Professional creators

Community Living 

Community Living

— Spring 2018

Talented artists and performers are breaking through in the areas of dance, theatre, music, drama and visual arts – but some still demean their work as ‘therapy’ if they have learning disabilities. Gus Garside reports on the successes and reflects on the barriers that remain

 

A visual artist and a film maker, both of whom had learning disabilities, were attending a conference back in 2012. Art by people with learning disabilities was under discussion and a delegate said: “The arts are such good therapy for them.”

The artist and film maker were understandably put out by the comment, feeling that it illustrated a lack of regard for their work and the work of other artists and performers with learning disabilities.

They said: “We have all experienced having people patronise our work,” and noted it was all too often put under education, outreach or community work programmes rather than seen as professional arts.

So a project called Creative Minds began. Members of Carousel, Action Space, Rocket Artists, Corali Dance Company and Face Front Theatre Company came together to organise a conference at the Brighton Dome in 2014. They invited artists with learning disabilities and representatives from the wider arts world to join a discussion.

Since then, Creative Minds has developed into a national project. It held conferences in Bristol at We the Curious, (formerly the Science Museum) in 2014, in Ipswich at Dance East in 2015 and, last year, at Home in Manchester and Mac Birmingham. Each conference was planned and hosted by a regional team of artists with learning disabilities. Each one has been different. It has been a truly creative journey.

The year 2012 also saw the birth of Unlimited, a commissioning programme established as part of the Cultural Olympiad linked to the London Olympic and Paralympic Games, to support “ambitious, creative projects
by outstanding disabled artists and companies”.

In the first round, singer-songwriter Jez Colborne of Bradford’s Mind the Gap Theatre Company received one of the commissions to create Irresistible. Two years later, he was commissioned by the New Music Biennial to create Gift. Set in a shipping container, this musical installation was presented at the South Bank Centre and in Glasgow as part of the Commonwealth Games Cultural programme.

Two years later, dancer and choreographer Chris Pavia of Stopgap Dance Company created The Awakening – the first professional work made for national touring by a choreographer with Down’s syndrome.

In 2016, Action Space artist Thompson Hall was commissioned by HOUSE and Outside In to take part in HOUSE Festival 2016 alongside Turner prize-winning Gillian Wearing.

Singer-songwriter Daniel Wakeford, who is based with Carousel, embarked on his first UK tour, which ran during 2016 and 2017. He now has over 52,000 fans on Facebook, where his videos have been viewed more than 100,000 times.

This tiny selection of random highlights from recent years illustrates how the involvement of people with learning disabilities in the arts is starting to go mainstream, albeit slowly and sporadically.

Why create art?

So why is it important? Let’s hear first from some of the delegates to Creative Minds conferences about why they create art for public consumption:

“To say something or change something about the world.”

 “I’ve got something I want to tell you.”

 “This is my career.”

 By sharing their art through exhibitions or performances, they enrich us all by adding new voices and perceptions and often new ways of doing things.

However, for most, art is not created to be seen by others. It is simply an integral part of the human experience. The process of creating art is potent and personal:

“My art tells me who I am – it shows you who I am.”

Barriers

Research we have carried out with a number of venues has highlighted four significant barriers to the work of learning disabled artists being given a higher profile in the wider arts world:

  • They say they don’t know what work by learning disabled artists and performers is out there that is appropriate for a wider public
  • They remain concerned about issues of quality
  • They are concerned about whether there is a big enough audience for it
  • They need help in terms of marketing the work.

Of course, the more work that is seen, the easier it is to address all this. More work will be known to be available, quality will be demonstrated and audience development can be addressed.

Being critical, not simple

There’s a question about how or indeed whether the work is talked about. Learning disabled artists have said they feel journalists often “sit on the fence”, possibly because they don’t know how to talk about the work.

“‘Fear is a barrier to do with ignorance,” is how one Creative Minds delegate put it. Another said: “We are portrayed as stupid and simple. People, not wanting to hurt our feelings, say our work is good while actually thinking ‘that was rubbish’ – we can take it!”

Or, as well-known dancer DJ of the Corali Dance Company has said: “not all learning disability work is great and it doesn’t help if people say it is. We need to be more self-critical, but this is tied in with self-confidence. A balance is needed.”

Critiquing is essential to development. However, one performer said: “I believe in my own quality as an artist. How ‘good’ the art is up to the person watching.”

Role models

Another reason why it is important socially to see learning disabled artists out there lies in the value of positive role models. Artists, musicians and sports people can provide these roles; TV portrayal can be very effective.

The visibility of great disabled role models on CBBC is something that the BBC is rightly proud of. It can inspire young disabled people and sow the seeds of acceptance in all young people.

However, actor Sarah Gordy (who has appeared in productions including Upstairs Downstairs and Call the Midwife), speaking at the Creative Minds north conference, said: “TV is inclined to only have stories about the problems disability brings.

“I had a young learning disabled employee in a supermarket come up to me. He said: ‘Sarah you were brilliant yesterday, but you are not doing us any favours. Your characters are always helpless and sad. Please play a character with a job, a life and giggles.’ What could I say? I don’t rule the world. That is the challenge ahead.”

In the subsidised arts sector, exciting times are ahead. Many more disability arts organisations are due to receive regular funding from Arts Council England from this April. In addition, all larger organisations will, for the first time, have to demonstrate how they address Arts Council England’s “creative case for diversity” in terms of their programming, artists, the staff they contract and audiences.

An example of a larger organisation already embarking on this is Birmingham Royal Ballet, which has for some years given space and opportunities to the unique, hugely entertaining Freefall dance company. Freefall has now moved into the ballet company’s main artistic programme from its education programme. This is likely to bring it more into the sphere of mainstream, public dance.

All in all, it feels that the creative sector is growing in confidence and is beginning to raise its profile –and this can only be good news for the learning disabled community and, indeed, for everyone.

www.creativemindsproject.org.uk/

Gus Garside is national coordinator of Creative Minds

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Passport to the polls

Community Living 

Community Living

— Spring 2018

People with learning disabilities are being helped to exercise their fundamental right to vote in elections under a scheme run by care provider Dimensions. Simon Jarrett reports

 

A key element of civic participation in a democracy is to be able to express your political preference through the ballot box.

For many years, people were deemed legally incapable of voting, based on Victorian legislation about “lunatics” and “idiots”; these rules were largely removed by the Electoral Administration Act 2006.

Anyone aged over 18, including those who have a guardian or welfare attorney, as well as care home residents, has the right to vote, provided they are able to vote on their own behalf. A guardian or welfare attorney cannot decide who to vote for on behalf of the adult, although they can help the person to register or cast a proxy vote.

Electoral registration officers are expected to assist people who may have any difficulties with the registration process because of physical or mental disabilities.

A person must choose for themselves who to vote for – no one can decide on their behalf. This leaves a grey area, often at the discretion of presiding officers, which can still cast doubt on the capacity of people with learning disabilities to vote, particularly those with severe impairments.

Care provider Dimensions became aware of the problems that can face learning disabled voters during the general election of 2005, when it received feedback from a number of people on the difficulties they had experienced in exercising their right to vote.

One of them, a Dimensions council member who has mild learning disabilities and cerebral palsy, was turned away from the polling station as he had a family member helping him to read the candidates’ names and information in the polling station and the booth. The presiding officer said that his family member was not allowed to come into the station, let alone the booth, which caused his anxiety levels to rise to a level where the only option was for him to leave. As a result, he never got to cast his vote in the 2005 general election.

In response to this, Dimensions developed a voting passport to help
make polling stations and the voting process more accessible for people with learning disabilities or autism.

A voting passport is an easy-to-read A4 sheet of information about an individual’s voting needs. It is designed to be handed to polling staff so they can easily understand the reasonable adjustments needed to make a person feel more comfortable to vote.

It includes an “About me” section with the person’s name, a list of things to help them to vote and space for the person to write who they would like support from, their name and if they are eligible to vote in the UK.

The passport also includes a section on legal rights about voting to debunk common myths about voting rights for people with learning disabilities, which can be held even by presiding officers.

It also explains what other people can do, such as explain the ballot options or accompany someone into the polling booth, and what they cannot do, such as make a decision for a person or mark the ballot paper against their wishes.

The passport has been used successfully since 2014. Feedback from people using it showed it provided easy steps to get through the voting process and reinforced their determination to participate in the national political conversation.

To be outside the voting process is to be seen as someone who has no stake on society, and therefore lacking the rights citizenship confers.

To participate in public life is to be a person with rights. That is why participation in the voting process – still alarmingly low in the community of people with learning disabilities – is an essential exercise in personal power. n

To download a free copy of the Dimensions voting passport, and for more information about their Love Your Vote campaign, go to www.dimensions-uk.org/campaign/love-your-vote/

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The real challenging behaviour

Community Living 

Community Living

— Spring 2018

The real challenging behaviour – by the professionals who think they know best

The label of ‘challenging behaviour’ is being turned back on those who use it. Sam Sly tells the story of #IAMchallengingbehaviour – and how a movement against an unfair and stigmatising term is taking off

I am sure that many campaigns, as with this one, came about through a passionate discussion putting the world to rights followed by the feeling that you shouldn’t just moan – you have to do something.

The rumblings of the I AM Challenging Behaviour campaign started in early 2017. Nic Crosby from GatherBuildWork and I were playing with ideas on how we could help the wonderful people we worked with who were being treated in horrendous ways and incarcerated in hospitals – because professionals had labelled them as having “challenging behaviour”.

Double standards

Our view was and still is that we all have ways, sometimes antisocial and undesirable, of expressing anger, frustration, sadness or anxiety. Yet, because we are valued citizens, when we show our feelings it is (a) often not seen as problematic and (b) called what it is – anger, sadness or anxiety. We don’t get negatively labelled for the rest of our lives.

However, the people we work with who have learning disabilities or mental health needs, who are often not seen as valued citizens, are slapped with a label of “challenging behaviour” and their life written off when they express their anger, frustration or anxiety.

Our first idea was to get a badge printed with the words “I have challenging behaviour”, which we could wear to demonstrate solidarity with those we worked with.

Genius idea

Then, in the summer last year, a group of Twitter and Facebook learning disability activists, including myself, Professor Chris Hatton from Lancaster University and Mark Neary, the father of Steven Neary, were having a chat about how fed up we all were with the negative, exclusive language used by professionals in health and social services.

I broached the idea of the badges. Chris made a suggestion which was a work of genius – to use the phrase “I AM challenging behaviour” instead of what I had suggested. This would enable wearers to show a commitment to addressing the real behaviour that needed to be changed – that of professionals and other people who think they know best and label others, and whose behaviour stops people getting the great lives they deserve.

So, I bought the first 100 badges in August and set up our Facebook page
and started using the hashtag #IAMchallengingbehaviour on Twitter.

The campaign is self-funding; badges are bought with donations and people send a stamped addressed envelope to save on costs.

We have now distributed 3,500 badges, reaching America, Australia, Canada, New Zealand and Slovenia, as well as Wales, Scotland, Ireland and all corners of England.

We have encouraged people to send in pictures of themselves wearing the badge and making the pledge to challenge behaviour.

Those wearing the badges have included Labour MPs, the chief inspector of the Care Quality Commission, the chief executive of Skills for Care, chief social workers for adults, Ofsted managers, whole teams of providers, social workers, journalists and others.

Most importantly, many of those wearing badges are advocating for themselves, family members or someone else with a learning disability. This is what makes me most proud.

Like-minded people

People have told us that wearing this little badge makes them feel part of a positive movement with like-minded people, which gives them strength.

One mother told me it gave her that little bit of extra courage she needed to speak up for her son when in a difficult meeting.

The badges have also sparked conversation and debates with people who know nothing about people with learning disabilities, and have contributed to policy change in Ofsted.

Bingo calls time on language

Recently we introduced “Say what you mean” bingo to tackle the negative use of language in services. Bingo cards, with words we want people to stop using or use more, can be taken to meetings and conferences and the words ticked off as people talk. It has been great to see debate and discussion generated from this new venture. n

To join, help to develop the campaign, donate or get a badge, get in touch through: t @SamSly2  f http://tinyurl.com/yc977vba  or by using #IAMchallenging behaviour on either site

Sam Sly is a regulation, health and social care consultant who works with people with learning disabilities and their families

 

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Reasonable adjustments when claiming benefits

Charlie Callanan 

Charlie Callanan

— Spring 2018

The DWP should make ‘reasonable adjustments’ to help people use its services. Charlie Callanan looks at the law around this and what happens in practice

The Department for Work & Pensions has a legal duty to make reasonable adjustments to help people with any disability access its services.

