A Statement following the inquest into Danny’s death

People with learning disabilities and their families are sadly all too used to dealing with substandard support, a lack of choice, and professionals who refuse to listen to us. Neglect, arrogance and indifference are common themes in the recent inquests into the preventable deaths of Connor Sparrowhawk, Oliver McGowan and Danny Tozer. And this is shameful.

However, in Danny Tozer’s case, the account of his care that has emerged at his inquest is all the more shocking because it took place at one of Royal Mencap’s supported living facilities. The biggest and most powerful UK charity for people with learning disabilities, not only failed to protect Danny, it failed to provide him with the support and the life he deserved. What is worse, is that Royal Mencap’s approach at the inquest has been to blame Danny’s bereaved parents and to focus on his behaviour rather than failings in his support and care.

This inquest has highlighted the conflict of interest that Royal Mencap has in being a major provider of services whilst at the same time claiming to be an organisation that campaigns and lobbies on behalf of people with learning disabilities and their families. It should choose which it wishes to be.

There have been many unexpected deaths, serious injuries, and allegations of abuse in recent years , across many different services. The figures suggest that there is a wider problem within the sector and that support providers need to urgently review their safeguards and their culture. We need a new openness and willingness to share and learn from uncomfortable truths. The aim of preventing further deaths and injury must overcome any reticence in sharing the whole truth.

Enough is enough

By Tracy Hammond

LDE has commented before about the death of Danny Tozer and sadly, we’re not convinced that across the sector, services are any safer, or care standards any better since this tragic event.

Once again, we are writing about how people should be safe and free from abuse in services, when we should be aspiring to so much more for people.

We cannot imagine how painful it must be for those who loved Danny to sit through an inquest into his death.  We hope they get the answers they are due.

The independent report into Danny’s death created a poor picture of the care he received from Mencap and certainly highlighted problems within the home.

We hear time and again how family members are treated when they try to raise concerns or get to the bottom of what has happened to their loved ones.  This adversarial approach must stop, organisations take a mature approach to working with families, co-production means sharing, organisations that take a confrontational or defensive approach are implicit in creating cultures where poor practice can flourish.

We all need to work together to prevent tragic events and support people to have great lives.

We absolutely believe that people should be held to account when things go wrong, but this is not enough; we need to stop tragedies in the first place.  We need to learn from the past, acknowledge how things should have been better and make sector-wide changes, but also cling onto past good practice and build upon, rather than erode this.

We are seeing a rise in the number of larger residential settings and it is difficult to see how these can afford the true person-centred approach that is so important to ensure people good and safe lives.  A true person-centred approach is not about using the correct form or planning tool; it is about knowing that person and honouring them during every moment of support.

Get involved #SolveSleepins #StopSleepInCrisis

What are we doing?

On Wednesday 16th May and Friday 18th May, the #SolveSleepIns Alliance will be conducting two ‘Days of Action’ which involves meeting and speaking with as many MPs as possible.

Wednesday 16th May- Houses of Parliament, Westminster

If you want to be involved in this please contact us 

Friday 18th May- Your Local MPs Constituency Office

We need as many people as possible to be involved in this!

Why are we doing this? 

In order to raise attention to the issue of back-pay and social care, we need to speak directly with MPs who can help change things. This includes backbench (non-government/shadow cabinet) MPs, government ministers and those on relevant select committees.

The Solve Sleep-ins Alliance thinks that care workers and PAs should receive all back-pay that they are entitled to. The Government commissions and funds care services, through local authorities. For the past six years, the Government has underfunded sleep-in shifts by not providing local authorities with the money to pass onto providers, personal budget holders and care givers equivalent to the National Living Wage. It is thought that this underfunding for organisations that provide care and support to people with learning disabilities could be as much as £400 million.

The Solve Sleep-ins Alliance believes that central Government should pay the bill facing social care providers and personal budget holders because they are ones that have caused the problem. We are calling for the Government to set up a fund which pays workers their back-pay directly.

Social care providers and personal budget holders rely on funding from local authorities to be able to pay care workers and PAs correctly. At the moment, most local authorities are still not paying providers the extra amount of money needed to cover the costs of paying the National Living Wage now or in the future. We need Government to properly fund social care now and into the future.

Who can get involved?

Service users, workers, families and other sector representatives are all encouraged to attend. If you are reading this, then you can join!

How can I participate? 

Email your local MP asking to set up a meeting on our day of action (Friday 18 May).

We have documents to help!  They are:

Easy read overview doc

About the campaign

Letter to send to MPs on sleep-ins – To ask for meeting 

 

Please contact your MP now – asking them to solve sleep-ins!

The Ideas Collective

Taking advocacy back to basics

This paper on advocacy for or led by people with learning disabilities is the first time we are sharing our thinking & questions around an issue. We are
writing about this because we want to be part of a debate about what could or should happen next in helping people live their lives as full citizens with
choice & control over what happens to them individually.

Click to view this paper

The Ideas Collective

Keeping out of trouble:
Alternatives to prison or hospital for people with learning disabilities who get into trouble with the law

This is a discussion paper from the Ideas Collective. The aim is to stimulate more thinking and ideas about how to:

  • stop people with learning disabilities engaging in risky or offending behaviour that gets them into trouble with the law
  • increase the availability of alternatives to prison or hospital
  • help people resettle successfully following detention.

Please click for paper

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

Read more  “Public Affairs action on sleep-ins”