The Link Spring 2013

Featuring

In the news Inspiring Images photo competition Turning Point in action The Queen’s Speech Family carers Have your say

Don’t miss

Carer’s corner: bringing up Liam People’s Parliament A helping hand from The Prince’s Trust

Welcome

I

have great pleasure in welcoming you all to the spring edition of The Link. As I am writing this the sun has finally made an appearance and the magnolia trees are starting to bloom, it’s been a long time coming!

Our first e-Link came with mixed responses as some people do not have access to computers. As this is meant to help you to get a feel for what is going on that’s no good at all. We have managed to get a great price for printing (half what it was) and we will now be doing both.

What’s in this edition?

Updates on the learning disability 3 year plan

What people have been up to in Bradford and Kent

Our second Carer’s corner from a staff member

News and views from the People’s Parliament

I have been out and about a lot recently and thoroughly enjoyed my recent visit to Kent to see the fantastic work of The Prince’s Trust. I would strongly recommend this group of brilliant young people to any services in need of a makeover. It really is fantastic work and I look forward to seeing pictures of the garden in full bloom.

You will also read about my discussions with dignitaries from Belarus. Following the Chernobyl disaster there were many young people who were born with severe learning disabilities and physical disabilities. They would now like to turn their institutions around and move forward to provide more individualised support. I will be going out there during my half term break in October to see for myself and support their thinking about what they should do next.

Lastly, can I encourage family carers to complete our family evaluation as we are really keen to understand if, and how, you want to get more involved in shaping the way we do things at Turning Point. I would love to hear from you.

Take Care,

Fiona Ritchie Managing Director, Learning Disability Services, Turning Point

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Contents In this issue

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Carer’s corner: bringing up Liam

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People’s Parliament

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A helping hand from The

Prince’s Trust

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Real lives

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Making a splash

Letters to the editor Anne says

Service spotlight Bradford - Reevy Road

Family Carers

10 On the cover One of the submissions to the Inspiring Images competition: Nicky from Wiltshire Learning Disability Services shows his train ticket to the conductor

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Have your say and Co-production

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Chernobyl Children’s Project

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Turning Point In Action Raising awareness of social care

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In the news

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Carer’s corner: bringing

Welcome back to Carer’s corner. This time w e Procurement & Facilities at Turning Point. Jaso up Liam, his son who at seven, after an MRI s Liam was born on 8 February 2002. After a long hard labour, an apparently healthy 9lb baby boy entered the world.

H

e had no apparent problems or issues until he reached six months where he failed to meet developmental milestones. Liam turned one before he sat up and was 30 months old before he took his first unaided steps. He had very little interest in toys and did not speak and at this point Liam underwent various tests including genetic testing, all of which came back negative.

At seven after an MRI scan, he was diagnosed with brain damage.

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Liam is now eleven and attends a special school where he has one to one support.

As well as learning difficulties he also has sensory, behavioural and communication issues.

Liam requires constant supervision and help with his personal care. He is unable to occupy himself and therefore demands constant attention and also displays challenging behaviour due to his ineffective communication and is on the autistic spectrum.

Liam is eleven and functions at the level of a toddler and although we love him dearly, daily

life can be exhausting and puts pressure on the family.

Despite his problems, Liam is a beautiful looking boy who at first glance shows no apparent problems and is often mistaken by strangers as a naughty boy. He has an engaging smile and on a good

As a family we have learnt to celebrate every achievement no matter how small.

Liam’s future is a constant worry and is due to start high school in September 2013.

Unlike other families, we don’t have a choice of which school Liam will attend as there is

Throughout our journey we have met some wonderful people... and learnt a lot about ourselves.

As a family we have learnt to celebrate every achievement no matter how small.

day can be funny and affectionate and loves nothing more than going on his adapted trike, swing and going swimming.

only one school that is appropriate.

Whilst other families are looking at future aspirations and universities, we will have to make the decision for

up Liam

e hear from Jason Drury who is Manager of on shares his family’s experiences of bringing can, was diagnosed with brain damage...

Liam and the choice is, either supported living or adapt the family home.

Throughout our journey we have met some wonderful people, disability groups and forever friends and learnt a lot about ourselves as people.

We often hear people say that they wouldn’t change a thing, for Liam’s sake, we would change this in a heartbeat.

