What’s NEW

What’s NEW

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

Social Care Futures

Including everyone session – Thursday 15th November

Next week Learning Disability England members and some of the team will be part of running a session at the Social Care Futures event

Social Care futures is a get together organised by volunteers and supported by a lot of different people with the aim of sharing what is most important and possible for social care in the future

We are working with the Alzheimers Society and  Dimensions to share examples of how people are being supported to live a good life even though often the service system sees them as having complex needs.

Through the session, we want to share what is working but also work out what it will take for those kinds of support to be available to more people

Tim and Andrew are part of the session sharing what they have been involved in with New Prospects in Whitley Bay.

 

Building Community, not fighting for inclusion?

Tim and Andrew will share New Prospects work in Whitley Bay on being part of local community groups and working in partnership with people and groups

Some of what they will talk about was in this paper

 

Everyone in – what this session is about?

The session will share practical examples of how people traditionally viewed as having complex support needs are being supported in a variety of different settings to maintain or build relationships, activities or work with a focus on a good life not only their support or care needs.

 

About Tim & Andrew

Tim Keilty

With a background in the advocacy movement and training and consultancy, Tim now works for a support provider in the North East – New Prospects Association.  He has learned that; telling people what to do on behalf of someone as an advocate, teaching people what to do as a trainer and advising people as a consultant are all easier than actually doing it…

Andrew Strachan

Andrew is an award-winning volunteer and community activist.  Well known, well respected and well connected.  Andrew is nosey, helpful, genuine and friendly; his brain hosts a web of names, stories and connections – the key traits of a community builder.

 

A life, not a service?

Jennie and Sarah will talk about Local Area Coordination in York

Jennie Cox and Sarah Charlton are Local Area Coordinators in York. The LAC programme has been running for 18 months in York and has already seen some great impact on people’s lives and futures, including those labelled as having complex needs.

We are place-based, strengths-based practitioners offering person-centred, flexible, support to individuals and families in defined geographical areas. Our roles involve community capacity building to promote greater social inclusion for all. Our roles are also integral to system change in coproduction with several other innovative programmes in York, such as our Future Focus adult social care transformation programme, our Social Prescribing service and the Multiple Complex Needs Network. We are social innovators, expert generalists and specialists in thinking outside the box.

Centre 404 job vacancies

 

 

 

Position: Deputy Manager (Learning and Leisure Service) – LLDM-1018

Location: London

Hours: Full time 36 hours a week

Salary: £26,000 dependent upon experience

For more information click here 

For the job description click here

For job application click here

 


Position: Receptionist (Ref: RC-1018)

Location: London

Hours: Full time 35 hours a week

Salary: £18,200 dependent upon experience

For more information click here 


Position: Volunteer and Communication Coordinator

Location: London

Hours: 35 hours per week

Salary: £25,500 per annum

Please click here for job description

Please click here for an application form


Position: Driver/Support Worker

Location: London

Hours: Full time, 37 per week

Salary: £17,700.80 per annum pro rata, rising to £18,047.20 per annum pro rata after successful completion of probation

Please click here for job description

Please click here for an application form

 

Centre 404 is a friendly, local and thriving charity with an excellent reputation for providing high quality services to children and adults with learning disabilities and their families throughout North London.

Gary Bourlet shares his thoughts on social care and what he thinks are most important having read the CQC State of Care report

What next for social care?

The CQC are seeing what is good about services and what is bad about services. The CQC look at all the things like health and social care. Most of the people they asked say their services are good.

Some services are not checked by CQC. I worry about what happens in those services to check people have good support and are listened to.

The CQC is also looking at how health and social care could be better. These are the things I think are important based on what people talk to Learning Disability England about

Support staff you know and can trust

People said they needed more continuity. The CQC found that in lots of places it was really difficult to find staff who stay long term in their jobs. This makes it much harder to have good services because we know that people find it difficult to adjust to a change of staff. Things get better when people know each other well. It is also better for staff when they have a good job they can stay in long term.

Staff who are well paid and have good support themselves

The pay for social care staff is very bad and the cost of living is going up really quickly. People have families they have to support. To get good staff who will stay long term they need to have career opportunities and be better paid.

Checking services led by people with learning disabilities and their families

Services need to be better at monitoring their staff. Services should have to employ people with learning disabilities and family members to help with that monitoring and training.

