A newspaper from Partners for Inclusion // Winter 2012/2013 // Edition 02

Services at the crossroads: citizenship or institutions?

Is there a trend to big-group living and exclusion?
There was plenty to celebrate at Partners November 2012 conference - a 12-year journey to nd the best ways of supporting people to become citizens. But while the organisation celebrated, Doreen Kelly, Partners Chief Executive, said we should be on guard against a return to features of the bad old days of services.
The people who get support from Partners often come with a reputation for challenging services. But Partners has found a way that they can have their own place to live, with support designed just for them. They are citizens not service users. And it doesnt cost more than traditional services. Partners approach has been so successful that it has helped to establish two new organisations that work in the same way - Just Connections and Beyond Limits. The organisations working methods are admired around the UK. Paul Davies, former North East Lead for the Valuing People Support Team, comments In England organisations often talk about supporting people with challenging needs but dont always deliver. Partners does. Its a fantastic organisation. So everything is rosy in the Partners garden? Denitely not, says Kelly. We think we do a good job. People have real lives. Theres no denying it. But there are clouds on the horizon. Some authorities say they cant afford individualised services and are looking to bigger group settings - institutions. > Cont.P3

artners for Inclusion hopes you enjoy the second issue of the Partners Paper. Readers said they liked the first. Its a tabloid newspaper. There are some serious articles because big changes are on the way - especially to welfare benefits. There are lighter articles, too, and you can find out what some people who get support from Partners are doing. Theres even a cartoon. Flick through and see what catches your eye.
PETER MccULLOcH SAYS WE ARE IN UNcHARTED TERRITORY....6 cONFERENcE: CHANGING SERVIcES FOR GOOD...7-9

pUB, DANcING, FOOTBALL: MY BUSY WEEK IN pIcTURES...16

WELFARE BENEFIT cHANGES cOMING FROM ApRIL THIS YEAR...15

Partners Paper | Winter 2013 | Edition 02

Contents
Services at the crossroads: citizenship or institutions? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Partners and Just Connections staff . . . . . . . . 2 Sheilas long road home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Friends united . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Making your way in life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Everything you always wanted to know about services (but were afraid to ask) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Smarty party . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Uncharted territory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Changing services for good . . . . . . . . . . . . . . . . . . . . . . . 7 Voices off . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 I want more services like Partners for Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Doing their bit for social justice . . . . . . . . . . . . . 8 Very co-operative . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Bring health and social care together . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Up close with... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 Sharing the caring in Tenerife . . . . . . . . . . . . . . . . 10 Summer nights and hound dogs . . . . . . . . . . . . . 11 A duck to water . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 The jobs people do for Partners . . . . . . . . . . . . . . 12 Labels are for jars . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Jargon buster . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Health and safety news . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 Energetic and passionate . . . . . . . . . . . . . . . . . . . . . . . 14 Welfare benefit changes . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 My week in pictures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Partners: 12 years of success but what about the next 10? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

About Partners for Inclusion

Partners for Inclusion has a long history of providing support for people who have a learning or mental health difficulty or both especially those leaving institutions like hospitals and group homes. Partners has particular expertise in supporting people whose behaviour challenges services. We provide tailormade support so that people have their own home and control over their life.

Freedom Fighters
Five stories of endurance and escape
Freedom Fighters Freedom tells the stories of five people Fighters who escaped institutions to live a life of their choosing - in their own home with support designed especially for them.
Five stories of endurance and escape
By Clare Hyde
...there are still many thousands of people who, because of the labels and diagnoses given to them, have no control, no power and no choice about how, where or when they get their support and care or even who delivers it.

Author: Clare Hyde A4, 44 pages To buy a hard copy for 6 or for a FREE electronic copy, email reception@partnersforinclusion.org with your name, address, email address, number of copies and invoicing or payment details.

Publishing Information
The Partners Paper is a newspaper produced and distributed by Partners for Inclusion, a not-for-profit organisation and registered charity. Company limited by guarantee Number 262549. Scottish Charity Number SCO35125. Registered office Partners for Inclusion West Kirk 84 Portland Street Kilmarnock KA3 1AA

Conference special

293 staff work for Partners and Just Connections

208 support workers 55 team leaders 11 service leaders 2 senior service leaders 1 chief executive 3 directors 14 central team support staff.

Production
Editor: Carl Poll carlpoll@btinternet.com Design: Henry Iles design@henryiles.com Print: Quotemeprint www.quotemeprint.com

People were all ears at Partners November conference Changing services for good. There was too much going on to capture in a few pages. But to get an idea of what happened - from hooting owls to hoots in the laughter workshop - see pages 7-9. Pricking up their ears above are Cathy Jamieson MP (left), Sir John Arbuthnott and Doreen Kelly.

Partners Paper | Winter 2013 | Edition 02

Sheilas long road home

Crossroads
Cont. from < P.1

This is puzzling because Partners support can cost less than traditional services for people with similar support needs. Partners average cost is 79,000. Only one person costs more than 110,000. One study of out-of-area placements found the average cost to be 106,000 and the highest 258,000. So why would authorities choose more expensive services that dont offer people a real life? Maybe, says Kelly, the idea of individualised services, Partnersstyle, seems too complicated. Its easier just to send someone off to an institution somewhere. And perhaps theres a stubborn view that group services are bound to be cheaper. As well as the pounds spent, there is another cost to the use of insitutions, as a long series of abuse scandals - at Ely, St Lawrences, Cornwall, Winterbourne View and many others - have shown. Institutions take people out of public view. There is the danger that people become dehumanised in the eyes of some staff. This is the precondition for abuse. In the unlikely event that no-one is ever abused in institutions, their residents are certainly denied a real life. It neednt be like that, says Kelly. Partners and similar organisations in Scotland have shown there is another way.

