LDE Webinar: Transgender support for adults with learning disabilities and/or autism

10.00 – 11.00, 11th May 2018

People with learning disabilities and/or autism, may be considering a transition from the gender they grew up with, to a gender role they feel more comfortable with. Indeed, the person may have made this transition. As it is the case with the general population, people with learning disabilities may be exposed to discrimination, abuse, ignorance and also faced with practical and emotional stresses linked with everyday life in their new gender identity.

The Webinar will focus on how people with learning disabilities and/or autism are supported to navigate these practical and emotional difficulties and signpost to networks that may benefit and support people further. The Webinar will also consider the accessibility of information and support to this group.

 

 

Michael Fullerton, Director of Quality and Clinical Care in CMG will present this Webinar.

Michael is a registered learning disability nurse and works individually with a number of people with learning disabilities and autism to support their sexual and gender identity. Michael, as a learning disability nurse, has a unique position of working in a clinical role within a learning disability provider organisation. As CMG support over 900 people, Michael is able to offer support to a significant number of people, including in relation to relationships and sexuality.

Michael has witnessed an increasing number of people who are trans men or trans women, or are confused, haven’t ‘come out’ and the psychological impact of the stress and distress for people can be immense. Michael is therefore keen to ensure the support people receive from CMG and other networks is as responsive as possible to assist people to feel comfortable with their gender identity and choices and just be able to get on with their lives.

Michael has received training via the Family Planning Association to educate people with learning disabilities in relation to sexuality and has been gaining knowledge and inspiration about supporting transgender from the Clare Project in Brighton, a mainstream Transgender Support group.

LDE Webinar: Advance – Opening the can

10.00 – 11.00, 27th April 2018

Rachel Fox (Customer Engagement Manager, Advance Housing and Support) and Claire Bates (founder of Supported Loving, Choice Support) discuss the importance of good support in making and maintaining relationships, focussing on relationships for people with learning disabilities. Claire will give an overview of the research behind the Supported Loving campaign and its work so far, while Rachel provides the perspective of an organisation passionate about putting it into practice – the successes, the challenges and overcoming barriers.

 

 

Rachel is the Customer Engagement Manager at Advance, providing housing, support and employment services to people with disabilities and mental health conditions. As a member of the Supported Loving Network, Advance supports the rights of people with learning disabilities to have loving relationships (and sex if they choose). Prior to working at Advance Rachel worked in a range of mental health settings and has a degree in Psychology.

Claire is the founder of Supported Loving, a national network and campaign which focuses on the rights of people with learning disabilities to have loving relationships (and sex if they choose). Claire works for a Choice Support for over 15 years, they are a charity that supports people with learning disabilities, both in the Quality team and also as a manager and support worker. Claire also works as a researcher at the University of Kent’s Tizard Centre conducting research on topics relating to sexuality and relationships for people with learning disabilities.

 

Gary on sleep-ins

Sleep-ins have been controversial for some time. Sleep-ins are when staff stay over during the night in case someone needs support.  Staff are allowed to go to bed during the night – they only get up if they are needed.

Sleep-in staff usually sleep-in at residential homes, group homes, and hostels.  They are also employed to support people with personal budgets. For many years, it was thought that because the staff were sleeping, it was okay to pay them below the minimum wage.  There has been a big argument about this, and it has been decided in law that because staff are not free to come and go as they please, and there are restrictions on what they can do, they are working and should be paid the minimum wage.

This minimum wage needs to be back-paid for up to 6 years.

The charities and other providers who have been paying below the living wage have to fork out for this.

So, what the hell are we doing?  We have providers and the Government fighting each other, recriminations flying, and a paper-based civil war raging whilst people with learning disabilities and/or autism are stuck in the cross-fire.  Those who have least, are likely to lose most, and people with learning disabilities and autism may see their worlds shrink as day-time support gives way to nightly costs.

