Sharing stories on what is important

Joe Ulleri – A life that mattered

Joe Ulleri was a much loved member of his family, and of the L’Arche Community where he lived.

He died in 2016 due to bad health care after a fall.

Lots of the hospital staff were kind and good but overall there were problems with the treatment and care he got.

An inquest decided that the problems in his care in the NHS were neglect and part of why he died. Joe’s carers did everything they could to support when he was in hospital.

His up to date hospital passport went into hospital with him, it showed his likes and dislikes, and, crucially, what his dietary needs were.

A 24 hour rota of friends, supporters, volunteers and family were by his bedside throughout his time in hospital.

Yet still he died. The hospital passport was ignored.

The rota of carers was treated as a nuisance. They were not included in decisions about Joe’s care.

They tried to stop the delays and poor communication that were part of his treatment in the Manchester Royal Infirmary but their concerns were not listened to.

Joe died of pneumonia, and lack of food.

He did not get enough food and nutrition or the right anti biotics. This happened in a modern hospital.

We know other people with learning disabilities do not get the right care in hospital and we are hearing more and more examples of when people died because of that.

Joe is a person, not a statistic.

Like all people he mattered and his death matters.

People loved Joe and they have spoken up to remind us that he had a good life and made a difference in his life.

Since the inquest into his death his family, friends and supporters have shared statements and stories about what kind of person Joe was and how loved and liked he was.

They also said that there must be changes in how health services work – no more reports but action now.

At Learning Disability England we read these with sadness and happiness.

We are glad to see people reminding us about Joe as a person. He mattered.

We hope we can all use these words and these examples of services failing to make the most important change of all – a value placed on the important lives of all fellow citizens, with and without learning disabilities.

All people with learning disabilities lives are important. The way care and support happens should be built on that belief.

We also support the work to make health and social care systems better including.

  • Mandatory training about learning disability and autism for all healthcare professionals delivered in partnership with self advocates (find out more about that here).
  • The work on sight tests, health checks and stopping over medication
  • The NHSI Learning Disability Standards

We will work with our members and partners on these

We will also keep helping people with learning disabilities speak for themselves or share the stories that show how their lives are important and must be valued.

One way we are doing that is working with self advocates from across England on building a self-advocacy movement for better health.

LDE Webinar

Gig Buddies – serious fun – Delivering serious outcomes for people with learning disabilities doesn’t need to be dull!

Friday, April 26th 2019

10.00 – 11.00

Stay Up Late’s Gig Buddies project matches people with learning disabilities with a volunteer who shares the same cultural interests to help people build stronger informal support networks and make new friendships.

In this session Paul will explain how it works, and how it’s delivering some ‘serious outcomes’ for people in a way that doesn’t feel at all serious, in fact it feels like an awful lot of fun!

 

Paul RichardsPaul is a founder, and the director of the charity Stay Up Late. The charity grew out of the experiences of the punk band ‘Heavy Load’ that he played bass with for 15 years. Heavy Load were also the subjects of the feature length documentary movie of the same names (which Mark Kermode rates as one of the top 5 music documentaries of the 21st century!).

Stay Up Late also pioneered Gig Buddies, the innovative volunteer befriending project which relieves social isolation through a shared love of the same cultural activities. The model is now being shared across the UK (and Australia).

Paul previously worked as the registered manager of a group home for people with learning disabilities and was the Involvement Manager’ for Southdown Housing Association. More recently he was the National Co-production Adviser for Think Local Act Personal.

Paul’s passion is ending inequality for people with learning disabilities and when he’s not working he can be found spending too much money in record shops or walking on the South Downs with his family. He has 4 kids and a dog and lives in Hove.
His catch phrase is ‘Keep It Punk!’

Mandatory training consultation by the Department Health and Social Care

Mendip House – taking what happened seriously

We have been talking about the recent news on the actions taken by the police and the regulator (CQC) after the abuse people experienced at Mendip House.

Learning Disability England (LDE) believes that organisations that are responsible for the care and support of people with learning disabilities must act in ways that help keep people safe from all kinds of abuse. If they fail to do that those organisations should be accountable and face significant punishment or sanction.

