What’s NEW

What’s NEW

Here’s all the latest updates and news from Learning Disability England.

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

 

Human rights reform outrage – social care sector unites in open letter to Ministers criticising careless Mental Capacity (Amendment) Bill

Learning Disability England has joined over 100 social care sector organisations that have come together to unite and sign an open letter to the Minister of State for Social Care, Caroline Dinenage MP, and Parliamentary Under-Secretary of State for Health (Lords), Baroness Blackwood seeking clarification and change on concerning aspects of the Mental Capacity (Amendment) Bill. All firmly believe that the Bill will adversely affect the rights of people who rely on care and support services.

 

The letter brings together organisations that support older and disabled people, charities, providers from across the independent and voluntary sector, as well as national trade bodies. This representation is significant, and the first of its kind for this Bill, in terms of its breadth and reach across the entire social care sector.

 

The letter puts on public record serious concerns about the content, progress and passage of the Mental Capacity (Amendment) Bill. The letter follows an attempt by the Minister of Care to clarify the government’s position in a letter dated 30 January in which she welcomes a single discussion with Inclusion London. But sector leaders are unconvinced and standing firm in renewing calls for the Bill to be paused.

 

Dr Rhidian Hughes chief executive of the Voluntary Organisations Disability Group (VODG) says these amendments to legislation are a critical change in law for human liberty and should not be undertaken lightly, nor in the interests of saving money.

 

“It is not fair that over 125,000 people are being deprived of their liberty through a failing system. There is no question that mental capacity legislation requires significant improvement. But government should not be airbrushing existing safeguards away with these entirely unfit proposals which only seem to be designed to save money. We are calling for the passage of the Bill to be paused to allow time for Government and members of the Committee to genuinely work with the sector to get this legislation right.”

 

The Relatives & Residents Association (R&RA) chair, Judy Downey, said:

 

“We are extremely troubled to note that the Bill Committee has simply rubber stamped these ill-considered changes. They are designed to save money and will inevitably result in a botched system of protection, depriving vulnerable people who lack mental capacity with dementia, mental health needs, learning disabilities, brain injuries and others of their liberty, without appropriate safeguards.”

Sue Bott CBE deputy chief executive at Disability Rights UK said:

“Given the rare unanimity across the health and social care sector and disabled people’s organisations we urge the Government to delay the Bill and look again at its provisions. It is better to have a co-produced piece of legislation that works for everyone than rush through a new law that, in its current form, will seriously undermine the human rights of disabled people.”

All those who have signed this letter believe that the reforms in the current guise pose a real threat to the human rights of those requiring the greatest support in life, and call on the Government to:

  • Pause the passage of the Bill and work with the sector to ensure there is no erosion to human rights protections for people who lack capacity and rely on essential care services.
  • Be more open and transparent about the process and evidence which has informed DHSC’s consultation(s) with the sector and the significant departures from the original Law Commission recommendations.
  • Resolve the conflict of interest regarding care managers’ roles that could lead to increased and covert deprivations of liberty.
  • Co-produce the draft legislation and adequately fund the changes it will bring, given that much of the sector is already at financial breaking point.

The full text of the letter can be accessed here.

You can see our January update on LDE’s work so far on this issue here 

#SolveSleepIns February Update

In November we sent out a survey asking about sleep-in payments and how changes are affecting our members. Disabled people, family members and Personal Assistants/support workers responded.

Some people said their local authority would be reducing their sleep-in rate soon and had contacted them about it. This means that some people will be paid less than the national minimum wage for sleep in work.

Members in Lancashire have told us that their local authority has said their rate will change from the beginning of April from £ 94.20 /night to £47.43/night. Although this change will be phased in over 6 months it will result in staff being paid around half of what they had originally been paid.

Other people said their local authority hadn’t made any changes to their rate of pay, but they were very worried that they might in future.

Most people we spoke to were ‘very concerned’ about the about the legal implications of sleep-ins. Everyone we spoke to wanted to pay their staff the minimum wage for sleep-ins. People wanted to be a good employer and were worried about being breaking employment laws and rights as well as possibly having to pay back pay.  People were concerned about how this would affect both personal budget holders, staff and smaller providers.

People were very concerned that changes to the rate of sleep in pay would have a negative impact on lots of people.

People are worried about:

  • Not having a big enough personal budget to pay for support they need
  • Losing good staff who had supported them for a long time
  • Staff not feeling valued or appreciated
  • Concerns about funding redundancies and back pay
  • Not being able to recruit more staff

 

A self-advocate said:

“We would like a lot more Person Assistants & Staff back in Northamptonshire & The East Midlands with a lot more hours for me & Disabled People”

A family member said:

“We have very good staff retention and I try to be a good employer. There is a lot of liability stacked up and any claim would be time consuming and expensive.”

