What’s next for people with learning disabilities in ?

2009 – 2013

What’s next for people with learning disabilities in Lothian? 2009 – 2013

Printed and published by FAIR for NHS Lothian Copyright July 2009

FAIR Limited 95 Causewayside EH9 1QG Tel: 0131 662 1962 Fax: 0131 662 9486 Email: [email protected] Website: www.fairadvice.org.uk

A Charitable Company limited by Guarantee. Registered in No 135696. Recognised by the HMRC as a Scottish Charity No SC002280 This is booklet tells you about the Lothian Learning Disability Strategy.

The Lothian Learning Disability Strategy is a plan about what will happen by 2013 for people who are aged 16 or over.

If you would like to read the full plan you can get it from your council or NHS Lothian. Their contact details are at the end of this booklet.

The plan has been written by

• NHS Lothian • Council • City of Edinburgh Council • Council • Council

1 Why we wrote the report

We want to make sure that you get the support that you need. This may include support in your home or ways to keep you healthy.

We believe that people with learning disabilities

• should be valued • should not be picked on or treated differently from others • are individual people • should be helped and supported to do everything they are able to do • should be asked about what services they need and involved in making choices about what they want • should be able to use the same local services as everyone else • should benefit from specialist social health and educational services when these are needed • should have services which take account of their age, abilities and other needs

We know that people want to

• Be independent • Stay healthy • Make choices • Stay in touch with friends and family • Get the right help when they need it

2 This is what the plan says about Information

You should be able to understand the information that you get.

What is happening now? We are trying to make all our information easier to read and understand.

We know that some people do not understand language. We will try to find ways of getting information to them, too. We will use the People First Inclusion and Accessibility Guidelines for all our papers.

You can get a copy of the People First Inclusion and Accessibility Guidelines from People First (Scotland), tel: 0131 478 7707 or email [email protected]

What will happen by the end of 2010? You will be able to get information that is easier to understand about • health • services • how to get help

What will happen by the end of 2013? We will use short words. We will use pictures if we can. We will not use jargon. We will do information in different languages and formats. We will train our staff to help people understand information.

3 This is what the plan says about Advocacy

Every young person who is moving from children’s to adult services should have a Key Worker, Social Worker or Local Area Coordinator.

Young people should be able to get an advocate if they want one.

People who are very disabled should be able to get an advocate.

People using healthcare services should be able to get an advocate.

What is happening now? The law says that people with learning disabilities who need an advocate should be able to get one.

What will happen by the end of 2010? NHS Lothian will spend more money in each local area to try to get more advocates for people with autism, Aspergers syndrome and learning disabilities.

What will happen by the end of 2013? We are working on an advocacy plan to make sure that there is more advocacy for people with autism, Aspergers syndrome and learning disabilities.

4 This is what the plan says about Health

People with learning disabilities need more help to stay healthy. The Community Learning Disability Teams help people a lot, but we need to do more.

What is happening now? Most GPs have a list of their patients who have learning disabilities. People who have to go into hospital are getting better support. Some of our information is easy to read and understand

What will happen by the end of 2010? Local Area Co-ordination Teams will start to work with people to help them choose healthy options to lose weight, stop smoking and take more exercise.

We will help some people to keep Health Diaries for a year. We hope that this will give us information about how to help people have better health.

We will make more of our information easy to read and understand.

What will happen by the end of 2013? People with learning disabilities who need a health passport will get one. A health passport has all your health information in one place. If you give your permission the information can be shared with people in the NHS who are helping you.

5 This is what the plan says about Independent Living

We need better information so that we can help people to make choices and be independent. People with learning disabilities also need their own plan for what they want to do with their life.

What is happening now? We are working with a group of people in East and Midlothian who are hoping to move to homes of their own. We will use the information we get from them to make a big plan for the future.

Community Safety Partnerships have been set up in all local areas. Community Safety Partnerships help people feel safe in their own homes and communities.

What will happen by the end of 2010? We will try to find a way of making sure that people get the support they need to do the things they want. We need to know what people want so that we can provide the right support.

We need to make sure that people who need a house can get one. We will meet people from Housing Departments and Housing Associations in every council area to make sure that they understand what people with learning disabilities need.

What will happen by the end of 2013? Everyone who wants or needs a plan of their own will have one.

6 This is what the plan says about services for people who need extra help

Some people with learning disabilities need extra help.

These include people who • have profound and multiple learning disabilities • are older • are parents • break the law • have mental health issues • behave in ways that services find difficult to manage • are homeless • are involved in alcohol or drug abuse • have Autistic Spectrum Disorder or Aspergers Syndrome • come from black or minority ethnic communities

What is happening now? We are gathering information about people who need extra help and making plans to give them what they need. The Partnership Board will look at these plans over the next few months. The Partnership Board will tell the four councils and NHS Lothian how things could be done better.

What will happen by the end of 2010? There will be more flexible services available for people. There will be some new services set up. We will tell all the local groups what we plan to do.

7 What will happen by the end of 2013? NHS Lothian and the four councils will be working together to provide better services for people who need extra help.

People will get services that enable them to do things that are important to them.

