Providing tailored housing will save money in the long term

Some local authorities have invested heavily in out-of-date shared supported living models and are now regretting their agreements to meet longer-term property needs. People with learning disabilities are now less willing or able to be fitted into convenient properties.

 

Community living for all means meeting people’s more complex needs with tailored provision. Given the cost pressures on housing associations and providers, local authorities and community support providers, there can be a temptation to ride roughshod over tenants’ needs and preferences to minimise costs and fill properties, even move people out to hand them back. Few of us would be happy to be moved out of our chosen lifetime home and local neighbourhood, nor to have co-tenants moved in who will disrupt our home life.

 

Unfortunately, this can still too easily be imposed on people unable to speak out and with today’s short-term tenancies such poor practice can be legitimatised. Moving house is recognised as causing acute stress, the more so for people with autism or learning disabilities who may have limited understanding or control over such a move. Providers too can feel pressured by commissioners to place someone in a property who is unsuitable for sharing – and the casualties are the co-tenants as well as the person themselves. Where this is being considered, in the absence of a suitable or willing relative, an Independent Mental Capacity Advocate should be involved in scrutinising the arrangement but one suspects rarely are. Under the new Care Act, we should see the involvement of advocates to ensure good support where significant changes are proposed – but will we? With the lack of accountability on commissioners, some people may have ended up in Assessment and Treatment Units, not because they needed treatment but because no one took sufficient account of their housing needs.

 

The ‘one size fits all approach’ which the sector has historically seemingly adopted, is not the answer. Individuals’ housing aspirations and needs demand a varied approach. Whilst there are pressures on commissioners and providers to enable cost-effective solutions, let’s not see these perpetrated at the expense of what is needed by each individual. Let’s rather find solutions matched to real preferences. I suggest this will prove far more cost-effective in the long term.

 

Rosemary Trustam

Planning to succeed

Rosemary Trustam attended an event celebrating what people and staff at Three Cs achieved using an inspirational piece of software.Angela’s dearest wish was to become a volunteer and swim with dolphins. She succeeded in her wish and now feels she has control of her life, chooses what she wears and how she decorates her room.

 

Some people wanted to earn money and get employment relevant to their interests. They worked closely with staff and achieved their objectives.

 

These were some of the inspiring stories heard at an event organised by Three Cs to celebrate what people had achieved using the software iplanit.

 

“A leading champion for innovation” was how the founder and director of the iplanit software company Aspirico Declan Kelly described Three Cs.

“Three Cs stands out among the initial providers piloting it as they had really embraced its purpose and led a culture shift in supporting people to achieve their bigger aspirations,” he said.  The system has been developed as ‘core’ to the way they work.

 

The occasion brought together support staff and people with learning disabilities and everyone shared their experience of the last five years. Their achievements were recognised with awards for both support staff and people with learning disabilities.

 

What was striking was the way people directed their own plans and took control of them. Plans can look good on paper but aren’t so easy to track, which is part of what iplanit offers. People can directly hold staff to account on key aspirations and work with staff teams to get there.

 

The iplanit software was inspired by Sally Warren, Director of Paradigm, who was determined to give people more control of their lives so they could develop their own version of ‘an ordinary life’. Some like-minded agencies came together with Declan Kelly to develop and try it out. Sally wanted software that could help people be more in charge of achieving what mattered most to them in their lives, an aspiration shared with Jo Clare, Three Cs’ Chief Executive.

 

iplanit can be used for people’s comprehensive needs and plans as well as for the most important things for an individual – their wishes and preferences. Three Cs’ chose to use it for what was most important for them, not their day-to-day needs. Other plans are lodged on but the goals tracked are those chosen by the person.

 

It can take time but staff persevere trying different approaches or other avenues to get the right result and adapting if the person changes their mind and wants something different.

 

Staff teams are monitored by managers who can access iplanit to ensure they are really on top of what needs to be done to help someone achieve their ambitions.

 

The team award went to staff and people who had moved to Three Cs only two months previously and had embraced iplanit and progressed together. This team said, “Moving to Three Cs had been like getting an upgrade”.

 

The manager who got the key performer’s award for the second year running was chosen because he had made the most difference for people who had huge challenges in the past. For the last seven years they have managed to stay out of Assessment and Treatment Units and police cells. Using iplanit, he and his teams have enabled people to develop full lives in the community.

 

This event showed how motivated staff can make effective use of this tool. It can also provide a wealth of evidence to show people’s achievements – to commissioners and inspectors.

 

(See also, Thin socks and sandals – is this what dreams are made of? How Three Cs introduced iplanit. Volume 25, No. 2 p.12)

Screwing up, honesty, integrity and saying sorry…

All organisations make mistakes – what defines the good ones is their willingness to admit their mistakes and put them right, says Alicia Wood.

 

You will all know that feeling when you get something wrong, or someone criticises something you or your organisation have done. I get a knot in the pit of my stomach and for a few hours at least (sometimes days), and then in my mind, everything I have achieved in the last 20 years is negated because of one mistake. On a feedback form for work I have done, if I get one or two negative comments, I will dwell on those despite there being many more positive comments.

 

I have learned to be less harsh on myself as the years go by but I know that it is the negative feedback and the mistakes that spur me on to do better, to challenge myself and come out of my comfort zone.

 

We all screw up and make mistakes – working in human services we are bound to. We make decisions on the hoof… some are irrational, based on emotion rather than fact. But we are human beings dealing with human issues and this will never change. How we respond to criticism and deal with our mistakes is what makes good organisations stand out from the others.

 

Tortuous cycle

I am prompted to focus on the subject of getting it wrong in this column because I have just been reading the excruciating saga of #JusticeforLB. For those of you who don’t know, LB was a young man who drowned in the bath of an Assessment and Treatment Unit. His death was found to be preventable but the organisation responsible for his ‘care’ have never taken responsibility or properly apologised. His family are in a torturous cycle. In their fight for justice, they cannot properly grieve or move on more than two years after his death. The organisation uses inhuman tactics and language to avoid taking responsibility for the poor services that led to LB’s death. I can only surmise that they are acting in this way to avoid legal action being taken against them.

 

I have been involved in Reach Standards for supported living for the last 12 years and have spent much time going round the country talking to providers and commissioners about helping people to live a more ordinary life. Every organisation I met had some fear about risk and the implications for their organisation if they got it wrong. Many imagined they would be sued – some even based their policies on not ending up on the front page of the Daily Mail. I always asked a risk averse audience if they knew any organisation that had been sued or in the Daily Mail — only Cornwall NHS Trust was mentioned. It doesn’t really happen that often but probably should when providers are consistently poor.

 

Good organisations screw up but their first thought isn’t to avoid legal action. Good organisations act humanely and say sorry first, with sincerity and humility. They do not try to defend themselves but they open themselves up to more criticism by being public about their mistakes. They are open about what they have done wrong and genuinely try to find out where they went wrong and put it right. They care more about the people they support than their reputation.

 

This can’t change the fact that we have made mistakes with sometimes terrible consequences but if we can act with honesty and integrity, we enable the people we have wronged to move on.

 

Providers and commissioners are having a hard time in the media with almost daily stories about poor services and poor commissioning. Social media is making what was previously minor news more available and open to more people. Those who are wronged take to social media to shame the wrong doers.

 

Honest dialogue

We need to see poor providers driven out – there is no place for them in caring for disabled and older people – but we also need to see good providers telling us all about the mistakes they make and how they put them right. We need to shift away from just marketing and promoting our successes to also sharing our screw ups and our learning from them. We need a more honest dialogue with those we support, their families and the public if we are to shift from either an unrealistic expectation of perfection or, alternatively, an expectation that we are all sharks who have no integrity.

 

The Care Quality Commission has shifted the focus of inspection on to the culture of organisations rather than a rigid set of outputs. They now expect providers to put their inspection results in a conspicuous place on their website for all to see.