I have no answer to this problem, but I urgently call on those who have the power to resolve this situation to act quickly and decisively so that the sector is stabilised.

We are very concerned that the voice of people with learning disabilities and autism will be lost in providers’ struggle for survival.

Many families are at breaking point, and whilst the benefits of personal budgets are many, the pressures of being an employer are considerable.  The uncertainty over sleep-ins and personal budgets are a source of considerable stress and place an unfair burden on people who simply want the best for their loved one.

How do we sort out this mess? LDE would like to ask each of their individual members to write a letter to their MP and say why sleep-ins are important.  No one should have to sacrifice support that enables good days, to remain safe at night.

We need to make MPs understand that quality support makes the difference between living and existing.  We all only have one life, and mere existence is not sufficient for anyone!

These walls are funny. First you hate ’em, then you get used to ’em. “Nuff time passes, you get so you depend on ’em. That’s institutionalized. “Red” The Shawshank Redemption

An opinion about institutionalisation from Tracy Hammond

 

At LDE we have been discussing institutionalisation and what it really means.

Internet searches throw up a heady mix of everything from lobotomies to dormitories, with religion and politics mixed in for good measure.  It’s little wonder it’s such an emotive subject.

However, commentators agree that a loss of freedom and personal responsibility, lead to symptoms of institutionalisation and an inability to cope with everyday life

We know the history of institutions and it is easy to conjure images of sterile and secluded settings, surrounded by a patchwork of fields. But what does it mean in the 21st century and in a context where independence and personalisation are rightly recognised to be so important?

For me isolation is a huge indicator of institutionalisation.  However, people can live on a remote island or in a small community without being institutionalised, and so this can’t be the whole story.  It is also the loss of control, the feeling that one must fit in with a regime, with rules or way of being, and as ‘Red’ says, it is the creation of dependency.

A while ago, there was a sketch called Friendly Phrases from the comedy duo Mitchell & Webb.  The thrust was that they were creating really terrible straplines.  Terrible because they were so obvious.  In the sketch, there was a sign on the wall.  This read – Wall: separating this room from that.  In my mind over the years, this had morphed to ‘Wall: keeping the outside out’, but surely both would be pertinent.  The issue perhaps though isn’t the wall per se, it is about choice and control.  A wall can be a safeguard, a provider of warmth and home, or it can be a prison, a method of control, and an imposed separation or boundary.

Although it now appears to have moved on to chocolate and Nietzsche, in a previous iteration, if one asked Siri the meaning of life, it often replied that it is not qualified to answer that question.  And that is how I feel about defining institutionalization from afar.  Control and coercion can happen in apparently ideal locations, and great workers can support freedom and independence in less than ideal circumstances.

In his work entitled The Keys to Citizenship, Simon Duffey discusses true citizenship, he says, ‘Citizenship is a funny word – and it can have several meanings – but it is a useful word, because it can be used to describe how human beings can live together – with justice and mutual respect. Citizenship means:

Being respected – being able to hold your head up high and getting respect from those around you

Being equal – citizens all have the same fundamental worth or dignity, they don’t believe that just because someone has more money, power or a better-paid job that this makes them a better person

Being different – citizens are not identical, they have many different gifts which they bring together to build a better world.’

At LDE it is massively important to us that we get things right, and we need to generate discussion about what right looks like in an imperfect world.

Following Carol Povey’s response to the Mendip House safeguarding report which we published in February, we were contacted by a father who believes passionately that we, as a sector, need to learn from the nursing and medical professions.  LDE is certainly up for some inclusive and well facilitated conversation about how we come together to ensure people remain free from abuse whilst enjoying the life they choose and we hope to get something going very soon.

Watch this space for more details…

Public Affairs action on sleep-ins

It’s easy for the Government to do nothing – to continue to ignore vulnerable people we support and our valued workforce.

