.com/news/uk-wales-south-west-wales-28611500

 

It was 1993 when the Mansell reported on the damage being done by out-of-area placements. It advocated ‘exemplary models’ and yet, despite all the progress made and the move towards ordinary community living and personalised support, we see backwards movements. https://www.kent.ac.uk/tizard/research/research_projects/dh2007mansellreport.pdf

 

No one should be in any doubt that the conditions in closed institutions where people are set apart from the rest of us make for neglect and abuse. People’s voices are lost, families or supports are kept apart – and no one listens. Imagine even if you are articulate and know your rights how hard it might be – but when you are not…

 

There are now more voices acting together. The Campaign for a Fair Society is calling for action to close assessment and treament units and is offering practical workable solutions. http://www.campaignforafairsociety.com/ The Campaign has joined People First England, representing people with learning disabilities, the Housing and Support Alliance, representing community organisations and professionals, and Bringing Us Together, representing families, to form the Learning Disability Alliance for England in a call to unite to bring about change. Everyone is urged to sign up to this campaign.

 

Sign up today and make sure we start to make the government accountable. Send your MPs CaFS’s call for action statement and ask for their support.

 

http://us8.campaign-archive1.com/?u=a06a3d71c53c96bcbd7c5865b&id=2f0d73198b&e=0075a88692.

It’s time for a radical strategy to end the detention of over 3,000 people in institutions

Campaign for a Fair Society calls for a radical strategy to end, once and for all, the scandalous detention and placement of over 3,000 people with learning disabilities and/or autism in institutions for long term care away from their homes.

 

In the wake of Winterbourne View, voluntary and gradual reform of the assessment and treatment system has been an abject failure and there are more people in this fundamentally abusive system now than a year ago.

 

The campaign calls on political leadership, and all those with a role to play in planning, commissioning, providing and regulating care, to ensure that assessment and treatment is provided close to home. De-commissioning of out-of-area placements should be combined with a strategy of building local provider capacity for community solutions and strengthening local support.

 

Respect for people’s human rights to liberty under the EU Convention on Human Rights, Article 5 should be paramount and all decisions about care must comply with the requirement for the ‘least restrictive option’ under the Mental Capacity Act 2005 and Deprivation of Liberty Safeguards.

 

Decisions about care must involve families and/or advocates.

 

Providers who serially detain people with learning disabilities and/or autism rather than successfully assess and treat them towards resettlement should be de-registered.

 

Campaign for a Fair Society believes that “…human rights are for everyone, including the most disabled members of our community, and those rights include the same right to liberty as everyone else” (Hale 2014).  People should only ever be detained or deprived of their liberty unavoidably and temporarily under the correct legal safeguards with the outcome of living a safe and fulfilling life in the community always in view. Anything less is inhumane and intolerable in a fair society.

Art in the zoo – disabled artists point the way

In the beautiful surroundings of a small children’s zoo in a West London park, visual artists with and without learning disabilities create, exhibit and sell work alongside one another. Their studio is a converted bakehouse. This is the Brent Lodge Park Act Collective. Founder, artist and advocate Matthew Coulam explains how it all came about.

 

Working as an advocate for Ealing Mencap I met a number of people with learning disabilities who were interested in creating visual art but found mainstream art classes inaccessible. Local day services held art sessions but these tended to be led by care staff, were not in a studio and were not always focused on a clear end product.

 

I began thinking of ideas for a dedicated visual arts space and gathered together a steering group of local professional artists, council employees and artists with learning disabilities who had expressed an interest in the idea. Through the group I was introduced to two former art tutors from Southall College, Sarah Fraser and Lynda Elson, who had also identified a need. They had tutored talented artists who had completed the arts course but had very few opportunities to continue to develop their artistic skills afterwards.

 

Finding a studio

We developed a business case and looked for venues. Brent Lodge Park Animal Centre, a small council-run children’s zoo in a park, was identified as a possible location. Animal centre manager Jim Gregory showed us a disused former bakehouse which would make a perfect studio and gallery space. We made a reciprocal arrangement with the animal centre that the studio building would be rent-free and in exchange we would create interpretive signs for animal enclosures and merchandise promoting the centre. We successfully raised the funds, the building was renovated, and sessions began to take place in 2010.

