1

National Forum Minutes8th and 9th December 2010

Holiday Inn, Telford

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Day 1f

Welcome and Introduction

Michael and Amanda welcomed everyone.

New member:

Paul Uttley from the West Midlands.

Apologies

•  Alex.

Minutes of last meeting

The minutes were agreed as a true record.

There were no matters arising.

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National Programme Board

Report from Michael and Amanda of the meetings on 16th September and 8th November 2010.

16th September 2010 Meeting

Michael and Amanda told the Board why it was

important that the Forum should continue.

They have sent a letter to Paul Burstow. This had

been written by Siraaj Nadat from the West

Midlands.

David Behan asked the Forum for a plan as to how

the work could continue but on less money.

The Valuing People Now Annual Report is due out

on 8th December. This will be available on the

Valuing People website.

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National Programme Board

8th November 2010

At this meeting the NHS White Paper was discussed.

Michael and Amanda told the Board that the Forum would have liked to set up a group to comment on the proposals, but they had not been given enough time to do this.

Hannah Rutter gave an update on the Department of Health’s response to the Ombudsman report on “Six Lives”.

She said that the Department had learnt important lessons.

Hannah said there have been some improvements but there is still lots to do.

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Forum’s Discussion on HealthWe heard that today there will be an announcement by Andrew Lamsley, the Minister of Health.

He will say that the Government are going to run GP consortia in pilot areas.

The Forum has had a reply from Paul Burstow.

He thanked the Forum for all its work.

He said how important it was that the Government listens to the views of people with learning disabilities.

It is too early to say what will happen to the Forum after April 2011.

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Health Discussion- Regional Feedback

South East

Dawn said that in the South East they had been told that it was really important that people with learning disabilities should be on Health and Wellbeing Boards.

They are making sure they are in contact with their Primary Care Trust (PCT).

North West

In the Region the Health and Equality Group links with Primary Care Trusts (PCTs). They are hoping to include GPs. They have a specialist trainer on the group.

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Health DiscussionRegional Feedback

South West

They held a meeting about health in July.

There is a new website about easy read health care information: www.apictureofhealth.southwest.nhs.uk

It is for doctors and other medical staff across the South West of England.

It provides Easy Read information to people with learning disabilities.

In hospitals they use a traffic light system to alert staff to the needs of people with learning disabilities.

In Devon their “parliament” is talking about health.

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Health Discussion-Regional Feedback

North East

They have been doing training in each GP surgery in Rotherham. It is called “I’m a person too.”

Health facilitators work closely with GPs. But they don’t know if their jobs will be staying.

Eastern Region

They are not involved in training.

They also have been given little information about the Consortia.

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Health discussion-regional feedback

London

Pat said their forum had no information about the new Consortia.

West Midlands

In Worcestershire there are 3 draft GP Consortia. They hope to meet them early next year.

East Midlands

They are involved with training.

Ian felt all new GP groups should include someone with learning disability.

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PersonalisationDave Norman and Phil Parkin gave a presentation about personalisation.

This is about people having control over their own support.

There are lots of stories from people on the National Forum website.

We then played a board game about personalisation. This involved a discussion about people’s problems with support.

- Group Feedback

• Your life should not be in someone else’s hands.

• We are in charge of our own life and should have good support.

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Personalisation- Group Feedback

• We need the right advocacy support.

• Families should be aware of personal budgets and have the right attitude.

• We need more information.

• We need to make sure we are listened too.

• You need a good support plan to make personal budgets work.

• You need time to write a good support plan.

• There are agencies other than care managers that can help you, e.g. Brokers.

• Some people stopped using their individual budgets to go to their advocacy group as this is not a public service.

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Personalisation - Flick Pennal – National Valuing

Families Forum

The National Valuing Families Forum is organised like the National Forum.

The Families Forum works with:

• Carers UK• Princess Royal Trust for Carers• Standing Commission for Carers

Flick explained what a family carer is.

It can be a wife, husband, brother, sister or even a neighbour that provides unpaid support.

It is often thought family carers are women, but they are just be as likely to be men.

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Personalisation - Flick Pennal

• The National Valuing Family Forum think that personal budgets are a very good thing if managed well.

• It takes a lot of people to make a personal budget work.

• We hear of people lives changing for the better when they use their personal budget well.

• We hear of people doing inspirational things with their lives.

• We hear of people getting support from new friends.

• We hear of people willing to share their knowledge and information.

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Personalisation - Flick Pennal

What will make a difference?

• People need to focus on what changes people want to make and not just think about money issues.

• Making sure that everyone hears the right messages.

• Everyone knowing what is important to people with learning disabilities.

• People having the right support to develop their own natural circle of support .

• Strengthening family advocacy by making sure it is effective at every stage.