The Partnership Board will keep an eye on services to make sure they are helping people to lead the lives they want.

8 This is what the plan says about Money

What is happening now? In 2007-08 we spent £109 million on services for people with learning disabilities.

We know that we need more money to do the things in this plan.

We have to think about how we do things now. We may have to stop doing some of these things and use the money differently.

What will happen by the end of 2010? The Partnership Board will agree a list of the most important jobs. We will try to get money to do these jobs first. We will also do some new things.

We will also try to find ways of doing new things that do not need extra money.

What will happen by the end of 2013? More than £3 million will be spent on making health services better for people with learning disabilities. We are all working hard to find ways to give people more choice and control over their services. NHS Lothian has started a project to look at ways to give people more choice and control of their healthcare. This is sometimes called self directed support. The four councils will also work on this project.

9 In 2013 we will write a new report to tell people about what we have done. We will show you that people are getting the help they need to • Be independent • Stay healthy • Make choices • Stay in touch with friends and family • Get the right help when they need it

10 Get involved We cannot change things without you. Please get involved in your local group.

Partnership Board A Partnership Board has been set up to make sure the changes happen. The Partnership Board includes people who have learning disabilities and carers. The people that attend the Partnership Board are members of the groups that meet in the local areas:

Local Groups

East Edinburgh Lothian West Lothian

Midlothian

If you are interested you can join your local group.

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Find out more about local groups from

If you live in East Lothian contact Shannon Leslie Planning and Commissioning Officer Learning Disability 9-11 Lodge St Haddington EH41 3DX Tel. 01620 827506 [email protected]

If you live in Edinburgh contact Helen Morgan Joint Programme Manager 65 Morningside Drive Edinburgh EH10 5NQ [email protected]

If you live in Midlothian contact Duncan McIntyre Joint Planning and Implementation Officer Social Work Fairfield House 8 Lothian Road Dalkeith EH22 3ZH Tel: 0131 271 3632 [email protected] 12

If you live in West Lothian contact Arthur Fulton Service Development Officer Strathbrock Partnership Centre 189a West Main Street West Lothian EH52 5LH Tel. 01506 775668 [email protected]

If you use NHS Lothian specialist services for people with Learning Disabilities contact

Rona Laskowski NHS Lothian Deaconess House 148 Pleasance Edinburgh EH8 9RS [email protected]

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Carers

We need carers too and we are keen that carers join the local groups. If you are interested you can join a carers group in your local area.

You can find out more from the local contacts listed on page 16.

14 Groups that are helping with this plan

For people with learning disabilities

ACE Advocacy, West Lothian 28 Heatherbank Ladywell Livingston EH54 6EE 01506 444 330 [email protected]

Partners In Advocacy – for East Lothian, Edinburgh and Midlothian Unit 17, John Cotton Business Centre 10 Sunnyside EDINBURGH EH7 5RA 0131 478 7723/7724 [email protected]

People First Edinburgh 77-79, Easter Rd Edinburgh EH7 5PW 0131 478 7707

People First Midlothian The John Chant Centre Eastfield Farm Road Penicuik EH26 8EZ 01968 679398 07753822706

15 For carers

Carers of East Lothian 149 North High Street Musselburgh EH21 6AN 0131 665 0135 [email protected]

Carers of West Lothian The Princess Royal Trust Carers Centre Strathbrock Partnership Centre 189a West Main Street Broxburn, EH52 5LH Tel: 01506 771750 email: [email protected]

Community Care Forum East Lothian c/o Tynepark House Poldrate Haddington EH41 4DA 01620 822212

Edinburgh Carers Scrutiny Panel c/o Enable Scotland Edinburgh Branch 95 Causewayside Edinburgh EH8 1QG

VOCAL 8-13 Johnston Terrace Edinburgh EH1 2PW 0131 622 6666 [email protected]

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VOCAL Midlothian Grannies Park, Edinburgh Road DALKEITH EH22 1JY 0131 663 6869 [email protected]

Useful websites

Care Commission www.carecommission.com Mental Welfare Commission for Scotland www.mwcscot.org.uk Office of the Public Guardian www.publicguardian.gov.uk

Copies of the full Lothian Learning Disability Strategy can be downloaded from : City of Edinburgh Council www.edinburgh.gov.uk www.eastlothian.gov.uk Midlothian Council www.midlothian.gov.uk West Lothian www.wlonline.org NHS Lothian www.nhslothian.scot.nhs.uk

For general help and advice FAIR 95 Causewayside Edinburgh EH8 1QG 0131 6621962 [email protected]

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Aby uzyskać informacje na temat tłumaczenia tego dokumentu w Państwa języku ojczystym, prosimy zadzwonić do BiuraTłumaczeń Ustnych i Pisemnych (ang. ITS) pod nr tel. 0131 242 8181 i podać numer referencyjny 09698.

You can get this document on tape, in Braille, large print and various computer formats if you ask us. Please contact ITS on 0131 242 8181 and quote Reference Number 09698. ITS can also give information on community language translations. You can get more copies of this document from the local contacts given on pages 12 and 13.