However, firsthand accounts of some of the difficulties that people with learning disabilities encounter in dealing with the DWP and its delivery arms such as Jobcentre Plus have come to the attention of Community Living.

Concerns about the DWP raised by people with learning disabilities include:

  • Clients having difficulties getting into local job centres if an appointment has not been made first
  • DWP staff having little if any knowledge of or training in how to best support people with learning disabilities and hidden impairments
  • Difficulties with the process of claiming benefits
  • DWP staff failing to identify clients who should be offered additional assistance, and clients who do not identify themselves as in need of extra help.

The Equality Act 2010 gives organisations providing services to the public a legal duty to make reasonable adjustments in various circumstances.

This includes anticipating the additional needs of people with various mental/learning, physical and sensory impairments, then making adjustments to meet specific needs when these become apparent.

Broadly, these adjustments should be made to ensure as far as possible that no one is put at a disadvantage when they are accessing a service.

DWP’s own guidance

The DWP has internal guidance, covering all their programmes, services and premises, to help staff to support customers to access its services.

The guidance states: “Every time that there is customer contact by phone, online or in writing, staff must actively seek to find out if the customer needs additional support or a reasonable adjustment. What is a reasonable adjustment depends on the circumstances of the case and will be specific to the needs of the disabled customer.”

Clients should not have to repeat this information, as staff are reminded to record the details for colleagues to see when this customer returns.

DWP guidance includes a list of some of the reasonable adjustments it will make. These include adjustments that you would expect, such as providing written information in alternative formats or signers for people with a hearing impairment.

There is little guidance for staff on how to deal with people with learning disabilities, apart from checking if the claimant requires extra support to comply with processes, and to complete and then manage their claim.

While the DWP says it is able to provide general documents, such as leaflets and signs, in an easy-read format, it cannot provide individual letters, such as those confirming an individual’s benefit entitlement, in this way. And these letters can at times bamboozle the most experienced advice worker.

This appears to be a systems issue for DWP as its decision-making processes cannot cope with deviation from standard letters, such as producing easy-read decision letters. Equally, clients who drop in at job centres are turned away because the system is set up to officially only see clients who have booked an appointment by telephoning their benefit delivery centre. However, doing that takes time – assuming the client has the confidence and ability to make the call or someone to help them in the first place. Anecdotally, clients can take a chance and turn up at job centres and may still be seen without an appointment.

Intermediary assistance

The assistance of an intermediary is accepted as a reasonable adjustment for people with disabilities.

However, the authority to represent a client is only for a particular issue
(eg helping with one benefit appeal) and is not treated as blanket consent to assist with any DWP matter.

This has become an issue particularly in helping clients in dealing with universal credit claims, which requires explicit consent. In addition, this does not last for the history of the whole UC claim but applies only to one particular query or piece of work.

When UC, which has been built on the assumption that claims are “digital by default”, is more widespread, there are likely to be issues for our clients. They may struggle to get to grips with dealing with an online claim system. The majority of claimants will need to log in regularly and maintain records on their claim as part of the requirements of keeping their benefit and to avoid sanctions.

“Assisted digital support” is available to UC claimants. However, they will be encouraged to be independent in managing their claim, following “staff coaching, challenging and motivating claimants to become more digitally competent”.

DWP has policies in place to fulfil its duty to make reasonable adjustments. However, how these are translated into working practices and in our clients’ day to day contact with the agency is less straightforward.

As so often in dealing with DWP and the job centre, clients may not be able to be independent as they rely on intermediaries to help them to make and maintain benefit claims.

An internal DWP document, Reasonable Adjustments, provided via a public access request, is available online at: http://tinyurl.com/y8o83ont

Charlie Callanan is an adviser and writer on welfare rights issues. He has more than 20 years’ experience in the charitable and statutory sectors

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Letters

Community Living 

Community Living

— Spring 2018

Mixed emotions about supported work

Reading the special employment issue (CL 31: 1) raised contrasting thoughts and emotions for me.

As a social worker, I am deeply committed to social justice and have always had a rights-based approach to my work. It was heartening, therefore, to read about projects that facilitate work experience and paid employment, such as A Potential Diamond, Do Your Thing, Bead Sew Crafty and the impressive Project SEARCH.

I was moved by the contributions from David Braunsberg and Sara Pickard, who described their personal experiences.

As well as a social work academic, I am the sister of a 54-year-old woman who has learning disabilities and is deaf, and who has been helped by a supported employment scheme for almost 30 years.

Before her work placement, my sister’s experiences of education and work had been segregated. These gave her a deep sense of her differences, and caused her to feel very negative about her disabilities.

She was found a work placement with a major chemist chain, which was perfect.

Without job coach support, my sister’s place in the company would not have lasted. Sadly, local authority funding for her scheme was lost, and the work was taken over by a social enterprise which will offer a much reduced service.

Thankfully, because of the stability of my sister’s placement and the ongoing commitment from the project, her support should not be affected.

My sister has never been employed or paid – and the injustice of that is not lost on me. She doesn’t understand pay issues and, as a family, we have been unwilling to push this for fear she could lose her role.

However, I will be forever grateful and incredibly thankful for the support and opportunities she has had. The placement has given her a routine and structure, and the opportunity to participate in a meaningful, socially valued role.

She feels good about herself, and has a job she does well and enjoys. Her skills are recognised and she is relied upon. She benefits from the experience of being a trusted team member, and is respected for what can do and as the person she is.

Jane Lloyd University of Central Lancashire

We need to target council policy makers

I was interested to see your conference report on the named social worker pilots (CL, 31: 2). I attend many “reviews” – usually attempts to cut services – to advocate for people receiving direct payments.

After a long time providing this service, I have found there are very few social workers these days. Those who attend reviews in my area have had to forget what they have been taught about social work at university and adapt to work within the local authority’s policies.

I feel little progress will be made until directors of services attend such events. Legally, people have rights on their side but have to mount a challenge in court to have them granted. Very few people can afford this or have time to go through this.

I find it harder and harder to keep care packages for people because of local authority policies to cut services.

It is these policy makers we need to get the message across to. Until then, I cannot see much change for the good happening.

Les Scaife West Lancs Peer Support, Skelmersdale

Thanks for your powerful voice

I am a freelance social work consultant who needs to keep up with research, best practice and the challenges faced by people who need support to live a good life. I also need to understand how policies and legal changes are being implemented.

I have found the articles in Community Living thought provoking and motivating, as the balance between successful changes and ongoing challenges (such as the overuse of assessment and treatment units) is excellent. The voices of people with learning disabilities are heard in a variety of imaginative ways.

The magazine is very powerful in getting painful and difficult issues into the public domain, and tackling complex issues with implications for quality of life and human rights, while celebrating the contributions of people with learning disabilities and those who support them.

Thank you to the Community Living team and authors for a great read.

Ellen Law Cardiff

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The Balance of Rights – a film on challenges faced

Community Living 

Community Living

The Balance of Rights produced by AF film and Media CIC in partnership with East Kent Mencap.

The Balance of Rights explores the challenges faced by people with learning disabilities in the UK today. The issues surrounding health housing and employment are complex but point the discussion clearly towards the social equality agenda. The Balance of Rights brings together the many voices fighting for change and sheds an unflinching light on an issue left largely in the dark for the majority of our society. The Balance of Rights

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What’s the Residential Forum?

Community Living 

Community Living

The Residential Forum is an independent body of thinkers seeking to promote supported accommodation and residential living as a positive choice for people of all ages and thereby make a contribution to public life in the UK.

Whilst it is concerned with all social care, it includes learning disabilities and its manifesto would support principles and concerns that Community Living magazine shares. It aims to:

  1. Make living in supported accommodation and residential settings a positive choice
  2. Build a culture of respect for each tenant or resident and their relatives
  3. Personalise caring and support though co-production
  4. Ensure positive leadership at provider, professional and political levels
  5. Reform the commissioning of supported accommodation and residential living services
  6. Resource supported accommodation and residential living for a fair price and a fair wage
  7. Regulate for better outcomes, safeguards and quality

See their website for more information  The Residential Forum

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CASCAIDr – new charity giving access to legal advice and help

Community Living 

Community Living


WHAT DOES CASCAIDr’s SERVICE INCLUDE?

  • A telephone helpline – 4 days a week – for a booked half hour free ‘steer’ for people who
    are not sure if they’ve even got a legal problem.
  • A referral form for people to fill in online
  • Volunteers to help people to express all the relevant detail of their predicament, if they are struggling.
  • Expert advisers who will produce the checklist and letters that are the free output.
  • Support and guidance for those who want to crowdfund to bring formal legal proceedings.

SUPPORT CASCAIDr

Volunteer, be a caseworker, donate, link on social media…. http://www.cascaidr.org.uk/

Commissioners’ conference: Successful Pathways towards Integration – Building Resilience within a Changing World

Community Living 

Community Living

— Winter 2018

Commissioners conference:

Successful Pathways towards Integration – Building Resilience within a changing world

When wolves were reintroduced into Yellowstone National Park, this regenerated areas including forests now avoided by deer, changing rivers due to less erosion, and birds and beavers increased…. Alex Crawford, Senior Planning and Service Development Manager, Aneurin Bevan University Health Board, chairing the conference suggested that if the outcome had been specified as this, it is doubtful that anyone would have expected to bring in wolves!! He was underlining a key message of this conference on integration, that specifying outcomes in such a complex world can have such unintended consequences and is unlikely to lead to better commissioning.  Building on this, several conference speakers also emphasised the importance of building trust and relationships across services, between providers and commissioners, between and with communities and most importantly with people and families, listening to them and helping them to be in the driving seat.

Margaret Willcox OBE and current ADASS president opening saw the challenge as how to connect the different bits of health social care and housing & to be there when people most need it. The ADASS survey shows mounting cost pressures for working age adults with disabilities, with, for the first time, learning disabilities growth equalling that for the elderly, with the spend being at least as much on disabled people as on older people.  She stressed the importance in partnership of building trust and relationships and a common purpose, modelled from the top, with mutual respect, and valuing of each other’s contribution. People’s different roles still need a coordinating lead person for integration – ‘ a choirmaster so everyone sings the same tune’. She suggested if you get the relationships right and share the risks, agreeing responses when things go wrong, then the structure may emerge. But it needs proper resourcing with the Government understanding the need to look at both services who serve the same people. She urged that colleagues and Ministers to have a conversation about what the public want and how to pay for it BEFORE there’s a green paper looking at options.

Toby Lowe Senior Research Assistant from Newcastle University provided the research evidence to challenge the current outcomes -based contracting and performance management, showing how implementing outcomes-based performance management such as payment by results, outcome-based accountability or results-based management holding people accountable for particular outcomes, makes it harder to produce good outcomes. People look to produce good-looking data which then moves away from meeting client need. It becomes ‘gaming’, distorting efforts, leading to a lack of innovation (1998 study). The DWP’s work programme paid contractors by specified results but resulted in ‘creaming’ ie concentrating on those most likely to get a job, and ‘parking’ ie putting to one side those presenting the biggest challenges. The problem is the difficulty of measurement of the very variable impacts on people’s lives, so they count ‘proxies’. Most recently with VW cars, the measurement of emissions were “gamed” by measuring when the car wasn’t moving. In addition, there’s an attribution problem as we can’t assume an outcome from a particular input, given all the other factors out of our control.

Commissioning should be about making systems work better -systems being the people, the families, communities, the cafe, the postmen, landlords ….etc. Commissioning needs to recognise that most people want to do a good job so you don’t need to motivate this.  Learning drives improvement, so commissioners need to create an environment which encourages honesty about what happens and understands that decisions are made in uncertainty are complex so some will be wrong, but unless people talk about the reality, noone learns. Measurement will help reflection and understanding if used properly. Commissioners hence are eco-system engineers with networks key to developing healthy systems. They need to build positive relationships nurturing trust (between providers and with providers),  working with them and using the data to reflect and learn to improve.

