The Link Autumn 2013

Featuring

Your Say Letters to the Editor

The Ideas Collective Taking Advocacy back to basics

Service User Involvement Playing your part in the development of Turning Point

Don’t miss

Carer’s Corner

Big girl pants and multi-tasking

Awards Time Recognising the achievements of the people we support

Welcome

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elcome to the Autumn edition of The Link. I write this with the rain coming down and the leaves falling rapidly, but the content of this edition of The Link warms my heart.

The more I see of what the staff and people we work with are doing the prouder I become. That is why it is so important to show staff we value them in many different ways. We are looking at how we do this and have had some staff groups give us ideas on this, for instance staff in Bradford have come up with some fab ideas that they are currently piloting for us. We have developed thank you cards, managers are encouraged to give constant feedback and we are currently working on a staff awards evening to happen hopefully in March next year.

As well as valuing staff we are working hard on valuing people who we work with. You will read about The Extraordinary Person of the Month Award which we have just started and I hope this will become a popular award with both staff and people we support alike.

Empowering the people we support must be at the heart of what we are all here to do. However that is sometimes easier said than done. The People’s Parliament is a very important way of supporting people to have their say and to affect change but it takes a certain type of person to stop, not speak for the person, wait and interpret body language correctly; it is all too easy to take over and take control. We are all learning all of the time and I am really looking forward to popping into some People’s Parliaments and to the training that will be going on very soon.

I leave this page with my thoughts on my forth coming trip to Belarus; not long now before I visit. I am going to work with the staff in the hospitals in Gomel which is very close to the Chernobyl border and has been worse affected than Chernobyl due to the weather fronts at the time. We will also be working with Government officials to support them in their development ofhave a learning disability strategy.

Best wishes,

Fiona Ritchie Managing DIrector, Learning Disability Services Turning Point

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Contents In this issue Awards Time

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Recognising the achievements of the people we support

Carers Corner Big girl pants and multi-tasking

Service Spotlight Focus Point Wiltshire

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Your say Letters to the Editor

The Ideas Collective Taking Advocacy back to basics

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Service User Involvement Playing your part in the development of Turning Point

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Turning Point In Action Raising Awareness of Social Care

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On the cover From left to right: Family Carer, Julia Parker and her daughter Rhiannon Parker who is supported by Focus Point in Wiltshire

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Awa rd s time Recognising the achievements of the people we support

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ll across the country Turning Point are supporting people who are realising their full potential, living the lives they want to live and striving towards positive goals. There are many people we support who are challenging the public perception of people with a learning disability; self advocating and speaking up to make sure they and others are treated equally and fairly.

We are dedicated in supporting them to have the same opportunities in life as everyone else. So who are these people? What are their achievements and how do we let them know we are proud of them?

Introducing the Extraordinary Person of the Month Award.

The Senior Management Team of Turning Point’s

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Learning Disability Services want to give a shout about individual successes within services and make sure they are recognised for their achievements. So going forward each month, Fiona Ritchie, Managing Director, will be choosing The Extraordinary Person of the Month. This person will be chosen from a number of nominations provided by the Regional Mangers’ from across all of our Learning Disability Services. It is awarded to anyone who may have gone that extra mile or achieved something special for the first time.

And the winner is…

We are pleased to announce the first person to win the award is

Susan Hurley who is

supported by Turning Point at Hagden Lane in

susan hurley, extraordinary person of the month

Hertfordshire.

Fiona has chosen Susan as September’s Extraordinary Person of the Month for her recent achievements in presenting, training and sharing her experiences on mental health. And this time to visitors from overseas!

Earlier this year Susan hosted a question and answer session for six Greek nurses who were visiting the UK on an exchange programme.

The project was run by the local Learning Disability Mental Health Service where counterparts in the Greek health system came to England to learn about the work we do with people with learning disabilities and Hagden Lane was asked to be a host service.

They asked Susan questions about her

past, what her life was like in the mental health system, how her life has changed for the better and how Turning Point supports her.