 

The Driving Up Quality Code (www.drivingupquality.org.uk) is an attempt by providers to be more open about what they do. There are providers that are openly publishing what the people they support, families and others say about their services, the good and the bad, and what they are going to do to get better. None of these providers is perfect but they are being transparent and honest about their failings.

 

In an age where slick marketing and PR brands all providers, good, mediocre and bad, with the same buzzwords and shiny images of happy faces, we can now get some sense of the culture of the organisation and if the organisation is brave enough to share their mistakes and take real action to improve, we can begin to trust them.

 

Alicia Wood is Chief Executive, Housing & Support Alliance (H&SA). The organisation helps housing & support providers, commissioners and advice and advocacy organisations make good housing and support happen for people with learning disabilities. For more information about H&SA membership call 0300 201 0455 or email kate.newrick@housingand

support.org.uk

Government’s proposal to reduce payments for disabled claimants

Mencap has set up a review to examine the Government’s proposal to reduce payments for disabled claimants in the Employment and Support Allowance Work Related Activity Group (ESA-WRAG) from £102.15 a week to £73.10.

You are invited to send evidence to this review, led by the Independent Peer Lord Low of Dalston.

The proposed change is outlined in the Welfare Reform and Work Bill currently being debated in Parliament and would take effect from 2017.

This review is being supported by the by disability charities including Leonard Cheshire, Mind, MS Society, National Autistic Society, RNIB, Royal Mencap Society and Scope. A report will be published in December containing the findings and presented to the Government.

Mencap would like to hear from disabled people, their families, charities and other organisations on this subject. They are seeking answers to four questions set out in three formats:

1- for organisations

2- for individuals/families affected by ESA

3- an easy-read version for individuals/families affected by ESA

The deadline to collect all responses is midnight, 15th November. Please try and get these attachments out to whoever you can in the next few days.

Please submit evidence to: natalie.armitage@mencap.org.uk

Natalie Armitage

Public Affairs Assistant &
 Secretary to the Parliamentary Review into ESA

Tel: 020 7696 6952

Royal Mencap Society

123 Golden Lane, 
London, EC1Y 0RT

Consultation ESA WRAG organisations final.doc1 (46.5 KB)

Consultation ESA WRAG individuals final.doc2 (39.5 KB)

ESA WRAG ER FINAL .doc2 (740 KB)

Check out Belinda Schwehr’s Care and the Care Act blog

belinda business seminarSchwehr on CARE is Belinda Schwehr’s contribution to supporting people who are interested in adults’ social care to use the Care Act, together with public law principles. The idea is that the Act might then really make the kind of difference that it was intended to bring about. The blog will do this by encouraging the airing of stories from people in the sector, or affected by it, about what’s actually happening in practice, now the new law is in force. This includes blogs by guests also in the field All about Schwehr on CARE

As subscribers will know, Belinda Schwehr is a leading legal trainer and consultant particularly expert in Community Care Law who writes for Community Living magazine on cases of relevance, so don’t miss the chance to check this out.

The blog aims to  to look at different aspects of the Care Act each week and provide a public forum of discussion about what is actually happening in the sector, in order to flag up if there is a difference between practice and theory.

In response to comments or queries about current situations arising, Belinda will happily give a steer, using her 15 years of expertise and experience. She will look at what the Act says should be happening, about a given part of the customer journey, for instance, or what commissioners should be doing, or at the line between health and social care.

 

Speak out Scotland to your Parliament 26th Nov. Dundee

Get heard by & influence your Scottish Parliament policies affecting YOUlogoVIAS

More info and book
Inclusion Scotland, Scottish Campaign for a Fair Society, Engender and Values into Action Scotland (VIAS) are organising this event for disabled people to hear their views and learn what is needed to make disabled people’s lives better. They will pass this information to the Scottish Government to help them write policies that affect disabled people’s lives.
At the event they will:
• Hear your ideas for making disabled people’s lives better
• Inform you about your rights
• Find out what you think about the Scottish Government’s plans to improve your rights as disabled people
• Have some fun! Learn about disability rights, have your say and have fun. Karaoke after the workshops, a chance for disabled women to talk to Engender about improving their rights, or have a good blether over a tea or coffee before you go home.

Lunch will be provided, and they can offer reasonable travel expenses. There will be personal assistants and facilitators to ensure that everyone is able to take part.

Click for info Once you book, you’ll get some information with a link to a quick survey (this will also be emailed to you. Please fill this out in order to help them plan the day to ensure that everyone can participate.

The importance of belonging – A day with David Pitonyak and Paradigm 7th December London

Paradigm continuing its work to support people to lead good ordinary lives – with  the chance to be part of a conference with Sally Warren, Jackie Downer and internationally respected David Pitonyak. Being connected to the people we love is critical to our emotional and physical well-being. Many people experiencing our services are sick from loneliness and it needs a change in behaviour. Come and learn, share, and shape ideas to approaches that support enduring, freely chosen relationships.
For more information, please see the flyer: The-Importance-of-Belonging-David-Pitonyak-flyer1

Don’t miss the chance – Venue: St Luke’s Community Centre, 90, Central St, London EC1V 8AJ

Cost: £88 (NB There are a number of free places for families and self-advocates)

National Adults Commissioning Conference Oct. 1st/2nd

NCCTC – Health & Social Care Integration – How will it Work?

In partnership with the independent sector”

Brings the commissioners together to share good practice, the multiple challenges and what’s happening in the sector. A unique opportunity for all players in the statutory and independent sector to work & share together. Don’t miss the opportunity. Early booking (before 30th August 2015) and day places available.

To book places and for more information see National Adult Commissioning and Contracting Conference

Housing and Support Alliance Annual Conference – November 19th Manchester

The only conference for housing and support providers and stake-holders – don’t miss it. Bring your issues and share solutions/campaigns – what’s your challenge?? Come and meet Community Living magazine there and get our special offer – this issue free when you subscribe on the day.

H_and_SA 2015 Conference flyer

Working Together – Psychotherapy & Positive Behaviour Support – IPD 2 October York

Run by Institute of Psychotherapy and Disability Priory Street Centre, York, this conference will feature discussions between leading proponents of PBS and eminent disability psychotherapists. The day is targeted at everyone with an interest in supporting people with learning disabilities. See our Events  calendar 2nd October for the flyer and further information

Reader challenges Mark Spencer MP to spend a couple of days with her family

Extract from Community Living, 28,3

Jobseeker with learning disabilities loses benefits for being four minutes late. A jobseeker with learning difficulties was left without food or electricity after he was four minutes late for a Jobcentre appointment.

During a debate on the state of poverty in Britain in February, Labour MP Lisa Nandy, shadow civil society minister, told parliamentarians about a vulnerable person in her constituency of Wigan who had his benefits taken away under the sanctions regime.

Tory MP Mark Spencer said that people like him needed to learn “the discipline of timekeeping”, and suggested the education system needed to improve to cure the constituent’s learning difficulties.

………………………………………………….

Letter from Barbara Thorn of Ipswich Mencap

I have three children with learning disabilities and I also work for Mencap. I would like to challenge Mark Spencer to spend a couple of days with me and my family and see how he copes trying to organise them. Only one of my three can tell the time although he is extremely bright. Another constantly seeks attention and is always in trouble; the third has early stage dementia as well as learning disabilities.

As their mother I am their ears and eyes most of the time and if I can’t cope how can I expect them too?

Learning disabilities is just a label. It covers a wide spectrum and no two people are the same. Supposedly educated people like Mark Spencer should understand this. Perhaps he has a silver spoon in his mouth and does not realise that people with learning disabilities have to fight for everything.

I know from first hand experience that people with learning disabilities are being discriminated against and benefits are getting harder to obtain. Unless they have true honest carers who are prepared to help them, people are losing out. They are left in the dark and not everyone knows who to ask for help.

