Winterbourne ViewTime for ChangePart one

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Contents

Pg 3 Foreword

Pg 11 About the Report

Pg 15 The Problem

Foreword

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After the Winterbourne ViewScandal the Governmentsaid they would move allpeople with learning disabilities and/or autism,who should not have beenplaced in hospital, intoCommunity Care by June2014.

The Government didn’t dothis and people are angryand frustrated.

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The families, individuals,health services, voluntary organisations and councilsneed to work together tomake this happen.

Simon Stevens (CEO of NHSEngland) asked me (Sir Stephen Bubb) to makea plan to make sure peoplewith learning disabilitiesand/or autism are movedout of institutions.

We need to make sure theright money and resourcesare in place in the community.

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To help people live in thecommunity and not in Institutions we need moneyto grow community services.

We need to bring aboutchange.

We want empowered people who have the rightcare and support e.g. personal budgets.

We need a strong Charter ofRights so that people withlearning disabilities and/orautism feel empowered to demandchange.

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The steering group for this report said that developingskills and a new workforce isimportant.

This money may come from a new fund called a ‘social finance fund’.

We hope that the Government and NHS England will start this fund.

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Long term care cannot bebased in institutions.

Everyone must work together to bring aboutchange.

We must close down institutions and stop badcare.

This must happen alongsidedeveloping community facilities.

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We must recognise this andclose institutions.

In 1851 a doctor calledSamuel Gridley Howe wroteabout how bad institutionsare.

He said that we should haveas few of them as possible.He said the human family isvery important.

Over the past years peoplewith learning disabilitiesand/or autism have seen little action.

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This report shows the plan for change.

The steering group will meetin 6 months time and again in 12 months time to reviewour progress.

I want to say thank you to the steering group andeveryone who has been involved in this report.

We now need urgent action to make the Winterbourne Pledge happen.

Sir Stephen Bubb

About the Report

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The report was produced by Sir Stephen Bubb after the Winterbourne View Scandal.

The report is about the planto move people with learning disabilities and/orautism out of institutions into the community with support.

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The group includedpeople with learning disabilities and their familiesmembers.

The group met with commissioners, academics,and providers.

The group said that helpwould be needed from localand central government, aswell as NHS England.

Sir Stephen was supported by a steering group of representatives from the voluntary sector, NHS England and local government.

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People are angry and frustrated that the originalpledge has not been met.

We need to act urgently but also not promise thingsthat we cannot deliver.

In the 21st Century peoplewith learning disabilitiesand/or autism should not beliving in institutions when theycan live in the community.

Change needs to be led bygovernment and the NHS –and also by empoweredpeople with learning disabilities and/or autism.

The Problem

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Some people with learningdisabilities and/or autism willsometimes need to go tohospital.

But with better support in the community, fewer people would need to go to hospital.

When people do need to go to hospital, some of them stay in institutions fortoo long.

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There are two steps:

1. We must make sure there is support in the community for people with learning disabilities and/or autism so they can be discharged from hospital quickly.

2. We must support people in the community so they are not sent away to hospital.

With the right support theycould be discharged and live closer to their families.

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People have been talkingabout these issues for a longtime, you may ask ‘why hasmore not happened’?

• It's been too hard to do the right thing.

• And too easy to do wrong thing,

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We want to make it easier todo right thing, harder to dowrong thing.

People with learning disabilities and/or autismshould not have to live in institutions. Hospitals arenot homes.

We want to empower andsupport people who wantto make change.

• We do not give enough power or support to the people who can make the change.

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We want to make it easier to do the right thing.

Please read Part Two to findout what we want to do.

This easy read document was produced by CHANGEwww.changepepeople.org

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Winterbourne ViewTime for ChangePart two - What We Want to Do

Contents

Pg 3 What We Want to DoRecommendations

Pg 4 a) Strengthening Rights

Pg 10 b) BetterCommissioning

Pg 13 c) ClosingInstitutions

Pg 16 d) StrongerCommunity

Pg 19 e) Holding Peopleto Account

What We Want to DoRecommendations

The Government should create a Charter of Rights for people with learning disabilities and/orautism.

a) Strengthening Rights

• Charter of Rights

People with learning disabilities and/or autismoften feel powerless.