Susan talked about her SPOT Plan (Support Planning Outcomes Tool) and showed them how it works. They were very impressed and wanted to find out more about how they too could use the tool.

We want to thank you Susan for positively showcasing the work of Turning Point you really are extraordinary!

Susan Says: It was a good experience to be involved in: having people visit us and learn from us so they can take it back to the people they look after

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ctober’s Extraordinary Person of the Month Award goes to

Robert McAngus Since Bob moved to Hagden Lane seven years ago, he has endeavoured to do the gardening work and sort out the recycling every week. His hard work has not gone

unnoticed; visitors to the service including the CQC inspector have commented on the beautiful garden and it remains the envy of many other services.

Using a person centred approach staff have ensured that Bob’s skills are nurtured and encouraged.

Bob we want to say thank you for being extraordinary!

Bob extraordinary person of the month showing off his garden

Let’s not forget our committed staff...

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t’s not only the people we rhonda receiving her gifts support who we think are extraordinary. We are also proud of the staff teams that support them.

Thank you Rhonda for your 40 years of service.

Our colleague,

Rhonda Wilson, has

worked at the Bradford Learning Disability Services for the past 40 years. Over the years she has seen a great deal of change in the services provided and

has always embraced this with enthusiasm.

Rhonda is currently a Support Worker at the Reevy Road service, which provides Supported Living Residential services for people with high support needs.

To celebrate Rhonda’s achievement, when she arrived on shift one evening recently, colleagues greeted her with a beautiful bouquet of flowers, chocolates and a bottle of champagne, along with a letter from Victor Adebowale, our Chief Executive recognising all her hard work and dedication to the individuals she

has supported over the years.

Rhonda was overwhelmed with the gifts and short speeches she received from colleagues and individuals we support at Reevy Road. They spoke of her positive, warm and friendly nature which means that everyone is delighted to find her on shift.

So Rhonda we want you too to know that you are extraordinary too!

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eanwhile in Hertfordshire we would like to congratualte

Sophia Hawkins Support Worker at Turning Point - Brickfield Cottage. As a result of Sophia’s consistent commitment and flexible approach to involvement she has gone a long way to embed the good practice needed to ensure that individuals are able to lead balanced and fulfilling lives. This has resulted her being nominated and now shortlisted for the Hertfordshire Care Awards 2013.

Well done to Sophia for being extraodinary!

Want to nominate an individual who has gone that extra mile or achieved something special? Get in touch by emailing your stories and pictures of extraordinary people in your life to : fiona.ritchie@turning-point.co.uk

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Carer’s corner

Big girl pants and multi-t Just a typical day in my life as a Carer In this edition of Carer’s Corner, we hear the experiences of Julia whose daughter attends Focus Point in Wiltshire

julia and her daughter rhiannon

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hiannon Claire Parker was born on the 12 June 1988. I went from being a young and naive 26 year old Mum with two little boys aged four and two, to a full time Carer, as well as still maintaining my role as a Mummy to my boys.

Rhiannon has a chromosome abnormality (here comes the science bit) which has resulted in her having an

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extra chromosome.

Its medical term is called Unbalanced Translocation of the 11th and 22nd chromosome, later renamed as Emanuel Syndrome (www. emanuelsyndrome. org). It’s one of those annoying rare genetic syndromes that at the beginning of her life no one knew much about.

It was like flying in fog and just hoping that we were all flying in the same direction!

During her childhood, I bumbled along with hospital stays, clinic appointments, educational statementing etc. there was some support along the way and I was pointed in the right direction for the most part. When Rhiannon turned 14, the word ‘Transition’ made its first appearance at one of her Annual Reviews. It was the introduction to Adult Services and the first time I exchanged my ‘little girl pants’ for my ‘big girl pants’!

I had really never thought much about life after school for Rhiannon, but when she became too old for the Holiday Club she attended, it was suggested that perhaps a local Day Centre, run by Turning Point, might be the solution to provide some cover during the school

holidays. So pulling up my big girl pants, we turned up at Focus Point and heaved a big sigh of relief when it all went well.