I spend a great deal of time visiting both parents and people with learning disabilities, helping them fill in forms correctly. I am there to support them whenever it is needed. But who is there to support me?

barbara.thorn7@ntlworld.com

We need to talk about Mencap/Charity Begins At (Care) Home – My Daft Life & Mark Neary blogs

The CQC published a chilling review of a Mencap run ‘service’, Precinct Road in Hillingdon, on Friday. Yep. Mencap. Documenting so much so wrong I can’t summarise it here. A series of human wrongs.

This went under the radar until Mark Neary came across it this morning and started to tweet about it.  A teeny tiny (anti) press release was eventually published later today stating very woodenly;

Mencap takes very seriously any requirements and recommendations on how to improve the quality of support we provide. After a recent CQC inspection of Precinct Road in Middlesex we have apologised fully to the people we support and their families.

We have taken immediate steps and great care to fully address the actions outlined by the CQC’s requirements and recommendations. Our procedures and environment at Precinct Road have improved as a result.

Mencap is committed to ensuring that we offer the highest quality care to enable people with a learning disability to live the lives they choose to live.

This was missing the hallmarks of a typical Mencap press release; speed and a grandiose statement by the Chief Exec – usually in cahoots with the CEO of the Challenging Behaviour Foundation – ‘calling upon the government’ to do diddly squat. (Ensuring their continued seats at any table, breakfast or otherwise, where endless, pointless but costly discussions about the provision of services can be chewed over a doughnut or ten). Oh, and no link to the CQC report. Breathtaking.

I’m left thinking… Mencap (or Menace as my autocorrect keeps calling them):

  • How could you possibly be required to improve the services you provide given you are the (self proclaimed) ‘leading voice of learning disability’? With the £b?/millions you have at hand?
  • Why did it take a CQC report to make you act at Precinct Road when it’s clear from the CQC report that the problems identified were apparent for several months?
  • Why have you only apologised to the four people who ‘live’ at Precinct Road and their families? Surely you should issue a wider apology. To all those you ‘support’ and those who fundraise and volunteer for you?
  • How you can possibly say you are committed to ensuring you offer the highest quality care to enable people with a learning disability to live the lives they choose to live… when you don’t?
  • And finally. Are you a provider or a campaigning charity? Because you clearly can’t be both.
July 28, 2015 – Charity begins at home

For thirteen years I worked for a counselling charity. A very small, local charity. I won’t name them in case HMRC are reading. The 25 or so counsellors had to be self employed. We had five counselling rooms, provided rent free by the church who also gave the charity an annual grant. The counsellors received a fixed sessional rate of pay. The tricky bit was what the clients paid us. We had to call it a “donation”. It was drummed into us that we couldn’t use words like ” charge” or “fee” or “payment”. Trouble is that the word ” donation” suggests flexibility and choice. Whatever you donate could vary from one session to another and in fact, you could chose not to donate anything at all. Of course, the reality was nothing like that and as times got harder, we could only accept clients who offered a donation starting from £20.

What’s my work history got to do with anything? Yesterday, the CQC published an inspection report of another care home being given an “inadequate” rating. My eyes were drawn to the report because the home is in Hillingdon. The first shock was that the home was run (owned?) by Mencap. I didn’t know that Mencap run care homes. In fact, they have 130 across the country (that doesn’t include supported living) and have 3 in Hillingdon. The responsible individual for all three local properties is Janine Tregelles. I only mention that because this is the same Janine who regularly teams up with the Challenging Behaviour Foundation to issue a condemning statement whenever a scandal in the social care world breaks. Here’s a flavour:

“Mencap & the Challenging Behaviour Foundation call on the government to urgently address systemic failings in the care of people with learning disabilities” (4.9.2012).

The CQC report makes for dreadful reading. I sat there with tears welling up and a boiling rage. I just want to focus on one of the failings because I think it’s the perfect illustration of the chasm between the presentation and the reality. And sadly, I think it demonstrates the impoverished lives lived by the residents in a place run by a charity that proclaims to be “the voice of learning disability”. The CQC noted that the care plans of the four residents (the service can take up to five people) showed that they needed 2:1 support when they were out and about in the community. The staffing records show that between 7am and 10pm each day, only two staff are on duty. The figures don’t square up. If the two staff on duty took a person out, the other three residents would be left home alone. The ” activity ” records reveal that during May, one resident went out five times. For 26 days in May, he had to stay indoors all day. Another resident went out 7 times, although three of those trips were to do the house shopping. One resident has on their person centred plan that he loves going bowling but a staff member interviewed admitted they can never take him because there aren’t enough staff. It’s just so fucking depressing. I checked the CQC reports of the other two Mencap care homes in the borough and the staffing levels look exactly the same. 15 learning disabled people in three placements (you can’t possibly call the places a home) confined because the country’s “leading learning disability charity are unwilling to adequately staff its services. Needless to say, there were no DoLs authorisations for any of the people in the inadequate Precinct Road care home.

Click on the Mencap website today and you’ll see it is splashing its annual Dodgeball Day (Tickets at £27.50 plus booking fee). What chance have the poor sods who live at Precinct Road got of going to a Dodgeball Day? If they’re very very lucky, one of them might be able to pop out to the newsagent to buy the house milk.

I don’t understand how the business, erm sorry, charity works. Presumably Hillingdon council Commissions Mencap to provide this service. Do they give them a donation? Once commissioned, do they just leave them to get on with it?

In the Mencap accounts, it records an income of £175m and 80 to 90% of that income (donation?) comes from central or local government contracts.

It’s easy to see why Mencap want to cosy up to Bubb and his buildings based plans to get people out of ATUs. More ” donations” to the Mencap coffers, regardless of the type of lives its clients will end up living in a Mencap service. It makes all the press releases from Mencap & CBF ring a bit hollow. Oh, and by the way, Mencap issued a statement about the Precinct Road report. Without the CBF. Harold without Hilda. There were no trumpets. No calls on the government to act. Just a rather grudging Apology with extraordinary language like “Mencap is committed to enabling learning disabled people to live the lives they chose to live.” They chose to live? Doesn’t seem much choice at Precinct Road. It’s bastard, not our fault guv, language. From the leading charity that gives learning disabled people a voice.

Wouldn’t it be great if those four people at Precinct Road had a voice and said: “Hello Mencap. We would all like to live our life as we chose and go to your Dodgeball contest today”.

Words and actions. The void. See comments on: https://markneary1dotcom1.wordpress.com/2015/07/28/charity-begins-at-care-home/

Comment:https://rosemarytrustam.wordpress.com/2015/08/05/charity-begins-at-care-home/

At the centre of this, CQC do judge the staff as kind but one wonders whether the problems identified are a function of too large an organisation trying to be too many things. It certainly appears as if it hasn’t managed to advocate successfully for the needs of these service users with the local commissioner. Needs identified are not met with sufficient staff support. One suspects this to be function of LA cuts – BUT Mencap should know enough to ensure the commission meets needs as is the legal requirement. The Q raised here is one that should be considered. Can an organisation effectively run services but also be a campaigning charity for people? Certainly its credibility as spokesperson for the sector has to be seriously undermined when it is found to be running a service now put on special measures by CQC… and whilst there are few perfect services, Mencap can’t afford to have such imperfection given its role. Does it need to run services? If it does they will need to be excellent surely?

 

 

Can Mencap be a Service Provider and campaign for People with Learning Disabilities?

In the light of effectively being put  in ‘special measures’ by CQC for one of their services which has their Chief Executive Jan Tregelles the person overall responsible, can Mencap legitimately speak out against poor services? Does this epitomise the problem of national organisations being too far away from their services to assure the quality? My Daft Life and Mark Neary both speak out – see our blog-post on this web http://www.cl-initiatives.co.uk/we-need-to-talk-about-mencapcharity-begins-at-care-home-my-daft-life-mark-neary-blogs/

Where will the axe fall next?

Some of the reforms put in train by the last government have still to come into effect. We know about others already in the Employment and Welfare Benefits Bill. We are now waiting for the July budget to learn how the Government plans to save a further £12 billion. Charlie Callanan looks at the last five year’s reforms and what can be expected in future.