 

Four years after we were set up, the BLP Art Collective generates enough income from commissions, sales and art sessions to support itself financially. I voluntarily run a drop-in session every Sunday which is attended by a regular group of artists who work on anything from drawing and painting to mosaics and model-making. We also run sessions during the week led by professional tutors and purchased by individuals privately or using personal budgets.

 

 

Achievements

We have had a number of achievements over the past four years:

 

•Work experience as gallery curators – this included staffing and working as ‘artists in residence’ for the Limbo13 exhibition at the Crypt Gallery in Euston.

 

• Work with Ealing’s Youth Offending Team – The BLP Art Collective helps the team run their Summer Arts Award scheme. A team of young people are taught an artistic technique by one of our tutors and they then buddy up with our regular attendees and pass the skill on to them through a piece of joint work. In 2012 the Ealing Youth Offending Team gained a prestigious national  Gold Arts Mark award for this work. Two young people from the Youth Offending Team now volunteer with us.

 

• Creating signs for enclosures and making merchandise for a gift shop which opened on-site last year – this has been incredibly successful and has led to the Animal Centre gaining the Small Collection Award from the British and Irish Association of Zoos and Aquariums.

 

• Exhibitions of work including the Acton W3 gallery – nearly every artist sold work at the exhibition last year which was hugely successful. One of our artists in particular, Keith Miller, has had an offer of a solo exhibition.

 

More of the Art Collective’s work can be seen at:

http://ealingartscollective.

blogspot.co.uk/

It’s time to end out-of-area placements in closed institutions

Over 20 years after the Mansell report deploring the damage being done by out-of-area placements was published we are still hearing about scandalous cases of abuse in institutions. Rosemary Trustam attended two events aiming to bring about a united movement to bring about lasting change.

  

A new grassroots energy has sprung up against the abuse in institutions, prompted in particular by the #JusticeforLB campaign. An independent review, fought for by the family, found that the death in the bath of Connor Sparrowhawk known as LB (Laughing Boy) was preventable. He was in the unit for 107 days so the family started the 107 days campaign to ensure that individuals and services are held to account and that things are put in place to ensure this can never happen again. They invited people and agencies to adopt a day with an activity to highlight awareness and raise funds. (For details of the objectives go to: http://107daysofaction.wordpress.com/what-does-justiceforlb-look-like/ )

 

The 107 days campaign also drew attention to other heart-breaking cases: Nico who choked to death the summer before Connor’s death in Southern Health Unit in Oxfordshire. Nico needed good health support for his complex needs in the community – the speech therapy support for his swallowing ceased when he moved from children’s to adult services; 11-year old Josh from Cornwall admitted to a unit in Birmingham and two years later was no nearer to returning to a nearer locality until publicity of his family’s over 500 mile trip at weekends to visit him led to Norman Lamb asking the NHS and local authority to work together for a solution.

 

Recently we’ve heard about Claire, a young woman from Swansea, whose family got an injunction to stop her being moved to Brighton but lost the court case and the Health Board has moved her at short notice and without warning the family, saying they couldn’t cope with her challenges. http://www.bbc.com/news/uk-wales-south-west-wales-28611500

 

It was 1993 when the Mansell reported on the damage being done by out-of-area placements. It advocated ‘exemplary models’ and yet, despite all the progress made and the move towards ordinary community living and personalised support, we see backwards movements. https://www.kent.ac.uk/tizard/research/research_projects/dh2007mansellreport.pdf

 

No one should be in any doubt that the conditions in closed institutions where people are set apart from the rest of us make for neglect and abuse. People’s voices are lost, families or supports are kept apart – and no one listens. Imagine even if you are articulate and know your rights how hard it might be – but when you are not…

 

 

Changing Attitudes Changing Lives

 

Day 82 was adopted by Manchester Institute of Education’s Learning Disability Studies bi-annual conference. They have been campaigning to save their unique course with people with learning disabilities embedded in its recruitment, teaching, assessment, research and ownership. People with learning disabilities are rarely included in academia as experts teaching and researching. Excluding them leads to the ‘them’ and ‘us’ culture amongst professionals who think they know best. In LB’s case this was seen in judgements that dismissed his epileptic seizures as attention-seeking behaviour and ignored the family’s knowledge.