Transition into the Adult Services was a very bumpy ride for me. I soon learnt to treat it like a CO or General would do in a campaign.

When we finally made it and arrived in the Adult Sector, I quickly learnt that if I wanted Rhiannon to continue to develop socially, physically and emotionally, I would have to keep my eye on the ball. Multi-tasking became the norm for me.

But during all the upheaval and settling in period there was one bit that was consistent and that was Focus Point.

I knew that no matter what issues I would be having with different

asking

rhiannon taking in the sights

departments over aspects of Rhiannon’s care, they would always open the door for her at 9am with a smile and off she would go to enjoy her day. Then one day in the near past, during one of Rhiannon’s reviews, her Case Manager thought that Rhiannon would benefit from using Direct Payments and buy in her Day Services... my multitasking abilities were sent into overdrive!

I tried to embrace the whole idea and in came more forms to fill in, a Payroll Service to add to the mix, Carers to organise, back up Carers in case the regular Carers became pregnant

or went off sick, tax returns, holiday pay... my tasking definitely became multi. But the consistent once again was Focus Point. If they could they covered periods when Carers let me down and the management and staff were brilliant and I could vent to them when things were stretching me to the limit.

I finally came to a decision one day, when I had stretched my limits so far that I was not able to actually be Rhiannon’s Mum and enjoy my time with her; I was forever sorting out how to make sure Carers were delivering what I asked of them. I

sat down with the Team Leader at Focus Point and negotiated with her a set of services that her team could provide for Rhiannon each day and also give me the reliability and Rhiannon the routine that she needed. With give and take within Rhiannon’s Direct Payment budget, she now has a full and varied programme at the Centre which with the flexibility of Direct Payments can be tweaked and improved on.

when to admit defeat. I wear the hats of many roles within my family and especially with my daughter. Letting someone else help take the strain was not an easy thing for me to do, but it was the right thing to do for Rhiannon. By letting Focus Point play the major part in her Day Services, she now enjoys, swimming, riding, theatre trips, lunches out...the list goes on and this makes for a very happy Mum!

As a Carer of an adult daughter I have learnt that it is important to know when to fight certain battles and

Now back to find a clean pair of big girl pants as I have a phone call to make to Passenger Transport!

rhiannon enjoying swimming

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

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Focus Point Wiltshire This editions Service Spotlight is on Focus Point, Wiltshire Learning Disability Services.

We hear from Zanna Finnerty the Team Leader at the service.

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stablished in 1991, Focus Point provides Day Opportunities for people with a range of learning disabilities and complex needs. Located close to the centre of Salisbury, the service works with individuals to help them identify and take part in activities that are meaningful for them. We support people to take managed risks, try different activities and help them develop new or existing skills.

Support for all Many of the 47 people who choose to use the Focus Point service have complex needs and require help to communicate. Everyone communicates in a different way and we use both verbal and nonverbal methods to help people express their ideas and wishes. At Focus Point we know that the more complex someone’s needs are, the harder we must try to build relationships that enable us to support them to make their own choices and decisions.

one of the many activities taking place at focus point

Social Enterprise - where we create craft items to sell to the public.

Mind, Body and Soul - which includes sessions in our sensory room, Jabadao, horse riding and swimming.

Horticulture - which is maintaining our large garden and vegetable patch with a view to selling the plants and produce.

Consistent, continuous, long-term support Focus Point staff never give up - they just work harder, invest more time and think more creatively to meet a person’s needs. People who have behaviours that may be challenging , with or without other complex needs, deserve extra attention and support and at Focus Point we have the experience and skill to provide this support. We have a proven record of successfully delivering bespoke one-to-one support for people whose behaviour may be challenge.

And no matter the needs of the individual, we can help them improve the quality of their life through meaningful fulfilling activities.

Innovation in action If an indivudual wants support to attend events ‘after hours’ we can help them – after all, life continues in the evenings and at weekends too!