Right: Liam on his adapted trike

If you, like Jason would like to share your experiences of being a carer we would love to hear from you. Please do get in touch - email LDinvolvement@turning-point.co.uk 5

People’s Parliament You may remember in the last edition of The Link we talked about the launch of Turning Point’s People’s Parliament. From Wiltshire to Warwickshire, Bradford to Bedfordshire and all across the country people with a learning disability and their support teams have been getting together for their first regional People’s Parliaments.

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ver 40 of the people we support attended in order to find out more about the Parliament and get to know each other.

In Bedfordshire they summarised the concept particularly well.

Turning Point want to make sure that all the individuals who use our services know what we do as an organisation and also what they would like us to do.

This has been given a special name; People’s Parliament.

In Warwickshire the reasons for the People’s Parliament were outlined and what Turning Point hoped to achieve.

“This is an opportunity for all our service users to have a voice and become involved in Turning Point and be supported to share

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their stories and ideas.

One service user and their support worker from today’s regional meeting will be nominated to take forward the ideas from this group to share with the national Parliament. “ Some regions used the session as a getting to know you session with fun activities and team building.

Hot Topics Many regions went onto discuss some hot topics.

Some of these were specific to one individual – for example, Val from Bradford likes to listen to Vera Lynn but doesn’t like Lady Gaga. Some issues were more widespread and came up across a number of regions. Here are a few of the hottest topics:

Wiltshire’s People’s parliament from right to left Lucy, Pauline, Geoffrey, John and Phil

Transport The limitations of shared vehicles in services were highlighted as a barrier to social inclusion and accessing the community which in turn limited 1:1 support. Having a second car would allow individuals to be more independent and go on individual activities.

In Warwickshire, individuals said they would like to be able to afford a bus pass for their support worker which would enable them to get out and about more

in the community. The carer’s pass was free but now has to be paid for.

In the last edition of The Link we heard about how people in Wiltshire had been faced with the same challenge of changing benefits and how they aimed to tackle this issue. By getting people together we have learnt this is not just a local issue, which will help to inform areas of best practice when facing a national problem to improve the lives of the people we support.

Health In Hertfordshire people expressed that they would like hospitals to be more aware of their needs.

In Warwickshire individuals shared their experience of their local hospitals. The key to a good experience was good communication between support staff and hospital staff.

The use of hospital passports with up to date information is really helpful. Their local hospitals also have an LD liaison nurse who is invaluable in communicating with and supporting the hospital staff who may have little or no experience of patients with a learning disability.

Employment People expressed their desire to have the opportunity to work.

Hertfordshire’s group said: “Work makes us feel valued and appreciated.

Work can be very rewarding

and we would like to be a valued member of the community.”

Whilst in Wiltshire the question was asked: “Why do organisations not want to help me and my friends to get work?”

These are issues we would like the National People’s Parliament to discuss and find a way forward with.

Money A desire for more money to give people more flexibility in how they live their lives was expressed. Questions were raised about differences in funding for each individual. For some people once they have paid their expenses there is very little money left to spend on other things.

One individual said, “I want to go on holiday but I can’t afford it, yet my friend went to Disneyland in Florida last year and paid for a support worker.”

Holidays The importance of holidays was discussed in many regions. Having a change of scenery and experiencing new things were valued and saving up to be able to have holidays were wide spread discussions.

Communication Conversations took place around the way we communicate with individuals who do not do so verbally.

Alternative communication methods were highlighted. Such as reading facial expressions, noises, body language, individuals pushing things away or pointing at things and taking staff’s hand to lead them to something.

The group said it would be good to hear from other services similar to theirs to see how they would ensure individuals were supported to be more involved in Turning Point.

Sharing ideas is such an important way of finding the right way forward in identifying ways of involving people who

experience communication challenges.

In Kent the group set out some rules for the group.

Going forward we will be looking for each region to do the same.

People have been getting to know each other and learn about each person individually.

The next steps will be forming an identity as a Regional Group with a common purpose.

We have had our first volunteer from Warwickshire to represent his region at the National People’s Parliament and we are hoping for more volunteers to come forward over the next few months.

This is an exciting time for Turning Point’s involvement agenda and we hope the People’s Parliament continues to be driven forward with a positive approach from staff and moves towards the goal of giving people we support a true voice.

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A helping hand from The Prince’s Trust boxes to plant our vegetables.

The guys had to plan their ideas and raise funds to make it happen.

Matthew ballard sewing the seed

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amsgate Road is a Supported Living Service in Kent.

A member of staff, Matthew Ballard, recently put forward an idea to The Prince’s Trust to see if they could support us with our garden project.

So the seed was sown.