Plymouth working on services for adults with complex needs won a public finance innovation award by working over 2 yrs with trusted relationships and co-production using a single alliance of 26 providers and a ‘wicked problem’ forum. By sharing the need to save and problem-solving together, they saved £500k. A Dutch nursing agency,  Buurtzorg, completely transformed their service by devolving the decision-making to self-organised teams of 12 who build bespoke solutions for and with each person. This decreased care costs by 50%. http://www.buurtzorgusa.org/about-us/

Mark Saunders head of Greater Gwent’s Health Social Care and Wellbeing Transformation support programme shared how a residential homes’ abuse scandal Operation Jasmine led them to review their monitoring and to find more innovative ways to get feedback. Volunteers from an NHS retirement group have confidential discussions with people and relatives following My Home life Cymru standards. Tanya Strange from Primary Care inspired us with their community connecting activities, tackling loneliness having identified its workload on GPs and prescribing. Funded through the Health Technology Wales fund, their website www.ffrindimi.co.uk was developed as a single point of contact for self-referral. It finds community connectors matching volunteers with lonely people according to their interests.. Further connecting activities and voluntary linkages have developed. The ‘Count Me In’ challenge got the Public Service Board signed up to allow staff 1 hr/week to volunteer and had 152 people in 1 week; the DWP refer disabled people into volunteering. One nurse in a nursing home with a lot of older people with families living abroad, bought a cardboard cruise ship, gave residents ‘passports’ and with staff dressed up as crew, they run a weekly cruise “calling” to someone’s relatives. ‘Skype a relative’ increased inter-generational activity with school children coming in. A cohort of welsh-speakers in Caerphilly/Abergavenny started a welsh scrabble club now hosting 2 bi-lingual clubs costing £24 for the scrabble sets and linking to children learning welsh. A sign language centre in Newport has deaf volunteers training police cadets in conversational deaf language so can go out.

Falls had reduced by 60% in one Essex Home as the manager decorated zimmers having identified that people with dementia don’t see grey very well. Tanya’s event called Pimp my Zimmer attracted 350 people with college student dementia friends doing a dance; exercises with zimmers; a zimmer and sticks cat walk and they’ve since developed a campaign to lobby manufacturers to pre-pimp zimmers.

They are linking with GPs and pharmacists on loneliness and the use of anti-depressants; getting assessments to consider the impact of living alone and on discharge, want to work with business in the community and get more public sector to release staff volunteering,  and to get nursing and residential homes to look harder at how to address having lonely isolated people surrounded by people? Thoughts include building recruitment in communities to train volunteers to look out for and protect people

Advonet with Leeds City’s Good Lives Leaders’ (GLL’s) project developed a contract management monitoring system using people with learning disabilities and family carers as quality checkers. Following a 4 days design workshop involving a range of stake-holders from CCG, Adult social care commissioning, advocacy, providers, people with learning disabilities and family carers, the GLL scheme, it aimed to give an independent, ‘expert by experience’ view of services for people with learning disabilities, to help improvements and provide extra value to other checks.

Experts by experience  go in to supported housing, residential and nursing homes and checks 3 key areas

  1. Is it a good place to live in?
  1. Do people feel valued in the community or at work
  1. Are people supported to have the full range relationships and a social life

Changes from their report-backs include: personal care support by same gender staff; change a lock that a wheelchair person couldn’t reach; someone wanting to move on/out referred to social worker and many more

The role is a valued one which ensures everyone is involved and listened to, gets thanked, has letters sent, is accorded the same access to the council offices as other employees and they have a  graduation ceremony at Leeds grand civic hall , are invited to events, get a Xmas party and gift cards. The mix of group working together has led to a better understanding/better collaboration on other things.

Their self-review has changed the report format to include more information, resulted in training on intensive interaction and now involves GLLs alongside Inclusion North in training new leaders.

Costs are relatively low as Advonet and CIN are already commissioned so they can use already existing rooms for example and there is a business support member. They’ve made 2 videos using 8 carers and 8 people with the success of the scheme shown by plans to extend this to other client groups. They decided not to patent it as they are willing to share their scheme widely.

Given the relative demise of day care ( see Mencap’s Stuck at home 2012 report) and the expectation that working age adults will be disproportionately hit by further cuts, Angela Catley from Community Catalysts made the case for the importance of doing things differently.Community Catalysts  aim to find ways to get more for less by unlocking assets and resources and developing and testing creative ways to deliver the support that people need. The  Enterprising Minds project run by charity Hansel and Community Catalysts in partnership with North Ayrshire Council supports people with learning disabilities or autism to develop their community involvement  http://www.hansel.org.uk/Uploads/users/wmcgill/99da720cf95d405a21f7d6b49baf7c4f/1432741231_jxUz0a7E_hanselenterprisingmindsmay2015.pdf

Ashley loved to baking and her dog Murphy through local links developed ‘Bow wow biccies’ with help from a dog biscuit factory to sort out the complicated rules etc. She’s a wheelchair user with a severe learning disability and limited speech so wouldn’t have been thought able to have her own business. However, with links made to pet shops, dog grooming parlours etc she offers a fair trade which produces a little income. This impacts on how she sees herself and is seen.

In 2010 working with Oldham commissioners, 18 people were helped to start their own enterprises – one of whom was Jen Blackwell with Dancesyndrome(see Community Living 30.4  ‘It’s lift-off time for DanceSyndrome as Jen’s dream comes true’) .Kirklees’ ‘Do your own thing’ run by Community Catalysts looked at people not eligible felt to be at future risk and helped them to use their skills and talents. Jamie had a learning disability and loved working his allotment. Community Catalysts helped him set up and run his own gardening group called Learn and Grow where he made new friends and gained skills and confidence in his role as group leader. He’s been developing a second gardening group at a local café and working there as a volunteer. A busy local self-employed gardener got in touch offering the chance of future employment or self-employment for Jamie and others. Other groups have also been helped to grow like this where people help others to do for others and thus gain themselves.

 “…people…are not just passive recipients of social and health care, but have expertise, gifts, strengths that can help them achieve their vision for a good life, contribute to their local communities and maximise the impact of resources”

Bartnik 2008

To access the presentations on the day go to http://www.ncctc.co.uk/presentations/oct-2017/

Other keynote presentations included:

Peter Hayes on developing a practical toolkit for frontline commissioners as a key part of a partnership project with NHS Clinical Commissioners to develop a consensus on good practice for commissioning between NHS and Adult Social Care. (Also delivering a workshop on this)

Sue Evans CEO Social care Wales outlined their Social Services and Wellbeing (Wales) Act 2014 implemented in 2016 seeing this as giving permission to do things differently, ‘ going back to practice’, in considering what matters to the person and keeping specifications loose to give chance to change and adapt.

James Anderson NHS England on how they are designing an operating model of Integrated Personal Commissioning (IPC) across Gtr M/C in  health and social care in the 33 CCG areas and are using a model to roll out personalised care in Greater Nottinghamshire; Dorset; and Milton Keynes/Bedfordshire/Luton. He discusses pilots giving evidence for integration and personalisation, which approaches include health coaching, social prescribing, and personal health budgets with 156 pilots on wider personalised care including wheelchairs, learning disabilities and mainstream continuing health care and Warrington’s use of phbs for end of life care including health and social care working together with community assets.

A Conference Panel How to Improve Recruitment Strategies tackled the growing recruitment crisis Panel members included Steve Hale Recruitment & Resourcing Manager Exemplar Health Care; Geoff Roberts – Effective Purchasing Ltd; sharing ideas that have helped from social media use, promoting employee advocacy, reducing the time it takes to recruit, tailoring adverts to specific audiences… but also ideas of in-house academies to grow your own, and encouraging people into second careers from business. Aileen Murphy National Audit office who highlighted the huge losses from LAs’ budgets and the high turnover particularly in care and nursing, likely to worsen with Brexit. and Sue Evans pointing to the difficulties in filling leadership and management posts with nearly half having less than 2 years experience and more than 25% due to retire in the next 2 years.

Steven Pleasant MBE CE Tameside spoke on Learning the lessons – Reaping the benefits  Combining the LA/CCG commissioning functions within the Greater Manchester Combined Authority.

Workshops included:

William Roberts NHS England on looking at the vanguards on best practice in National Care Homes.

Michelle Atkinson and Rosemary Brookes Leeds City council on social value charter – How to derive greater and tangible social benefit from our commissioning activity.

Phil Messere Big Lottery Fund on what’s been learnt from outcomes based models since 2010, particularly those linked to adult services. Targeted at commissioners interested in payment by results, social impact bonds & improving fee for service models.

Lisa Thomas & Karen WilcoxCollins, Exemplar HC & Lesley Carver & Karen Massey NHS Vanguard:  on sharing best practice in residential care to reduce costly & avoidable acute admissions Case study showing how local level best practice & integrated working between health & social care delivers direct financial benefits to funders of acute care by reducing avoidable admissions.

Steve Vaughan National Commissioning Board & Fiona Richardson IPC on Market Analysis of Care Homes for Older People across England & Wales which will compare & contrast the care home markets for older people in England and Wales and identify key actions towards service transformation.

Margaret Willcox ADASS and Ellen Rule from CCG on Nottinghamshire ACS and Gloucestershire STP Challenges and Rewards Discover the learning so far. What has worked and what is needing to be improved

North Yorkshire County Council on Developing a preventative programme within Public Health focussing on Substance misuse contract – How tsave money whilst improving outcomes for service users

Aneurin Bevan University Health Board Reducing isolation through 3 strands – Chat, Community, Resilience- what impact has it had

The North East London Sexual Health Transformation Programme Collaborative commissioning approaches to transform integrated sexual health services

Vanguard Cheshire and Merseyside Ensuring that no child in Halton will attend secondary school overweight by 2020 Find out how they will achieve this

Bournemouth on Co-production in commissioning for carer services

Nottingham – Is there a role for LA Accountable Care Systems (ACS’s)?

Building a new home? Lessons to be learnt! Having tendered for the building of a new care home which should be awarded at the end of September- A LA shares the lessons learnt!

Stockport NHS Foundation Trust -Dignity in Care (Daisy Award Scheme)  How it improves outcomes

Leeds and Kent – Linked data-sets Can linked data-sets across health and local authority make a difference closing the health inequalities gap and improving health of the population?

LGA and NHS Clinical Commissioners guidance for integrated commissioning for better outcomes – LGA & DCLG

Welsh LGA- Options for Securing Services: How the boundaries and possibilities offered in commissioning Home Care services through the procurement regulations have been explored

Leonie Cowen  “What is a Grant & What is procurable. More than you think!

Data Sharing across STP’sDiscover the emerging thinking in data sharing models at STP level NHS England

Making Supported Employment work in an increasingly competitive jobs market London Borough of Newham

Market Analysis of Care Homes for Older People across Wales. Welsh LGA

Three Conversation Model that saved West Berkshire millions  Partners4Change/ OLM

 

 

 

 

 

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Blue Badge consultation – time for fairness not post codes?

Community Living 

Community Living

Reviewed Blue badge scheme – your views are needed

Judging whether someone is eligible for a blue badge is devolved to local authorities. They vary in the extent to which they consider hidden impairments. More specifically, they don’t all consider the impact on people’s ability to go out and walk/travel to places due to such as dementia, learning disabilities, autism and longer-term specific mental illnesses.

Differing assessments

Assessed by independent assessors, some Local Authorities concentrate on physical mobility issues only and having a high level of DLA/PIP mobility isn’t sufficient to get a blue badge.

Including hidden impairments

The new proposals would help ensure issues other than physical ability to be considered. DO respond – helping people to get out and about and be able to park in accessible places that minimise risks and assisting someone to access important activities can be vital to someone getting their life.

https://www.gov.uk/government/consultations/blue-badge-disabled-parking-scheme-eligibility-review/blue-badge-scheme-consultation-on-eligibility

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Paradigm’s Gr8 support – values led by support workers

Community Living 

Community Living


Not sold on minimim training standards for support workers? Quite right too. What’s needed is real commitment and adherence to values that put the person at the centre and go many miles further. Why not look further. Individuals can sign up and benefit from the on-line company and interactions with like-minded people, or employers can sign up teams http://www.paradigm-uk.org/gr8-support-movement/

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A chance to stop admissions under the MHA for behavioural reasons?