If organisations are not held responsible when they fail it sends out the wrong messages about the value of people with learning disabilities in society.

As well as organisations being responsible for their part the people who commit abuse should be prosecuted if there are criminal acts, so they take personal responsibility too.

We encourage those organisations responsible for poor care and support to use their failure as a learning experience and do better in the future – but this should be alongside public actions that demonstrate how society does not accept the actions of the organisations or any people breaking the law.

LDE is concerned that the recent decision to only issue a £4,000 fine for the financial abuse that took place at Mendip House falls well short of what should have happened to show how serious this was.

What we know about what happened at Mendip House

In 2016 Learning Disability England learnt about the abuse that had been happening at Mendip House in Somerset. We heard about it from the CQC report on the service. We wrote to the National Autistic Society telling them about our concerns and asking questions about what they had done.

National Autistic Society replied saying they take responsibility for having ‘failed badly’ and would be open about what they were doing to find out what went wrong and how they needed to change how they work.

You can see the letters here

In February 2018 National Autistic Society (NAS) shared an update on what they had done to stop abuse like this happening or to act much quicker when any thing starts going wrong. This was after the Safeguarding Adults Board report came out giving more detail of the dreadful abuse some people living at Mendip House experienced.

You can see the update from NAS here

Last week we heard that the Care Quality Commission (CQC) had fined NAS £4,000.

This fine is for NAS not following the regulations on protecting people’s money.

You can read NAS’s statement on that here

It was also confirmed that no staff or organisations are being prosecuted for what happened at Mendip House.

The member representatives at Learning Disability England have read the newspaper articles and people’s responses on social media.

Like many of them we are left feeling a lot of different emotions –

  • Fear that people’s rights are not equal to other citizens if they do not get the same access to justice when they are harmed
  • Anger that this can happen to people and was not stopped straight away
  • Disbelief that such serious financial abuse only leads to a £4,000 fine
  • Worry about the messages this sends to everyone in society about how important autistic people are

What we are doing next

Learning Disability England exists to work for change.

We are left with a lot of questions that we want to find answers to. We will use the answers to help make change happen so people with learning disabilities, autistic people, and their families get access to justice if they do experience problems and people supporting them know the agencies responsible for prosecutions or regulation will act in the best interests of the people they support.

The questions we are asking are

  1. Why was there not enough evidence to prosecute?
  2. How was evidence gathered by the police or other agencies who do that?
  3. Did the people getting evidence use good practice in getting information from autistic people or people who do not use words to communicate?
  4. Did CQC use all its powers in this situation?
  5. Why has it taken so long for this fine to be decided?
  6. What are the rules on sanctions, fines etc.
  7. What must happen to result in what sanctions?
  8. Did anyone check on what the commissioners organising or buying the support had done and make them change if there were mistakes?

 

We have written to CQC and The Police and Crime Commissioner asking these questions.

Click here to see the letter to police and click here to see the letter to CQC.

About us

You can find out about the Representative Body members and what we do here

LDE Webinar

No HOLD’s Barred – everything you ever wanted to know about Home Ownership for people with Long-term Disabilities (HOLD)

Friday, March 22 2019

10.00 – 11.00

Although it’s been around since 1997, helping significant numbers of individuals with a wide range of different disabilities to buy homes of their own, many people still think HOLD’s too good to be true.

So LDE members MySafeHome Limited (who support people who want to buy a home using HOLD) are inviting any questions about this unique Government approved homeownership model that their Managing Director, David Abbey (himself a member of LDE’s Representative Body) will answer in a live webinar.

Whatever you want to know about HOLD this is your chance to find out, in fact, the tougher and more in-depth the questions the better!

Please email yours to Mariana Ortiz mariana.ortiz@LDEngland.org.uk by Wednesday March 20th 2019 indicating if you’d also like to ask it live on the webinar itself on Friday March 22nd.  Even if you don’t have any questions we hope you’ll still join us (or watch later) for a unique and truly no HOLD’s barred webinar!

PS: Completely new to HOLD?  Visit www.mysafehome.info to find out more or click here to view last year’s introduction to HOLD webinar.