As we have already had five years of welfare reform, and know that further reforms are coming, this is an opportune time to review what has changed, and to outline what reforms are expected for the future.

 

The Conservative Party’s election manifesto promised further changes to the welfare benefits and tax credits system. Its main manifesto commitment on welfare was to reduce spending by £12bn by 2017/2018.

 

The government gave the headlines of its plans for the next welfare reforms in the Queen’s Speech on 27 May.

 

The Employment and Welfare Benefits Bill is the main plank of planned legislation affecting benefits and tax credits. The Government says that the Bill will ‘ensure that it pays to work rather than to rely on benefits; and deliver fairness to the taxpayer while continuing to provide support for those in greatest need’.

 

The main elements of the proposed Bill are:

 

A freeze on working age benefits

The main rates of most working age benefits, tax credits and child benefit will be frozen for two years from 2016/2017. But certain other benefits will not be frozen. These include those relating to the additional costs of disability (ie. Personal Independence Payment (PIP), DLA and Attendance Allowance), and statutory maternity pay, paternity pay and adoption pay. Also, the ‘triple lock’ will apply to the state pension for the duration of the parliament, ie. it will be increased each year by whichever is the higher of inflation, the increase in average earnings, or 2.5 per cent. Winter fuel payments, free bus passes, TV licenses and prescriptions will continue for pensioners.

 

Lowering the benefit cap

The total maximum annual amount of benefits a ‘non­working’ family can receive will be reduced to £23,000 (currently £26,000), equivalent to gross family earnings of up to £29,000. As before, it is expected that the benefit cap will not apply to certain claimants or households. This includes where the claimant, or his/her partner or a dependent child gets a disability benefit.

 

 

Removal of automatic entitlement to housing benefit for 18­-21 year olds

This cut could have potentially serious implications for thousands of young people with learning disabilities who are trying to live independently as they enter adulthood. What, if any, exemptions or protections may be introduced, especially for more vulnerable claimants (eg. those without or unable to stay in a parental home) remains to be seen.

 

New youth allowance for 18­-21 year olds

This will entail stronger ‘work-­related conditionality’ for young jobseekers from day one of their benefit claim. After six months claimants will be required as a condition of getting benefit to go on an apprenticeship, training or community work placement. Young people with disabilities who are not ‘mandated’ to seek work – such as those claiming Employment & Support Allowance – are not expected to be affected by these rules.

 

In some ways these proposals look minor in their scope to the welfare reforms already made by the Coalition during 2010­-2015.

 

Major previous and ongoing reforms

Universal Credit. This will become the main means-tested benefit for working-age claimants, whether in or out of work. It will replace all the old major means-tested benefits such as Income Support. It is currently being rolled out for certain new claimants.

 

Benefit Cap. This was introduced on the total amount of benefits that working age households can receive. Benefit levels were capped at £500 a week for families and single parents and £350 a week for single people.

 

Personal Independence Payment (PIP). This replaced Disability Living Allowance (DLA) for new claimants. All existing DLA claimants aged under 65 on 8 April 2013 will have to apply for PIP. Migration from DLA to PIP is currently being introduced across the country.

 

Housing benefit ‘bedroom tax’. Housing benefit awarded to council and housing association tenants who were ‘under-occupying’ properties was reduced, by 14% where a tenant is under-occupying by one bedroom, and by 25% where two or more bedrooms are unused.

 

Localisation of council tax support and welfare provision. Council tax benefit was replaced by a system of local support. Community care grants and crisis loans were abolished and replaced by ‘local welfare provision‘. Both schemes are provided and administered by local councils.

 

Mandatory revision before appeal For most benefits and tax credits the claimant must apply for a revision of a decision before they can submit an appeal to the first­ tier tribunal.

 

There have been various leaks in the national press about policy ideas within government about how it can achieve cuts totaling £12 billion to the welfare bill. So as well as the existing reforms yet to affect their clients, and the changes already outlined in the above-mentioned Bill, professionals will need to stay aware of any other changes affecting benefits and tax credits that may be proposed to try to achieve these massive savings.

 

Further information from:

www.gov.uk/government/policies/welfare-reform

http://www.disabilityrightsuk.org/how-we-can-help

Frank lost hope in One Nation – then found pigs really might fly

Frank lost hope in One Nation – then found pigs really might fly

 

Whilst the rest of us are busy being polite, it’s Frank’s job to find out what’s going on and say it like it is.

 

The election result may have been a nightmare but Frank found an inspiring film restored his belief that One Nation does still exist.

 

The dawn of 8 May was glorious. Food banks and PIPs gone, a social housing glut, no A&T units, a mandatory Living Wage, the Bedroom Tax relegated to a bogey man in an old English ghost story. The pound had held its own against the dollar and the City had not taken its ball home in a mendacious sulk. I was just waiting for world peace, an end to child poverty, global warming in remission and Sepp Teflon Blatter to be indicted for corruption when I bumped into a flying pig and woke with a start.

 

A few days later, my wife, a disabled tax payer, was unlocking her car on her way to work when a passer-by said resentfully, “They’re still givin’ ‘em all new cars, I see”.  Picking his sorry entrails out of her teeth, she yelled “I am a net gain to the treasury, you gullible, stereotyping ******”!

 

So the sight of disabled people and immigrants with assets was still provoking Victorian resentment. Nevertheless, as the government had only just officially declared its new direction, I said hopefully “It’s early days and perhaps those ******* have not yet got the message that we are One Nation Returning to Compassion”. “You think”, said wife, ominously.

 

As One Nation was rolled out in all its glory, wife dumped each new trophy of the government’s intentions in my chastened lap. “A  new justice minister in favour of capital punishment”, she said.  “An equalities minister who is anti-gay,” she declared. “An anti-abortionist  in charge of maternity services and  a disabilities minister who voted for the Bedroom Tax,” she spat. After ‘flogging off national assets’, ‘social housing in bargain buckets’, ‘erasing the child poverty target’ and ‘returning to compassion by dumping human rights’, I had had enough.  I joined her in High Dudgeon, clutching a ticket to Lost Hope.

 

From that vantage point, all became clear. This is a con trick in which ordinary citizens are the mark and austerity the mode. Its purpose? To create anxiety about survival and trigger divisive human behaviour, like dog-eat-dog and scapegoating. Fake guardians of equalities? Appointed to aid the repeal of protective laws and ration resources. Europe? A new decoy, to take our eyes off the back yard at home. The fraud? Dismantling the state and re-routing public assets and revenues into private pockets. The code? Everything the new government says is the opposite of what it means: One Nation? Divided Nation. Compassion? Dispassion. Equality? Inequality. We are being robbed of resources, of our collective humanity and of the very meaning of the words we use to defend ourselves.

 

“Marvellous!” said wife, saying  it twice before I realised it was not the new code. We sat and watched Marvellous again. Stoke City Football Club of the 1990s employed Neil ‘Nello’ Baldwin, a guy with learning difficulties, as their kit man and Keele University thanked him for 50 years service with an honorary degree. Back in One Nation, Gavin Harding was appointed Mayor of Selby, the first Mayor with Learning Disabilities in the UK.  When Sepp Blatter, another con artist, resigned after 17 years of hiding in plain sight, I finally tore up my ticket to Lost Hope. Pigs might fly after all.

Darkness that never quite goes away

Darkness that never quite goes away

Simon Jarrett on three short stories reflecting society’s prejudices through the ages, even today

 

 

Joseph Conrad                  The Idiots, 1898

Eudora Welty                     Lily Daw and the three ladies, 1941

Lars Gustaffson

Greatness strikes where it pleases, 1981

 

There has always been a dark side to society’s view of those they regard as less intelligent, less fit to belong. The nature and intensity of that darkness can fluctuate and take different forms over time but it is still there today.

 

Three short stories show us that darkness in different periods of history, unconsciously expressed by authors steeped in the assumptions of their times.

