Let's Talk About Money

10:30-15:00, Friday 7^th April

Lecture Theatre 3, Geoffrey Manton building, Manchester Metropolitan University

On 7th April, MetroPolis, Manchester Met’s new research-led think tank, and Learning Disability England will be bringing together self-advocates, family members and organisations to think and talk about money.

The United Nations Convention on the Rights of Persons with Disabilities says that governments should make sure that disabled citizens have enough money to access healthcare, homes and jobs, allowing them to be full members of their communities.

In 2009, the UK government signed up to this Convention. Their “ambition is to remove barriers to create opportunities for disabled people to fulfil their potential and be fully participating members of society.”[1]

After meeting over 200 individuals, MPs, activists and academics in October 2015, the United Nations inquiry team reported that the Austerity measures brought in by the Coalition Government had violated the human rights of disabled people within the UK[2].

“It's important for us to talk about money and people with learning disabilities because money is what you need to have a stable life. Money makes the world go round. I hope that people will join us on 7th April and together we can start to make change for the better.”

- Gary Bourlet, Co-Founder of Learning Disability England, and speaker at the event.

Other speakers include:

Neil Crowther, independent expert on equality and human rights with a particular interest in working to secure the rights of disabled people. Neil provides bespoke services to a wide range of clients in the UK and internationally.

Professor Katherine Runswick-Cole, Professor of Critical Disability Studies & Psychology. Katherine’s research has focused on the lives of disabled children, young people, their families and allies, and more recently her work has focused on the lives of people labelled with learning disabilities in a time of austerity.

This event will discuss what the report said and find out what the experiences of people with learning disabilities are.

 The event will also address:

• Whether there is enough money for people to live good lives in their communities and to take part as equal citizens.
• And whether LDE’s members with learning disabilities are having funding cut to for the help they need, including benefits, housing and speaking up.

The event will be used to create a response to the UK government, on the UN report, and their reaction to this.

This event is for self-advocates and people from organisations, with half the spaces reserved for people with learning disabilities and family members.

To book a place, please e-mail Mariana Ortiz (mariana.ortiz@LDEngland.org.uk).

Should you have any other questions regarding the event, please do not hesitate to contact mcrmetropolis@mmu.ac.uk.

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[1] https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/345120/uk-initial-report.pdf

[2] https://www.theguardian.com/business/2016/nov/07/uk-austerity-policies-amount-to-violations-of-disable

We haven't learned from the past: Gary Bourlet on #UnderLockAndKey

LDE Co-Founder Gary Bourlet

Last night there was a programme on Channel 4 about St Andrews Hospital. It's called Under Lock And Key.

If you haven't seen it you can watch it here. It's awful to watch, but very important to watch. 

Here, Learning Disability England's Co-Founder Gary Bourlet shares his thoughts on places like St Andrews.

________

Institutions like St Andrews are inhumane, socially unacceptable and show the lack of respect there is for people with learning disabilities. These places are like prisons. People with learning disabilities are being sent to them not because they’ve committed a crime, but because of their disability. They’re hidden away from the public like in the 19^th and 20^th centuries. They are robbed of their choice and their power.

In hospitals like St Andrews, your entire life is limited. You’re told what you can and can’t do. You’re told where to live, you don’t control your own money, you’re not allowed to take risks. Risks are important and people with learning disabilities should be supported to take them like anyone else.

The effect of being in places like St Andrews is damaging. It doesn’t just affect people with learning disabilities – it affects their families and the people around them. They’ve been punished as well.

We haven’t learned from the past – we’ve known for ages that institutions have cut people off from their families, they’ve been places of abuse and have left people with learning disabilities living in fear. Institutions should have been shut down by now, especially when you’ve had self-advocates like Mabel Cooper campaigning for a long time, talking about their experiences of what these places are like.

The fact that places like St Andrews have not been shut down shows that somebody’s not listening. Nobody’s listening. The fact that these places still exist shows that the medical profession still thinks that they know best. Professionals and politicians think that institutions like St Andrews are the cheaper option, but they aren’t. They cost a fortune and it’s money badly spent.

I’m inspired by Mabel Cooper, who has talked about her experiences of an institution and was the person who got to press the button to demolish it. We need to do this for all institutions. They need to go.

Instead of locking people up we need to provide care for people with learning disabilities in the community. We need to make sure that people have got the services they need where they are, so they don’t have to be moved. People with learning disabilities should have choices. They should be able to choose where to live and who to live with. They shouldn’t be segregated from the rest of the community. For people without learning disabilities who haven’t been in institutions, it seems obvious that relationships are an important part of their lives. So why are people with learning disabilities not supported to build friendships and relationships? Institutions cut you off from other people.

It’s not good enough to close the hospitals down and pretend they never happened. We need to be witnesses to what happened in these places. We also need to make sure that people have the support they need when they leave hospitals, including emotional support. They should have counselling to help them heal from their horrific experiences.

There needs to be memorials for people who have died in these places. There should be a museum about the horrific times that people have had so it’s not forgotten about. 

