We Need To Talk About Social Care

This week Learning Disability England is holding a meeting for our members about social care funding. Or lack of funding!

There are lots of problems in social care.

We know that there has not been enough money given to social care. This means lots of people aren’t getting support they need. Reduced budget in social care also puts extra pressure on the NHS.

We have a bigger population and an ageing one as well.

We have People with mild learning disabilities and Moderate learning disabilities losing out.

We have people who have multiple disabilities losing out.

We have ageing families who are worried about the future for their sons and daughters.

There is a lot that needs to be done.

There needs to be long term funding.

Services need to be brought up to the 21^st Century and we need money to make that happen.

Codes & Practices must be the same wherever you live. These should be produced by people with learning disabilities along with their families.

People should be able to get care in the community. So instead of putting money into ATUs, this money should be put towards Learning Disability nurses who work in the community.

To make social care better we all need to work together and campaign for what is right. This means Housing, Education, Health, Charities, Social Services, Volunteering Organisations, Disabled Peoples Organisation, Self-Advocacy groups and Family organisations all need to work in partnership.

Raising local council tax to pay for social care is a stop gap solution. What we need more of is a permanent solution from the government with a cross party approach. It’s everyone’s problem so everyone needs to work together to find a solution.

The short term quick fixes are not enough, the government needs to think of long term effects on society.

Housing and funding for people to live is needed to sustain everything. A home forms the base for someone to live their lives from; helping with health, work, education and leisure activities.

Localized funding supported by the government should make sure that all services around the country are of an equally high standard whether it be city, town or rural area.

Social care standards are particularly important for people such as elderly people or people with a learning disability.

User led groups and family groups needs to have a big say in making social care fit for the 21^st Century.

Policies on Social Care need to be developed by User led groups and families.

Social care should be more run by user led groups, especially self-advocacy groups but also family led groups.

People with learning disabilities in 2017 are not feeling as if their aspirations are being met.

Social care should be supported to keep people healthier for longer and we all need to work harder in joining up thinking and working around the UK.

We should start asking ourselves: What would social care fit for the 21^st Century actually look like? 

Then we need to take serious steps to actually get us there.

Progress starts now.

By Gary Bourlet. 

Services Fit For Purpose

Gary Bourlet, Co-Founder of Learning Disability England

Services should be fit for purpose in every Local Authority across England; we shouldn’t have certain areas falling behind in this day and age!

I did a role that was like a quality checker when I lived in Swindon, and checked services in Gloucestershire.

You find out what’s good and what’s not working and just put down your findings. It’s all about research.

It is important that people with learning disabilities and family members do this. It’s important that they play a part in making sure these services are of a high standard and give people the support they really want.

Services must be fit for the 21^st Century.  They need to support people to have homes, jobs and relationships and everything else that life offers.

There is a lot that needs to be done. 

All services in England need to be checked to make sure they are top standard.  It shouldn’t matter where you live – you should be able to expect a high quality service wherever you are.

The Care Quality Commission (CQC) should listen to people and families. They should be led by People who use services and their families, because they will have the knowledge of what is expected from people who use these services.

There are already Experts by Experience and Quality Checkers all over the country but there needs to be more of them and professionals need to really listen to them.

If it was done by providers or social workers they could be biased and will not learn anything.

Quality checkers should be independent and what they find out should be shared with the public. This will be more than just tick boxes and the public will have the right to know.

These reports should be easy to find – anyone should be able to find them and look at them. They need to be accessible with no jargon.  

Quality checking needs to go beyond public services, we need to look at all services that people with learning disabilities and their families use. We must look at Charity and Private services and the effects they have on the lives of people who use them.

A great service is a service that is designed for people with learning disabilities and also designed by people with learning disabilities.

People with learning disabilities deserve the best.

By Gary Bourlet

Gary's Speech from Learning Disability Today

This year at Learning Disability Today LDE Co-Founder Gary Bourlet was asked to speak about Winterbourne 5 Years On and the Transforming Care Agenda. 