 

The bleakest tale

Conrad’s Idiots, set in late 19th century France, is about as bleak a tale as you can get. A peasant couple give birth to four ‘idiot’ children and their already miserable lives descend into alcoholism and violence, culminating in murder and suicide. The children, only ever referred to as idiots or creatures, are left to roam the barren countryside, howling ‘according to the inexplicable impulses of their monstrous darkness’, merging into the landscape like beasts.

 

Deep South and Far North

Lily Daw and the three ladies describes the American Deep South of the 1930s. The motherless and mildly retarded Lily is looked after by the town’s three eccentric, wealthy, leading ladies. Once she becomes ‘too mature’ (meaning sexually developed) they decide she should be admitted to the ‘Ellisville Institute for the Feeble-minded of Mississippi.’ News that she has a place there is greeted as if she is going to an elite university. Horrified when they then hear that a man has proposed marriage to her, she is quickly bundled onto a train bound for Ellisville. However, as the train is about to depart they discover that the marriage proposal is from a tiny, hearing-impaired xylophone player in a travelling fair. They deem him a suitable match for Lily and manage to whisk her off the train just before it departs.

 

Darkness through the ages

In Greatness strikes where it pleases, Gustaffson tells the tale of a child taken from his family home, a remote farm in 1940s Sweden, to a long-stay institution. There he rots away, with a brief glimmer of happiness for two years when a gifted teacher involves him in woodwork. The story ends in 1977 with him (he is never named), ‘shapeless in his lounger’ in a newly built home, watching the trees live and die through his window.

 

These three stories, set in the ‘degeneration’ era of the late 19th century, the eugenics scare period of the 1930s and the hospitalisation and community ‘resettlement’ post-war years, are depressingly similar.

 

Conrad weaves together a knot of misery, violence and pain caused by the birth of idiots into the world. Eudora Welty’s tale of Lily appears at first lighter and happier, but shows a young woman entirely at the mercy of the whims of those who choose to take responsibility for her. The town’s brass band turns out to cheer a retarded person onto the train to the institution, as if celebrating a marriage. Gustaffson’s unnamed ‘hero’ merges into the bleak landscape he inhabits, a life wasted and unremarked, just like Conrad’s idiot children.

 

The darkness never quite goes away.

If you love dance, catch Corali

If you love dance, catch Corali

Simon Jarrett sees some terrific dance talent inspired by leading choreographers

 

‘Empty theatre dream’, ‘Overlap’, ‘Origami Atoms’

Corali Dance Company

Lilian Baylis Studio, Sadlers Wells, London, 22 March

 

Corali is a London-based group of dancer-performers who have learning disabilities, and work with artist collaborators from a variety of artistic backgrounds. Their performance at this leading dance venue included three pieces, one of which arose from a collaboration with world-famous choreographer Wayne McGregor’s Random Dance Company.

 

The McGregor-inspired piece, Origami Atoms, was the highlight of a high-quality evening of contemporary dance. McGregor is fascinated by the intersection of art and science, dance and geometry, physical human movement and light and sound. The six dancers performed a beautifully complex piece, full of subtle connections with each other, the music, lighting and every part of the stage.They showed great solidarity as an ensemble but each also displayed their individual physicality to compelling effect. Dancers Paul Davidson and Katy Cracknell were particularly outstanding, both displaying effortless movement and timing.

 

This performance was a fitting offshoot of McGregor’s highly-acclaimed Atomos, which is currently touring to sell-out crowds across the country. Random Dance choreographers had developed the work in collaboration with the performers.

 

Mesmerising stage presence

The talented Housni Hassan performed an exquisite solo, Overlap. He has mesmerising stage presence, that easily recognisable but hard-to-define quality of the best dancers. The slowness of the movement in this absorbing piece required great feats of balance, control and discipline, and he achieved them throughout. His facial expressions connected perfectly with his movement, which resulted in a beautifully told dance story.

 

The programme began with Empty Theatre Dream, a multi-media performance using animation, the spoken word and live music as well as dance. The piece had been developed by the dancers themselves, working from their own dreams. Their dreamlike representations included stage fright, swimming under a warm African sky and a gliding high-society dance complete with glass of champagne. Like all good dreams, light comedy mixed with dark, menacing strangeness to produce a compelling performance.

 

If you love dance catch Corali. You will quickly become a fan. If you’re not sure about dance try catching them anyway. The company is nurturing some terrific talent, and there is nothing like seeing talented people do what they do – you may be converted.

 

For more information about Corali Dance Company http://www.corali.org.uk/

 

There’s only one Neil Baldwin – the life and extraordinary adventures of Mr Marvellous

There’s only one Neil Baldwin – the life and extraordinary adventures of Mr Marvellous

Simon Jarrett reviews the stunning BAFTA award-winning part film, part documentary charting the life of Neil Baldwin – professional circus clown, football club kit-man, lay preacher and honorary university welfare officer. Oh, and there’s one more thing, he has a learning disability

too.

 

Imagine the scene. You are sitting in a person-centred planning meeting with the usual array of support professionals. The person at the centre of the meeting is asked the key question. ‘So what would you like to do Neil?’ ‘Well,’ he replies, ‘I’d like to join a circus and perform as a clown called Nello. After that I’d like to be the kit-man for Stoke City football club. I’d also like, in my spare time, to be a lay preacher and a welfare officer for the students at Keele University.’

 

There are a number of ways in which the meeting might develop from here. The most likely is that there would be a gentle process of persuasion directed at Neil. Perhaps something a bit more… realistic? Something where you wouldn’t be laughed at, feel vulnerable? What about the cruel banter you might suffer from those wild circus performers and loutish footballers? What about stacking shelves at Tesco instead?

 

Working the vicar network

Fortunately for the legendary Neil Baldwin, as is clear in this joyful, moving, life-enhancing film, (winner of two major BAFTA awards in May 2015), there weren’t many people around in his life telling him to be realistic. His mother tried, but he just went on being Neil Baldwin, pursuing his own person-centred plan. To her credit, she never stopped him. As he said in his tribute to her at her funeral: “There aren’t many mums who’d let their sons run off and join the circus. She worried about my weight and tried to make me eat salad. But she meant well”.

 

It seems he never attended a person-centred planning meeting. He did indeed become Nello the Clown, for three seasons with Sir Robert Fossett’s circus, and to this day is a member of the World Clown Association. One day the circus upped sticks without telling him, and left him alone in a caravan in a Scottish field. Undaunted, he found the local vicar and persuaded him to give him, and his caravan, a lift to the English border. There, he was picked up by his long-suffering vicar from Newcastle under Lyme, who drove him home. “He sees the church”, the vicar explained, “as a sort of ecclesiastical AA service”.

 

Looking around for work, he turned to his beloved Stoke City football club where he was a well-known regular in the stands. They had just appointed a new manager, Lou Macari, the revered former Manchester United and Scotland player. ‘Nello’ was in the crowd that greeted his arrival. He took the opportunity to ask for a job. Macari looked at him, asked him a couple of questions and told him to report for duty the following Monday morning. He had decided to appoint him as club kit-man.

 

He took on the role with relish and performed it with aplomb. One player tried to pick on him as a ‘mong’. The next day the players returned to the dressing room after training to find that all their underpants had disappeared. Nello appeared, wearing all fifteen pairs. The silk ones belonging to his abuser were the ones he wore next to his skin. He became a hero to the dressing room. At one game the away fans began to chant ‘you fat bastard’ as he walked towards the dugout. He simply turned to them and bowed, to the roars of the home fans, who chanted his name.

 

Neil Baldwin wasn’t vulnerable in the banter-ridden, obscenity-strewn world of the football fan; it was the world he lived and breathed. He could handle it far better than most. His mother went to see Lou Macari, incredulous that he had been given the job. “It’s not a problem”, she asked, “that he’s … not quick on the uptake?” “Not quick on the uptake?” Macari replied. “We’re talking footballers Mrs Baldwin. It’s not exactly University Challenge out there”.