By Gary Bourlet

Under Lock and Key: Dispatches - Statement from Learning Disability England

Learning Disability England is appalled at the conditions at St Andrews Hospital that were shown in the Dispatches documentary Under Lock and Key, but sadly not surprised.  Our thoughts are with the people and families who have suffered and continue to suffer because of the poor care at St Andrews Hospital.

We don’t believe that institutions like St Andrews should be operating as part of a modern health and social care system for people with learning disabilities and have long been advocating the development of good housing and support in people’s communities.

We ask NHS England to urgently review all patients that they fund at St Andrews with the aim of moving them to alternative services as quickly as possible. 

We ask the Care Quality Commission to carry out an urgent review of their hospital inspection system for learning disability hospitals and ensure that those currently receiving services at St Andrews Hospital are safe.

We want to see the government carry out a full review of how St Andrews Hospital has been able to continue to operate despite government and NHS England commitment and investment into community services.  The findings of such a review should be published in full. 

We want a review of all Learning Disability provision in places like St Andrews.  This is what happened following the dreadful abuse at Winterbourne View when 150 places were inspected. We want to know what has changed since then and what impact the Transforming Care agenda has had in terms of ensuring that people are supported appropriately in the community.

Gary Bourlet, Co-Founder of LDE says:

“Institutions like St Andrews are inhumane, socially unacceptable and show the lack of respect there is for people with learning disabilities. These places are like prisons. People with learning disabilities are being sent to them not because they’ve committed a crime, but because of their disability. They’re hidden away from the public like in the 19^th and 20^th centuries. They are robbed of their choice and their power. The effect of being in places like St Andrews is damaging. It doesn’t just affect people with learning disabilities – it affects their families and the people around them. They’ve been punished as well.

The fact that places like St Andrews have not been shut down shows that somebody’s not listening. Nobody’s listening. The fact that these places still exist shows that the medical profession still thinks that they know best.”

Sheila Moorcroft, a member of LDE’s steering group and a parent of a young man with a learning disability says:

“As the parent of a young man with autism and moderate learning difficulties, my heart goes out to any family whose child is ‘consigned’, (and that feels like the appropriate word), to such an institution. Many people with autism and learning difficulties successfully lead active lives in the community.  Yes, they need a lot of care and support; yes, it costs money. But as with so many of the debates about the NHS, money and inappropriate use of beds, I would lay odds on good care in the community being far cheaper, not to mention far better for the person, in the long run. I would simply ask: would those commissioners who send these vulnerable adults to such a place, to be treated like that, be willing to send their own family member?  If the answer is no, then no one else should have to endure it either.  If the answer is yes, I am worried for all of us.”

Peter Kinsey, CEO of CMG says:

“There is a great deal of expertise within organisations that provide community support and the vast majority of people in hospitals can live successfully in their communities with the right support.”

Alicia Wood, CEO of LDE says:

“We have had recent concerns about the services at St Andrews Hospital for people with learning disabilities and have offered to gather members with expertise to speak with the St Andrews management team and board about the problems we have seen and heard from our members. They declined our offer of advice and support. This demonstrates an organisation that is in no way ready to reflect on what they do and operate transparently, let alone provide effective assessment and treatment to people who are in crisis. Spending vast amounts of public money on poor services where people who need help are abused and neglected is shameful.”

Support for people concerned following the screening of 'Under Lock and Key'

Respond is one of Learning Disability England’s members.  They work with children and adults with learning disabilities who have experienced abuse or trauma, as well as those who have abused others. The Respond support line is open 10.00am to 4.00pm on Thursdays during March.  Outside of these times, please see this document from LDE member the Challenging Behaviour Foundation. 

LDE is recruiting in Canterbury!

EDIT: the deadline for applications has now passed. Thanks to all those who applied! 

We're excited to announce that LDE is recruiting in Canterbury, Kent. 

Learning Disability England is looking for an organized, proactive and friendly Personal Assistant to support our Co-Founder in his unique and exciting role. You will be joining a small and supportive team in a new and rapidly growing charity. The successful candidate for this role will have a keen interest in social justice and human rights, and a willingness to learn about the issues affecting people with learning disabilities.

Learning Disability England is a membership organization and charity that brings together people with learning disabilities, family members, friends and professionals to create a strong, loud voice on the things that matter. LDE’s Co-Founder is a self-advocate with a learning disability who has been fighting for the rights of people with learning disabilities for over 30 years.

The key duties of the Personal Assistant to LDE’s Co-Founder include:

• To support the Co-Founder with his day-to-day tasks. 
• Drafting communications including newsletters, blogs and articles for a range of publications from LDE’s own blog to national news outlets.
• Design and implement systems which support the day-to-day duties of the Co-Founder.

The position is based in a relaxed and modern collaborative working space in Canterbury.

To apply for this position please email mariana.ortiz@LDEngland.org.uk to request an application pack. 

Interviews will be held in the week commencing 20^th March.

Hours: Annualised hours are 936 per year, to be worked flexibly but usually falling Tues-Thurs (18 hours a week).

Salary: £8.25 per hour (£16,087 pro-rata of full-time equivalent)

Closing Date: 5pm, 15^th March 2017 

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.