Community Living 

Community Living

A chance for carers and service users with experience of being detained under the Mental Health Act to have their say about what’s wrong with it and maybe what would help. Consultation closes at end of February –
pass it on. Wouldn’t it be good to find learning disaiblity/autism and behavioural reasons for detention being excluded from ‘disposal’ into ATUs…..? Maybe we should encourage them to seek some evidence from CTRs on the Transforming care work? https://www.gov.uk/government/groups/independent-review-of-the-mental-health-act#service-user-and-carer-survey

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Who speaks for people with learning disabilities?

Community Living 

Community Living

— Winter 2018


Does self-advocacy always trump parent and family advocacy? Do they have fundamentally different aims? Jan Walmsley begs to differ, and calls for unity.

Quote: Self-advocacy has made only minor, symbolic inroads. The ‘system’ just does not listen to people with learning disabilities.

Who should speak for people with learning disabilities?

I was prompted to make this the subject of my column by the bitter exchanges on Facebook which preceded the closing down in August this year of Seven Days of Action (1). Seven Days of Action was a campaign, led by family members, to draw attention to the continuing detention of several thousand people in Assessment and Training Units (ATUs). It was effective. It featured human stories to highlight the issue, gained airtime on TV and radio for families, and skilfully used social media.

I am not privy to the reasons for the leaders’ sudden resignation but its Facebook page indicated that a factor was attacks on them by a leading member of People First for not being people with learning disabilities. Given that those people most affected, the people inside ATUs and similar institutions, can barely make a phone call without permission, it was in my view unrealistic, to say the least, to expect them to front a campaign. As one post put it, “This group was about supporting families in distress and providing a voice for those that don’t have one” (2).

This argument about who has the right to speak for people with learning disabilities goes back to the 1980s. Until well after People First started in London in 1984 the people who spoke up for people with learning disabilities were families, in organisations like Mencap, National Autistic Society and Contact a Family. But gradually, as People First gained confidence, the case for their being the spokespeople was made – and energetically supported by people, including me, who regarded themselves as progressive allies. I recall facilitating role plays in which family members were pitted against advocates – the family member always positioned as over-protective, standing in the way of the person’s independence. I was far from alone. My friend Sue Dumbleton, now mother of a daughter with learning disabilities, was then a care worker. As she says in her book, (3) “My colleagues and I had a suspicion that, if only they [families] would be less risk averse, protective and interfering, their adult children would be leading much more rounded, satisfying lives”.

The stage was set for the battle played out on Facebook in August, with one energetic self-advocate castigating the campaign because it was not led by people with learning disabilities.

Reactionary?

I would not have dared to write this even five years ago, for fear of being labelled a reactionary. But now I believe that it is time to point out that families, allied with self advocates, make the most effective campaigners. Self-advocacy alone has made only minor, often symbolic inroads, like the under-resourced National Forum for People with Learning Disabilities (2002-2017). The ‘system’ just does not listen to people with learning disabilities.

Divide and rule suits professionals and local authorities. They can pit families against their relatives, to position themselves as champions of the person’s autonomy. Don’t believe me? Then I commend to you the blogs of those family campaigners, most notably Mark Neary and Sara Ryan, in the forefront of battles to win a semblance of an ordinary life for their relatives and other people with learning disabilities. Here is Mark Neary describing how Deprivation of Liberty Safeguards (DoLs) are being used to monitor his role in relation to his son Steven. Commenting on his son’s first community DoLs which decided that he is being deprived of his liberty in his own home, he wrote: “The fact that he needs a support worker to accompany him when he takes some cake across the road to his uncle is now reframed from the support worker’s presence enabling Steven’s liberty to depriving him of it” (4).

Don’t believe Neary? Then here is what the House of Lords had to say in 2014 about the operation of the Mental Capacity Act 2005 in the case of P: “The general lack of awareness of the provisions of the Act has allowed prevailing professional practices to continue unchallenged, and allowed decision-making to be dominated by professionals, without the required input from families and carers about P’s wishes and feelings”(5).

To claim that people with learning disabilities can even begin to challenge the power of local authorities in matters such as MCA Capacity Assessments and DoLs is to enter a Kafkaesque world. I wrote about this in a previous column (6) – it’s a pernicious misuse of once enlightened theories to camouflage neglect and control.

It is time to put old battles behind us. Families, people with learning disabilities and their allies just have to work together to defend people’s human rights.

References

  1. https://www.sevendaysofaction.net/
  2. https://www.facebook.com/groups/7daysofaction/
  3. Dumbleton, S (2013) Goodies and baddies: equivocal thoughts about families using an autoethnographic approach to explore some tensions between service providers and families of people with learning disabilities, Ethics and Social Welfare, 7 (3) pp. 282 -292.
  4. Neary, M (2017) The Descent of DoLs https://markneary1dotcom1.wordpress.com/2017/05/10/the-descent-of-dols/
  5. House of Lords (2014) Mental Capacity Act 2005 Post Legislative Scrutiny https://publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/139.pdf
  6. Walmsley, J. (2017) When government takes up your best ideas be scared, be very scared… Community Living, 30 (4), p. 11

Jan Walmsley is PRofessor of Learning Disability at the Open University and author of numerous books and articles on learning disability.

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How organisations can restore human values in their systems

Community Living 

Community Living

— Winter 2018


All organisations need systems, but too often the systems become more important than the human beings they are meant to serve. Over the last 18 months, the learning disability provider Three Cs have been developing a methodology and running a live project, Project 17, which is about reducing waste caused by systems and releasing time for supporting people. To date, they have re-designed, streamlined and piloted a new Health Action and Emergency system, and consigned 23 forms, templates and tools to the bin. CEO Jo Clare explains the thinking behind Project 17, how it works and the ‘people’ benefits envisaged.

A number of unhelpful beliefs and myths in our sector have been bugging me for some time now: the belief that compliance is other than quality and gets in the way of the job, the prejudice that people work and paper work are incompatible, and the total myth that managers know better than staff how best to do the job.

The combined effect is a neglected excess of the wrong stuff that takes staff away from direct support. Project 17 aims to change that by restoring human value to systems, integrating compliance, and releasing time for support.

The 17 in the project title refers to Regulation 17 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, which is there to “make sure that providers have systems and processes that ensure that they are able to meet other requirements in … the Health and Social Care Act” (1). Amongst other things, the Care Quality Commission (CQC) say those systems and processes must “drive improvement in the quality and safety of the services provided” and “assess, monitor and mitigate any risks relating to the health, safety and welfare of people using services and others”.

Nowhere does CQC say “create a parallel universe for compliance which has nothing to do with the real quality of life and safety of the people you are supporting” or “make a mountain out of a molehill”.  Those, in my view, are provider-generated myths which, along with tick boxes and back covering, are unfairly ascribed to CQC, especially when we feel under pressure. Project 17 is based on a belief that compliance is a subset and servant of quality; if providers genuinely focus on quality and its bosom pal, safety, compliance will naturally follow.

One of the problems with providers coming to grips with this part of the job is that systems do not automatically speak human and system methodologies are unnecessarily mystifying. However, you don’t have to have been baptised in Total Quality Management or acquired a Black Belt in Six Sigma to understand the basics of efficiency and human value in systems. Project 17 aligns with Kaizen, the Japanese theory of ‘good change’, and the principle that staff who do the job are much better placed than consultants and senior managers to inform how the job can be done efficiently and effectively. After all, staff experience wasted human value directly; every hour spent on duplicated or poorly designed process wastes two human hours, one hour of their time and expertise and one hour of direct support to someone who needs it. As a result, and counter-intuitively given the nature of the subject, staff are also potentially highly motivated by system improvements which, as any change manager knows, is gold dust.

Underpinned

At the heart of Project 17 is a very simple matrix of human value and system value, underpinned by evaluation criteria, which is designed to guide the way we evaluate any part of any system, as well as help prioritise areas for attention. Things evaluated as currently high in both human and system value (the upper right box) are kept. Things evaluated as low in human value and low in system value are trashed (the lower left box), often with the epithet ‘what on earth were we thinking?’ (See below the Values Matrix).

Usually, it is the fear of losing something of small but important value which stops us from trashing otherwise low value elements of systems like poorly designed forms or templates or obsolete tools  – and so we live with them, and their devaluing effect, for years. Under Project 17, the idea is that before anything is terminally trashed, it is re-examined for gems which can be restored to other more valuing parts of the system. This makes trashing wasteful stuff both safe and exhilarating. Anything that has landed in upper right or lower left boxes on the matrix, we can conserve or despatch quickly, which is satisfying for those involved and instantly shrinks the task mountain.

The slower and harder work starts with systems and processes that end up in the upper left and lower right boxes. Those evaluated as high human value but low in system value are lined up for improvement, and those low in human value and high in system value are lined up for replacement. This last box has priority. It is important to replace and not simply improve things with low human value because human value has to be the starting point in human services, and is rarely served well by tweaks or reforms to existing systems.

Take our (newly named) Health Action and Emergency system as a prime example.   In good faith lots of alleged improvements had been made to elements of this previously sprawling system over many years, some generated by attention to compliance, some generated by commissioner-specific requirements, some generated by the tyranny of unbridled good ideas.   The result? A dog’s dinner of documents with the full human value to a person’s daily health too often obscured by volume, duplication, deviation and poor navigation.

Simple is the new complex

We spent six months in a highly involved and iterative process guided by principles of ‘leading innovation and change’ (2) followed by a six month pilot to turn a 19 document non-standardised system into a simple four document one. The end product has extinguished a high risk associated with replication of health data, ie. failing to update in all places. When we roll it out, it will also do away with other emergency documents, like grab and run sheets, and missing persons. Staff previously labelled ‘stuck and resistant to change’ have embraced it wholeheartedly. Staff describe the main document as friendly, which for a system document is a real coup. Champing at the bit, some managers have pre-empted the end of the pilot and rolled out the changes in their services without authorisation. Although it is early days, managers’ feedback is that it will fulfil its promise to reduce waste and release time for support.

In all my years involvement in innovation and change I cannot remember being involved in a change so ordinary yet unexpectedly and emphatically popular.

The next big amber project is our person-centred planning and decision-making systems.  Perhaps excited by our Project 17 gains, what started out as improvement is now a radical departure which, we hope, will make the person-centred approach a deeper part of Three Cs’ DNA.

Maybe you are a senior manager, have an ISO 9001 badge and/or a CEO who wears an ‘I love systems’ T-shirt and you are reading this thinking ,“That’s not us, we’re all sorted”.  What I would say is think again, have a detailed look, and talk to your support staff. As it is with remote controls, black socks, cables and junk so it is with the paraphernalia of systems and processes in social care: things hide, disappear and reappear, things muddle and multiply. Systems are never parked where you last left them.   In your absence, your cables have become knotted and your carefully designed mole hills have turned into mountains.

References

  1. Care Quality Commission – Regulation 17 Good Governance http://www.cqc.org.uk/guidance-providers/regulations-enforcement/regulation-17-good-governance
  2. George Boak, (2011) MA, ‘Leading innovation and Change’, Course materials, York St John University.

If you are interested in finding out more about Project 17: Human Value in Systems, please contact Jo Clare at jo.clare@threecs.co.uk

Organisations get together to discuss how Positive Behaviour Support could change people’s lives

Community Living 

Community Living

— Winter 2018


A festival to foster a wider awareness of the principles of Positive Behaviour Support (PBS) took place in idyllic surroundings in Surrey earlier this year.

National social care provider Dimensions collaborated with several service providers and organisations to hold the festival: CMG, PBS4, Choice Care Group, Avenues, Surrey Positive Behaviour Support Network and Surrey County Council.

Guests were enticed into a spacious environment adorned with reams of bunting, pompoms, flags, CDs, umbrellas and ribbons. In the late summer sunshine the environment met people’s sensory needs and was appreciated by all.

The festival looked at the challenges of implementing PBS nationally, locally, organisationally or as an individual. A lot of big questions start to emerge – How do we enable change? How do we design safe quality services? How do we improve quality of life? How do we work together? How do we embed change in practice?

PBS is a framework to help understand a person’s behaviour, and then use that knowledge to improve the person’s quality of life and decrease behaviours that challenge.