 

Unique character

The film is part biopic, part documentary. A community choir from his local church, Neil Baldwin included, sings a musical background to his life story. His part is played by the brilliant Toby Jones, who is understated and unsentimental, in a fitting representation of a unique character.

 

At times during the film Jones sits next to the real Neil Baldwin, and asks him what is true and what is fantasy. Did Lou Macari really register him as a player so that he could make a five-minute cameo appearance as a substitute for Stoke City in a testimonial game? “Yes”. Did he really score a goal? “Of course I bloody didn’t”. It was, in fact, remarked Macari, one of the worst attempts on goal he had ever seen.

 

At times it all seems to be going wrong. Baldwin’s mother dies and his independence is threatened. But his own deep commitment and involvement in his community has earned him a network of supporters who do not allow him to fail. He carries on, reconnects with life. He continues to attend Keele University, dressed as a vicar, offering a friendly word for new students feeling lonely or disoriented. He becomes a well-known, almost mythical figure amongst the student population and the university eventually give him an honorary degree. He decides to start a student football club, Neil Baldwin FC. Things don’t start off too well but pick up considerably when he recruits Gary Lineker to be the president and the Premier League’s Uriah Renny to referee a game.

 

Risk-free lives?

This is an unforgettable film but what does it tell us? Neil Baldwin is a man who has taken many risks to achieve his dreams. He has constantly gone against the grain, undermining received wisdom about what is ‘right’ for people with learning disabilities.

 

What did Lou Macari see in him that many ‘professionals’ would miss? He described him, quite seriously, as ‘the best signing I ever made in my life,’ a critical boost to team morale. Macari added, “He is a man without an angle and there aren’t many of them in football”. Would most professional decision-makers say, or even see, such a thing?

 

Marvellous, directed by Julian Farino, BBC 2014  (available on DVD, Dazzler Media, 88 minutes).

Intoart at the V & A

Intoart at the V & A

Six young artists immersed themselves in the collections of London’s V & A museum for six months with strikingly impressive results, says Simon Jarrett.

 

 

Intoart, the London visual arts organisation, teamed up with the V & A museum and the result was a new body of work from a fine group of artists with learning disabilities, inspired by the V and A collection. The six artists, working in both museum and studio, each produced a series of drawings based on a different part of the museum. In February this year they led walking tours around the V & A to explore the section they had worked in and explain its influence on their work.

 

Inspired initiative

This was a typically creative and inspired Intoart initiative, placing these promising young artists within the inspirational setting of one of the world’s greatest art and design collections. Working in the British, China, Glass and Ironwork galleries they handled objects, took photographs and then developed their own process to produce their artistic response to what they had seen. The walking tour format enabled the artists not only to explain the genesis of their own work but also to open up the collection to visitors. Each tour can be downloaded from the V & A website, printed and used on phones or tablets.

The final exhibition – displayed in a room at the V & A casually peppered with works by J M W Turner – was testament to the ethos of the project and the high artistic standards it both expected and achieved. The walking tours placed each artist in the spotlight, their job to explain to the public their own work, the works in the V & A collection and the interaction between the two. They responded, and it worked tremendously well.

 

Timeless and delightful

On the tour of the British gallery, seeing the rare 17th century household objects that had inspired Lisa Trim’s ink and pencil drawings gave her work a new meaning, which would not have been apparent if it had been seen out of context. Gazing back over three centuries at two dolls, a fan and a beautiful wooden toy cradle, she reinterpreted and brought them back to life. It was moving to see these objects, once part of the daily routines of 17th century families, reinvented and recreated in such a fond way. Particularly impressive was her version of the toy cradle, with its alphabet letters down the side. Placing it suspended against a black and grey background she caught its dark-wood depth using minimal colour and presented it for what it was – a timeless and delightful toy, instantly recognisable outside of its own time, speaking to us across the ages.

 

The work of Andre Williams, also in the British gallery, Philomena Powell and Salina Helene in the Ironwork and Glass galleries and Clifton Wright and Christian Ovonlen in the Architecture and China Gallery all produced similarly high quality, insightful work.

 

Intoart’s invitation to talented artists to immerse themselves in great art and respond to it has produced an inspired collection.

 

To read more about this exhibition, download the walking tours and see more of the art visit http://www.vam.ac.uk/content/articles/i/intoart-drawing-tours/

 

More about Intoart at http://www.intoart.org.uk/studio/weblogs/Exhibitions/blog.htm

Giving a strong voice for England

Giving a strong voice for England

In the first of a new series of interviews with prominent people Seán Kelly talked to Gary Bourlet about the work of People First England which he founded just over a year ago with Kaliya Franklin.

 

People First groups have been around for some time but only recently has there been a national organisation. People First England was launched in January 2014 with support from the Housing and Support Alliance and Choice Support, among others. A little over a year later I went along to meet Gary Bourlet who, with Kaliya Franklin, was behind the launch, to find out how People First England is going and what they have been doing so far.

 

Gary met me with Michelle Stewart who describes herself as Gary’s personal assistant, “or whatever”. Michelle joins in with our discussion at various points.

 

Gary is a friendly man with an easy-going approach which does not hide a deep commitment. He is still expressing his disgust over the last government’s performance during their five-year term as assessed by 2,000 people with learning disabilities and their supporters. “It’s shocking. They got 2 out of 10,” he says. The survey was co-ordinated by the Learning Disability Alliance (LDa) of which People First England is a founder member. Is there anything he would like to pick out from the findings, I ask Gary, but he shakes his head. “All of it. There are 50 ‘wrongs’ on there. And there are some which weren’t included, transport for example. That’s not the LDa’s fault. It’s because there are so many things people want to talk about. Another omission was about people starting up their own businesses. Employment is a big issue.”

 

Gary wants the LDa findings to set an agenda for the next government: “It’s important that it carries on, into the council and European elections”.

 

The survey also covered the future of Assessment and Treatment Units such as Winterbourne View. Since the report’s publication the Chief Executive of the NHS stated that these units have to close. I ask Gary if he has any faith in the statement. “I don’t have any faith at all. It’s taken too long. We’ll probably be talking about it for the next ten years. Nothing has been put in place. What we need is to replace those units with Community Learning Disability Nurses. And advocates. The funding must go to that”. Gary says he will shortly be speaking to the government to point out how much the units currently cost and how much could be saved by the LDa proposals.

 

We discuss Valuing People. “I really thought we were getting somewhere but then we got the Coalition and they said we are not going to have it anymore. We had a very good tsar in Scott Watkins, a man with learning disabilities who now works at Seeability. When it came time to step down from Valuing People he was in tears. He had a put a lot into it. People easily forget what people like myself and Scott do. We just get forgotten”.

 

Gary says the cuts are short-sighted. “Now they are cutting funding for the National Forum which feeds into the government and do an absolutely good job. It’s a shame”.  He feels that the government cuts support for people with learning disabilities because they are the easy choice. “It’s much easier to cut funding for people with disabilities, especially people with learning disabilities, than it is for the rich or pensioners because that is vote-winning. It’s all to do with votes and not enough people with learning difficulties vote. On my Facebook page there are a lot of people with learning disabilities saying, ‘No one is going to listen to us’. They accept defeat too easily”. But Gary does not accept defeat: “The government needs to work with people with learning disabilities. Our slogan is Nothing About Us Without Us!”

 

People First England have plans to get people with learning disabilities to feature more prominently in the media. “We haven’t been able to start that yet as we need funding for it. We need £20,000 for people to do the training. It can’t be Kaliya and me because we’ve got full-on stuff already. We want to get people with learning disabilities to work in the media interviewing politicians. We want them doing IT work, camera and sound, writing articles, being journalists. We want people spending time with MPs on internships, to see what they do, to give people the idea, then perhaps in future councils will take people with learning disabilities on as councillors. I hope too that we will have some MPs with learning disabilities”.  Gary makes a comparison with the Suffragettes. “They were building up women’s rights. We’re talking about the same thing”.