Here's Gary's speech from the day. 

Gary with LDE lifetime member Simon.

Hi everyone,

I’m Gary Bourlet, Co-Founder of Learning Disability England and I’ve been a self-advocate for over 30 years.

I want to talk to you about Winterbourne View.

What we saw happening at Winterbourne View hospital was terrible – people with learning disabilities were being abused.

When we watched the Panorama programme we all thought two things: 1 - this should never have happened in the first place and 2 – this should never be allowed to happen again.

Winterbourne View was so horrific that the abuse of people with learning disabilities should have stopped immediately. It should have been stamped out forever. But it wasn’t. 

Transforming Care was designed to help people with learning disabilities out of places like Winterbourne View and back into the community.

Transforming Care was supposed to give people with learning disabilities something better. It was supposed to create real change.  

What we wanted to see were people with learning disabilities being a valued part of their communities. With the opportunity to learn, work and live good, ordinary lives. 

We wanted, and still want, to see people with learning disabilities back in the community, being supported to live the lives they want, living independently.

Why? So people can become independent rather than dependant, build confidence and self-esteem in the community by making friends and also contributing to their community.

Living independently doesn’t mean doing everything by yourself, but rather having the support that they want and need.

After the Panorama programme there was Winterbourne View Concordat. The word Concordat was jargon, but it meant that there was a plan.
We thought Transforming Care would give people more freedom, more respect.

But we have not moved on properly. There was a plan and the plan looked great, but progress has been slow.

And actually, all the things we were promised after Winterbourne View are the things that we were already entitled to as human beings with human rights.

In the UN Convention on the Rights of Persons with Disabilities it is very clear that we have a right to a life. We have the right to have the same chances and rights to work as other people, have the best possible health, live in the community. Winterbourne View failed all these points.

The Human Rights Act made our rights very clear too. Again Winterbourne View failed to uphold these basic rights.

It’s clear what should be happening. But it isn’t happening because the government thinks more about value for money than it does about the lives of people like me – the lives of people with learning disabilities.

And the government isn’t even saving money. It’s ridiculous because modern-day institutions like Assessment & Treatment Units cost a lot of money to run.

People with Learning Disabilities and Families are included in Transforming Care and that’s great, but I feel this should have happened long ago.

People with learning disabilities and families are still fighting to see people with learning disabilities get out of hospitals and make sure we do not return to the past.

Still to this day we hear that professionals know best. But professionals haven’t shut down ATUs, they haven’t brought real change.

So - how do we really move forward and make sure we never have another Winterbourne View?

It’s difficult for people with learning disabilities and families to campaign alone and that’s why we need to come together alongside professionals. We are stronger and louder with one voice.

We need to employ people with learning disabilities and their families as quality checkers, to oversee services where they live so that they can advise these services in how they can do things better.

We need more Funding for help in the community like people having access to Learning disability Nurses.

We need to plan beyond people coming out of hospitals to make sure they have a good life once they get out. Even if people do get back into the community, it doesn’t stop there.

We need better benefits with less intrusive and more respectful assessments. We need more focus in supporting people to get Jobs and help with building careers.

We need to support people so that they can have a real social life because, as I always say, loneliness is a killer.

We need action now!

Because although there have been some changes since Winterbourne View, attitudes towards people with learning disabilities are still terrible.

We are still thought of as not important.

Last week was the Autumn Statement and social care wasn’t mentioned once. This was very disappointing.

To really move away from Winterbourne View we need to change people’s attitudes and come together to fight for the things that matter.

I will end this speech by encouraging you all to join Learning Disability England.

Join together with people with learning disabilities, families and professionals because we are stronger, louder, together!

Thank you.

Interview with Jackie Downer MBE

When we launched Learning Disability England we awarded lifetime memberships to 8 self-advocates who had inspired us. We've been interviewing them so you can get to know them better! 