Once you’ve got a service going, they always have to make themselves look good. When the CQC comes around they make sure it all looks its best then they can go back to the old ways if they are not a good service. We need to see more people with learning disabilities and more family members working for the CQC themselves.

Powers to make services change and long term help to keep staying good

The most important thing is for services to change to be better in the longer term. The CQC is very good at inspecting and telling people what they have seen. They don’t have the power to actually make much better. Health and hygiene inspectors have the power to shut down places like takeaways if they aren’t clean enough and make sure they stay closed until they are clean enough. I think the CQC should be able to do something like that and work with the services to help them get better.  CQC can tell services to change but we need help for services to change led by what people with learning disabilities know makes good support.

There’s going to be a 10 year plan for the health service. There needs to be a 10 year plan for social care.

If you would like to read the full report please click here

To read the report formatted in easy read please click here

Learning Disability England Trustee and governance rules – our decision

Learning Disability England (LDE) has been asked questions about 1 of its Trustees and if they should be part of LDE’s governance because of things they have been involved in as part of their job.

You can read all about it and what LDE has done before, read the 10th October update.

The Representative Body and Trustees met this week and made a decision about Peter Kinsey as a Trustee as well as what we will do next to keep making how we work better.

You can read about this and what has happened since here

We will keep sharing our work on this and are interested to get feedback or answer any questions our members or other people have.

You can get in touch with Sam Clark if you want to talk about this or tell us anything.

Sam is on Samantha.clark@LDEngland.org.uk or 07823536603

Update from NHS England on the planning for the NHS 10 year plan

After a lot of different meetings and feedback, including the 7 events we helped NHS England organise, they have shared an update on what they are doing now. There is a short film and a presentation that explains what priorities they are working on and what will happen next.

The new NHS long-term plan for learning disability and autism – update from NHS England

We are really pleased that services for people with a learning disability and autistic people are a priority in the new 10 year NHS plan. Over the past month there have been lots of events run by NHS England and partners, so everyone can talk about what the priorities should be to improve the lives of people with a learning disability, people with autism and their families.  Learning Disability England ran 7 of these events up and down the country. As a result, we have enabled lots of discussions to take place about what the priorities should be.

NHS England is now writing the plan, informed by what people have told them are priorities – nothing has been finalised yet. We want to say a really big thank you to everybody who joined in and helped us all to think about the future. We want this thank you to reach as many people as possible, so National Learning Disability Director Ray James and Learning Disability and Autism advisor David Gill have made this short film, which will also tell you what is happening now and what will happen next – please watch it

To explain what has gone on and what we’ve heard, NHS England has also produced a set of slides about the long-term plan. You might want to use these in conversations as they are a handy way of presenting news about developing the long-term plan. The slides are available here.

If you would like NHS England to keep you up to date on what is happening with the NHS long term plan you can sign up to the

NHS England Learning Disability and Autism Forum for email updates about work at NHS England of interest to people with a learning disability, autism or both and families, carers and supporting organisations. Email engage@nhs.net to sign up.

Join the conversation on Facebook – NHS England Learning Disability and Autism Engagement group and on Twitter- @NHSAbility

To view more information about Planning for the next 10 years of the NHS please click here

Self Advocacy National Convention

The North West self advocates forum have agreed to host a national self advocacy convention. This will happen alongside the North West Self Advocacy conference that has happened for the last 15 years.

There are 40 extra places for self advocates from across England – we think that can be 5 places for each region. Can you talk to other groups or people in your region about how might come and how you might pay for places?

If more people from 1 region want to come than we have space for we might ask you to help decide who comes.

It is in Blackpool 26th – 28th February and it costs £200 per place (this includes 2 nights in the hotel and meals but not drinks and travel)

Learning Disability England are working with NWTDT / Pathways to help plan the sessions at the convention. Do you have ideas for what we should talk about or work as part of the convention?

We want to include and share important work and ideas from across the country as well as being part of some of the North West conference.

Do get in touch if you want to talk about this

You can find more information in the flyer 

To book a place fill in this form

Update on what we have done after people challenged our governance rules and values

Learning Disability England

Questions about our policy and actions on shared values and governance

An update on what we have done so far and will do next

10th October 2018

 

What this is about

A tribunal told the Care Management Group (CMG) that they could not change one of their services to have more people living there. You can read about that here 

Learning Disability England shared the information about the Tribunal decision on our social media and we put it in our newsletter because it is an important decision.