 

 


David Abbey
David Abbey has worked in the financial services sector since 1984 and is a fully qualified Financial Adviser.

Back in 1997, he was invited to join a ‘steering group’ to develop a process to enable people with a disability (who also rely on benefits for their income) to buy a home of their own. The result was a unique Government approved shared ownership model, known as HOLD (Home Ownership for people with Long-term Disabilities).

David then established MySafeHome Limited to provide everyone involved in helping people with disabilities realise their dream of home ownership with the support they need and to date almost 1,300 individuals have used HOLD to buy their own home.

Passionate about the personalisation agenda David is the UK’s subject matter expert in homeownership for people with disabilities and in July 2017 was honoured to be elected to the LDE Representative Body.

 

Supported Living – What is happening

On 18th February the BBC released some figures that said there are lots more serious incidents and unexpected deaths in supported living.

Learning Disability England are worried to hear about any unexpected deaths and serious incidents in supported living as we know it is someone’s life.  Seeing how many are reported here makes us very worried, but we are not shocked. We see from the news, from formal reports, and hear from our friends, that too many people with learning disabilities are living a very different life to people without disabilities. Learning disabled people experience far too much different treatment and abuse. Whether this is verbal abuse on public transport, serious sexual assaults in residential care, and everything in between, we know it can happen in every setting where disabled people receive services. We also know that too many people with learning disabilities are dying too young in ways which don’t seem to happen to young people without disabilities. Only a shift to seeing people as fully equal, with rights and lives that matter, will bring about the change we need to see.

Some of the increases are because there are more people living in supported living but even so, these things are happening to people with learning disabilities and they shouldn’t be.
Some of the increases might be because there is better reporting from providers. We think that being transparent about what goes wrong is a good thing but we are worried that some things go wrong because of poor care or not having enough money for care.

BBC File on Four and BBC Breakfast have told stories of poor supported living and 2 stories of good supported living. In one good supported living the money had not been increased for 15 years.

Learning Disability England is worried about the lack of funding for social care because there is £7bn less than there was before austerity. We know that care packages, self advocacy and other vital supports are being cut and having a negative impact on our members.

We know that some of our provider members have reluctantly handed contracts back because they are not well enough funded. What is worrying is that some providers will still take underfunded contracts and cut corners.

We believe that good quality supported living is the right thing to do – we don’t want to return to institutional services. Good supported living follows the UN Convention on the Rights of Persons with Disabilities and includes the principles of the REACH standards and The Real Tenancy Test.  Jayne Knight blogged about those last week click here for Jayne’s blog

We know there are many great examples of good supported living using personal budgets and with providers supporting.

Anyone, with the right support can live in their own home and we do not want to see people being made to live in institutional care because of their high support needs.

We, along with most other organizations are calling on the government to fund social care properly, but it is about more than funding. We want to see a Social Care Future that works in people’s lives and helps them have rich and rewarding lives, so we will continue to support the #SocialCareFuture initiative.

Learning Disability England’s Co Chairs of the Representative Body, Wendy, Scott and Jordan have written to the CQC to ask for more information on the figures presented by the BBC so we can understand what is actually happening.

You can see their letter here

An easyread summary here

We also ask our members to let us know what they think about Supported Living or any worries or questions they have. We will be sharing our work and questions we have too.

We will share the replies we get and what we learn from them.

People not regimes – communication, rights and understanding

In December 2018 CQC were asked by the government to look at how restraint, seclusion and segregation are being used in services.

Learning Disability England started talking about this with some of members.

You can see more about what we heard here

We heard from some members about their experiences.

Understanding what is possible and knowing your rights

Joseph and his Mum Claire told us what happened to him as a young man:

Due to a significant personal budget and highly experienced and trained staff, Joseph has had no issues since 2015 and now lives a full inclusive life in his community.

Before then Joseph was verbally abused by a member of staff. When his behaviour escalated as a result, he was physically restrained by 4 people holding him down on the floor. This happened even though Joseph was on the floor anyway. 

The use of restraint did not appear to be remarkable or objectionable to either provider staff or to staff at the local authority. I was given the impression by both that this was acceptable.

