Learning Disability Partnership Boards

Now & In The Future Report July 2013

Written by: Inclusion North 2013

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What is this report? This report is about Learning Disability Partnership Boards. Some Boards have a different name but still focus on making sure people with learning disabilities lead a good life. They include people, families and different professionals who want to help make that happen. In this report we have included any group that works like that when we talk about Learning Disability Partnership Boards. The Association of Directors of Social Services asked Inclusion North to do a small piece of work to find out

How Partnership Boards are working in the North East

How Partnership Boards are working across the country

What difference Partnership Boards have made in their area

Good ways of working for the future We did this by

Asking people who lead or organise Partnership Boards to fill in a survey about how the board works in their area

Asking family who are linked to Partnership Boards or the North East Families network to fill in a survey on their experiences and ideas

Doing a session with the North East forum of people with Learning Disabilities

Phone interviews with some professionals and families

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The Big Messages to think about for the future Everyone who was involved in this said they wanted some way for professionals and people with learning disabilities and their families to work together to plan and check on how services are helping people with Learning Disabilities live a good life. Most people think that Partnerships Boards have changed or need to change because everything around them has changed and money has to be used differently. There is a chance to build on the good ways of working from Partnership Boards and link that into new structures as health and social care change. This does mean that Boards will have to understand what money is available for their work and services – they could be part of deciding what is important but have to know what is possible with the resources. In planning for the future there are some important points to think about:

Any inclusive influence or decision making group should

have a clear role and understand where it fits in local structures – the legal ones and community groups

Joint working needs to be Outcome focused – make a real difference to people’s lives

The best examples of joint working include real Partnership & Respect between people with learning disabilities, families and professionals.

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Joint working can help check, challenge and support local work on - Important plans like Winterbourne View - Self - assessments like the joint health and social care

or Autism assessments. - How community services like transport work

This can make a big difference to services supporting people better.

Sharing Information about work that affects the group is important to making it work and building trust.

There are some opportunities for Joint Working on issues that affect different older or vulnerable people but this must be done in a way that keeps a strong voice and involvement of people with learning disabilities. This could include working with other areas on shared issues.

What is happening across the rest of the country and in policies The Valuing People Paper first asked areas to set up Learning Disability Partnership Boards in 2001 Valuing People Now (2009) said Partnership Boards are still important in making the big changes with people with Learning Disabilities. We asked people who work with Councils or are part of Valuing People networks if Partnership Boards still exist in other parts of the country. There is no official report by the government at the moment but we found out

In most other regions Partnership Boards still exist but they now work in different ways.

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All the areas in the North West, West Midlands and South West still have Partnership Boards

In 2012 122 out of 154 (79%) Partnership Boards sent in a Partnership Board report in their work. More Partnership Boards might still be working but did not send in a report.

Lots of the new laws and policies ask Councils and NHS organisations to make sure people who use services and their families help them to plan and check on services. They also ask that people are involved making decisions about their own care. The Winterbourne View final report on that review and the big agreement (concordat) says it is important to involve people with Learning Disabilities and their families in making the targets happen:

Commissioners should show how they have involved people and their families in planning and buying the right local services1

People and families have an important role to play in challenging local agencies on how they are doing in making services better2

Healthwatch England will work on how local Healthwatch can involve people with Learning Disabilities and their families including working with Learning Disability Partnership Boards3

The Winterbourne View reports and agreement have targets for making things better for Children, young people and adults with learning disabilities or autism and who have mental health conditions or behaviour that challenges. The reports also say the big changes to how services work should include all people with Learning Disabilities

1 DH Transforming Care 2012 P.28 section 4.27

2 DH Transforming Care 2012 P.28 section 2.27

3 DH Winterbourne View Programme of action Concordat P.13

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What is happening now in the North East We asked questions about

- If there is a Learning Disability Partnership Board in each area and how it works

- If there is another Board or group that includes more people and how it works

A snap shot of what people told us about Learning Disability Partnership Boards now: 10 of the 12 areas have a Learning Disability Partnership Board They set out to:

Help people with learning disabilities and their families have a say or influence on local plans or services

Promote rights and values of inclusion and community life

Make services better or give people with learning disabilities more control

Share information on what is happening locally and nationally

Work together on solving problems or making changes 57% of families who replied thought the Partnership Board made a real difference to people’s lives. Officers from 80% of the Boards think there is evidence of the Board making a difference People with Learning Disabilities thought their Partnership Board had made a difference by:

sharing ideas and information – locally and from other areas

tackling issues like Hate Crime, making community more accessible, changing health services or improving quality

helping services understanding what people really want

finding out about new ways of working or helping decide what is needed locally

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Family members and Lead Officers told us that some Boards had made a difference by:

Creating quality standards and customer charter for providers that are now used in how services are bought and checked

Looking at new ways of working with community services so people get good support as social care budgets get smaller