A unique approach At Focus Point we offer a unique, menu-based approach that allows people, alongside their other interests, to pick and choose from a range of activities. These activities are divided under three main groups:

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Individuals from focus pointenjoying themsel§vesat the annual southampton boat show

What do the individuals we support and their families say about Focus Point?

(My son) enjoys the relaxed atmosphere and the different activities.

The staff are always helpful and friendly. As parents it’s nice to know that he is in a safe environment.

I like going to Focus Point and I like everybody there!

An individual who attends Focus Point

Parent of an individual who attends Focus Point

My daughter has been attending Focus Point for over 7 years. Her welfare and well being has been a high priority at Focus Point and the staff there are exemplary in their care of her.

Parent of an individual who attends Focus Point

Dear Turning Point, I wanted to publically recognise the amazing efforts of Kim Woodford for her outstanding efforts this week.

In Salisbury we don’t look forward to the annual Southampton Boat Show as it often means an increase in traffic and people around but this year was an exception.

Focus Point was able to secure some free entries, which enabled some of the individuals we support, to go along and experience a boat ride along the Solent courtesy of Wetwheels Solent.

Wetwheels operate throughout the year and specialise in educational, sporting and recreational boating in and around our beautiful coastal waters. The boat is equipped to take up to 10 passengers including people who use wheelchairs so there was no stopping us!

Each and everyone who went enjoyed themselves and didn’t even complain about how wet they got. There were just smiles all round. I have had the pleasure of circulating the pictures of the experience to parents and carers and have received the most wonderful feedback.

A special thank you must go to Kim Woodford who arranged and coordinated the week. She was still arranging things well into the evenings and even came in on her day off to see people left on time and had everything they needed. The whole experience would not have been possible had it not been for her dedication and persistence. She is already starting to organise us for next year!

Thank you Kim. Zanna Harris ,Team Leader , Focus Point

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The Ideas Collective - tak The Ideas Collective is a group who want to make sure that the values and ideas that were in policies like Valuing People carry on.

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hey want people with learning disabilities to be able to:

Live as equal citizens in communities that welcome them

Get their human and legal rights

Get the same chances in life like education, paid work, a decent and safe place to live

ave good H relationships, including with their families who get good support too

They work together to share ideas on how these things can happen even though policies and how money is organised are changing.

The Ideas Collective is a network of people.

Fiona Ritchie, Managing Director, Turning Point, is part of the collective who have started talking and working together because they want to

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share their skills and experiences to make a difference. The collective say: We want to come up with ways for how policy, society and services can change so that all people with learning disabilities have the same rights and choices as other people...Our 1st publication is a paper about advocacy. We are really keen to start debate on how advocacy is working now and what is important for the future.

Taking advocacy back to basics When the Valuing People White Paper came out back in those heady days of 2001, most of us really did believe in the possibility of the world becoming a radically different and better place.

The mantra was the four key principles: civil rights independence choice and inclusion.

People across England plotted about what they were all going to do to enable people with learning disabilities to have radically different lives.

The concern is that elements of the advocacy support that we all hoped for in 2001 have got lost in 2013.

There is a real risk that the whole concept of advocacy has become little more than a mantra that many people speak about – without really understanding what advocacy is or could be.

We have difficulty in seeing the impact upon people’s lives that we had hoped effective advocacy would contribute to. Money has been invested in

advocacy development, but if we cannot see widespread benefits, then we have to question whether that money has been wisely invested.

It is important to ask this question given that a recent survey by the Improving Health and Lives Public Health Observatory (IHaL) has indicated that investment patterns in advocacy are changing – moving away from selfadvocacy to professional advocacy and from learning disability specific organisations to multi ‘client group’ services.

Is this an informed change in investment that is designed to improve advocacy or is it a response to a perception that advocacy is failing to deliver? If the money that is available in difficult economic times is not being used to best effect, that is unforgiveable.

ing Advocacy back to basics A debate about Advocacy This paper has been written to encourage an open debate about how advocacy might develop in the future. We suggest there are six key questions that should be considered in this debate:

1. Has the concept of advocacy been confused by policy makers and commissioners?

2. Do commissioners understand the

difference between various types of advocacy?