 

The course leaders have managed to get the University’s commitment to embedding the learning disabilities steering group members’ input into a wide range of professional courses. Dr Craig Blyths, director of the programmes, said: “We fought long and hard to try to get them to see the error of their ways”. Despite the decision to discontinue the course in the Institute of Education, there were encouraging signs of continued commitment with their support for the conference and funding for the partnership steering group to go to Germany later in the year.

 

Day 82 was chosen to mark the outrage at what had happened. Although people unconnected with learning disabilities do care, many people don’t know about it.

 

Dr Sarah Ryan, LB’s mother, was the keynote speaker. She spoke of public issues – everyone’s concerns, and private troubles – personal to their family. She described the continued adherence to a medical model by authorities who define the ‘condition’ as the ‘problem’ rather than acknowledging the role of society – the social model. We saw LB in the midst of his family, lovable, funny, “a cool and quirky dude who was great to hang around with”. At 18 he suddenly became very anxious and unlike himself, unpredictable, hostile and aggressive. Other than Direct Payments there was no support. He attacked his mum, whom he had always idolised, and when he punched his school PA, was taken to a local assessment and treatment unit. Sarah described this as “the worst thing I’ve ever done”. They thought it was a specialist unit with a team of specialists who would assess and work out what was the matter. What they found was a badly run unit with staff who didn’t listen, who insisted he was an adult and who took no notice of the family’s description of his epilepsy. He’d always been sensitive to medication changes but the unit gave him an anxiety drug and didn’t notice he’d had a seizure. The family was unaware he was having two to three hour baths unsupervised as ‘part of his treatment’ which resulted in him drowning in the bath. They had to fight to get an independent report and to get it made public. The judgement was that this was a preventable death. As staff had been told by Sarah that he had had a seizure, they had the opportunity to prevent it.

 

 

Sarah felt that the health and adult services’ culture and structure underpin the problem and give little value to the lives of people with learning disabilities. Oxfordshire Local Authority, Sarah said, talk but don’t act. The Southern Health Group closed the unit but then banned baths in the next door unit even though no one there has epilepsy! People need to learn about the appalling provision and commissioners should know what is needed. It was clear to all of us that services do not listen to families nor do they understand the value of their knowledge and real partnership working.

 

 

Connecting Our Voices

Community Living went to Paradigm‘s seminar Connecting Our Voices which had adopted day 55. Supported by Nan Carle, the seminar aimed to connect people and highlight injustices like this and work together to develop some action. LB’s presence was symbolised by an empty chair and people from around the country shared their horror about his death.

 

The mother and brother of Chris from Wigan were there to tell their story – Chris had been sent away and was at risk of being sent even further away. This family’s experience showed how authorities used their power to act against people’s best interests and ignore families. The family described how they felt like ‘ghosts’.

 

People contributed ideas to counter complacency in accepting low standards, ignorance of what makes good support and the over-reliance on systems to protect individuals. People were appalled at the lack of commitment to bringing Chris home and offered their voices and some practical support to Chris’s family in their fight to get a local solution.

 

There are now more voices acting together. The Campaign for a Fair Society is calling for action to close assessment and treament units and is offering practical workable solutions. http://www.campaignforafairsociety.com/ The Campaign has joined People First England, representing people with learning disabilities, the Housing and Support Alliance, representing community organisations and professionals, and Bringing Us Together, representing families, to form the Learning Disability Alliance for England in a call to unite to bring about change. Everyone is urged to sign up to this campaign.

 

Sign up today and make sure we start to make the government accountable. Send your MPs CaFS’s call for action statement and ask for their support.

Giving meaning to people’s lives

A new DVD from United Response shows the impact of person centred active support. Review by Max Neill

 

Promoting Person Centred Support and Positive Outcomes for People With Intellectual and Developmental Disabilities. United Response and the Tizard Centre (DVD) 2014

 

At two hours and 22 minutes, making this DVD must have been a truly major undertaking. It has a whole cast of people who have been involved in making it and I believe their efforts have been rewarded with what will become a valuable resource for supported living services.

 

This training resource will help managers and staff understand what person centred support for people with learning disabilities requires of them.