Although Joseph’s communication difficulties meant that he spoke very little about what had happened to him at the time, the prospect of returning to unit was very distressing and he refused to stay overnight. It was only years later that Joseph found the words to describe what had happened and the way it had left him feeling.

It was only when I learned about positive behaviour support and the use of restraint did I realise that what had happened to Joseph was not right.

Since then I have tried to have the incident investigated fully, although the results have been very disappointing. It feels like both the authority and the care provider are more concerned with defending the physical restraint of my son by their staff than wanting to prevent this sort of incident from taking place again.     

Joseph remains scarred from his experiences and is still looking to take legal action against the local authority because he believes they did not keep him safe. I am worried that the authority and providers have not learned from Joseph’s experiences, and that other people may experience similar treatment.  

Investing in communication skills

“a lot of the issues that I have seen boil down to lack of communication or not being able to know how to communicate with people who require extra support”

As a support worker Mel says “During my induction week I spent two days learning techniques of physical restraint and I later had regular refreshers either at staff meetings and also yearly.  Yet there was only half a day on communication”

Mark {Mel’s son} is now supported by his local community which includes college and going to his local pub and catching up there with Grecia, bar staff at the Anchor Pub.  She said that if anyone gives Mark a hard time they’re out.

Families should be listened to and respected, certainly if bad practice is taking place.  However, it’s about the individual and for the individual – The 2014 Care Act and wellbeing, like good communication, should be at the heart of it.

Melanie O’Neill has shared her paper on what she has learnt as the Mum of someone with Autism and as a support worker, in organisations

click here for Physical Restraints Vs Communication paper

What we will focus on and work with our members to make happen

Learning Disability England wants more to be done to end the harm these practices are having on people. We know too many people are restrained or secluded or on medication when listening to them and good support could stop the need for those practices.

We think that

  • the underlying reasons restraint is being used should always be recognised.

For example, if people are being supported badly or in places that cause them distress their behaviour may show they are afraid. For example, environmental factors may mean autistic people are afraid and lead to them being restrained and then more afraid.

We think this is a failure in services, not the person.

  • restraint must be better understood so the difference between a gentle hand on someone’s arm and holding someone against their will is clear and supportive practice and restraint are not counted as the same thing.

 

  • it is never OK to accept fully body restraint or long-term segregation and seclusion as part of someone’s support

 

  • the focus needs to be on the good support practices we know work for people being supported and the staff supporting them

 

  • support staff must get good training, support and ongoing learning on positive ways of working for the people they are supporting now

 

  • no one’s ‘behaviour’ justifies this use of seclusion and segregation. The amount it is used shows how wrong our system of support is.

We want there to be more focus on good community services and support for people to live an ordinary life.

Understanding how people communicate and what they are saying through words, signs, symbols or their behaviour is very important for people to live a good life.

We believe developing community supports with skilled staff will help end the restrictive and damaging practices in situations that do not work for people with learning disabilities or autistic people.

 

We will work with our members to share the good ways of working, help others learn about them and support policy or legal changes that are needed.

“REACH – constantly aspire for better” Reflections on Supported Living today

Blog by Jayne Knight, Learning Disability England member

The Radio 4 programme, File on 4 on 12th February 2019 looked at supported living and what the increases in unexplained deaths and serious injuries mean for those living in supported living environments. At LDE we believe that institutionalisation can happen in any setting if strong values and principles are not driving how the support is designed and delivered.  Good care and support cannot be achieved when economic factors rather than the people supported have come to dominate the shape of available care models.

The programme featured Jayne Knight, an independent advocate, housing and care specialist and a member of LDE. We spoke to Jayne and asked her, on behalf of LDE, if she could give her opinion on what’s good about supported living as it is, what’s wrong about it and what needs to happen for it to improve.