It was also important to tell our members because the Chief Executive of CMG, Peter Kinsey is a Trustee of LDE.

Some people on social media started asking questions about this and saying Peter Kinsey should not be a Trustee of LDE. You can read their questions here

Since then people on social media have asked more questions about

  • Why LDE has not suspended Peter whilst they decide about this
  • How LDE can be credible if it includes someone who runs a service like this
  • Why Peter has not stepped down if he supports LDE’s values
  • Why LDE is taking so long to act on these questions and decide

What Learning Disability England has done so far                        

We told people that we had heard the questions, shared what the questions were, and what we planned to do to deal with them. We put this on our website and in our newsletter, so all our members would know.

You can read that here

Two members contacted us after it had been in the newsletter

LDE started its work as an organisation by trying to make sure

  • Everyone gets a say and no voices are more important than others
  • Decisions are made based on agreement
  • People have good information to make decisions and a chance to think it through or debate it together
  • We work in ways that supports everyone’s involvement and make sure people have support if they need it

How we involved people

LDE has six paid members of staff. Four of those people work part time for LDE. We work flexibly to make sure the 3 disabled team members are well supported to do their work and those with caring responsibilities can balance home and work.

Everyone at LDE believes that it is very important to make sure that we decide things together. We want to make sure that every disabled person fully understands the issues we are working on and is properly supported to give their own opinion or decisions on issues.

We also believe in making employment work for disabled people who have the kind of conditions that some employers think are too hard to make reasonable adjustments for. This means our paid employees who are disabled all work part time, sometimes only for a few hours a week, when their health allows them to do so. Being considerate of other people’s needs and planning around them so that everyone can participate, is the first part of everything we do. We know this means we work more slowly than other organisations. We think that being properly inclusive is more important than being quick.

We have twenty volunteers on our current board and elected representative body. These volunteers live and work all over England. We do not have a central office for LDE. We use technology to keep in touch with each other and make it possible for people to work from home. This is good because it means we don’t have to pay for an office, but it means it can be difficult to arrange for everyone to be in one place at the same time to discuss important issues. It also means it can be difficult to make sure the support each disabled person needs are in the same place, at the same time as that disabled person.

Five people on our elected representative body have learning disabilities. Some have support in their day to day lives, some don’t. The issues our representative body are asked to understand and decide on can be very complex. We think that supporting people to properly understand these issues and to make their own decisions, so they can represent the other disabled people who elected them, is the most important part of our work. We know it takes a long time, especially as we don’t all work in one place, but we think it is more important to do it properly.

LDE’s rules say the Representative Body leads on policy decisions, but the Trustees hold the final legal responsibility. The rules say the board and the representative body should work together to make sure LDE is led by its members and does what it says it will. We realised that we did not have the policies or ways of working set up that made it clear what LDE should do in a situation like this.

It was also clear from what people said that people inside and outside LDE had different ideas on what LDE should do and who should be included, or not included in LDE. We realised these questions bring up some of the core issues LDE should be clear on as a membership organisation working with different groups of people and different kinds of members.

LDE is still working out what its aims and rules mean in practice and some of the people involved are still quite new. Because we are also trying to find a new way of working which enables disabled people to work as they need to, there isn’t an easy model for us to follow. We are not a disabled people’s organisation, or a user led organisation, so the models they use aren’t quite right for us and we don’t work like the large,  charities do. We have to work it out together as we are going along.

We decided we needed to try to think about this as two main issues.

One to make LDE’s policy and long-term ways of working on governance.

One to decide what LDE should do about the CMG Tribunal decision.

We decided that the Representative Body members would lead on these decisions.

A group of people said they would look at the policy in early September. Some others said they would meet with Peter in September too.

We knew that by working like this it would take us longer, but we decided that it could be considered a reasonable adjustment and fitted with our aims and values. That meant we thought it was better to work this way than some people decided alone or just the staff make the decisions.

What has happened so far

LDE’s policy and ways of working

Five members of the Representative Body met on 6th September. They talked about LDE’s rules and ways of working.

That group had some ideas for the policy. We shared those by email. Some people agreed with some of the ideas, but not all of them.

Before this meeting, we thought that people might all agree with the other people in their group, but that didn’t happen. People from each group have different ideas and agree with people from different groups. This means not all the self advocates agree with each other, not all the family members agree with each other, and not all the professionals agree with each other.