People with learning disabilities and/or autismmight not understand theirrights. Sometimes their rightsare ignored.

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Commissioners will have tomake sure they follow theCharter of Rights and thatthese rights are respectedwhen they choose whatservices to fund.

The Charter of Rights will clearly show the rights thatpeople with learning disabilities and/or autism already have.

• Better treatment in the Criminal Justice System

People with learning disabilities face problems inthe criminal justice system.

It will also tell people about the support they can use to access their rights.

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The government needs tomake sure that the rights ofpeople with learning disabilities and/or autism arerespected in the Criminal Justice System.

• The right to challenge decisions

People with learning disabilities and/or autismand their families should beable to challenge a decision to admit them tohospital, or to keep themthere.

Some people with disabilities may not feel able to challenge decisionsabout their care.

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Community-based providersshould be given a right topropose different options tocare in a hospital.

• Personal budgets

More people with disabilitiesshould have the right to personal health budgetsand the support to managethem.

This should include:

• People in hospitals or people who may be admitted to hospital.

Commissioners should alsotake responsibility for reviewing treatment andshould be able to challengeadmission to hospital.

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• People with learning disabilities and mental health needs.

• Children and young people with learning disabilities and/or autism.

• Protecting peoples’ homes

Some people with learningdisabilities and/or autism who go into hospital are not able to keep their homes while they are away.

This can be very distressingfor the person.

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This also means that they will have to find a newhome before they cancome out of hospital.

The government shouldfind ways of protecting thehomes of people withlearning disabilities and/orautism who are admittedto hospital.

This means they can goback to the same homewhen they are discharged,if they wish to.

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b) Better Commissioning

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The Government and NHSEngland should make alllocal commissioners plan how to fund services in the same way.

Commissioning means spending money on services.

Local commissioners shouldcome together, share theirfunding and work together to improve community services.

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There should be a lead commissioner in each areaworking with people withlearning disabilities.

Community based providersshould give options to peoplewith learning disabilities who are in an institution, to helpthem come out of institutions.

Commissioners will have tomake sure they follow theCharter of Rights and thatthese rights are respectedwhen they choose whatservices to fund.

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• Choose services that make information accessible and adaptable for different needs.

Commissioners should:

• Work together with people with learning disabilities and/or autism to make plans for services.

• Support independent advocacy services for people with learning disabilities.

• Offer personal health budgets.

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• Make sure that people with learning disabilities and/or autism know their rights and how to access support.

People with learning disabilities, their families and carers must hold commissioners accountablefor providing quality services.

People with learning disabilities and/or autismshould be employed in thehealth and social care system.

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• Provide support and options for people with disabilities to come out of institutions.

c) Closing Down Institutions

People with learning disabilities and/or autism, self-advocacy groups, families, and carers agreethat we need a plan to closedown some, if not all, institutions.

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But people disagree on howfast this plan can be put inplace and which institutionsshould be shut.

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In the plan for closing downthe institutions, we need to make sure that we do noharm.

People with learning disabilities and their familiesshould take part in the planning.

NHS England should set aclear timeline for closing institutions.

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We need to have high-quality, community-basedsupport so that the institutions can be shut.

The Care Quality Commission (CQC) mustget tough on registering institutions.

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d) Stronger Community

Our plans rest on more high-quality community-based support services.

We need to develop theskills and expertise in the workforce.

This means care assistants, family carers, doctors and nurses, and commissioners.

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The Academy’s job wouldbe to spread their expertiseand knowledge of goodpractice across the workforce.

This will be called a social investment fund.

Money will be needed tohelp move people back into the community from institutions.

Health Education England,Skills for Health and partnersshould develop a NationalWorkforce Academy.

People with learning disabilities and/or autismshould be employed in theAcademy.

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Money should be put intothe fund from the Government and/or NHS England.

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Commissioners should haveto explain to the public whythings have gone wrong ifthe plan does not work.

Information should be collected and then published locally and nationally.

How well the plan is working should be madepublic and accessible sothat everyone can see.

e) Holding Commissionersto Account

This easy read document was produced by CHANGEwww.changepepeople.org