In April, the new financial year starts and providers face less than twelve months to pay crippling and unfair retrospective liabilities for ‘sleep-ins’. Government has to take a decision by this summer – the second quarter of the financial year. The only way to avoid this crisis moving towards catastrophe is to work together to ramp up pressure on MPs and get more of them to take up our cause.

Much of our Parliamentary support came through your work taking this up with local MPs – they’re concerned about the effect the sleep-in crisis can have in their own constituency, and we’ve seen local MPs turn up to our briefings to ask what can be done.

It will take all of us moving together and continuing this work to win this campaign – and we have limited time to act.

Right now, we need you to do three things:

1. Edit this letter and send it to all MPs where you provide services in their constituency. This is the most important thing you can do right now. We have drafted the email for you, and finding email contact details and changing the letter should take less than five minutes for each constituency – and make a big impact.

2. Respond to the 3 questions at the end of this email.

3. Let us know if you have any stories about how the sleep-in crisis is affecting you, whether as providers, from families, donors or people who rely on services. Even if you would prefer they be anonymous, we are collecting case studies to illustrate.

We may need a single day of action in mid-May as a pre-planned campaign tool to push the Government to act on sleep-ins before it’s too late.

Options could include a mass lobby of Parliament, where a number of people come to Westminster on the same day to meet with their Parliamentarians, a regional/local lobby where providers assist visits to their Parliamentarians in their local offices and a virtual lobby where the networks of all providers (including families, staff and others) are engaged to call and email their Parliamentarians on a specific day with a message about this issue. We believe that the most effective campaign activity may be a strategic combination of all three of the options mentioned.

To plan this, we need to get an idea of what everyone might be able to do. Can you please respond to the three questions below asap?

Your response will allow us to know what we are working with to strategically plan the most effective campaign action. And we need to start planning now.

From this public affairs update, you’ll know that we’re working hard with Parliamentarians to get the Government to take action now. We’ve also asked you to get in touch with your MPs to help the campaign. The sleep-ins crisis isn’t new. Despite our recent campaign wins – getting Labour front bench support and having the Prime Minister questioned directly on sleep-ins at PMQs amongst many others – getting the Government to act won’t be easy.

They think that they are getting away with their shambolic handling of ‘sleep-ins’ it because the media is focused on Brexit. The Government will only respond if we make it harder for them to do nothing.

Planning a joint campaign action may be the key to ramping up this pressure on Parliamentarians enough for us to win this fight.

Help us do that – please send letters to your MPs now and then respond to the three questions below asap.

Thank you

Continue reading “Public Affairs action on sleep-ins”

LDE Webinar: “Learn With Us – Working in Partnership with Family Carers” – a film and training resource.

10.00 – 11.00, 13th April 2018

A genuine and rewarding partnership between family carers and services requires good support and training for staff. “Learn With Us” is a film and training workshop designed to respond to that learning need. This beautifully produced 45-minute documentary gives remarkable and unusual insights into the experiences of family carers, and of the staff who support their relatives with learning disabilities. Interviews with family carers, support workers and their managers produce a stimulating and thought provoking narrative. Two role plays by professional actors highlight areas of conflict and difficulty. Our unique training resource provides all the materials required to facilitate a 3-hour workshop, using the film to generate discussion and with exercises and handouts to promote learning and effective partnership.

Presented by: Clare Palmer and Catherine Wordsworth

Clare is an Islington family carer, mother of Elinor who has learning disabilities. She has represented family carers for some years on Islington’s Learning Disabilities Partnership Board. She also has a social services training background, and it was that combination of experience which originally led her to propose the making of “Learn With Us” to Islington’s Learning and Development Team, which financed the film. It has been immensely exciting for her to work with other family carers and Centre 404 to produce this innovative training for support workers.

 

Catherine is the Family Involvement Officer for Centre 404, a North London based learning disabilities charity. She has been involved in the Learn With Us project since 2015, when she came on board as part of the team designing the training resource pack. She believes strongly that understanding the triangle of relationships is key to working in true partnership with families. Delivering the training with its inspiring group of co-trainers, comprising family carers and professionals, is one of the most rewarding parts of her job.