Being part of working out new ways for people to get housing and the new way meaning some people have moved

Working with GPs to understand how the practice can help tackle Hate Crime and influencing how Health checks happen including making resources

Getting health professionals and others to improve eye care and access to opticians

Making reasonable adjustments in dentist services

Influencing commissioning or service plans including the plans after the Winterbourne View review

They said some Boards had influenced local or national policy by:

- Responding to national consultations on issues such as the Challenging Behaviour guidelines by NICE or Adult Social Care standards or changes in the law

- Giving feedback for the Local Account 2 areas said that the Learning Disability Partnership Board ways of working is seen as an example for other parts of Social Care to follow locally 8 of the 10 Learning Disability Partnership Boards are linked to their local Health and Well Being Board

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Most Boards have 20 – 30 members which include: 1 Board is now called a network and the local Healthwatch support and organise the work. The rest are organised by someone in the Council. How each Board works in detail is different and no one model existed – most of the Boards are similar but different in some of the ways they work. There is a section at the end of this report that tells you more about how the Boards work now

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Where there is no Learning Disability Partnership Board

1 area has not had a Learning Disability Partnership Board for 2 years They are now setting up a new way to involve and work together with people with learning disabilities and their families The group will be linked to commissioning and the local self-advocates and provider forum One family members from that area said “I would be more than happy to voluntarily attend and input on behalf of myself and others” 1 area has started supporting a disability alliance. The aim is to

work on issues that all disabled people face so people are a stronger voice together

help new partnerships start as different groups meet together

be the main group or network of disabled people and their families who can help or influence the Health and Well Being Board and local policy.

How this group will work is still being worked out in detail. The group is linked to the Health and Well Being Board.

There will be sub groups focused on some issues just for people with Learning Disabilities

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What people said is working well or has worked well in the past? Focused on what really matters and action When Boards focus on what is important to the members and do something about it people value it more and stay involved and active. People with Learning Disabilities and family members said they want to see the difference they have made by working together The ‘right’ people involved Members of the Board being connected to other people is important. This includes leaders or well-connected people from self-advocate or family groups as well as senior professionals or Councillors. The people involved need to want to work together Sharing information and updates Boards that have good ways of sharing information with other people locally about their work or big issues make more of a difference and keep everyone involved because they feel proud Having a place in the local structures Boards that have links with the people or groups that represent local people or the ones that make the big decisions are more likely to make a difference. The links are more powerful and useful to everyone if the Board is included in the process of decision making locally Treating people with respect as partners When people with Learning Disabilities and family members are treated as equal partners the Board works better and has more impact. This includes people having good information and support but also how everyone behaves.

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What people said is not working well or hasn’t in the past National or regional issues taking over Some boards have felt like national or regional targets like the health self-assessment have stopped them working on important local issues Not working in real partnership Lots of people said they thought that the Board is or can be tokenism where people and families are not really listened to or treated as equal partners. Some people think Boards have not involved or communicated with enough local people. Not knowing where the Board sits in the decision making structures People with Learning Disabilities and family members especially said that they found it confusing when they are not clear on what influence or links the Board has. The Board not making decisions or having actions If the Board does not do anything then everyone involved start to feel like it is a waste of time. The action does not have to be big for everyone to feel like it is worth it but there does need to be some impact of people working together Not knowing what is happening at the Board People with learning Disabilities and families said Boards have not worked well when they do not have a clear plan or agenda or when the information is not shared with local people who do not go to the meetings

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Some ideas on what works Be clearer on the ‘rules’ so there is no confusion about what you are there to do Look at the big picture and include what is most important to do something about in your area Be linked to the people who make decisions about money and policy in the area – make sure they know how decisions they make might affect people with learning disabilities Share ideas and experiences with people, families and staff Make sure any work has an action – even if it is a small thing or a big piece of work Make it clear how the Board has changed something or made a difference – feedback to people Make sure the Board checks on its own work and what difference it has made – have a plan and review it. Make sure more people, families, providers and community groups know about what is important or how you can help them

What will happen with this report This report will be sent to the Association of Directors of Social Services (ADASS) They will share it with people with learning disabilities, family members and professionals. Local areas can decide how they want to use the ideas in this report to build on the good ways of working so far Inclusion North can help think about the ideas more

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What else we found out about Learning Disability Partnership Boards Core membership of the Board How often the Board meets

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Who supports & coordinates the Board Is the Board under review?

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Who was involved in this piece of work from the North East?

Who they were How many What areas they represent

People with Learning Disabilities who attend the regional forum

25 people 6 areas

Staff we organise or support Partnership Boards or involvement groups

12 people filled in the questionnaire 4 phone interviews 2 lots of extra evidence

All 12 Local Authorities in the North East

Family members of people with Learning Disabilities

24 people filled in the questionnaire 2 phone interviews

6 areas