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Transport

Nigel Dochen, Equality and Accessibility Officer and

Denise Appleton, Project Lead for travel training

from Department of Transport introduced Karen Flynn

and Lila Bennett from Transform CIC.

They have worked with Mersey Travel.

Mersey Travel did some research to find out what

stops people with learning disabilities from using

public transport.

It is important that people with learning

disabilities learn to use public transport on their

own.

This leads to greater independence for people.

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Transport

They have given training to parents, support

workers, education staff etc.

This training leads to a Level 2 qualification in

Travel Training.

We then played a quiz about transport using

interactive handsets.

They use this quiz in lots of places including

schools.

It really allows people to gain independence.

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Transport – questions

• How are the cuts going to affect transport?

Changes to transport may be subject to an Equality Impact Assessment. This shows what effect any changes will have for disabled people.

• Will new franchises for rail travel consider the needs of people with disabilities in the design of stations?

Yes they will do.

• How many bikes can go on the train in wheel chair space?

Nigel said wheelchairs have priority.

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Transport – questions

• Will there still be disabled train passes for disabled people?

Yes there will. There will also still be national bus passes.

• Have you employed anyone with learning disability in the Department?

There is a diversity policy in place and people with learning disabilities have been employed.

•Is their a law about rural bus services?

There is an Act around community transport. The Department is looking at alternative forms of transport.

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Government Cuts to Social Care

-Gavin Harding reported:

• £1 billion will be given to the Department of

Health. But this will not be until 2014 to 2018. It will be introduced over 4 years.

• In the first 2 years there will be cuts to social care of about 28%. But this will vary between councils.

• Supporting People gives help to people in their own homes. They will be given £6.5 billion over the next 4 years.But, each local authority will have to make cuts of 12% to their budgets.

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Government Cuts to Social Care

-Learning Disability Programme after March 2011

• Valuing People leads have been given notice

their

jobs will end.

• Their budgets will go to places like Inclusion

North and North West Development and Training.

• There will be a priority on housing, health and

employment.

• Personalisation will be the biggest priority.

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Government Cuts to Social Care-National Forum needs to campaign about:

• People with learning disabilities are being left

• without care.

• People will be left to rely on Telecare.

• People with learning disabilities will be left

• isolated and open to “mate crime”.

• Private healthcare organisations are opening up

residential homes across the country.

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Announcements:

Gavin has been nominated for an award for his

advocacy work.

Richard Blake received an award today for all his

work. He received £1000 and got £10,000 for a

charity of his choice.

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Day 2 Feedback from 4 sub-groups

Advocacy

• The group have been working on a Staying

Strong Guide.

• Today they have been working on the final

sections of the booklet.

• After the weekend it will be going to Inclusion

North and Liz Brooks for final checking.

• It should be ready to go out to advocacy groups

early in the new year.

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Feedback from 4 Sub-groups

Community Lives Group

• They talked about personal budget packs and

how to make the most of your personal budget.

• The group are going to ask TASC (Transforming

social care) to look at their work.

• They are going to share good stories.

• The group want to take forward the idea of the

information pack nationally. They are aware

there are local ones but they want a picture of

what is happening in the regions.

• This could be a task for the co-ordinators.

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Feedback from 4 Sub-groups

Transport• They have written a draft letter to Nigel and

Denise.

• They thanked them for their work and also raised

some points to make transport better for people

with learning disabilities.

• Amanda and Michael have signed the letter on

behalf of the team.

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Feedback from 4 sub-groups

Health

The group talked about the GP consortia and

health watch.

They want the National Forum to be involved

with Health Watch England.

Following the letter from Siraaj they want the

groups to find out about local consortia.

They would like members to speak to Learning

Disability Partnership Boards to make sure they

are prioritising health changes.

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Feedback from 4 sub-groups-Health

Actions

• Contact Health Watch

• Write to Paul Burstow

• The group want regions to make links with GPs

and offer to do training on the awareness of

needs of people with learning disabilities.

• They want details of training going on.

• They asked of the Planning Group would

consider making health the main topic for the

next Forum?

Learning disability Coalition

Barbara has been to 2 meetings of the Coalition.

The meetings were about cuts.

The Vision for Adult Social Care was published on

16th November.

The Coalition has a campaign called “Protect the Front

Line”.

The Coalition has written to the Government and had

a demonstration.

The removal of Disability living allowance will effect

58000 people.

The Learning Disability and Health Reform Grant is a

£1.3 billion grant that is not being ring fenced.

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Learning disability Coalition

- CSR

There will be a review of the money the

Government has spent.

Settlement to councils is going down 7.1%

There was a presentation at the Coalition from Jeff

Jerome. He said Personalisation will continue.

By 2013, 1 in 5 people with learning disabilities

will have a direct payment.