Here's our interview with Jackie Downer MBE. Jackie is an experienced and active self-advocate who is fantastic at challenging organisations to make sure they're actually making a difference for people with learning disabilities. 

How did you become a self advocate?

I wanted to learn to be able to speak up for myself as a person with learning disabilities and also for other disabled people. I used to work at a place called Lambeth Accord where they helped me to become a self advocate and also my support worker Linnett helped me.

If you could change one thing that would make life better for people with learning disabilities, what would it be?

I would like for people to listen to us and our needs. It would be nice if people changed their attitude towards people with learning disabilities. 

What needs to happen for people with learning disabilities to have good homes?

I live by myself but I would like it if I had nicer neighbours, a carer that would come and see me and also a safer community. As I am getting older it is harder for me to get up the stairs so a house that is easily accessible would be really helpful. I think people with learning disabilities need all the above as well. 

Why do you think it’s important for people with learning disabilities, families and organisations to work together?

I think it's important because it helps to support people like me. If we work together then I will know what I need help with, what kind of care I need or don't need anymore. Working together can improve my quality of care and life. 

If you could say one thing to all of our member organisations, what would it be?

Keep people with disabilities in the know and don't exclude us.

What do you think is the biggest challenge for LDE?

Getting members.

What are your hopes for LDE? 

I hope that they listen to the members needs. I hope that they can really speak for people with learning disabilities and make a change!

What’s your advice to other self-advocates who want to speak up?

I would say to try a self advocacy group to help with getting confidence. Have good people around you that can help you when you ever feel scared. 

Tell us about a time when you’ve spoken up and something has changed. 

One time I spoke about the need of having a women’s group, so that women could support each other and maybe do things they wanted to do.  The group was started and  funded and it really helped some women with disabilities to develop their own voice and indolence.

Interview with LDE Lifetime Member Jenny Carter

When we launched Learning Disability England we awarded lifetime memberships to 8 self-advocates who had inspired us. We've been interviewing them so you can get to know them better! 

Here's our second interview with Jenny Carter. Jenny is an active self-advocate in Wirral and Director of Together All Are Able. 

One of the reasons Jenny was made a lifetime member of LDE was for her work on social media where she speaks up and uses her platform to really challenge organisations. 

How did you become a self-advocate?

I became a self advocate by doing Partners in Policymaking course.

If you could change one thing that would make life better for people with learning disabilities, what would it be? 

I would make it so that people are treated fairly have the same access to everything that others do.

What needs to happen for people with learning disabilities to have good homes?

More affordable housing and understanding landlords.

What does supported living mean to you?

It means that people have better lives and are able to create and lead their own support with the help they need.

If you could say one thing to all of our member organisations, what would it be? 

Work with and involve people with Learning Disabilities. Support self advocacy and help us to have a life.

What do you think is the biggest challenge for LDE? 

Funding, lack of access to the community support and communication.

What are your hopes for LDE? 

That we are able to lead and create our own support so we can have a good life.

What’s your advice to other self-advocates who want to speak up?

Keep speaking up, work with us and don't have a go at each other.

Tell us about a time when you’ve spoken up and something has changed.

The service model for the Wirral and Cheshire delivery hub (which is part of Transforming Care) is now being co-produced with us.

Interview with Shaun Webster MBE

When we launched Learning Disability England we awarded lifetime memberships to 8 self-advocates who had inspired us. We've been interviewing them so we can get to know them better! 

Here's our first interview with Shaun Webster MBE, International Project Worker at CHANGE. 

Shaun at Conservative Party Conference in 2014 (with Gary in the background!) 

How did you become a self-advocate?

Before I because a self-advocate I was working in another job and my friend told me that there was a job going at CHANGE. Because I live in a KeyRing network I had experience promoting KeyRing to different people. Because I had experience doing that, that helped me to get the job at CHANGE.

If you could change one thing that would make life better for people with learning disabilities, what would it be? 