The guys from The Prince’s Trust came to have a look at the garden and met the individuals at Ramsgate Road.

A few days later they phoned and said they had chosen to help with the garden project.

First they dug up all the earth and then between them all they made frames out of decking so that we would have

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There was lots of back breaking work and a brilliant effort by all. They even made use of the cycling park by making a potting table to fit over it. They painted the fence. They even put up our shed for us and they painted that as well. They worked really hard in sunshine and showers.

After doing a brilliant job in the garden at Ramsgate Road the Prince’s Trust organised a BBQ for all at Ramsgate Road to say thank you for inviting them to do the garden.

After the BBQ they planted some home grown vegetables for the coming year.

They all looked so smart very different from when they were covered in mud!

The following week The Prince’s Trust invited us to go to their presentation.

Richard and Paul went with staff, Matthew and Scott to give them support.

Congratulations for a job well done. A big thank you from Richard, Paul, Maria, Anna, Fred and Diane the other individuals at Ramsgate Road.

The team hard at work

They cooked loads to eat. There were burgers, sausages, and chicken.

Everyone enjoyed the feast, even Fiona enjoyed a veggie burger as she was visiting that day.

Unfortunately the day was too cold for the guys but Diane kept an eye on the procedures.

richard inspecting the clean up

g Contents n i k a M

h s a l p as Donna Frank lives in her own home in Salisbury, Wiltshire and is supported by the Wiltshire Supported Living team. This picture was taken recently at the Five Rivers Leisure Centre in Salisbury. Donna visits the leisure centre to swim twice a week.

Donna’s swimming story is quite unique and started some 12 months ago when she was encouraged to visit the leisure centre in order to promote a healthy lifestyle. Donna started by visiting the swimming pool once a week, with support. In the early days Donna was only interested in sitting in the Jacuzzi and at the edge of the pool splashing her feet. With bags of encouragement from her team they finally got Donna to enter the water; a shock at first, however Donna’s team persevered and within a couple of months Donna was completing between 1-2 lengths per session. As time has progressed, Donna has grown in confidence and now attends two swimming sessions per week and regularly swims a minimum of 12 lengths per session – now that is progress!

Now that Olympic swimmer, Rebecca Adlington has retired Donna is aware that a vacancy exists.

Watch this space!

Donna at the leisure centre swimming pool

In closing it is worth adding that for those that do not understand German, the song that Donna sings whilst conducting her 12 lengths is O Tannenbaum (O Christmas Tree) a German song. Based on a traditional folk song, it became associated with the Christmas tree by the early 20th century and sung as a Christmas carol.

If you are supported by Turning Point and would like to share your story please email: LDinvolvement@turning-point.co.uk

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Welcome

Letters to the Editor Hello,

My daughter, Juliet is 48 years old. Juliet lives at Weaver Court, Bradford a residential care home which transferred from Bradford District Care Trust to Turning Point in February 2012.

Anne says

Weaver Court is within walking distance of all local amenities with several places to eat locally and good bus routes.

Juliet loves to go shopping, especially for chocolate and for ingredients to bake buns and cakes. She often goes out for meals with a member of staff and sometimes other people Turning Point support.

Weaver Court has a big garden, with a large patio area and a gazebo. Part of it is a sensory garden.

When Weaver Court opened it offered both respite and residential care.

Juliet started to go for respite stays. At first she would not eat with everyone else. Staff used to leave platefuls of toast in her room so she could eat without anyone else around. Gradually Juliet began to join in with the other residents but it was a very traumatic time for us.

The staff at Weaver Court were wonderful in the support they gave us through this difficult process of letting our daughter go.

In 1998 we began to look for permanent accommodation for Juliet - we felt it was time for Juliet to leave home.

We had hoped that Juliet would be able to move into Weaver Court, but at that time the plan was for it to remain a respite service only. We began to give up hope of finding a suitable alternative to Weaver Court when the plans for the home changed. Weaver Court was to become a residential home. We were delighted and very relieved that Juliet could have a place.

In March 1999 she moved in to Weaver Court, just in time to celebrate her 35th birthday.

Juliet loves music, especially the visiting musicians who regularly entertain us at the home. Weaver Court organise lots of outings and activities. We have had summer fares and themed events where all staff and residents join in.

There have been lots of memorable parties including one with a presentation of Oscars to all the residents – Juliet was awarded the best ‘chocolate eater’.