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ARC

Gavin gave us a presentation on ARC.

He attended local ARC meeting about “Mate

Crime”.

This fits in with the hate crime work.

Mate Crime is where someone pretends to be

someone’s friend but is actually taking advantage

of the person financially.

Gavin is worried that at this time of cuts, people

are even more vulnerable to this type of abuse.

He had a questionnaire for the members.

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TASC (Transforming Adult Social Care)Janet has been member of TASC for 2 months.

There are 15 members of the group and Janet is the only member with a learning disability.

The group are talking about Health Watch. This is going cover social care and health.

They are going to make information more accessible.

They are also working on the Personal Budget Strategy.

The group are looking for groups to help with the easy read work.

.

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Mencap ReportBerg gave us an update on Mecap. He told us about the work they are doing.

Housing• Most people with a learning disability do not chose where they live.• Many people with learning disabilities do not rent or own their own home.

Health• Mencap are campaigning for people with learning disabilities to have equal healthcare.

Hate Crime• Mencap are working with Valuing People Now to stop hate crime.

Berg’s presentation is on the website.

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Future Plans for the National Forum- Amanda and Michael reported:

• We realise that funding cuts will be made so we

have to work out how the forum will work in the

future.

• It was suggested to reduce the size of the forum

to:

- 9 representatives.

- 9 coordinators

- 2 elected co-chairs

• The meeting may also change from 2 days to 1 day.

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Future Plans for the National Forum- Amanda and Michael reported:

• It is was also proposed that we strengthen the

regions.

• This would be done by having the Planning group,

coordinator and the reps running regions.

• The planning groups will set the rules for the forum.

• The Program boards will go. This will make the

Regional Forums more important.

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Future Plans for the National Forum- Costs

• In 2010/ 2011 the budget was reduced by 20%.

• We may have to have a further 10% reduction .

Feedback from the Meeting 22nd November

• There are worries that the Forum has too much

work for just 1 day.

• Gavin suggested we have a North and a South

forum.

In our regions we talked about these ideas and how

we could work with less money.

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Future Plans -Regional Feedback

North West

• There should be one to one support at the National Forum.• All government departments should pay, not just Health and Social Care.

South West

• They did not like the idea of having a North and South Forum.

• They thought that one forum meeting for one day was a good idea.• They didn’t like the idea of one rep as this will be

too much work for one person.

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Future Plans -Regional Feedback

North East

• They thought only two reps should go to the National Forum.

Eastern Region

• They thought this would be lots of work for one rep.• We could meet at lunchtime, not in the evening.

London

• This would mean too much responsibility for one person.• How would we choose who comes to the meeting?• Will a supporter be able to support 2 people?

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Future Plans -Regional Feedback

South East

• They agreed with Amanda and Michaels proposals.

West Midlands

• They are happy with one rep going to the National Forum.

• The structure works well at the moment but we need to be realistic about what we can do in half the time.

• There will be more pressure and costs on the Regional Coordinators.

• They didn't like the idea of a North and South Forum as it will stop the sharing of Good Practice.

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Future Plans -Regional Feedback

East Midlands

• They agreed with the proposals but there should be a reserve rep as well as the elected person.

• People need to be very prepared.

• Video conferencing with web cams could be used.

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Scott Walkin Presentation

Scott told us that about Valuing People Now’s 3

top priorities.

He told us about the Partnership Annual Report.

Scott reported some of the successes in

2009/2010 and told us what challengers were

identified.

The reports from all of the regions showed

improvements in healthcare.

They also identified what is important to people

and families.

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Scott Walkin Presentation

Scott gave us a progress report on “Six Lives”.

He said that lots of work has been done, but there

are still some big problems.

He also gave us an update on housing.

All regions have a housing plan.

Scott told us that some Partnership Boards have

Employment Strategies and person centred

reviews which focus on paid employment as an

outcome.

All the regions reported good local work on issues

such as hate crime and people with complex

needs.

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Scott Walkin Presentation

- The Spending Review

• Scott told us that the councils are cutting their

spending.

• Social care is really important so the Government

are spending an extra £1 billion by 2014/15.

• There will be changes to benefits including

changes to income support and housing benefits.

• Councils and other services will have to spend

less and be more efficient.

• We have to be strong as advocates and work

together.

Scott’s presentation is on the website.

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Washing Line QuestionsWhen are we going on a demonstration to London over Disability Learning Allowance changes?

• We are part of the Learning Disability Coalition so we are involved in their campaign.

What will you do with the numbers collected on GP training, health sub-group and GP Consortia?

• This information will go to the Planning Group.

People who work less than 16 hours a week cant get access to work. They have to pay for their own transport.

Any Other Business

There was no time for Gavin’s presentation but this will be sent out to people.