It has a solid evidence base. Over the last decade it has become increasingly recognised as the social care sector’s preferred approach to supporting adults and children with learning disabilities and autism.

The nature/nurture debate

A session on the nature of behaviours that challenge and Applied Behaviour Analysis was presented by Nick Barratt, Head of Behaviour Support at Dimensions.  He examined theories of the nature/nurture debate, our understandings of communication and the purpose and function of behaviour in enabling social interaction.

He used a simple example of how contexts of behaviour and communication link directly to outcomes.  For example, if someone feels unwell and is asked to do an activity such as washing up, an activity which is not meaningful or a priority for them, they are labelled ‘challenging’ if they react negatively.

Active support

A session led by Sarah Keane and Pippa Woodford  of the Avenues Trust used group discussion and role play to teach and develop awareness of the impact and benefits of active support and person centred approaches on the lives of individuals with varying disabilities, cognitive impairment and behaviours that challenge.

The unannounced role play left the audience in silence as staff undressed a member of the audience showing little respect, dignity or communication.

Their performance created an intense learning experience and awareness of how such treatment would trigger challenging behaviours – from abuse and withdrawal to physical aggression.

Incorporating standards

Louise Denne and Alison Branch from the PBS Academy spoke about the PBS Competence Framework and standards identified for service providers and teams. People of varying backgrounds, including professionals and providers, worked together looking at the standards and relating them to how their organisations were functioning and how they could incorporate them into the support of individuals with behaviours that challenge.

Triggers of challenging behaviour

The connection between sensory needs and behaviours seen to be challenging was discussed by Surrey and Borders Community Living Disability Team. They examined the wider influences and triggers to challenging behaviour and how it is often a response to a situation or sensation that the individual finds difficult to understand.

They linked the benefits of using PBS to identify the needs and triggers to a person’s behaviour, ensuring knowledge of the person is embedded in the plan. This enables the support, environment, activities, and communication to be managed to give pleasure and engender a state of calm and relaxation, whilst managing and minimising recognised triggers. It is essential that professionals and carers work with families to help the individual engage in meaningful activities.

Overuse of medication

Jonathan Beebee, Chief Enablement Officer and Nurse Consultant with PBS4, led an inclusive group discussion on the widespread use of medication to manage challenging behaviours, often with individuals with no diagnosed mental health issue.

He stressed the importance of monitoring and reviewing the use of medication ensuring it is essential, side effects are managed and the use regularly reviewed. His message was that medication is not the answer to managing behaviours that challenge and should be used cautiously as part of a robust PBS plan – an ethos echoed in NHS England’s STOMP (STopping Over-Medication of People with learning disabilities) campaign.

Creative curiosity

Finally, the importance of curiosity in the workplace was discussed by Lynsey Way, PBS Strategy Lead with the Care Management Group (CMG). The session encouraged creativity in attendees and enabled them to think for themselves.

The group identified obstacles that would inhibit curiosity, such as increasing regulations, staff set in their ways, fear of being criticised or failure.

Lynsey offered advice for managers on ways to encourage curiosity in their teams, develop a culture where staff felt able to make suggestions, question practices and ideas, and make mistakes.

The festival showed us that PBS is not an intervention sought only when a problem arises – instead it is a means to ensure individuals are supported in line with their needs, with staff understanding the importance of person-centred approaches, individual development and learning – in short, supporting people with learning disabilities and autism to have the best life possible.

Report by Sam Croniken

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How social workers can help people live the lives they want

Community Living 

Community Living

— Winter 2018


Julie Ridley reports from an inspiring conference about a series of Named Social Worker pilots in England funded by the Department of Health. An audience of self-advocates, families, social work practitioners and others heard about the positive contribution social work can make to the lives of people with learning disabilities when practice is based on knowing what works, and is developed in co-production with the people it supports.

 

Better Social Work Conference, Lancaster University Centre for Disability Research (CeDR)

September 2017

 

 

A Named Social Worker is defined as:

  • A dedicated social worker
  • The main point of contact for people and their families
  • A professional voice of challenge across the system

Lyn Romero, Chief Social Worker for Adults in England

 

Between October 2016 and March 2017 six local authorities – Calderdale, Camden, Liverpool, Nottingham, Sheffield, and Hertfordshire – ran the new Named Social Worker (NSW) pilots with people with learning disabilities. The pilots trialled different things including having experts by experience as paid team members. Chloe Grahame from The Innovation Unit, supporting the local authorities alongside the Social Care Institute for Excellence (SCIE), said that it had meant practitioners allowing time to really get to know people and really listen. In fact, some said it was ‘just good social work’! People with learning disabilities noticed the social worker was there for them and there was ‘less talk, more action’. A second six-month phase of NSW pilots is being funded.

Good social work practice with people with learning disabilities placed citizenship and social inclusion at its centre, the Chief Social Worker for Adults in England, Lyn Romero, said. Social workers need to support the social networks that can make a real difference in people’s lives and be a bridge to community resources and services.

The rise of managerialist and process-led social work was leading to poor outcomes for people with learning disabilities, said Rob Mitchell, Principal Social Worker for Adults in Bradford. Social workers often rely on a ‘box of tricks’, instead of working with people’s families and networks or listening closely to what the person is saying about the life they want. Referring to the Care Act 2014, he said that practitioners need to start from the assumption that the person is best placed to judge their own wellbeing and focus on their wishes, feelings, beliefs, and individual circumstances.

Advanced Practitioner Jackie Mahoney spoke about revisiting the profession’s roots in ethical and social justice approaches. Speaking about their involvement in Calderdale, and now the Bradford pilot, Nina Riddleston and Shvonne Nakoneczyni reflected that good social work isn’t about simply protecting people – people are experts in their own lives. Self-advocates want social workers they can trust, who treat them with respect, listen and do what they say they will do. It was important that social workers challenge the prevailing medical model and the barriers and assumptions that hold people back from living the life they want.

Bradford Talking Media showed a film of several people’s stories about their life hopes and ambitions. Having one person who knows them really well was top of many people’s lists. One man wanted to rent his own home and not have his parents cramping his style. He wanted to cook for himself, go out and come home when he wanted, have friends around, have a BBQ. He wanted his daughter to be able to stay at weekends. To achieve this, he needed recognition from a social worker that while his family can and do support him, they can also sometimes control things and want different things for him.

Reflecting on the Significant Incident inquiry they had led on following the untimely death of Judith Benn in 2014, David Blacklock and Louise Townson from People First Cumbria, quoted the shocking statistic that 37% of premature deaths amongst people with learning disabilities were avoidable, and concluded that people with learning disabilities with communication difficulties face a higher risk of having their health and social care needs overlooked.

Many questions were raised by delegates in the discussion they facilitated about the inquiry: why weren’t her family, who were involved in her life, contacted earlier?  Why wasn’t there a plan in place to deal with a known health condition? Such deaths are preventable with closer attention paid to the individual and their needs.

Key Discussion Points

  • Professionals need to work in true partnership with people with learning disabilities, breaking down ‘them and us’ barriers
  • Less person-centred

planning and more person-centred doing

  • Relationships are at the

centre of everything

  • Learning disability law similar to the Autism Act 2009 could mean better treatment under the law
  • We need to grow the people not the systems or the box of tricks.

Films of all the conference presentations are available at:

http://www.youtube.com/playlist?list=PLSCQCP7Aa-Q-a3goAqipk50yVRFjiCSAY

Webpage for the event http://wp.lancs.ac.uk/cedr/events/better-social-work-conference-2017/

(See also: Servants not masters: better social work for people with learning disabilities, page 26 of this issue).

 

Julie Ridley is Reader in Social Policy & Practice at UCLan and a Community Living adviser

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A reason to get up in the morning

Community Living 

Community Living

— Winter 2018


A work-like environment, in which people learn skills and engage in productive activities, brings important life benefits compared to the routines of ‘day activity’, argues Peter Green who runs Integrate’s social enterprises.

We all need something that occupies our time in a productive and stimulating manner – it is literally what gets us out of bed in the morning. In many cases the daytime offerings for people with learning disabilities can be poor, offering little variety and based on models which are well past their sell-by date.

Integrate in Preston, Lancashire has always endeavoured to buck this trend by providing meaningful daytime activities that are a little different: their social enterprises. From wood recycling, horticulture and a plant nursery, retail charity boutiques and product assembly packaging and fulfilment services as well as property maintenance, we aim to provide something a little different.

Since I arrived at the charity, nearly seven years ago, I have insisted that all of these pursuits must feel like a real work environment and the first step in achieving that is to make them operate in a business-like manner and be self-sufficient. This will guarantee their long-term viability and provide a focus to what we are setting out to accomplish.

Competent and professional

We help people develop distinct employment skills as well as general life skills. The benefits to well-being of work are well documented and we always see an increase in confidence, social skills and teamwork, as well as task-specific proficiency. We are businesses which means having to deal with other businesses and the general public in a competent and professional manner whilst offering exceptional value and a feel-good factor.

We have also found it helps if our teams can see the process from start to finish. For example, at our wood recycling service people get the chance to see everything, starting with the waste and surplus wood being collected from commercial construction sites. The next stage is the preparation and sorting of the wood by grade, through to point of sale, either ‘as is’ or converted into something the public want to buy, from the site. These three simple sounding stages offer a wealth of learning opportunities as well as reinforcing social and environmental responsibilities, whilst simultaneously breaking down the popular stereotype that disabled people who claim benefits are inherently lazy. This is not a word anyone has ever used to describe the people involved in this service.

We also link in with Runcorn College, not our most local but certainly the most willing, to offer occupational based qualifications. A three-year rolling programme offers access to work courses to NVQs and everything inbetween, again reinforcing parity with any other workforce.

Common goal

Our staff nights out are inclusive, the banter over lunch is real and a great sense of camaraderie exists at all the enterprises. In many cases the benefits of being part of a team all working together to achieve a common goal, and the kinship this fosters, is a more important outcome than the task itself.

Integrate’s social enterprises have also been recognised through industry award schemes, winning many accolades at both a national and regional level. The main regional awards are the annual Enterprise in Society awards and we have noticed a real change over the six years we have attended. The first year we were the only organisation to send a delegation that included those we support as well as paid staff and volunteers – we didn’t have to make a conscious choice about that as it is in our DNA. At this year’s awards it was nice to see that it is now the norm for this to be the case.

For myself all this is not without its challenges. I am a qualified nurse by profession and hold senior operational management responsibility for a large and diverse range of supported housing in addition to the social enterprises. I find myself having to know as much about DEFRA regulations, commercial vehicle deployment and chainsaw qualifications, and a whole host of obscure details in order to allow the businesses to operate. On the plus side, there is never a dull moment and the effect we have on an individual and community level is its own reward.

Integrate’s Social Enterprises

  • Pak – product assembly, packaging and fulfilment service
  • Integrate shop – charity retail service
  • Plants+ – horticultural business with plant nursery, traditional crafts and contract work
  • The Woodhouse – furniture renovation, handyman service, waste and surplus wood converted into furniture and other products.

All enterprises are sustained through trading income.

Peter Green is Project Director at Integrate (Preston & Chorley) Ltd

 

http://www.integratepreston.org.uk/

For further information about the enterprises see:

http://www.integratepreston.org.uk/integrate-community-enterprises.asp

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The fight for the right to love

Community Living 

Community Living

— Winter 2018


Simon Jarrett considers marriage, another frontier for people with learning disabilities to conquer in their fight to live the same lives as the rest of us. Getting married can be a legal minefield  or, as the ‘unicorn wedding’ of Polly Gibson and Joe Minogue showed, it can also be spectacularly joyful.

The right to marry – to publicly express our love for a partner, and, at a less romantic level, to acquire the legal rights that accompany the formal marriage process – is something we take for granted. Great strides have been made in recent years in the arena of single sex partnerships, although of course there is still a way to go.

However, for people with learning disabilities, the right to marry is still not a given.

Belinda Schwehr reports elsewhere in this issue (page 10-11) on just how complex issues of consent can be, not only before but even after marriage.

In 2014 The Guardian reported on the case of Sarah Thompson Drayton who, with her family, had to fight a year-long battle to marry her partner Daniel Drayton as local adult care services tried to stop them from marrying. Both Sarah and Daniel were classified as having severe learning disabilities. Local services in Poole, Dorset threatened that Daniel could face criminal charges if he went ahead, and also suggested that their vicar could find himself in legal trouble if he performed the ceremony.