Over the years there have been many changes at Weaver Court and the management team. There have been alterations to the building, changes in routines. Throughout it all Weaver Court has always had a dedicated strong staff team who ensure it’s always a happy place to live.

Anne Renard (Juliet’s mum) juliet and her mum anne

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Bradford Contents

Learning Disability Services Reevy Road Reevy Road, a large residential home in Bradford which provides support to 17 individuals with learning disabilities, regularly holds themed parties. The ideas for the parties come from the individuals, with staff supporting them to purchase decorations, fancy dress and food according to the theme. A DJ or singer usually provides entertainment, and individuals supported at Reevy Road invite their friends and family to attend.

Rachel Helliwell, Team Leader at Reevy Road says: It’s hard work coordinating it all and ensuring the smooth running of the parties as they are very popular and it can get very busy.

However, it’s really worthwhile and rewarding as the people we support love a good party and everyone makes an effort and gets into the spirit of things. A big thank you to the Reevy Road team for their efforts, which ensure the continued success of our parties.

Tony marsh who lives at reevy road

Welcoming Warwickshire Day Services In Warwickshire we are busy with all the preparations for our new day services.

We have held workshops with families, service users, staff and commissioners to find out people’s hopes and aspirations for the new services.

There will be four day opportunity bases across the county. We look forward to welcoming over 70 staff and the individuals they support to Turning Point this summer.

To find out more information about the transfer of the new Warwickshire Day Services please contact:

Stephen.lamb@turning-point.co.uk 11

Family carers Would you like to be more involved in the services we provide?

have your say

How would you like to be involved?

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upporting people with a learning disability to live the life they want to lead is at the heart of what we do. We are continually looking for ways to involve you in the services we provide, to ensure the best quality of life for individuals. We want to know what you think, what’s important to you and listen to your ideas.

By working together we can have a greater impact on the lives of the people we support.

One of the things we are thinking of setting up is a Family Carers Group, which would be similar to the People’s Parliament. We will look at the survey results to see if this looks like something you would be interested in.

If you would like to be involved, please complete the short survey, either:

By filling in in the copy enclosed in this edition and returning it to us in the self addressed envelope provided – no need for a stamp, just pop it in the post

Or online, by visiting: www.surveymonkey.com/s/ familycarersinvolvementsurvey1

Your feedback is really important to us – we would love to hear from you.

Co-production: 3 year plan We have now completed our 3 year plan. In the last edition, we talked about the Learning Disability sector’s 3 year plan, which some of you helped co-produce. The plan is now complete, and as promised, it is now available on our website.

visit: www.turning-point.co.uk Æ Learning Disability Æ Resources For more information on any of the above please contact:

LDinvolvement@turning-point.co.uk

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Fiona says We would like to thank all of the people who were involved in the development of the plan and hope we can continue working together in this way in the future. An easy read version of the plan will be available in services.

Chernobyl Children’s Project

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n March Fiona had a visit from Linda Walker, Executive Director of Chernobyl Children’s Project UK. Many adults with learning disabilities live in large institutions in Belarus. The government has realised that it would be more appropriate for people to live in the community and the Deputy Minister for Social Protection is genuinely keen to make changes.

They came to see what they could learn from

organisations like Turning Point.

After the visit Linda said: “It was really good to meet you and hear about the work of Turning Point, and the group were delighted to meet Lord Adebawole too.

The biggest message they have all taken home is that every person needs to be treated as an individual, their needs

P

Fiona and victor meet dignitories from belarus

assessed and efforts made to appropriately meet those needs.

I hope that the result of this visit will be moves towards some real improvements in the lives of people with learning disabilities and the beginning of

the process of closing the big institutions, but that is going to take a long time.”

Turning Point are looking forward to supporting the work of The Chernobyl Children’s Project in the future.

auline Quinton lives at Bouverie Avenue in Wiltshire and currently volunteers at St Pauls Church in Salisbury.

She lays tables for the Alpha supper held at the church on a Tuesday evening. Pauline is able to access the church on the bus and completes her voluntary work with some staff support. She thoroughly enjoys this work as it is household task she enjoys taking part in at home. Pauline’s confidence has grown over the weeks she has attended and has built friendships with those at the church centre and other volunteers. She has received some very positive feedback from the lady who organises her time at the church.

pauline at work laying the table

Pauline says: I like laying the tables for my voluntary work. I hope to be able to carry on with this and look for other places to do voluntary work in the future.