 

An update from Carol Povey at the National Autistic Society regarding Mendip House

Last week, we released a statement regarding the abuse at Mendip House. At the time, we said we had approached NAS for an update on what they had done to learn from events and make sure they could not happen again. Below is Carol Povey’s response in full.

 

Dear Tracy,

Many thanks for your e mail following the Safeguarding Adults review into the horrific events which happened in Mendip House in 2016.

We had correspondence in August 16, and in November 2016, we closed Mendip House. I think, when we spoke, we had taken that decision, and were in the process of working with families and the people who were living there, to find alternative accommodation and support which would meet their needs.

We want to reiterate how appalled we were by the cruel behaviour towards the people we supported at Mendip House by some staff there. And we apologise without reservation for the failures at Mendip House and for not spotting them and putting them right as quickly as we should have. We have since done all we can to ensure this cannot happen again.

The timeline can be difficult to follow, because the Safeguarding Adults Report into Mendip House draws on a range of minutes and reports from other enquiries by Somerset County Council, the Care Quality Commission and the NAS, rather than being based on a single, stand-alone investigation, but the following gives an account of what happened and when:

• In May 2016, a member of staff alerted us and the CQC to abusive behaviour by some members of staff towards the people we supported at Mendip House. These are the extremely distressing accounts of abuse detailed in the SAR report.
• In May 2016, we immediately made sure everyone living at Mendip House was safe and properly supported by staff who knew them and their needs well. The staff responsible for the abuse were immediately suspended and disciplinary investigation started, which resulted in their dismissal.
• In May 2016, we undertook a full review of all previous safeguarding alerts and supplied this to the CQC. The CQC inspected Mendip House. Somerset County Council, as the agency responsible for safeguarding in the area, started a safeguarding inquiry process, including placing a team at Somerset Court for several months.
• In June 2016, we calculated then repaid the money taken from the people who lived at Mendip House by staff who had been getting them to pay for their meals.
• In July 2016, we took the difficult decision to close Mendip House because of the depth of the problems we had discovered there.
• In August 2016, the CQC published their report, which found the service inadequate in all areas. We apologised publicly and acknowledged that we’d ‘failed badly’ at Mendip House
• In early November 2016, Mendip House closed, after the last of the people who had been living there moved to their new home.
• In March 2017 the Somerset Adult Safeguarding Board started the Safeguarding Adults Review (SAR). We worked with the review author, council staff, the Care Quality Commission, the Clinical Commissioning Group and the police to contribute to lessons learnt about what went wrong at Mendip House.
• On 8 February 2018 The Safeguarding Adults Board published the SAR report.

From when the situation at Mendip House first came fully to light in early May 2016, we’ve worked to understand what went wrong and introduce the necessary changes to stop the combination of cruel and unprofessional staff practice and a failure to quickly spot this and put it right.