The wedding eventually went ahead, with great success, after intervention by Mencap and the citing of a legal precedent from Sheffield of a couple with learning disabilities who married in 2004. The local authority, in typical sterile jargon, stated: “We consider every case on an individual basis. We work closely with clients, their families and professionals to ensure that any recommendations are fully informed, and consider the feelings of those involved.”

A right to fall in love

Who would have thought they were talking about a wedding? As Sarah’s mother commented in more recognisably human terms: “My daughter had a right to fall in love like anyone else.”

What a contrast all of this is with the joyful wedding of Polly Gibson and Joe Minogue, both of whom have Down’s syndrome, in 2016. Their spectacular wedding in Surrey featured a Unicorn throne – thus earning it the title ‘The Unicorn Wedding’ – and was a riot of colour and joyous support from families and friends.

Photographs from the wedding went viral, after first being featured on the wedding blog Rock n Roll Bride. Polly and Joe were featured on the BBC, The Sun, The Daily Mirror, Good Housekeeping, Italian Vogue, and in online publications across the world, including America, Japan, Australia and France. Millions shared in the joy of the occasion.

Wedding photographer Leela Bennett told Community Living that she was asked to cover this wedding because she had been the photographer at Polly’s sister’s wedding, where Polly had been a bridesmaid. The family had been impressed at the way she had responded to Polly in the same way as she had responded to all the other bridesmaids, rather than either singling her out or ignoring her. And it is perhaps this approach, the way in which she treated the wedding as a joyous union of two people rather than an unusual disability event, that gave her pictures such power and elicited such an extraordinary response.

Somewhere between the dead hand of local authorities using the Mental Capacity Act to try to prevent the marriage of two people who love each other, and joyous ‘unicorn weddings’ that go viral because they are such a surprise to the rest of the world, lies a middle ground – a middle ground where people with learning disabilities who are in love are able to marry, as quietly or as loudly as they wish, while the world looks on, happy for them but  unsurprised.

When that is achieved, we will know we have taken another step towards an inclusive society. It shouldn’t be so hard, should it?

How Matthew got his Life Back

Community Living 

Community Living

— Winter 2018


A catastrophic physical and mental deterioration when their son was detained in an Assessment and Treatment Unit left the parents of Matthew Garnett fighting to win his life back. Isabelle Garnett describes how eventually they won the battle, how it could have been avoided in the first place, and how happy Matthew is today.

Imagine yourself face down, restrained and being injected against your will with a substance that terrifies you. Imagine feeling trapped in your body, gradually falling from terror, into lethargy and confusion. How would you feel? How would you behave?

Now imagine being a 15-year-old boy with autism, mild learning difficulties, severe generalised anxiety, OCD, ADHD and receptive language difficulties, being held down by up to six adults. Imagine this happening to you at least every two weeks, without any prospect of an end or even understanding why.

I’m Isabelle, Matthew’s mum. Matthew is the 15-year-old boy whose life was as I have just described while he was detained in St Andrews Hospital in Northampton. Matthew’s sectioning and admission to an Assessment and Treatment Unit (ATU) could have been predicted and prevented. The catastrophic physical and mental deterioration he endured could have been avoided. The enormous financial cost to the NHS and to the tax payer could have been saved. The fact that Matthew’s sectioning could have been prevented isn’t only our opinion, it was a finding from the case review commissioned by former Care Minister Alistair Burt. The review also concluded that Matthew’s was not an isolated case.

Challenges

At the age of 14, the challenges Matthew faced because of his neurodisabiliy became more pronounced. He began ‘freezing’: holding rigid positions for several minutes, unable to ‘snap out of it’. Although Matthew always had echolalia (repeated speech) the nature of his self-talk appeared to change, his behaviour became increasingly challenging to himself and to others. The independent psychologist working with him in his residential school raised the possibility that he might be experiencing psychotic episodes and recommended a full psychiatric assessment. The psychiatrist in turn recommended an inpatient assessment. Nothing was available locally and we were told that the best place would be St Andrew’s Hospital.

However, he was not referred immediately – months ticked by without anything happening. Matthew’s behaviour deteriorated further and the psychiatrist said, “If things get too bad call 999”. We resisted for as long as we could until we reached crisis point and had no choice. We made the call and he was taken to Accident and Emergency where he was sectioned under the Mental Health Act. The psychiatrist told us this section would last 12 weeks, during which time Matthew would receive autism-specific assessment, treatment and care. Instead, Matthew endured the most traumatic years of his young life. From the age 14 to 16 he lived ‘under lock and key’ with catastrophic and devastating consequences. We will regret this decision for the rest of our lives.

We have learnt a great deal over the last two years. ATUs are the worst possible environment for people with autism and/or learning disabilities, for many reasons. The sensory overload alone makes a hospital environment unbearably painful.  Being ripped away from all that you know and all who love you is devastating for any child, but so much more so for someone with autism and learning disabilities who is terrified of any change in routine. For the estimated 70% of people with autism who suffer from anxiety, being contained can only exacerbate anxiety and fear. Worse still, the rise in anxiety leads to a downward spiral of negative behaviour and a vicious cycle of over-medication.

Beyond the damage caused by an inappropriate environment, Matthew also suffered because of the lack understanding about autism or learning disabilities, from both the medical professionals to the unqualified staff on the ward. For example, the medical professionals continually misinterpreted Matthew’s behaviours, calling him ‘callous’ and stating that he had a ‘conduct disorder’. We were told his ‘freezing’ was not ‘autistic catatonia’ as had been previously suspected, but was ‘demand-avoidance’.

Reactive

These misunderstandings seemed to justify containment, seclusion, routine prone-restraint and forcible injections with antipsychotic medication, medication that we now know he didn’t need, didn’t help him get better and could lead to complications for his health. The hospital attempted only to manage the resulting behaviours rather than understand and treat their cause. The lack of purpose behind this approach was captured in the fact that no discharge plan had ever been drafted. Matthew seemed to be locked into a one-size-fits-all reactive approach that made no reasonable adjustments for his neurodisability.

However horrendous this two-year experience has been, Matthew is one of the ‘lucky’ ones: we fought tooth and nail to get him out. The fight concluded in the Channel 4 Dispatches television documentary on Channel 4, Under Lock and Key.

But rather than focus on what doesn’t work, I’m happy to tell you there is a better way …

Within 24 hours of leaving the ATU, Matthew was out in the community. He is no longer contained, no longer restrained, no longer secluded and no longer forcibly injected with anti-psychotic medication. He is safe, happy, healthy and learning. His personal profile of strengths and difficulties are now understood. Autism-trained staff work positively and proactively to support Matthew to manage challenges he faces. They use communication friendly strategies (such as visual support and allowing extra processing time) to give him the best chance of success. His care staff have taken the time to find out and care about what makes Matthew tick. For example, a few weeks after Matthew had left the ATU the staff from his new home took him to the beach because they knew he loved the sea. He has a highly structured and predictable day that reduces his latent anxiety. His days are packed with meaningful activities, such as walking the therapy dogs, buying his own clothes, organising his house ’Film Night’, playing football and looking after horses. He has just started a voluntary job at the local football league club and has enrolled for the Duke of Edinburgh scheme. After a busy day, the low-arousal environment of his home is reassuringly personalised but also calming to his senses.

Matthew’s medical treatment is overseen, as an outpatient, by a specialist psychiatric team. His complex profile of co-morbidities have been diagnosed and the underlying cause treated. Matthew is no longer prescribed any anti-psychotic medication at all – only anti-anxiety oral medication. This level of care of course does not come cheap. However, it is cheaper than the eye-wateringly expensive ATU, and a far more effective use of funds, with real outcomes. Such costs could potentially have been avoided entirely if Matthew had not reached a crisis point in the first place.

Thanks to Matthew’s campaign gaining a great deal of public and media support, Social Care Minister Alistair Burt commissioned a case review into what had led to his crisis and consequent sectioning. All the professionals involved acknowledged that Matthew’s was not an isolated case. It concluded that ‘a crisis could have been predicted and potentially prevented.’ The report identified ‘missed opportunities’ that pointed to a complete failure in joint working and communication between Education, Social Care and Health Services. It identified ’lessons to be learnt’ within each service, urging that every professional and organisation involved in Matthew’s care should reflect on their role.

’Early intervention’ has long been an education buzz-word. Sadly, Alistair Burt’s Case Review identified – as for so many other children with autism – that Matthew’s journey throughout the education system was riddled with obstacles. The case review spoke of the SEN department’s and mainstream school’s ‘adversarial approach’, and that’s exactly how it felt to us as parents, as we won a series of tribunal battles to get Matthew assessed and have a statement issued, and battled to find a mainstream school prepared to take him. By the time Matthew was eight, no mainstream school could meet his needs. A lack of in-borough specialist autism provision meant that Matthew ended up in an out of borough residential placement.

Breakdowns

According to the case review mainstream school professionals and Lambeth SEN Department should have accepted health professionals’ assessments and read the documentation. They were criticised for not acknowledging, understanding and providing for Matthew’s needs. Our experience of the education system was of placement breakdowns, multiple exclusions, long delays and incredibly slow responses. The LEA agreed Matthew needed a specialist setting, but was unable to offer a suitable placement. Poor communication between education, health and social care meant that Matthew was not known to local services and did not receive a Care and Treatment Review until six months after he was sectioned.

Social Care did not acknowledge our requests for help until it was too late, despite a diagnosis that Matthew was ‘severely affected’ by his autism, with all the functional implications this carried. Matthew was not even registered with the Children with Disabilities Team until he reached crisis point. It is hard to know why this was. One professional suggested that we were turned away because of misconceptions that verbal children cannot be severely affected by their autism.  Another suggested a perception that middle class parents could afford to pay for their own respite – if true, an unacceptable and inaccurate value judgement. Social services failed in their duty to assess the individual needs of the child and to provide adequately for those needs.

Matthew is one of the (relatively) lucky ones – he had parents who could fight his corner. There are many who don’t. Please do not lose sight of them. As Christine Lenehan (1) made clear, these are your children too, we all need to keep up the fight to enable all young people to have their needs properly met early on and not to wait for a crisis to happen and all the trauma that goes with it.

Reference

  1. Christine Lenehan, (2017) These are our Children, DoH

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/585376/Lenehan_Review_Report.pdf

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Social Care Law – What is the law on capacity to have sex?

Belinda Schwehr 

Belinda Schwehr

— Winter 2018


In the first of two articles which explain the complex legal issuessurrounding sex, consent and capacity for people with learning disabilities, our legal correspondent Belinda Schwehr begins by analysing the case of KA.

The Court of Protection recently awarded £10,000 in damages to a man with Down’s syndrome who had been deprived of conjugal relations for over a year because of his alleged lack of capacity to consent to sex, despite being married for several years. How can this be reconciled with the leading 2016 case on consent to sex, called KA, in which a person with only a rudimentary understanding of sex was presumed capable of consenting?

Capacity to have sex does not turn on the identity or appropriateness of the person who is suggesting it.

If one has capacity to consent to sex itself, nobody else can say: ‘This partner is a good choice but this one isn’t’. One’s choice of partner is not a best interests decision for others! If a person lacks capacity to engage in sexual activity, then he or she must be protected from sex and others who might like to explore sexual activities with that person because sex involves touching, and touching without consent is a civil assault, as well as a sex offence in our criminal law.

The test is activity specific, so even if one regularly consents to ‘ordinary’ sex, that does not mean that one has the capacity to consent to an activity that one has no experience or understanding of: an obvious example would be the wrongness of assuming capacity to engage in anal sex on the part of a woman with learning disability only familiar with vaginal intercourse.

But context is everything: the circumstances in which the individual is being persuaded into the sex are all-important. So the fact that a person without disabilities appears to be interested in a person with a cognitive impairment does not mean that the person is inevitably a groomer or an abuser. However, the methods used by that person in their approach – if, for example, they have used outright lies, gifts or alcohol – would be highly cogent evidence. (In criminal law, some of these things are capable of giving rise to presumptions which the defendant must attempt to rebut).