3. What is the purpose of advocacy – in

4. Is advocacy money being spent effectively?

5. Why has so much self-advocacy apparently had so little impact?

6. Why have the majority of learning

disability partnership boards turned out to be ineffective?

particular self advocacy?

The Ideas Collective believes that effective advocacy in all its forms is an essential component of people being enabled to have rich, happy lives.

Our view is that more of the same will not work.

We cannot carry on

saying the same things about advocacy as we have for the last ten years and simply expect the things we hoped for in 2001 to suddenly start happening. We need to all ask ourselves some hard questions about why, despite the

undoubted progress, we are still where we are.

Our plan is to have this discussion for a couple of months and hear what people have to say. We will then write a second paper that will contain some further ideas about what could

or should be done to help ensure that advocacy is a powerful force in the future. A voice that ensures that people with learning disabilities are effectively heard and people’s lives improve.

Please let us know what you think We are interested in hearing solutions, challenges and stories.

Please go to our website www.theideascollective.org.uk and you will be able to send us comments through that.

Alternatively you can find both the easy read version and full paper through on the Latest Downloads section of the Learning Disability area of the Turning Point website: www.turning-point.co.uk

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Service User Involveme Playing your part in the development of Turning Point Involving service users in the decisions about the services we provide is right at the heart of the Turning Point way of doing things.

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e want to encourage those who use our services to play a significant part in the development of Turning Point working closely with staff at all levels.

We want to make sure we are meeting the needs of each of the people we support and to ensure that no matter what their communication methods are that they are given the opportunity to express their wants and needs.

Turning Point like the Ideas Collective (page 10 and 11) over the past year have been thinking and talking about advocacy. You will have read about the People’s Parliament which has

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been set up across the country in previous editions of The Link and the way we have been encouraging the people we support to let us know what they want from Turning Point as a service provider, from the community they live in and from the Government.

Recently a Team Leader and Project Worker day was held in Stafford.

Staff attended from across three regions Stafford, Stoke on Trent and Derby.

The day took a close look at some of our work practices. One of the workshops available to staff focused on the People’s Parliament and Claire Moszoro, Engagement Lead gave a national overview

of how it has been working so far, some of the challenges and the next steps.

Julie Simpson, self advocate welcomes the team leaders and project workers

For a local perspective Support Worker’s, Tracey Frost from Derby and Holly Brown from Cannock gave a brief overview of how their Regional People’s Parliament had been working so far. A member of the Staffordshire, Stoke and Derby People’s Parliament, Julie Simpson played her part in the presentation choosing which table of staff would go next when feeding back during the workshop.

Julie told the staff team that she enjoyed the

social aspect of being part of her regions People’s Parliament it was an opportunity to meet up with people from other services and enjoy a meal together.

If you’d like to share your ideas about improving our services, at Turning Point, we’re ready to listen. Your local Service Manager is a good place to start.

Or email: LDInvolvement @turning-point. co.uk

nt In summary the session outlined:

The concept of Self Advocacy

The concept of Peer Advocacy

Some of the successes and challenges of the People’s Parliament so far

Just because someone can not communicate with words does not mean they can not communicate their hopes and dreams

Getting to know the individual and finding the right environment is key for getting people’s voices heard

That choice is relative – many people will exercise it, to different degrees, in different ways at different times

The importance of thinking creatively when gathering feedback from people we support who communicate in ways other than speaking

The need to change our mindset from advocating on behalf of people to supporting them to self advocate

Top to bottom: Tracey Frost, support worker, Derby; Julie simpson, self-advocate from the staffordshire, stoke on trent and derby people’s parliament; holly brown, support worker, cannock

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Turning Point in action

Raising Awareness of Soc This time the External Affairs update is focused on the Government’s plans to introduce a new national minimum eligibility threshold for adult care and support.