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Turning Point in action

Raising awareness of socia

Hote

This edition of the External Affairs update focuses on the Queen’s Speech and the new Care Bill announced.

off th

press!

that it prioritises the wellbeing of individuals

Sarah Reed Manager, External Affairs Turning Point

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n 8 May 2013 The Queens Speech formally opened the new parliamentary year. The speech sets out the Government’s Legislative Programme for the next 12 months and included 20 bills, including the Care Bill detailed below.

‘Legislation will be introduced to reform the way long term care is paid for, to ensure the elderly do not have to sell their homes to meet their care bills.’

The purpose of the Bill is to:

Modernise the previously fragmented law so

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Introduce a number of measures as recommended by the Francis report on Mid Staffordshire NHS Trust and establish Health Education England and the Health Research Agency

in their lifetime to pay for care

Prioritise wellbeing and prevent or delay care needs from developing rather than intervening at crisis point

Give people confidence that wherever they go for care they get the best care by taking immediate action to address a number of Francis inquiry findings

The Bill is intended to:

Help people better understand what care and support is on offer, plan for the future and access help Reform care and support funding by creating a cap on care costs, extend the means test threshold for financial assistance and ensure no one has to sell their home

Enshrining the right for carers in England to receive support from their local council (including a duty to meet carers eligible care needs and a new adult safeguarding framework). This is new and although provides the right to assessment does not guarantee funding will follow

Reforming care/ support funding, including a cap on care costs. This is most likely to be set at £72,000 and be applicable from 2016

Simplifying the system and creating a legislative framework that helps integrated care

Ensuring that people needing care can move between local authority areas

The main elements of the Bill are:

Modernising the law into a single, clear statute built around individuals. This is something that is needed given the current law which is spread across multiple sources documents, adding to people’s confusion

al care without fear of their support being interrupted. This point around portability is particularly welcome and aims to guarantee an individual’s care continues to be paid for by the previous local authority, until a new assessment is undertaken. In the current draft Bill, however, there is no guarantee that the outcome of the needs assessment will remain the same following the move.

This is a lobbying point for many organisations who would like to see at least a duty on

authorities to provide written explanation on any changes implemented

Providing new legal entitlement for everyone to a personal budget, which can be received as a direct payment if people wish

Clarifying how people will be protected from their care being disrupted if their care provider goes out of business (including new oversight of the providers that would be most difficult to replace if they failed).

New, national, eligibility criteria. This

In the news

is the biggest bone of contention. The majority of people agree consistency is good and therefore welcome a national approach. However, this is likely to be set at the ‘substantial’ level based on the current Fair Access to Care criteria, which would mean many people with lower level needs may see their funding reduced or even stopped altogether.

evidence to the Draft Care and Support Bill Committee back in January and the Care and Support Alliance, of which we are a member, lobbying MPs. We will continue to monitor and influence the passage of this bill where we can and will keep you posted on our activity.

Turning Point have been influencing this Bill in a number of ways, including our Chief Executive giving If you would like to get involved please do contact me on sarah.reed@turning-point.co.uk or 0207 481 7655

We have been looking at the Francis report recommendations and how Turning Point, along with the wider social care sector, is responding to this.

Fiona featured in the March/April edition of Learning Disability Today profiling her new role and the work of Turning Point.

We asked services to submit their Inspiring Images for the Community Care photo competition.

We received lots of entries which we are putting forward, like the picture on the cover of this issue – Nicky from Wiltshire Learning Disability Services. Winners will be displayed at the Community Care conference on the 21st and 22nd May.

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The Link has been designed for you.

It’s about you and the people you care about, connecting families and carers of people with a learning disability from around the country. Please tell us what you think and how we can make it better next time.

What is important to you? What you say matters and we want to share your ideas and stories. Tell us more about what you would like to read about.

Get in touch today Tell us what you think by emailing

TheLink@turning-point.co.uk or via post to The Link, Turning Point, Standon House, 21 Mansell Street, London, E1 8AA Letters may be edited.

The Link will be distributed quarterly. If you would prefer not to receive it, you can opt out by emailing the address above, or via telephone on 020 7481 6228.

www.turning-point.co.uk

Useful Contacts Fiona Ritchie Managing Director, Learning Disability Services Turning Point

Fiona.Ritchie@turning-point.co.uk

General Turning Point enquiries: Standon House (London)

020 7481 7600 The Exchange (Manchester)

0161 238 5100

Ideas, comments and stories: Claire Moszoro Turning Point

020 7481 6228

Turning Point is a registered charity No. 23454565. Address: Standon House, 21 Mansell Street London, E1 8AA