The Court of Protection has looked at cases involving both gay and straight sex and has, for instance, made an order preventing an autistic woman with an IQ of 64 from having sexual intercourse on the grounds she did not fully understand that she could say no to such actions. She had a history of very early and deep degree of sexualisation.

However, case law in the Court of Protection often results in an interim order which says it would be in the person’s best interests to be taught (one to one) to know about these things, because it is agreed that he or she has potential to learn.

What is the criminal law?

Since the 2003 Sexual Offences Act there has been no presumption that sexual activity with a person with learning disabilities is always criminal – capacity is issue-specific and not ONLY related to a person’s IQ or diagnosis.

The essence of the main offence (sexual activity with a person with a mental disorder impeding choice in section 30 of the Act) is sexual touching which the person is unable to refuse due to a reason related to a mental disorder, and where the defendant knows, or could reasonably be expected to know, of the disorder and its likely effect on the inability to refuse.

In the criminal law, the 2003 Sexual Offences Act includes the words ‘for any other reason’ and the courts have interpreted these words as capable of encompassing a wide range of circumstances in which a mental disorder may rob a person of the ability to make an autonomous choice, despite having sufficient understanding of the information relevant to making it.  Examples are compulsions, delusions and phobias and, in the context of sex, low self-esteem due to depression, emotional dependency, disinhibition or sexualisation through early abuse.

How much capacity does one need to consent to sex?

In the leading case of KA, the gentleman was 29 and had a mild/moderate learning disability with an IQ of approximately 70. The council was concerned that his family might consider arranging a marriage for him as a means of securing his future care. KA’s parents and the local authority had co-operated in providing some specific education to KA around issues of sex and marriage.

The judge concluded that his ability to function outside the home was less than presented by the family but that KA had some valuable life skills, including basic literacy and relatively good verbal presentation, the ability to understand simple documents, care for his cat, and help out in a relative’s local restaurant.

A report had been prepared by a consultant psychologist with lengthy experience of capacity assessments who had seen KA and family members on several occasions. She had concluded that KA lacked capacity to have sexual relations and to marry. The judge, Parker J, found the expert’s assessment competent and thorough.

KA had a very rudimentary understanding and was able to weigh up that the consequences of sex are or may be pregnancy and ill-health, though he struggled to retain information about condom use or to understand that the ill-health may be serious. The expert also took the view that KA would find it a deprivation to be unable to have sex or to marry.

Parker J commented that, whilst not determinative of capacity, this did support an inference that KA understood the nature and character of both sex and marriage.

The ruling on the case of KA

The judge ultimately disagreed with the expert:

“The tests for capacity in respect of sexual relations and marriage are not high or complex. The degree of understanding of the ‘relevant information’ is not sophisticated and has been described as ‘rudimentary’, … ‘salient’ may be more apt. I must not set the test too high … [Adding] any further relevant information to the requirement for understanding … is likely to involve unnecessary paternalism and a derogation from personal autonomy”.

She emphasised: “It is particularly important to de-couple welfare from capacity under the heading of health and pregnancy.” Putting this another way, the ability to assess ‘risk’ fully is not the same as weighing information, and is not an explicit part of the legal test of capacity; risk assessment is a function of social services or the CCG in the discharge of statutory functions involving duties to meet needs.

“The statutory test is of foreseeable consequences, as in the pre-existing law. Again on the authorities, understanding need only be at a rudimentary level.”

She concluded that it was not necessary for KA to understand condom use in order to have capacity to have sexual relations: condom use went to welfare and not to capacity to consent to sex. So KA did have a rudimentary understanding that illness and pregnancy were foreseeable consequences of sexual relations sufficient to hold on to the presumption of capacity.

Capacity to have sex – the implications of the KA ruling

The core relevant information for a debate about capacity to have sex is this:

  1. i) The mechanics of the act and its sexual character (ie. that it is not a medical examination or procedure).
  2. ii) That sexual relations can lead to pregnancy.

iii) That there are health risks caused by sexual relations.

With regard to the relevance of consent of the person with impaired capacity, it goes to the very nature of the act. The question is: “Does the person have sufficient knowledge of … the sexual nature and character… of sexual intercourse, to have the capacity to choose whether or not to engage in it, the capacity to decide whether or not to give or withhold consent to it, at that time and, where relevant, to communicate their choice to their partner?” A great example of a lack of understanding of the nature of the act is an old case (R v Williams, 1923) in which a person was persuaded into sex on the basis it would be good for her singing voice!

The judge said:

 

  • “It is not ‘risk’ that needs to be considered, it is reasonably foreseeable consequences. A [person] needs to have an understanding, if not a sophisticated one, that pregnancy is a foreseeable consequence of heterosexual relations.

 

  • The consideration of contraception in general is far too detailed and complex to form part of the capacity test.

 

  • Pregnancy is a separate type of consequence from illness and must be considered separately. It does not constitute ill-health.

 

  • It should suffice if a person understands that sexual relations may lead to significant ill-health and that these risks can be reduced by precautions like a condom.

 

  • I do not agree that it is necessary for KA to understand condom use, which, leaving aside efficacy, goes to welfare and not capacity. It is not an examination in which one has to attain a certain mark in all modules.”

This then was the clear outcome from the case of KA in 2016, the leading case on sexual consent.  In the next issue, Belinda Schwehr will I examine the more recent case of a man with Down’s syndrome whose wife was effectively warned by a Safeguarding Team of legal action if she did not desist from having sex with him, on the grounds of inability to consent.  She will also examine the implications for care management, assessment and commissioning.

Parenting as a human right: is there justice for parents with learning disabilities

Community Living 

Community Living

— Winter 2018


One of the basic rights for most adult citizens is to be a parent, which is a common life experience for many people. However, this is still not the case for many people with learning disabilities. Iva Strnadová explores this complex issue.

While there are circumstances, such as a person’s high level of support needs, that can affect the ability of people with learning disabilities to have children, research shows they can be good parents, particularly if supports are in place. Unfortunately, many of these parents have their children removed from their care (1).

Do you think this only happens when a parent with learning disabilities neglects or abuses their child? Wrong! Research shows these parents have their child removed even if claims of neglect are unsubstantiated (2). Furthermore, child welfare workers, social workers and judges often assume that people with learning disabilities cannot be good parents, a presumption that can potentially influence their professional judgement.

In a recent Australian study my colleagues and I conducted about effective models of peer supports for parents with learning disabilities, narratives of such injustice were far too common (3). A mother whose first child was removed because of her postnatal depression (she was allowed to keep her second child as she was free of postnatal-depression at that stage); a mother in a domestic violence situation, which was resolved by authorities removing children from their mother’s care (leaving the mother in the same violent environment).

Would the narratives be the same if these mothers did not have the label of learning disabilities? I would greatly doubt that, a view supported by research showing that parents with learning disabilities have differential government assessment outcomes compared to other parents in similar circumstances (4).

Why is it that discrimination continues against parents based on their label of learning disabilities? The history of learning disabilities gives us some insight into this question. The institutionalisation of people with learning disabilities, their limited access to education, employment, and independent living, as well as a long history of sterilisation of many women, undoubtedly contributed to the misunderstanding in mainstream society that they cannot be good parents.

There are also systemic issues. Case-overload can prevent social workers and child welfare workers giving the time required to families. While in most western countries there are numerous services available to parents and their children (5), many are online, or too expensive for parents with learning disabilities (1).

Under-estimation

Last, but not the least, characteristics related to learning disabilities, such as a slower rate of acquiring new skills, contribute to the under-estimation of their natural parenting skills. In saying that, no person is born with all the knowledge and skills necessary to be a good parent. These need to be learnt. The difference is that people without learning disabilities are judged far less on the mistakes they make in the process of parenting, and their mistakes have less rar-reaching and detrimental results, than those made by people labelled as having learning disabilities. As a man, a friend with learning disabilities who brought up three children, said: “Having children is a good way to learn, because they teach you too, and you learn by mistakes. You make mistakes, you learn by it.”

What can be done to give parents with learning disabilities a better chance of bringing up their children? Like other parents, they need support structures. They need somebody to show them diverse parenting skills, such as preparing formula, or bathing a child. They can benefit from tailored supports, such as parenting programmes, and from access to suitable social networks. Providers of such support need to be aware that parents with learning disabilities are often poor, so expensive programs and resources will not work. And, importantly, supporters need to realise that everybody needs to learn, that everyone makes mistakes in the learning process, and that learning skills takes time.

References

(1) Gabrielle Hindmarsh, Gwynnyth Llewellyn, and Eric Emerson (2015), ‘Mothers with intellectual impairment and their 9-month-old infants’, Journal of Intellectual Disability Research 59: 541-550.

(2) David McConnell, and Gwynnyth Llewellyn (2000), ‘Disability and discrimination in statutory child protection proceedings’, Disability & Society 15(6): 883-895.

(3) Iva Strnadová, Susan Collings, and Julie Loblinzk (2017), Parents with intellectual disabilities: Effective models of peer support. Research grant by School of Education, University of New South Wales Sydney, Australia.

(4) Maurice Feldman, David McConnell, and Marjorie Aunos (2012), ‘Parental cognitive impairment, mental health, and child outcomes in a child protection population’ Journal of Mental Health Research in Intellectual Disabilities 5(1): 66-90.

(5) Berit Höglund (2012), ‘Pregnancy, childbirth and midwifery care among women with ID in Sweden: Epidemiological and descriptive studies’, Acta Universitatis Upsaliensis.

Readers interested in finding out more about this issue can go to: ‘The experiences of women with learning disabilities on contraception choice’  by Jan Walmsley, Liz Tilley et al  http://journals.rcni.com/doi/abs/10.7748/phc.2016.e1139

Iva Strnadová is an Associate Professor of Special Education at the University of New South Wales Sydney, School of Education, Australia.

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Benefits – Why it is worthwhile appealing DWP’s decisions

Charlie Callanan 

Charlie Callanan

— Winter 2018

A high number of decisions made by the Department for Work and Pensions (DWP) are overturned in favour of the claimant by social security appeal tribunals. The numbers are especially high in appeals involving disability benefits, including Personal Independence Payment (PIP), and ‘limited capability for work’ in Employment and Support Allowance (ESA). Charlie Callanan explains why following what can appear to be a daunting process is worthwhile.

The most recent appeal statistics show that in 68% of Personal Independence Payment (PIP) cases and 65% of Employment and Support Allowance (ESA) cases, decisions by the Department of Work & Pensions (DWP) were changed in the claimant’s favour. These benefits together form the vast majority of the total number of cases heard by social security appeal tribunals.

The statistics about outcomes in disability benefit and ESA appeals repeatedly show that the claimant is much more likely to be successful if they are able to attend their appeal hearing and give evidence in person, rather than where the appeal is decided on the written evidence only.

However, the idea of appearing in front of an appeal tribunal can feel quite daunting to many of our clients. So it is helpful to advise anyone planning on attending one on exactly what and who is involved in a disability or ESA appeal hearing.

Informal

The hearings are supposed to be as informal as possible. They usually take place in offices or in rooms in court buildings, with all parties sitting round a table.

The tribunal members are independent of the DWP. A legally qualified member – the judge – and a doctor hear ESA appeals. Disability benefit appeals have a ‘disability member’ in addition. The only other person who may normally take part is a presenting officer from DWP.  Their role is to act as a ‘friend of the court’ and assist the tribunal to come to the correct decision, not to defend the original decision made by DWP. More presenting officers have been recruited recently to participate in hearings but there are still not enough to attend every hearing.

The claimant may be accompanied to the hearing. If they attend with a partner, friend or carer that person will not usually contribute to proceedings unless invited by the judge. But they may be asked to help out a claimant who has trouble answering the questions.

A more formal representative can also accompany the claimant. They may, for example, be a paid or voluntary worker for Citizens Advice or a charity, or may work for a law centre or as a solicitor. They may prepare a written submission to explain the claimant’s case for the tribunal to read in advance. During the hearing they can ask the claimant questions to draw out relevant evidence, and may make oral submissions on why they believe their client’s appeal should succeed.

Before the hearing starts the tribunal members should have read all of the written information and evidence in the claimant’s appeal file. This includes the DWP’s explanation of its decision, forms completed by the claimant, reports about any face-to-face medical assessment, and letters from doctors.