 

People First England’s great need at the moment is for funding. Housing and Support Alliance and Choice Support and others have supported the first year but more income is needed now and they are working on bids. Gary has also set up a Just-Giving page which has already brought in some helpful individual donations.

 

Gary shares the job and the wage with Kaliya Franklin, author of the well-known blog with the ironic title “Benefit Scrounging Scum”.  Kaliya does not have learning disabilities and I ask Gary what she brings. “She is a disability rights activist. She gives us another dimension. I am the sort of person who flies out with lots of ideas, you know, change-the-world ideas. She will say, hang on a minute, you’ve got to walk before you can run. She brings me back down to earth. But we get on fine. She is helping us get funding which is very important. She is somebody I could not work without.”

 

I ask Gary about how People First England relates to local groups. A number of self-advocacy groups have had to close recently and People First England aims to be an umbrella group. How is that going?  “At the moment we are part of the Housing and Support Alliance. We’re not a national charity yet. We’d like to be a national charity but you need the funding to do so. And it gets more political because a lot of local groups in England are still sceptical about a national group, unlike Scotland and Wales where they are coming together. We are building relationships with local People First groups”.

 

What can People First England offer local groups? “We can’t give them money. That’s what they’re looking for”. Could they advise them on how to get funding? “I would ask them to look at other self-advocacy groups. Go and visit each other and work together to think how to get funding…  but don’t apply for local authority funding because it’s in short supply”.

 

Gary notes that some groups produce publications or DVDs and sell them or charge for training and suggests that is another way for groups to get income. “You need somebody to come and talk about how you can run a business and develop a business plan”. Is that the sort of thing People First England are thinking of being able to offer at some stage? “No, it’s not. Kaliya and I wouldn’t be able to do that on our own. It would need someone to come in, maybe from a charitable organisation, who could help do a business plan”. What is People First England offering to local groups? “We are trying to get out there and speak to politicians and ministers. This is what we have been mostly working on. We are meeting the Minister for Care and Support in two weeks time. And we have been interviewed on television and been part of the LDa”.  At a more local level, People First England is creating a list of local self-advocates who can be called on when needed.

 

Gary recognises that not everyone will be satisfied. “There will be some people who are going to be disappointed and want us to do lots of things. I get inundated with loads of things people want me to do and I can’t do it”.

 

People First England has been active in social media with Facebook and Twitter, no surprise when they have a renowned blogger on the staff. That’s Gary himself of course. I wonder if it is difficult connecting with people with learning disabilities using these methods?  Gary thinks that Twitter is effective. “You will get quite a few on there”. But he says there are many people with learning disabilities who don’t know how to use Facebook or who are kept away from it by staff in day centres or care homes because of concerns about their safety. Nevertheless, he believes the numbers of people with learning disabilities online are increasing and says Facebook can be a real lifeline to people who live independently.

 

What put him on the road to being an activist?  “Back in 1982 a number of people with learning disabilities used to meet at National Mencap. We set up the Participation Forum Group. Some of us were from day centres, adult training centres they called them at the time. We weren’t happy”.  Gary explains that he and others were doing a week’s work for “therapeutic earnings” of just £4 a week. “There was no minimum wage. We didn’t have any rights”.  It wasn’t the earnings that were supposed to be therapeutic but the work: “…putting screws into plastic bags….”  He lifts his eyes upwards.  “…It goes back to the old days of the workhouse”.

 

John Hersov supported the group to have a voice. “I’m still in touch with him. He was my inspiration. He got me on the road”, Gary says, and with a laugh adds, “though I don’t think he’d like to be put on a pedestal!”.

 

In 1984 Gary visited America with John. “That’s when I started to bring the idea of the People First movement to this country”. If he could speak now to his younger self Gary tells me he would say, “You can achieve anything. Do not be afraid to speak up for yourself. You’ve got to make a future for yourself.”

 

His parting remark is that people do not say enough about their support. “I have had lots of people support me through the years and supporters do not get a mention. We owe a lot of respect to our supporters”.

 

We go outside for a photo and, as if to emphasise the point about recognising support, he puts an arm around Michelle’s shoulders for a joint photo.

 

After several decades Gary is still a brave man trying to make a better world. And as the editor of this magazine wrote in these pages a little while ago, he deserves our support.

 

www.seankellyphotos.com

The law on deprivation of liberty is “in a state of serious confusion”

The law on deprivation of liberty is “in a state of serious confusion”

 

The failure of councils to make court applications for deprivation of liberty cases could leave them open to claims for damages and legal costs.

 

But research by Community Care magazine found councils made only 1.6 per cent of court applications adjudged necessary since the ‘Cheshire West’ ruling in March 2014.

 

The ruling by the Supreme Court means that councils are expected to assess the placements of people living in the community to identify whether they are potentially being deprived of their liberty and, if so, to seek authorisation for this from the Court of Protection.

 

The number of applications is thought to be an under-estimate. One local authority that identified 90 ‘high priority’ cases likely to require authorisation due to risk or conflict around the placement had only made eight applications.

 

Meanwhile, a Court of Protection judge has made a second call for the Supreme Court to reconsider its Cheshire West ruling to deal with “serious confusion” in the law on deprivation of liberty.

 

In a series of judgments Mr Justice Mostyn has questioned the applicability of the ruling to people receiving care in their own home.

 

The acid test

The Supreme Court’s famous ‘acid test’ in P v Cheshire West and Chester Council and P&Q v Surrey County Council stated that a person was deprived of their liberty under Article 5 of the European Convention on Human Rights if:

  • they lacked the capacity to consent to their care arrangements;
  • they were under continuous supervision and control;
  • they were not free to leave the place they were in; and
  • their confinement was the responsibility of the state.

 

These provisions applied whether a person was in a care home or hospital – and thus eligible for the Deprivation of Liberty Safeguards – or receiving care in their own home or a community placement, for example in supported living.

 

In the latest case of Bournemouth BC v PS and DS, Mr Justice Mostyn ruled that a man with autism and associated challenging behaviour – known as ‘Ben’ – was not deprived of his liberty in the bungalow in which he received round-the-clock care from staff. The judge ruled that Ben was not under continuous supervision because his carers afforded him ‘appreciable privacy’ and he was free to leave because, if he did go, his carers would seek to persuade him to return rather than coerce him. If he refused, a Mental Health Act assessment would be considered and if this proved unsuccessful the police would be asked to exercise their powers under section 136 of the Mental Health Act to remove him to a place of safety. Mr Justice Mostyn said that unless and until this happened, “Ben is a free man”.

 

Resource implications

But in his ruling, Mr Justice Mostyn said the resource implications of local authorities bringing such cases was “staggering”, despite the introduction of a streamlined procedure by the Court of Protection – under an amendment to its rules – to deal with them.

 

Concluding his judgment in Ben’s case, he said: “In the light of the decision of the Supreme Court local authorities have to err on the side of caution and bring every case, however borderline, before the court. For if they do not, and a case is later found to be one of deprivation of liberty, there may be heavy damages claims (and lawyers’ costs) to pay.

 

“In this difficult and sensitive area, where people are being looked after in their own homes at the state’s expense, the law is now in a state of serious confusion,” Mr Justice Mostyn added.

 

Unless and until the Supreme Court consider another deprivation of liberty case, the Cheshire West judgment will stand. But, the judge’s rulings expose a disagreement within the judiciary about how the law should be applied, potentially creating confusion for practitioners.

Landmark Dols case adds to growing shortage of Relevant Persons Representatives

Landmark Dols case adds to growing shortage of Relevant Persons Representatives

 

The shortage of Relevant Persons Representatives (RPRs) has been highlighted by the case of an 88-year old woman (AJ) with dementia who was moved to a care home on a long-term basis after her family placed her in respite care.

 

Mr C, the husband of AJ’s niece, who had been appointed RPR by the council, made the decision to move her to a care home on a long term basis.