Supported Living – What I am seeing and hearing, Jayne Knight

Supported Living means living in your own home with support to live your life as you want to. It is easier sometimes to describe it as support for living as the model supported living has started to mean something very different to that simple concept. In my view, a great deal of supported living has been hijacked by the Authorities, developers and big care companies and turned into something else. We end up with a housing and care situation so far removed from having the ability to have your own sanctuary,  your home,  where you feel safe and have chosen people to support you that you trust.
I went to an opening of a ‘ specialist block of flats’ and the future tenants were sitting outside eating the lunch provided as part of the opening ceremony. The manager and others, not any tenants, were cutting the ribbon. Tenants were presenting the bouquets. The manager announcing the opening said very proudly we are X and ‘we are pleased to be opening these flats today because ‘we are the people who work with and house people no-one else wants to.’ This was in front of the people who they were housing and providing care for. Can you imagine someone like Barratts the builders opening a new scheme for first-time buyers saying that?  They just wouldn’t ever market that way, but within this model offered to learning disabled people, the people in charge believed it was acceptable and, what’s worse, that they felt were being kind and gracious. I have dreams about where I could have shoved the bouquets!

When I look at housing opportunities for as I have done for over 35 years for people who need housing I ask, what would I do this if I was trying to find accommodation for someone in my own family or me? Not what I want personally because we are all different, but how would I go about it. There’s nothing different about getting housing for someone else. How would we do it within the budget we’ve got? Sometimes there are compromises to be made because of that, for example, we can’t all live in that very expensive, leafy suburb or a large villa with a swimming pool (pity), but we can get good housing within very good search parameters. We can look for very acceptable and suitable options. If what’s most important to you is that you live in a location, you might have to compromise and end up in a larger flat for example rather than a bungalow to achieve that. You never know that block might be near a swimming pool and in leafy gardens. These are the same kind of compromises anyone has to make when deciding where to live; the most important factor is that people with learning disabilities are free to exercise the same kinds of choices, with equal control over them as anyone else.

The way that economic factors such as Local Housing Allowance (LHA) work tends to mean, with some exceptions, that the private rental sector does not offer the same housing opportunities to people with learning disabilities that it does to people without disabilities. LHA is paid at the same rate as the cheapest 30% of housing available in that particular area, which restricts availability to the cheapest, and frequently therefore often the worst housing. There are ways however that housing organisations such as Let’s for Life, another LDE member, can lease properties from the private sector and provide a person-centred housing service with all the safety factors that are needed.
Renting directly from private landlords without someone like Let’s for Life is further complicated for learning disabled people by barriers such as landlord anxiety about support needs, or capacity. Most widely a typical for buy-to-let mortgage contains clauses banning the owner from renting to those in receipt of housing benefits. LHA is also funded from central, rather than local government, providing cash strapped local authorities with an irresistible lure towards the wrong type often of non -regulated supported living provision, where they can claim most, if not all, of the costs back from central government.
Local authorities have to pay the full bill for people in residential care, but in supported living people get housing benefits for accommodation and other benefits for bills. These particular factors combine to create a situation where people are funnelled towards any supported living available, rather than it being the bespoke option individuals can choose to best suit their lives and needs. Where Local Authorities do this right, we see fabulous examples of people with every level of disability having a great life. Where people are treated as a commodity and a good business proposition we see some of the worst provision.

There are three areas most needing to change; 1. Economic incentives, 2. Regulation and inspection, 3. Choice and Control.
1. The supported living market is expanding as people are seen as a commodity and private investment money shapes the choices an individual can make for themselves. Whilst some of these investors are driven solely by profits and disregard for people’s choices, there are sources who would like to be more ethical and who should be encouraged. Many of the better kind of investments come from things like pension funds which lend at a very low rate, 5 or 6% on commercial mortgages. The challenge for these more ethical investors is that they want some kind of guarantee their property will be used and that they won’t be without their reasonable return if the property is then not used by the local authority. The local authorities are loathing to provide this kind of guarantee. How can the bigger national bodies, such as NHS England perhaps help to broker this situation and provide the kind of assurances both assist parties to remove some of the barriers that currently prevent more ethical investors who want to provide good housing and/or support. Some of the best people in Transforming Care are the housing leads in my view. These people have a ‘can do’ approach and can be asked to give valuable help and advice about how to make something work not to stop creative and imaginative proposals going forward by people who just do not understand housing and good care.
2. When you live in your own home (such as a tenancy) it is not inspected. It is the head office of the supported living provider which is inspected. Obviously, we don’t want inspectors just wandering around people’s homes, but not looking at all is not the answer. When people lack capacity, we are subjecting them to a situation which people can take advantage of, and then not even inspect it. For those without capacity who need a tenancy it currently goes through a short judicial process – one potential solution is to introduce an inspection schedule into that tenancy process so that people don’t go ignored. A small layer of protection and regulation which can fit within an ordinary life, rather than an onerous system. Housing advocacy is needed to make sure that people are correctly advised. It should be a requirement that I’m taking up a specialist tenancy arrangement that the social worker has to prove that the tenant or families have received separate independent advice. 