Attitudes. Because some people and the media think people with learning disabilities are lazy or spongers but we’re not. We’re hard-working people and we want the opportunity to have a job like everybody else. And I think people with learning disabilities should maybe go to schools and talk about themselves – we’re just people like everybody else. We’ve got jobs, we’re living on our own, we’re part of the community. We’re human beings just like you – we’re not different. 

What needs to happen for people with learning disabilities to have good homes?

What we need is a choice of what home we get. We need to be included in deciding what kind of home we want, where we want to live – because we want to have a choice. If you’ve got different disability needs or need support then you need these things to help you live independently.

If you need support workers you need the opportunity to choose your support worker and they need to listen to you and make sure you’re included in everything. 

What does supported living mean to you?

I live in a KeyRing network. I’ve been living with KeyRing for over 15 years. At first I had a lot of support. I used to live in a flat before that – my brother used to live with me but he did everything for me. My brother wasn’t being bad; he just thought I would struggle with things. Moving to KeyRing was a big change. I wasn’t very independent and what changed that was a fantastic support worker who did an action plan for me about things I needed support on. Over time I became more confident in doing them for myself. Then I supported other people to do these things when they moved into KeyRing, like peer support.  And then the people I supported could support me too! It was a win win! 

I’m supported on my terms. When I need support I get it and when I don’t I don’t 

Why do you think it’s important for people with learning disabilities, families and organisations to work together? 

I think it’s very important to include families because I feel sometimes families get left out. Families need to know what’s happening so they can support people. But sometimes they get forgotten. 

If you could say one thing to all of our member organisations, what would it be? 

The one thing is always include people with learning disabilities. Make sure people with learning disabilities are employed and make sure they are in control. And not just that, make sure they are living independently and have control over their lives. Companies need to think about that. 

Employment and living independently are linked together. Being employed gives you power. And when people are employed and live independently they can inspire other. 

What do you think is the biggest challenge for LDE? 

There are two actually. Attitudes and money. Attitudes and funding can make it difficult for people with learning disabilities to live independently and be employed. 

What are your hopes for LDE? 

My hopes are people with learning disabilities will be able to be more a part of the community, be treated the same, be respected and to get proper paid jobs, not tokenistic jobs. 

I think schools need to take people with learning disabilities more seriously if people with learning disabilities are going to achieve decent jobs. Schools don’t ask people with learning disabilities what jobs they want. I think people like myself who have jobs could go into schools and talk about that. Be role models.

Another barrier is the media. I hope LDE can show the media that people with learning disabilities are not benefit scroungers. We want people to stop feeling sorry for us. 

 What’s your advice to other self-advocates who want to speak up?

I’m doing a project at the moment about mentoring. Mentoring is to improve people with learning disabilities’ confidence in speaking up for themselves. People should think about doing mentoring – it will give people like myself a real opportunity to speak up. It builds their confidence, self-belief, gives them a voice and helps them to be a part of the workplace.

Tell us about a time when you’ve spoken up and something has changed.

I was in London earlier this year and I had a meeting with chemists – I did a talk about having a bad experience with chemists. When I went to pick up my medication it was new and I couldn’t read the information. I asked the person at the desk to read the info for me and they said no. they were very rude to me and I had to go and see the nurse. 

I talked about at this meeting about making information more accessible for people with learning disabilities and I felt this made a difference. When I use my life experience it breaks down barriers. And then people do take notice.

Conservative Party Conference

This year representatives from Learning Disability England attended Labour and Conservative party conferences. You can read our thoughts on Labour conference here. 

We asked Gary, Sheila and Harry to talk a bit about their experiences of Conservative Party Conference. Here's what they said!

Gary Bourlet - self-advocate representative

It was good that people with Learning Disabilities and parent representatives where there. There were also two academic students who attended the conference with us.

I've been to these party political conferences before. We had good meetings with Dominic Grieve QC and Liberty - they knew all the legal stuff, especially on things like Human and Civil rights.