 

An Independent Mental Capacity Advocate (IMCA) was instructed to support Mr C. Yet despite AJ’s known opposition to the care home placement, no legal challenge was made to the Deprivation of Liberty Safeguards (Dols) decision until more than six months after she was admitted into residential care.

 

Litigation friend

When the IMCA finally spoke to Mr C he realised that he was not going to initiate proceedings to challenge the Dols authorisation. At that point the IMCA agreed to act as AJ’s litigation friend and instruct solicitors to make an application to the Court of Protection on her behalf.

 

Mr Justice Baker found that the best interests assessor (BIA) should not have recommended Mr C as AJ’s RPR because it was clear that Mr C supported her being placed in the care home long term. As a result, his own views conflicted with supporting AJ in any challenge. The court also found that the local authority should have scrutinised the BIA’s decision, identified the conflict, and referred the matter back to the BIA.

 

Struggling

The Court of Protection ruling has left councils struggling to find family members to support people lacking capacity to challenge decisions made about their care under the Dols.

 

The impact of the ruling is forcing authorities to turn to paid advocacy professionals to take on the role of RPRs for people subject to the Dols. However, advocacy services are themselves under severe pressure.

 

The situation has added further pressure to a Dols system already under significant strain from the tenfold increase in cases triggered by the 2014 Supreme Court ruling in the ‘Cheshire West’ case.

 

Everyone who is deprived of their liberty in a care home or hospital under the Dols is entitled to an RPR. The RPR must represent and support the person in matters connected to the Dols authorisation. This includes making a legal challenge to the Dols authorisation if the person wishes to.

 

Other than in cases where a person with the capacity to select their RPR chooses to do so, or an attorney or deputy with authority to select an RPR does so on the person’s behalf, best interests assessors (BIAs) must recommend a family member, friend or carer that they feel can fulfil the role. The local authority then decides whether to appoint them. Where a BIA cannot find a suitable family member, friend or carer, the local authority may appoint a paid representative, often an advocate.

 

It has been common for a family member or friend of the person to be selected as their RPR. However, the court’s judgment in the AJ case has triggered concerns over potential conflict of interests in loved ones taking on the role.

 

Women with learning disabilities subject to domestic violence – a neglected group

Female researcher

Women with learning disabilities subject to domestic violence – a neglected group

This research project, led by Michelle McCarthy with Siobhan Hunt and Karen Milne Skillman, found that women with learning disabilities suffered the full range of mental, physical and sexual cruelty inflicted on other women but were not given the same support.

 

Summary

Title: Domestic violence and women with learning disabilities

The research project was led by Dr Michelle McCarthy. Research workers were Siobhan Hunt and Karen Milne Skillman. All were based at the Tizard Centre, University of Kent.

 

Aims: This research project sought to hear directly from women with learning disabilities themselves about the domestic violence they had experienced. We also explored the views of the police and other professionals about their attitudes and responses to women with learning disabilities who experience domestic violence.

 

Methods: The qualitative method was semi- structured in depth interviews with 15 women with learning disabilities. The quantitative method was an online survey of 717 police officers and other professionals. We worked with a group of women with learning disabilities who helped us think about the issues, the kinds of questions we should ask and helped us to make a video.

 

 

Background

There is a huge body of evidence regarding domestic violence in the general population. In addition, there is a smaller body of research on domestic violence of women with physical and sensory impairments, which suggests that women with disabilities experience more domestic violence than other women and that they have less access to specialist and general domestic violence services. However, very little is known about the experiences of women with learning disabilities in relation to domestic violence.

 

Findings

Findings from women with learning disabilities:

 

  • The nature of the domestic violence

The women reported to us that the domestic violence they experienced was often severe, including the use of weapons, and violence during pregnancy, occurred frequently and over long periods. All forms of domestic violence were reported – physical, sexual, emotional, psychological, financial and coercive control. Women would typically experience multiple forms at the same time.

“ I know it was every week but I can’t be sure if it was every day”.

“It was 12 years of abuse”.

“I felt really scared of him. I thought one day I’m gonna end up in a coffin”.

 

  • Psychological impact

Unsurprisingly, the psychological impact on the women was considerable. All reported low self-esteem and self-worth and many reported developing mental health problems, most commonly anxiety and depression. Some began to self-harm and a minority had had suicidal thoughts or had attempted suicide.

“I was putting myself down, I couldn’t even look in the mirror”.

“ I wasn’t getting any help… I took an overdose, a small one”.

 

  • Perpetrator issues

The husbands or boyfriends of the women in our study did not usually have learning disabilities themselves but often had other problems, such as mental health difficulties, drug and alcohol problems, were unemployed or had criminal records.

  • Findings from police officers and other professionals:

 

Our survey was completed by 172 police officers and 545 professionals. There were large differences in the amount of training police officers got on learning disability issues compared to professionals. Only 20% of the police officers felt they had had a lot or enough training in learning disability issues, compared to 58% of professionals. With regards to specific training in communicating with people with learning disabilities – an essential skill for anyone hoping to support a woman suffering domestic violence – only 12% of the police officers said they had had a lot or enough training in communication issues, compared to 57% of professionals. Nevertheless, there were many areas where both police and professionals expressed high levels of agreement; for example, both had strong beliefs that women with learning disabilities are sought out by abusive men as easy targets and that the women stayed in violent relationships because they had nowhere else to go.

 

Recommendations

A key recommendation from our research is that the 2014 NICE guidelines on domestic abuse should be followed. For example, recommendation 6 states:

“Health and social care service managers and professionals should ensure front-line staff in all services are trained to recognise the indicators of domestic violence and abuse”.

If all staff in learning disability services received such training, they would have a far greater awareness of domestic violence, its dynamics and especially of coercive control. This could only benefit service users.

 

At a more fundamental level, health and social care professionals need a greater remit to work with those with a mild and moderate learning disability. With almost 90% of local authorities in England no longer offering social care to people whose needs are ranked low or moderate, those at the most able end of the learning disability spectrum, have effectively been moved outside the social care system and this renders them very vulnerable to abuse.

 

Conclusions

Domestic violence is usually seen as an individual problem, instead of the widespread social problem it is, and always has been, historically and cross culturally. Consequently, it is generally viewed as a problem to be solved largely by the woman herself, usually by leaving her home. However, the women with learning disabilities we spoke to were not generally equipped with the necessary information, personal or financial resources or support to take action to protect themselves or their children. They would have greatly benefitted from help and this was often not forthcoming.

 

We hope that the recommendations from our research project will lead to the police, health and social care services having a greater awareness of the vulnerability of women with learning disabilities to domestic violence and to becoming more responsive to their needs.

 

Key messages

  • There is nothing about having a learning disability which protects women from domestic violence. The full range of mental, physical and sexual cruelty inflicted on other women is also inflicted on women with learning disabilities.

 

  • Coercive control featured in the accounts of all but one of our interviewees. Threats and intimidation were commonly used to control what the women did, where they went, who they saw, who they spoke to and what they wore.

 

  • Most of the women we spoke to said it had taken them a very long time to realise they could leave the abusive relationship and that there were people who would help them. Most of them had not known about women’s refuges at the time. We have produced some accessible information for women with learning disabilities: a video and leaflet.

 

 

References and further reading

Please see research project website at http://www.kent.ac.uk/tizard/research/research_projects/domviolence.html

 

Findings from the research are currently being written up. However, the accessible outputs for women with learning disabilities are available now. The video called Don’t Put Up With It! can be seen online at https://vimeo.com/116967832 . Hard copies for women with learning disabilities are also available, free of charge, on request from Michelle McCarthy. M.McCarthy@kent.ac.uk. Copies of the accessible leaflet, also called Don’t Put Up With It! can also be obtained from Michelle.

 

 

This article presents independent research commissioned and funded by the National Institute for Health Research (NIHR) School for Social Care Research. The views expressed in it are those of the authors and not necessarily those of the NIHR School for Social Care Research or the Department of Health, NIHR or NHS.