 

3. In 2002 the REACH standards were written; they are still there, still the CQC recommendation, but widely unused. They were relaunched with the Real Tenancy Test by the NDTI and remain very good standards and guidance about the law and practice in relation to supported living. They were called REACH because you can’t always achieve the absolute best right at the beginning, but you constantly aspire to better. There are 11 REACH standards, and if borne in mind throughout the process of choosing whether supported living is appropriate to serve as a simple, excellent guide to whether supported living is really that, support to live a life or just a modern form of warehousing. These standards include things like being able to choose who you live with, where you live, and who provides the support you need. Things which should not be too much for anyone to expect.
Some of the situations that I have seen are so far removed from supporting a person in their own home that they look like the worst type of residential care. Care providers start to think that they are in their workplace and not the persons home. Simple but rude assumptions where staff walk in and immediately put their phone on charge without asking anyone, taking huge liberties with the utilities, leaving heating bills to become huge and not taking care of the tenants’ property. Care companies think it is not a problem to take a room for themselves without permission and make it into a locked office. No one would dream of coming into my home and doing that, but it is often seen as normal practice in supported living
A young man recently out of hospital is being supported by an excellent small care provider rang me last week
He said he liked his place and had chosen the colours of lime green and purple. It looks amazing actually! He then said could I arrange to have the hallway painted. He said to me ‘it’s far too dull Jayne’. He also suggested to the care provider, My Life Choice that they needed to change their cleaning products. Just a few weeks of coming out from the toughest life in a hospital and those simple, everyday wishes being very important.
The joy of knowing you have the safety and security of your home when you put your key in the lock and that everyone who comes there is someone you want and trust in your own home. It’s simple so how does that simplicity end up into something that is so far removed it’s potentially dangerous and limits the quality of some of the most vulnerable people in society.

Learning disability and autism training for health and care staff – formal consultation launched

Wendy Burt, Scott Watkin and Jordan Smith as the Co-Chairs of Learning Disability England’s Representative Body acting on behalf of our members said;

“Understanding and properly listening to people with learning disabilities, autistic people or their families can be life-changing or life-saving so we are pleased the government has started this consultation on mandatory training.

We want to stop disabled people’s experiences being so different from non learning disabled people’s.

The training could be one part of stopping people’s experiences being so different.

We will look at the government’s ideas in detail but we are glad to see straight away that the consultation talks about changing health and social care staff attitudes and co-production in developing and delivering the training.

We will make sure LDE works with our members to know about this consultation and helps their feedback reach the Department Health and Social Care. We know that many LDE members have good practice, and evidence on what works to share as the Department asks”

The Department for Health and Social Care have started a consultation on training for health and care staff – it will be mandatory for some staff. That means they must do it as part of the training for their job.

This is happening after campaigns by families (like Oliver McGowans’) and recommendations from inquiries like the Learning From Deaths Reviews (LeDeR) programme

The consultation suggests the training covers 3 main areas:

  • Understanding Learning Disability and Autism
  • Legislation and Rights
  • Making reasonable Adjustments

There are questions on each chapter or the main points click here for consultation document.

The consultation is open until 12th April

You can find the easy read consultation here LINK

And full consultation here LINK

If you or your organisation are a member of Learning Disability England please do let us know if we can help you prepare a response and please do share your response so we can help bring together everyone’s ideas and main points across the membership