Some people from the Rep Body have not had their say yet as they could not get to that meeting or join in using technology.

We also need to include views from the family members who contacted us after reading our newsletter. The family members also had different ideas.

The policy will be talked about at a meeting on 15th October.

We hope that more people can be included that way.

Peter Kinsey being a Trustee

Everyone agreed that it is important to decide if Peter should be a trustee at LDE based on good information. People want to hear what Peter thinks and his answers to the questions people are asking about CMG and LDE.

On 27th September a rep met with Peter and a trustee was there to make notes. We had planned for at least two reps to go to the meeting, but some people could not make it. We decided that because things were taking time to sort out, and that people outside LDE didn’t understand why, that this time it was more important to meet than delay more.

What is happening next

The feedback on everyone’s ideas so far for the policy, the comments from members and on social media and notes from the meeting with Peter have all been shared with all the Representative Body members and the Trustees.

There is a meeting on 15th October which most reps will be at and this is the first thing they will make decisions on.

We will share the decisions the representative body make in October.

We will work out how all our members can have a say on LDE’s policies and ways of working on these questions and other important issues.

We know that by working this way it can seem frustrating to people outside LDE, and we are sorry for that.

We want LDE to be democratic and listen to members, but we also want to make sure that we work in a way that means disabled people, and particularly learning disabled people are fully involved in our decision making.

We are constantly working out how to make the best use of our time and live the values we hold.

We won’t always get it right, but we do hope people understand we are always trying to find the right balance between disabled people being fully included in decision making and acting fast enough on what matters to members and the organisation.

If you would like to download this statement click here

The planned mental capacity reforms are not fit for purpose – Self Advocates, families and providers all told us that

Leading social care interest groups from across the care sector are calling on the Government to urgently rethink its Mental Capacity (Amendment) Bill that is now at a crucial parliamentary stage.

This includes Leading Disability England who’s members include people with learning disabilities, families, allies and professionals as well as provider organisations.

Our recent feedback from members shows how much those 3 groups agree on the problems in the proposed changes.

They are concerned about people’s human rights being undermined, there not being a requirement to put people’s views at the heart of decision making  and the potential conflict of interest if home managers lead on decision making

Our members, Sunderland People First said

There is a risk that we take away people’s independence and giving power to people that may not be doing a good job – look at Winterbourne View.

You can find the briefing from the cross sector organisations HERE

The following organisations are releasing the briefing:

Action on Elder Abuse

Association for Real Change

Association of Mental Health Providers

Associated Retirement Community Operators

Care England

Care Association Alliance

Care Provider Alliance

Learning Disability England

National Care Association

National Care Forum

National Dignity Council

Shared Lives Plus

Registered Nursing Home Association

Relatives & Residents Association

United Kingdom Homecare Association

Voluntary Organisations Disability Group

Learning Disability England members responses to consultation on Mental Capacity Act changes and priority areas of concern

What this is about

Depriving someone of their liberty is one of the most serious things the state can ever do to it’s citizens. It means that even if you can tell people what you want, you can’t decide for yourself things like what you want to do, or where you live.

Sometimes it is right to take away people’s freedoms, for example if someone has done something bad like attacking another person, then there will be what is called a trial. A trial looks at what happened, and what everybody says they think happened. Then a jury decide whether someone is guilty or not. That means they think the person did do something wrong and can be punished. If they have done something very seriously wrong, the person might be sent to prison. It is very important that this decision is made by what is called a jury of your peers; that means people who are like us. Everyone gets to be judged by a jury of their peers. It is a very important part of the law.

Sometimes disabled people don’t have the choice to make their own decisions. This can be because decisions are made about us, without us, by people like social care commissioners, or care home managers. In the past, decisions about disabled people were usually made that way, but these days most people know better and try to make sure they think about what the disabled person wants and needs. The person deciding about you should ask you what you think and feel, and if you can’t speak for yourself, they should ask your family, friends or advocate to help them find out what you like and want.

The government are thinking about how these decisions should be made, especially for people who can’t decide for themselves, or who might be what is called a risk to other people. That means that someone might hurt another person without meaning to, or without understanding what they have done. Usually when someone hurts another person, it will be the court and jury who decide what should happen. But, for some disabled people that decision can be made about them, without a court. We think that is a form of discrimination – it means disabled people are treated differently from other people, because they are disabled.