We don’t believe that what happened at Mendip House represents the experience of the people we support in our other services, nor the attitudes or practice of our staff. Our adult social care services are rated above the national average. But, we need to make sure that we do everything we can to prevent any abusive behaviour like this happening again. In my last letter to you, I said we would be reviewing all our policies and procedures. We have done this and made the following changes to the way we work. We have:
• Put in an independent whistleblowing line so that staff can confidently report any concerns. We’ve seen a significant increase of 14% in staff awareness of how to whistleblow in our independent staff survey, putting us 7% ahead of similar care providers. We will continue to promote this to staff.
• Increased proactive contact with family members of people we support so that we can pick up on even minor concerns that otherwise
• Started more in-depth data analysis so that we look at data on safeguarding, staff retention, complaints, disciplinaries and other indicators in the round and report on trends in services so we can pick up on minor changes and intervene early if there are any concerns.
• Introduced a new quality assurance process – we will commission an independent evaluation of this after 6 months to be sure that it is working
• Co-opted independent, experienced safeguarding professionals (including a Local Authority ex-director of Adult Services) onto our Services Quality and Development committee
• Begun the process of creating an independent safeguarding panel, in addition to our Services Quality and Development committee, to make sure that all safeguarding issues get properly scrutinised and dealt with
• Introduced a ‘lessons from Mendip House workshop’ for frontline staff and managers from Autumn 2016. It shows what can go wrong and brings starkly to life the necessity of all staff and managers taking responsibility and acting when they see practice deteriorating as it did at Mendip.
• Strengthened our quality improvement teams in each area of the country– these now include autism practice facilitators, positive behaviour support co-ordinators, learning and development staff, behaviour support and health and safety trainers).
• Improved our culture and worked to embed our values in our workforce, for example through values-based recruitment and reflective supervision. Although this will take time, we’ve already seen in our Oct 2017 independent staff survey a 13% increase year-on-year in those agreeing that: ‘Our charity has strong values which are put into practice’.
• Audited all our policies so that they are clearer and are more closely monitored.
• Improved investigations training so that managers are better able to conduct good quality investigations if there are any concerns about our practice.

We have subscribed to the Driving up Quality Initiative, and to STOMP, and these are both integrated into our way of working. Throughout this time, we have been working closely with the Somerset Adult Safeguarding board to ensure we have learnt from these terrible events, and can make sure they never happened again, not only in NAS services, but across the social care sector. We will be participating in the Somerset Adult safeguarding conference to share what we’ve learnt, and will continue to talk about both what we got wrong, and what we’ve done to change things.

Contrary to some of the reports in the media, we have not covered up anything that happened at Mendip House, or our actions in response to those events.

When we last spoke, I said our Chief Executive, Mark Lever, was hoping to hold a roundtable to look at how we, and other organisations, can and should respond to when things go wrong to ensure events done repeat themselves. This has taken longer that we had hoped, but we still intend doing this, and will invite representatives from Learning Disability England.

I’d also like to reiterate the offer I made in August 2016. I am more than happy to join you in any forum which can enable us, as a group of organisations providing services to people with learning disabilities and/ or autism to use our learning to improve services or our responses to poor practice and other service failings.

With best regards

Carol Povey
Director of the Centre for Autism
The National Autistic Society

We need a culture change!

LDE’s Tracy Hammond reflects on recent events

Over the last week or so, the Learning Disability Care and Support sector has not been covered in glory. The tragic and avoidable death of Richard Handley has hit the news, the abuse at Mendip House has come under the spotlight again, and events in West Sussex continue to be of public interest. In addition, the Charity Sector as a whole is facing public anger regarding the dreadful abuse of vulnerable people by Oxfam workers, and the Charity Commission’s ability to regulate is being questioned.
It seems the sector doesn’t need programmes like Silent Witness to damage public perception of us; we’re managing this all on our own!

How can this happen? How can truth sometimes be as awful as fiction, and how can there be an environment where it becomes usual to accept or perpetrate abuse, or not to notice, or care sufficiently to put an end to neglect? I can almost see any reader bracing themselves for my next sentence which will, they expect, be about money. Except it’s not. Money is not the problem, and it’s certainly not the whole answer! Frankly, we managed to get it spectacularly wrong when there was more money in the system.

We live in a world where we commission accommodation in units, where people have packages of support, and where we account largely for time spent in cost per hour. After Winterbourne, we did a lot of navel gazing and produced a great many policies and a few reports, and yet abuse and neglect still happen. Sadly, this will continue until we stop de-humanising people. We do this through our language, when statistic-based management strategies blind us to the plight of individuals caught up in a poor service, and through the adoption of practices which turn people into packages. Indeed, NAS’s own response to events at Mendip House said, ‘People were not at the centre of what we were doing’, and Richard Handley died despite having a hospital passport, being on the GP’s learning disability register, and having some annual health checks.