After introductions have been made the judge may ask the claimant (called the appellant) or their representative for clarification on what specific outcome is being sought. Then the main part of the hearing takes place. This usually involves the doctor and the disability member asking the claimant lots of questions about their circumstances at the date that the original decision was made. These are usually questions about their disabilities and any other health conditions, followed by questions relating to the qualifying conditions for the benefit. So, for example in PIP appeals, the claimant is asked about how they manage their daily living needs, such as preparing meals, washing and communication.  The judge will take notes and may interject occasionally and ask for clarification on a point. If there is a presenting officer they may ask some questions of the claimant, but sometimes even when they attend they do not ask any.

Evidence

Once all parties, including the claimant’s representative, are satisfied that they have asked all relevant questions, and given any evidence or submission that they wish to, all parties except the tribunal members leave the room. They then sit alone and discuss the evidence before coming to a decision together. The tribunal’s role is to look at all the evidence and make a decision based on ‘the balance of probabilities’. The claimant is then either called back into the room to be given the decision, with written confirmation, or may be told the decision will be posted to them within a few days.

When our clients get a wrong initial decision on their ESA or disability benefit it is often crucial to their material and mental well-being to pursue challenges to get the correct outcome. And, if the statistics don’t lie, then it is more likely than not that it’s worth their while pursuing their claim as far as appearing before an appeal tribunal.

For further information on appeal applications and appeal hearings:

http://formfinder.hmctsformfinder.justice.gov.uk/sscs1a-eng.pdf

Charlie Callanan is a welfare rights adviser with over 16 years’ experience in the statutory and voluntary sectors.

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Have people with learning disabilities become financial assets?

Community Living 

Community Living

— Winter 2018


Put together a rise in the privately-owned residential market in learning disabilities, an exodus of small-scale private providers and the rise of debt-laden mega-providers whose first loyalty is to their investors, and you have a problem. Ivan Farmer* explains a complex finance web, and the threat it poses to the independence of people with learning disabilities.

We talk a lot about taking an ‘asset-based’ approach to supporting people with disabilities – it is part of everyday language about using strength and potential across the social care system. However, there is another group which views people with learning disabilities as a different type of asset – a financial asset to be borrowed against in increasingly complex financial transactions, funded by private equity, investment banks and pension funds from across the globe.

Amongst all the headlines in the specialist and mainstream media about the financial crisis in care, one sector is largely keeping its head down – the privately owned residential care sector for people with learning disabilities. Some of the pressures that impact on the wider care market – such as the national minimum wage and the current policy mess that is sleep-in rates – are undoubtedly causing providers some operational and financial concerns. They also have problems recruiting that are similar to those in the older person sector. However, the narrative of a private provider sector in financial crisis is not borne out in learning disabilities.

Higher fee levels

One of the most obvious reasons for this is relatively simple – fee levels are significantly higher in learning disabilities residential care. Average fee levels are at least £500 per week more than in older persons care – and many more are considerably higher still – reflecting the complexity of need of people with learning disabilities as well as the need to offer more activities and skills acquisition than other sectors. Services have tended to be smaller, giving less opportunity for economies of scale for providers and a more person-centred, homely environment. However, these fee levels, as well as the significantly longer stays of people with learning disabilities in residential care, the fact that the care homes are a physical asset that can be borrowed against, and the entirely state-funded market, have created an environment that is attractive for investors.

In recent years there has been a huge rationalisation in the privately-owned learning disability residential market. The growth of the large national and regional private providers has been quite remarkable. The model is pretty consistent: look for external financing to fund acquisitions from the old ‘mom and pop’ providers looking to exit the market, and sometimes open some new homes yourself as well.

Funded on borrowing

All this is funded on borrowing so as a provider there is a dual focus. First, you must maintain their EBITDA (Earnings Before Interest Tax Depreciation and Amortisation), which is an important measure for your investors, particularly if there are plans to sell the business. Second, you must extract as much cash as possible from the fees to pay down some of the debt you used to acquire the business, and potentially pay yourselves some dividends or a ‘management fee’. Complex webs of company ownership structures are created, money moves around a myriad of related companies, becoming ever harder to track. Some of it goes offshore into further financial opaqueness, all designed to avoid paying corporation tax and to financially engineer a business that can generate EBITDA and cash but never make much of an actual profit.

Once the business is established, the next phase is to ‘flip’ the company. The private equity operator in particular does not think in 15 to 20 year cycles like the traditional care home operator. The objective is not to build up a nest egg to retire on once the mortgages have been paid off on the care home. They plan in three to five year cycles: borrow a load of money, buy a business, take as much cash as possible out while growing the business and then sell it to the next investor. And repeat. Some might ask, ‘so what’?

Some of the largest learning disability care home brand names are on their third or fourth owners in a relatively short space of time. They have grown to significant size through acquisition and are increasingly dominant – so dominant in fact that collectively they are responsible for many thousands of learning disability beds. So why should we care, they are doing OK aren’t they? The services are mostly satisfactory according to CQC?

Here are three reasons why we should care.

  1. The negative impact of all of this debt on care and support

As a provider’s debt burden increases, the amount of money available to spend on actual support decreases, particularly in these financially constrained times, when annual increases from councils have been hard to come by. It used to be a commonly held view that 70% of care home fees went on staff – some of the large private providers have pushed this narrative themselves – but their company accounts paint a different story. It is not unusual to see providers spending only 55% of their income on staffing (income, let us remember, that comes entirely from local government and the NHS). Private providers are much better than the state or the third sector at managing costs – so the growth pressure is often on financing their debts, debts that have arisen through business decisions their investors have made to extract maximum value in a short period of time. The upshot of this is that there is less money to employ staff, and those staff you do employ are paid low wages. This impacts on the quality of care provided.

  1. The perverse incentives that come from needing an asset to borrow against

Whether a provider does a sale and leaseback on their buildings or is simply owning its buildings and borrowing against them, having a physical asset helps the valuation of the business. Many providers have each bed valued on commercial terms and then use this to inform the valuations of their business. Additionally, some borrowing can be predicated on occupancy levels. All of this leads to a perverse incentive of investing in models of support that do not lead to more independent living, with the risks that resultant ‘voids’ will cause problems with their financial backers.

  1. Misleading claims of ‘specialism’

There are of course some truly specialist private providers who support complex people extremely well and are paid fee levels accordingly – as they should be. However, for an investor, being a specialist provider is attractive as there is a premium that can be charged on the fees. How many times have you looked up a residential home because it has ‘specialist’ in its Google search terms and then found it is specialist in everything going? This might look good to an investor but can you really be a specialist in every type of learning disability support within the same residential home – or even the same organisation – effectively?

What does the future look like?

Aside from the obvious risk of a Southern Cross scandal happening in the learning disability sector, what does the future look like? Should we just accept the status quo – ever larger providers borrowing more and more money, having more power in the market, the increasing commodification of people with learning disabilities? Or should we be agitating for more change. There continues to be huge pressure on the Assessment & Treatment (ATU) sector for change, as the recent excellent #7daysofaction campaign demonstrated. It argued that people with learning disabilities in ATUs were being treated as financial assets and the provider had no incentive to move people on.

There is a risk that we just move that problem down from ATUs to residential care and we will all be discussing this again in five years time. There is a large amount of development activity by some providers to create step-down provision from ATUs that has the appearance of supported living but is, in fact, residential care, with all the lack of security and opportunity that brings.

Current reality

We could argue that for many people with learning disabilities that is their current reality. They are a financial asset being traded by private capital across the globe, creating a sector with no incentive to change and do things differently. What interest do private equity, pension funds and investment banks have in people with learning disabilities? Their first and main responsibility is to secure a return on their investment and that surely creates a conflict with providing good quality care with a long-term view of personal development.

Why not be more radical? Let’s see:

  • councils borrowing money (money is very cheap for local government) and build community-based settings for people with learning disabilities to have a proper tenancy in;
  • commissioning of more supported living and proactive work with the many providers who want to work with us to provide more community-based support – to be clear, this can include private providers;
  • a decisive move away from people with learning disabilities being seen as an asset that can be traded every three to five years by faceless money people;
  • freeing up of money from debt repayment in the system to pay support workers a decent wage and attract more people to work in this fantastic sector.

Let’s finally put choice and control at the heart of learning disability care.

*Ivan Farmer is a pseudonym

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Moments in History a Passionate Advocate

Community Living 

Community Living

— Winter 2018


A passionate advocate Paul Williams describes the life and career of Rex Brinkworth, founder of the Down’s Syndrome Association. His historic role as a courageous and pioneering advocate of learning disability rights is at risk of being forgotten.

Rex Brinkworth was born in 1929. Living in the Gloucestershire village where he spent his childhood were two adults with Down’s syndrome and Rex became friends with them. He trained as a teacher and developed a special interest in children with learning difficulties, becoming head of the remedial department of a secondary school in Birmingham. The 1944 Education Act allowed children with learning difficulties, including most children with Down’s syndrome, to be excluded from school under the label ‘unsuitable for education in school’. Instead, provision was made in ‘Training Centres’ run by local health, rather than education, authorities. These centres were only incorporated into mainstream education when the 1944 Act was repealed in 1971.

Long before that time Rex had been a passionate advocate for inclusion of children with learning difficulties in schools. He believed that environmental factors such as stimulation and diet could greatly help such children, and he extended this belief with some ideas for work with babies with Down’s syndrome very early in their life. Rex was fluent in French and had married a French woman, Jackie. In 1959 he read about Lejeune’s work (see CL vol. 30 No 2, 2016) and contacted him. They began a collaboration to research ways of supporting children with Down’s syndrome through early stimulation and diet.

By great coincidence, Rex and Jackie’s fourth child, Françoise, was born in 1965 with Down’s syndrome. This gave a strong impetus to Rex’s work. He enrolled for a Diploma in Child Psychology and as part of that he carried out research on methods of stimulating babies with Down’s syndrome, which he also tried out — with substantial success — with Françoise. Word spread about his work and he began to be contacted by other families for advice. By 1969 he had supplied 130 families with duplicated sheets of advice and instructions for exercises, and he decided to put these together in book form. The 70-page booklet was published by Mencap and was called ‘Improving Mongol Babies and Introducing them to School’.

‘Mongolism’

Down’s syndrome was first systematically described by Dr John Langdon Down in 1867. Theories were prevalent at the time that human beings could be divided into racial types. As what he called ‘the great divisions of the human family’, Langdon Down listed Caucasian (European), Ethiopian (African), Malayan (from the Southern hemisphere), Aztec (American) and Mongolian (Asian). He speculated (wrongly) that the characteristics of the people he described represented the ‘regressive’ expression of the Mongolian type in some babies, even though they were born to Caucasian parents.  The characteristics described were later named ‘Down’s syndrome’ after Langdon Down, but a common term in use well into the twentieth century was ‘mongolism’, a word that would of course be totally, and rightly, rejected today.

Rex used the term ‘mongol’ because it was current at the time, but he hated the word and campaigned hard for it to be dropped. His book ran to several later editions and was renamed ‘Improving Babies with Down’s Syndrome’. In 1970 he founded a voluntary organisation in Birmingham to support and advise families, which he called ‘The Down’s Babies Association’. This developed into the Down’s Syndrome Association which now has its headquarters at Langdon Down’s house, Normansfield in Teddington, London. Rex was Education Adviser to the Association until 1988 and was awarded an MBE for his work. He died in 1998.

Something extra

Rex  was vehemently opposed to pre-natal screening and abortion. He described people with Down’s syndrome as ‘having something extra’ because of their additional chromosome, rather than being so deficient that their existence needs to be prevented. A television programme about his work in 1976 was titled ‘The Child with Something Extra’. He gave freely of his time and advice to families, distributing his sheets of instruction to hundreds of parents at his own expense.

He wrote that his work aimed ‘to offer a measure of justice to a much misused and misunderstood group of human beings who differ from ourselves not so much in kind as in development’. His stance against screening and abortion made him unpopular and his work is little remembered today. Even the Down’s Syndrome Association, which he founded, has nothing on its website to acknowledge him. However, he was a powerful and courageous advocate for people with Down’s syndrome who deserve gratitude and celebration for their lives.

Further reading

Rex Brinkworth and Joseph Collins (1973) Improving Babies with Down’s Syndrome. 5th revised edition. London: Mencap.

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