What we have heard from members about these changes

 At LDE we asked our members what they thought about these decisions and changes. We found out that everyone agreed some of these changes would be bad. Often disabled people, families and providers disagree a bit, but everyone agrees some of these changes would make things worse than they are now.

Everyone was worried about the manager of a service being the person who decides about the disabled person. Learning disabled people are especially worried that this will be like going back to the days of the institutions. All of our members who told us what they think about this said it should be an independent person who gets to make decisions. Otherwise it will be like the judge, jury and gaoler being the same person. There won’t be anyone to help, or to appeal to if you don’t agree with the decision.

Our members, Sunderland People First said

There is a risk that we take away people’s independence and giving power to people that may not be doing a good job – look at Winterbourne View.

Disabled people and their families are especially worried that there is no requirement to consider the persons own wishes. That is how the institutions were. This would be bad enough if there was an independent assessor. We can’t think of another group of people this could happen to, even people who have committed terrible crimes get to have a lawyer to speak for them and a judge to decide what happens next. Our members, Grace Eyre Ambassadors told us very clearly,

We do not want to go back to the days of the institutions!

We were all worried about the change in language to describe people as being of ‘unsound mind’. Learning disabled people and their families don’t really understand what this is supposed to mean. There’s no precise definition, it’s stigmatising and it doesn’t make any sense. We think people who do things like throw themselves out of planes on the edge of space to set records are probably of unsound mind, but people support them to do what they want to do. We don’t understand how this would apply to people with learning disabilities.

Some family members said they thought that if a disabled person is going to be deprived of their liberty because of worries about the safety of others, then it should always be the Court of Protection to decide that. One parent of a young adult with learning disabilities and autism told us

Families still have precious little influence in the care of their loved ones. Access to the Courts is expensive and time consuming – and providers know that. These amendments will make a poor situation even worse and make abuse of power by providers much more likely

What we are doing next

We will make sure what members tell us is fed back to people making decisions on the law, the policy leads in government as well as sharing it with other groups and organisations who are worried about the changes to the law too.

LDE are working with other organisations to join up on what we agree to share ideas, influence more and be a stronger voice together.

We will keep in touch with members on this

You can find more information and an easy read guide to the planned changes on Mental Capacity here

Demand for urgent government action on sleep in crisis

Essential overnight social care support services are at risk because of government inaction over sleep-in payments, according to an open letter to ministers published today.

The letter signed by care, health and education organisations urges the government to clarify how sleep-ins should be remunerated.

A recent court of appeal judgment overturned a previous decision that would have resulted in sleep-in staff being paid minimum wage for shifts, leading to a £400m back pay bill for care providers. However, Unison has now lodged an appeal against the most recent ruling, creating renewed uncertainty for employers over retrospective and ongoing costs.

Without clear information on the long-running sleep-in payments saga, the letter warns, commissioners and providers may move in ad hoc ways, something that would threaten the provision of a vital night time service. The ongoing lack of clarity affects not only care provider organisations, but individuals using personal budgets or direct payments to employ and manage support staff.

The letter also stresses the existing fragility of the social care market, with adult social care facing a £3.5 billion funding gap by 2025 just to maintain existing levels of provision.

The letter urges the government to:

  • clarify its position on sleep-in payments
  • confirm that the current legal position means employers will not face potential HMRC retrospective action to recover underpayment of national minimum wage for sleep in work
  • work with organisations to produce information so that people who use services and their families, the workforce, employers and commissioners understand how sleep-ins should be remunerated
  • work with providers and local government on a sustainable funding solution that will ensure care workers are valued and fairly paid.

We know this issue matters to all of our members as they want support workers to be recognised for the valuable job they do and the funding levels to reflect that. It is particularly a worry for the staff affected and for employers who manage their own staff through personal budgets. Learning Disability England are in touch with people who help manage their family members manage their personal budget. This on going uncertainty is threatening the stability of their support teams as one person told us how concerned they are their daughter’s social care will be cut if the Council thinks lower rates can be paid for sleep ins as this will put us at risk of losing long standing staff some of which have worked for her daughter for 8 years.

We hope the government will act to make this clearer and fairer for the people supported, the staff themselves and the organisations employing support workers.

The letter prepared for the Ministers can be accessed here