Greater independence or self-direction of support is often and rightly seen as the holy grail of learning disability services but what about the journey? My husband and I have recently moved to another part of the country, and idioms are slightly different. As a good London boy, my husband will still greet someone by saying ‘alright’. However, here, rather than a perfunctory greeting, he often gets a full and sometimes frank appraisal of someone’s “alrightness”. When we receive this full reply, no one has ever told us about whether they have made their own bed or improved their ironing skills. They tell us how they are feeling, about the impact of their relationships, and generally give us an update on their happiness. None of these things are effectively recorded in outcomes monitoring sheets, and tenders to encompass such intangibles are difficult to write, and rarely attempted. Yet these are the things that matter.

A short while ago, when the Silent Witness story involving people with learning disabilities was being aired and discussed, I invited people to provide examples of good support and to celebrate the good in the sector. At the time, I wasn’t being terribly strategic; I just wanted to counter some of the negativity around. We got some great stories, and posts had warmth and humanity.
However, today, may be such actions are strategic; I’m not for a moment calling on us to forget that dreadful abuse can and does happen, but if we truly want change, we must admit that calling for something to stop is insufficient. We need to deliberately, corporately and individually strive for a positive culture change, and to understand how to embed this. We need to change our language into one that talks about people rather than bed-spaces or units, put happiness at the centre of our support requirements, celebrate the good, measure the right things, and be utterly unaccepting of anything that gets in the way of the best support possible.

Last week, I was discussing LDE’s Driving Up Quality work and thinking about how this can support people to give and receive great support. We discussed how its lack of rigidity is its strength, and I heard some great stories of how organisations had used it to sit down with people, work out where they could improve things and then take action. Recently, I had the privilege of shortlisting the Driving Up Quality awards. The best entries begun with a name and ended with details of how someone’s life had changed.

Richard Handley – a statement

Richard Handley died of complications from constipation in November 2012, and his inquest concluded last week.

Supported living is defined as persons with disabilities living where and with whom they want, for as long as they want, with the ongoing support needed to sustain that choice.” No part of this definition implies that someone’s care should be of a lower standard than when living in a registered home. Yet, this reduction in care is what happened to Richard Handley, and is something that undoubtedly contributed to his death.

There were so many opportunities to save Richard, and yet these were tragically missed. So much of Richard’s story appears to be about communication, and aside from his loving family, people not really knowing him. For example, his medication was changed to include one with a side-effect of constipation, his diet and bowel movements were not monitored as needed for his well-being, and his key worker was unaware of his bowel condition. Once in hospital, monitoring was not effective.

That someone could die from constipation in this day and age is upsetting and difficult to comprehend. That the coroner said “…Without the diligence and persistence of (the family), many of the reviews into Richard’s death would not have occurred…” is deeply troubling.

LDE will continue to work with all sections of the learning disability community to ensure that people get the support they want and need.

For support to be effective, it has to be delivered by people who know the person well, and have the information they need.

We know that the agencies involved have already learned from Richard’s appalling death, but we hope that anyone offering care and support is asking themselves, “Could this happen on my watch?”.

Mendip House and NAS

The Mendip House safeguarding report which has just been issued outlines in detail the abuse which occurred and makes distressing reading. There can be absolutely no excuse for the horrific events which took place there.
In September 2016 LDE released a statement about the poor care and support that had taken place at Mendip House. As the National Autistic Society (NAS) are our members we were extremely concerned about what had happened and wrote to them with our concerns. They replied to our letter and explained what they were doing to address the abuse that happened.
Actions included closing Mendip House, this has now been done, and addressing concerns about issues not coming to the attention of the leadership team quickly enough. We were reassured that NAS was dealing with the situation with apparent openness and vigour.
We have written to NAS again asking them to update us on their actions and to ensure their policies and practices now fully safeguard the people they have the privilege to support. We will share their response on this site once received.