Sarah Cameron External Affairs - Advisor Turning Point

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he Government has announced plans for a new minimum threshold for adult care and support funding and is asking for people’s views about them. The proposals are in the form of draft regulations, which are rules that add further detail to sections of the already published Care Bill. Once finalised, the regulations will be considered by MPs and Lords in Parliament before becoming law.

This will affect the people we support as the plans will change the Fair Access to Care Services (FACS) system that local

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councils currently use to determine needs, which has four eligibility bands (critical, substantial, moderate and low). From 2015, the Government will set a minimum level that all councils across the country must meet by funding care and support for everyone whose needs meet (or are above) that level, rather than letting councils decide what level they fund.

The Government says the new threshold will be set at a level ‘equivalent to’ the current substantial band, which is the same level that most (but not all) councils currently fund care and support at.

The regulations cover what the Government thinks people’s needs should be in order to meet the new national eligibility criteria. We will be responding to this and would be

keen to include any views that you have.

All contributions are welcome but some things to consider could be:

Are they fair?

Are any groups of people or needs missing?

What works or doesn’t work well?

Can they be used in practice?

Are they easy to understand?

What information would be helpful to better understand them?

How will different people be affected?

Are fluctuating needs addressed?

Do they describe the current substantial band?

Regulations An adult’s needs meet the eligibility criteria if: Their needs are due to a physical or mental health impairment/ illness and the effect is a significant risk to any aspect of the adult’s wellbeing because they are unable to:

Carry out basic personal care activities or basic household activities (defined as essential daily tasks including eating/ drinking, maintaining personal hygiene, toileting, getting dressed, taking medication, preparing meals, shopping, cleaning/laundry and managing household finances);

Fully carry out any caring responsibilities they have for a child;

Access and engage in work, training, education or volunteering;

ial Care

Access necessary community facilities/ services; or Maintain family/ personal relationships without support.

A person would be regarded as unable to do any of the above if they cannot complete a task without assistance, or, if they are able to complete a task without help but doing so:

Causes significant pain, distress or anxiety Endangers or is likely to endanger the health/safety of the adult or others Takes significantly longer than would normally be expected

Fluctuating needs Where a person’s needs fluctuate, the Government says that councils should take into account the person’s circumstances over “such period as it considers necessary to establish an accurate indication of needs” when deciding whether a person meets the eligibility criteria.

deteriorating as a consequence of caring, if they were unable or unwilling to provide part of the care required, or if they are unable as a result of caring, to:

Complete basic household activities;

Fully care for any child or other person they are responsible for;

Fully maintain other family/personal relationships;

Carer’s needs The Care Bill also requires councils to assess carers’ needs and support their ‘eligible needs’ for the first time.

A carer’s needs would meet the eligibility criteria if, their physical or mental health is or risks significantly

Get and remain in employment, education or training;

Access necessary community facilities/ services; or

Participate in recreational activities.

A carer would be regarded as unable if they cannot provide necessary care without assistance, or can provide it but doing so causes -or could causethe carer or person needing care significant pain, distress or anxiety or if it endangers -or could endanger- the health/safety of the either person.

If you have any comments on the regulations above please do get in touch: Email: sarah.cameron@ turning-point.co.uk Phone 020 7481 6247 or write to the addreess on the back page by 24 November.

In other activity We have been supporting our Chief Executive Victor at the three party conferences, where he met people including Care Minister Norman Lamb, Welfare Reform Minister Lord Freud and opposition ministers from Labour. Key points that Victor put forward were that vulnerable people are being unfairly impacted by welfare changes and that preventative services and support must continue if the eligibility level for social care funding is to rise.

Back in the office the team have been responding to further Government consultations including on social care funding and the proposed cap on care costs and what the Mandate to NHS England which sets the Government’s ambitions for the NHS should include. We have also been attending a discussion group set up by the Department for Work and Pensions to inform the Government’s new disability employment strategy that is currently being developed.

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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 Numbers 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