 

The DVD takes the form of clips from people’s everyday lives with commentary by Bev Ashman and Julie Beadle-Brown. They explain how the idea of ‘person centred action’ fits into a context of person centred thinking and planning, supported by personalised budgets and support from staff with sound values. If these staff are coached and led well, and all these elements are in place, they hope that people using such services can be enabled to live good lives and that, consequently, behaviour that challenges will decrease.

 

The argument is that people should be engaged ‘little and often’ in meaningful activities and relationships, “minute by minute, hour by hour and day by day” as an alternative to the current prevalent practices, shown in research, that people in supported living services receive just eight minutes of staff interaction per hour, only 2 per cent of which is actual help to take part in activity.

 

It is argued that person centred active support is possible without increasing the amount of staff hours because often the more staff a person has, the less support they end up getting as the staff prefer to interact with each other.

 

The video shows how, by using the potential available in each moment and grading their assistance, staff with the right coaching and support can fill those long periods of the day that so many people spend doing nothing with meaningful activities and interactions, whether it’s helping neighbours, cooking or even doing things traditionally seen as staff responsibilities, such as testing fire alarms.

 

Understanding the activity is not seen as a necessity – far more important is the experience of interaction and the relationships it leads to. The scenarios illustrate this again and again, as we see  people gaining presence in their communities and beginning to connect with others while delivering leaflets or newspapers, riding the bus or ordering a meal at the chippy.

 

Film-makers Frameworks for Change did a great job capturing those little glances, smiles and nods that make up those subtle moments of everyday connection that human beings need, such as the easy laughter experienced when supporter and client realise together that they have broken the food mixer.

 

Because of the length of the DVD the best way to use it would be in a series of short bursts, perhaps during staff meetings, so that the different scenarios can be discussed in depth. In each scenario the staff being filmed are modelling positive respectful communication and interaction; ‘show’ works so much better than ‘tell’ when helping staff change their practice.

 

The scenario format was particularly powerful in explaining the ‘SPELL’ framework, designed to improve support for people with labels of autism. Structure, Positivity, Empathy, Low Arousal and Linkage are explained in concrete terms, bringing them to life in a way more people will be able to relate to. Pithy comments like “Low arousal does not mean no arousal” help cement the learning in the memory. It is explained that all human beings benefit from the presence of the elements of SPELL in their lives and that it is not something ‘special’ for disabled people.

 

This is one of the highlights of the DVD and includes a section on the crucial need to include families as much as possible in people’s support.

 

The section on Positive Behavioural Support (PBS) comes late in the DVD which works well because we’ve already met the people whose support is discussed so we have a sense of who they are, before the discussion on how they challenge and how these challenges are dealt with. This is revealed in the moment when a female staff member’s arm is gripped so tightly by the large strong man she is supporting that she can’t pull out. That she is holding a knife in that hand makes the scene more alarming. Because we already know the person, we see that the calm reaction of the staff member and the way she continues her support is entirely appropriate.

 

I feel this section should be watched in conjunction with the one on communication which sets the scene for positive support. It shows how communication is more likely to happen if people are doing something meaningful together, using physical and gestural prompts. It illustrates how communication can be used to create a positive, safe atmosphere without using words.

 

The section on PBS could lead to interesting discussions in people’s staff teams on the balance between humanity and objectivity, between choice and structure in people’s lives and between anxiety reduction and age appropriateness. In each case the DVD resolves the issue by considering what makes sense to the specific person in their own life.

 

The final section on organising and improving support does not shy away from the difficulties of managing supported living services and staff. Again, it illustrates managerial skills, such as coaching, reflection and appreciation with videoed examples in a way that makes them easily understood and therefore more useful than written coaching manuals.

 

Examples of how to increase choice and control are presented – those shown use dichotomous choice making between two alternatives: baking or housework. The other choice clearly illustrated was whether to stop engaging in an activity.

 

Overall, being able to see the natural but skilled way staff are interacting with the people being supported provides a great model for other staff. The keen eye of the filmmakers for those subtle communicative glances, and little moments of comedy that signify the difference between a boring unproductive life and a positive life rich in contribution and relationships is the other great strength of this DVD. It is one I’ll be sharing with other people in my work, and one I’d certainly recommend to others.