A Support Worker told us:

“As a support worker I feel I may be driven out of the care sector due to low income and if this happens across the whole sector the people we care about will not get the level of support and respect they deserve.”

 

We asked about where people are getting their information and support from about sleep ins. They got information from lots of different places including, other disabled people and families, providers, local authorities, social media and the news.

People thought that guidance and information weren’t very clear and sometimes was different depending on where it was from. They also found it difficult to find any easy read information.

Learning Disability England is part of the #SolveSleepIns Alliance. The Alliance has been campaigning to bring more attention to the issue of sleep ins and prompt a response from the government in,

  • Clarifying its policy position on sleep ins
  • Confirming employers won’t face unfair potential HMRC enforcement
  • Communicating and working with everyone to make sure they understand how ‘sleep-in’ overnight care should be paid for and where any genuinely new money required for this will come from.
  • Working with providers and local government on a sustainable funding solution for overnight care that will ensure care workers are valued and fairly paid.

Our last update included a letter to and response from MP Kelly Tolhurst. The letter recognised the current situation around sleep-ins as an issue. A key message being that the Department of Health and Social Care is telling local authorities and commissioners they should not be using the Court of Appeals judgement as a chance to radically change their fee-paying practices.

You can read the last update here.

The survey is still open if you would like to share your experiences or opinions.

Click here

 

Shaw Trust Power List 2019

The Shaw Trust Disability Power 100 List is an annual publication celebrating Britain’s 100 most influential disabled people.  The Disability Power 100 List is compiled by an independent judging panel.

The Shaw Trust Power 100 list aims to further inclusivity by celebrating the achievements of those people included on the list.

Included on the 2018 Shaw Trust Power List were Jen Blackwell (founder and Director –DanceSyndrome) and Ciara Lawrence (Learning Disability Campaigner) At number 8 on the list, was Learning Disability England’s very own Gary Bourlet.

 

There are seven categories for nominations:

  • Arts, Fashion & Design
  • Business, Finance & IT
  • Entertainment
  • Politics & Law
  • Education, Public & Third Sector
  • Digital, Media & Publishing
  • Sport

 

Nominations for this year’s Shaw Trust Power List are now open.

Click here to vote

 

Our work on the Mental Capacity (Amendment) Bill – update January 2019

Last year we asked our members what they thought about the Mental Capacity (Amendment) Bill. Self advocates, families, professionals and organisations all agreed on the main points – they were worried about people’s rights, people and their families’ voice being heard and potential conflicts of interest in the proposals. You can see what people said here

Learning Disability England has worked with other organisations and people to keep raising what is important to all our members especially people with Learning Disabilities who might be affected by these changes.  This included making a written submission to the Public Bill committee – you can see ours and all the others here

On 22nd January we were one of a group of organisations who wrote to the Times Newspaper 

Or you can read the letter and an article in the paper if you have a subscription here

Please click for the letter

Please click for the article

More newspapers, TV and radio are doing pieces on this important law. If you have experiences or points you want to share let us know

The full letter is here

 

The law commission are thinking about driverless vehicles

The law commission are thinking about driverless vehicles. They want to know what disabled people need so that vehicles without a driver are accessible to everyone.

Their consultation is here

It is important that they get to hear about all types of access, not just for wheelchair users. Technology does not always work and they need to know what support learning disabled people need to use transport without a driver there to ask questions. If you can help, please get in touch with them as soon as possible, the consultation closes on Feb 8th. 

The NHS 10 year – what we are thinking so far

We have done a short briefing for Learning Disability England members on the plan and Learning Disability England’s thoughts on it.
A chance for people with learning disabilities and autistic people’s life and care to matter?


Our key points are:
We hope this NHS plan can lead to action and real change, so people know they matter, and everyone gets good treatment.
There are some good things in the plan, but some things have been said before. We want to know how the targets will be checked and who will make sure they happen
We do not agree it needs to take another 3 – 4 years to change community support so people leave specialist hospital or do not need to go in. We think there are other ways this could be changed faster.
You can see the short paper here

Celebrating 70 years of Human Rights – action, resources and inquiry


Learning disability England is one of the 155 groups or organisations that has signed this letter to the prime minister asking her to commit to looking after those freedoms for everyone 

We know this is especially important for people with learning disabilities as we keep seeing examples where people’s rights are not protected or put first in how they are supported. Following campaigning including that led by families, people with learning disabilities and autistic people the Parliamentary joint committee into Human Rights will hold two evidence sessions about the treatment of people with learning disabilities and autism in Assessment and Treatment Units (ATUs) and other inpatient units. One of those is Wednesday 12thDecember

You can see a celebration of the Human Rights of autistic people and people with learning disabilities in the Rightful Lives exhibition

British Institute of Human Rights have a resource on Learning Disability, Autism and Human Rights you can download here