The down side was that when we went to fringe meetings it was hard to get a word in edge ways.

There was a lot of questions I wanted answers to, there never seemed to be enough time though, and sometimes the panel did not really take on my questions. It would have been great to have more people with learning disabilities and families at these party political conferences - it would be great to be there big in numbers.

I have already been to 1 Labour and 2 Conservative conferences in two years. In the future I would love to go to the other minority party conferences as this will give me an idea what they are saying about people with Learning Disabilities.

Sheila Moorcroft - family carer representative 

I am a family member of LDE and part of LDE’s steering group. This was my first ever party conference – I went to the Tory party conference.

The overriding impression was the sheer scale of the event: the numbers of people, the numbers of fringe events over and above the main political speeches. Annie at LDE had very kindly pointed out a few meetings that would be relevant for us to attend, and set up meetings with specific people; otherwise we would have faced a mammoth task sifting through the options. It made me realise just how difficult it must be to make your way in politics, and navigate the system. And the energy and stamina that you need.

The meeting we had with Liberty was perhaps the stand out moment. It provided an important starting point for new opportunities to work together, and potentially raise important issues such as the care, or lack of it, of people with learning difficulties in the NHS, as illustrated by the recent events at Southern Health.

I certainly think that it is important for LDE to be represented and would encourage family members and self-advocates to go to the party conferences; but those unused to networking and talking to strangers perhaps need more help and preparation. We also often found ourselves in fringe meetings talking with people who already knew and understood many of the issues facing people with Learning Difficulties; getting the message across to a wider audience is more difficult. Simply asking a single question in a meeting is not enough; it felt much more effective when we were able to talk one on one with people at the end of sessions.

Harry Hayton-Isles - student volunteer

Earlier this month I was lucky enough to attend the Tory Conference with LDE. It was a fascinating insight into a political culture I've had very little experience with and despite drawing some worrying conclusions from the experience, I highly recommend any other students to take part. The first thing that struck me is the divisions in the party on the subjects of disability and social care. There was a distinct feeling amongst representatives of local government that the cuts to services and current set of welfare assessments were failing families and people with disabilities. Even going as far as to refer to the cabinet, and other Westminster conservatives, as if they were from a different party entirely. I found this a particularly interesting representation of the under reported tensions in the party, while also presenting a far less black and white ideological image than I had imagined previously.

Having said that, this does seem to raise a bit of a paradox in that while the cuts are not supported, seemingly neither is real investment in services. Furthermore  there seemed often to be a hushed reference to privatisation as a way of solving this, something that has a track record of continually not solving these problems. But there are some real champions surrounding disability, our meetings Dominic Grieve and Ian Birrell showed this. But there still seems to be a lack of interest on a cross party basis, stopping real change from manifesting. MP's rarely turned up to the panels we attended, notably Jeremy Hunt not turning up to any.  This gave the proceedings outside of our personal meetings, a kind of hollowness that fundamentally gave the impression that whatever panel members feelings on the issues, the real decisions would be made elsewhere. This was a stark difference from the kind of engagement we found at the Labour conference from both MPs and Shadow Cabinet.

Another key difference I found was the serious lack of self-advocates, people with disabilities and families at the conference. People who should be an integral part of formulating policy and discussing issues. This lack of dialogue is something I found very worrying considering how much work is needed on the current policy presented by the party.  What is worth mentioning as well, is a great meeting we had with Liberty who seemed keen to engage with a number of issues concerning the treatment of people with learning disabilities. I thoroughly recommend any students to get involve in future as it was great opportunity, an exciting inside look on politics at it's most extravagant. Although I think Ben mentioned this, it is worth reiterating how helpful having a focus and purpose is in such a huge event.  Subsequently this also educated me on the importance of the work LDE does and I hope to get involved again.

Thanks to Annie, Alicia, Sheila, Sui-Ling, Martin, Paula, Gary and everyone at LDE. Had a great time!