 

This DVD was developed by the Tizard Centre and United Response, working with Frameworks for Change and funded by the School for Social Care Research.

 

For further information on the resource, contact Lu Large at: Lu.Large@unitedresponse.org.uk

What does it take to ‘blow the whistle’?

There is a law to protect whistle blowers but it is less protective, if, as a last resort, they go to the press. Elinor Harbridge reports.

 

Here’s a question to ponder. Would we all be thinking about the 3,000-plus people locked up in so called assessment and treatment units if the nurse at Winterbourne View had not blown the whistle on the scandalous conditions there? Maybe we would but the chances are we would not.

 

What qualities does a whistle blower possess? In the case of Terry Bryan, the nurse in question, as well as courage and a strong moral code, what distinguishes him from the 15 previous complainants about conditions at the hospital was his determination to get something done.

 

Bryan was so appalled at the prevailing culture of people being herded about together without any individual attention that he wrote a four-page email to his line manager.

 

His complaints were sent to ‘safeguarding’ but as no action was taken, Bryan made several attempts himself to alert the Care Quality Commission. As we know, his complaints were ignored. After nearly six months of inaction, Bryan felt compelled to share his story with the Panorama team.

 

When he saw the footage, Bryan says he was shocked. The abuse caught by Panorama’s cameras was much worse than anything he had witnessed.

 

In an interview with Dimensions (still on YouTube) Bryan said: “If you know in your heart of hearts something is wrong, you must tell someone outside who can do something about it”.

 

Are whistle blowers protected by the law? Bryan knew and understood his legal position and was careful to follow the guidelines. But the law does not protect whistle blowers who go to the press from bullying and harassment, which the phenomenon of social media has made considerably more virulent.

 

The law is clear on who is protected, which disclosures qualify and which are ‘protected’. It is less clear about how individuals can be protected. It was amended in 2013 to provide stronger protection for employers from malicious attacks.

 

The law states that you are protected from victimisation if you are a worker, revealing information of the right type by making what is known as a ‘qualifying disclosure’, revealing it to the right person, and in the right way, or making it a ‘protected disclosure‘.

 

As well as employees the term ‘worker’ includes the self-employed, agency workers and people who aren’t employed but are in training with employers.

 

Qualifying disclosures

To be protected, you need to reasonably believe that malpractice in the workplace is happening, has happened or will happen. You also need to make your disclosure in the right way. The types of malpractice the law covers are: criminal offences, failure to comply with a legal obligation, miscarriages of justice, threats to people’s health and safety and damage to the environment.

 

The law also covers a deliberate attempt to cover up any of these. However, you may not be protected if you break another law in blowing the whistle; for example, if you have signed the Official Secrets Act as part of your contract.

 

Protected disclosures

For your disclosure to be protected by the law, you must make it to the right person and in the right way. If you make a qualifying disclosure in good faith to your employer, or through procedures which your employer has authorised, the law protects you.

 

For a disclosure to a ‘prescribed person’ to be protected, you must fulfil the following requirements:

• make the disclosure in good faith

• reasonably believe the information is substantially true

• reasonably believe you are making it to the right ‘prescribed person’.

 

In certain circumstances you can also make disclosures to others. These include your legal adviser, a government minister, if you’re a public sector employee,  more generally (to a professional standards body, for example, or in extreme circumstances, the media).

 

The rules covering disclosures ‘more generally’ are extremely strict – you must not, for example, be acting for personal gain. Anything you say to a legal adviser to get advice is automatically protected.

 

The majority of whistle blowers who go to the press do so as a last resort. The danger for anyone going public with complaints was well illustrated by the whistle blower at North Stafford Hospital. Julie Bailey’s 86-year old mother died after she was ‘dropped’ by a nurse, the culmination of six years of neglect. When Miss Bailey spoke out about conditions at the hospital she became the victim of a hate campaign.

 

Uncovering unpleasant facts has repercussions. Staff and communities can feel tainted. Some nurses have still not forgiven Terry Bryan.

 

The truth is not always welcome. We owe these courageous individuals something better.

 

There is a helpline for whistle blowers:08000 724 725 and a useful publication: Raising concerns at work. Email enquiries@wbhelpline.org.uk