Staff worried about Sheilas move from hospital to her own home hundreds of miles away. What happened surprised everyone.

campus to another things had gone badly, so a careful plan was drawn up for the move to Plymouth. This involved two vehicles with three hospital staff in each plus members of the Beyond Limits team. But the long journey passed without a hitch. They even stopped for a relaxing coffee. Woodward reports that The rst days were tough but Sheilas team six of us in all pulled together. We got on and everyone was incredibly exible. Now, Sheila is steadily building a new repertoire of things she is willing to do. She goes out shopping most days. Given that crowds were thought to trigger avolatilereaction, Sheilas trouble-free trips round the supermarket even on Christmas Eve have come as a welcome surprise. She chats to neighbours in the morning, cooks and is starting to accept that cleaning has to be done she hates the vacuum cleaner but has taken on mopping.

Sheila, 57, had spent most of her life in institutions. Until December last year, she lived in a hospital hundreds of miles from her home town of Plymouth. She was always accompanied by staff and, for several years, rarely went beyond the front door. More recently, she went out on specic days. Staff at the hospital warned that there would be trouble with Sheila getting very upset if that routine were broken. So everyone was apprehensive about the move, especially the eight-hour minibus journey.
A new team at Beyond Limits, the Plymouth organisation that has adopted Partners approach, was established to work with Sheila. We didnt know much about her and didnt know what to expect. Wed read about the physical risks, the physical restraint sometimes needed and that Sheila didnt have much communication, says Angie Woodward, one of the team. But the person sitting in front of them seemed different less threatening and more communicative. Over six weeks of visits, the team got to know Sheila better and also the staff at the hospital. One thing that made this potentially difcult transition work, says Woodward, is that the hospital staff and we were on the same page. They were helpful and friendly told us everything we needed to know. They wanted this to work for Sheila. Were Facebook friends with them now. When Sheila had moved before from one hospital Woodward says We need to keep trying new things with Sheila and I know shell keep surprising us. Recently, we were stuck in a supermarket queue. She started nudging me. When I rst met her, I might have thought this was the start of a reaction to the crowds. But it was much more ordinary. We were both restless, both shufing a bit we needed the loo! (Names have been changed in the interest of condentiality)

New campaign
Partners is in the early stages of setting up, with like-minded organisations, a campaign to ght this trend. Contact Partners for more information.

Partners Paper | Winter 2013 | Edition 02

Friends united
Ryan and Murray have become friends. Nothing unusual about that perhaps but Ryan is such a private person that his support workers just stood back and marveled.
Trish Garofalo comments that We didnt have much to do with it. Yes, we did some work to help Ryan meet new people in the community supported him to go to some clubs and thats where he met Murray. But Murray made the running, seeking his new friend out and phoning regularly. He just got Ryan found him endlessly interesting and fun. Ryan, 32, lives in his own place next door to his twin brother. They have a good arrangement with a shared garden and they are in and out of each others house as they please. But Ryan didnt have friends. That has all changed now. Ryan doesnt speak but Murray chatters for both of them, something Ryan is very happy with. Theyve been swimming together and had dinner at Murrays house. (Murrays mum and dad set up the meal then went out and left the pair to it.) Now theres talk of Murray staying overnight and they are planning a holiday together maybe at Centreparks, which ticks Ryans boxes, especially his love of the outdoors. Karen McKnight, Ryans team leader, says:

Ryan (right) and Murray: comfortable together.

We can play a proper supportive role returning Murrays phone calls and checking with his parents that hes not double-booking a date (which he sometimes does).
celebrations, fun and good times but there is also careful reection on thorny issues and frustrations. It has long been a feature of the service world that families are seen as difcult getting in the way of professionals doing their job. We take a different view. The families of people we support tell us honestly about what we do what works and what doesnt. We learn from them. It makes our job easier when they help us to get things right for their relative. At the conference in November, we were able to take stock of how we are doing in our workshop Making your way in life. People told stories of setting up home, getting work and friends. These sound like simple things but these were stories of great personal strength and resourcefulness, told by people whose condence is visibly growing day by day. They also revealed a knack for public speaking. Lorraine Stobie, head teacher and winner of The Lifetime Achievement Award at the Scottish Education Awards 2012, told stories of young people leaving Southcraig Campus School in Ayr. Just Connections

But we dont have to encourage the friendship. They are very comfortable together. Ryan just took to Murray. Its as though hed always been part of Ryans life.
has helped seven of those young people to make the transition from school to adult life. Fay Scobie, who featured in the last Partners Paper, described their planning for her daughter to leave home. James told how he had been able to go on holiday with his friend now he has left Daldorch school. For staff at Just Connections its a privilege to be involved in supporting people during these exciting periods in their lives. Outside the workshop, Robert Wallace had persuaded his support worker, George, to auction a ride in his sports car (and Robert can be very persuasive). I bid enthusiastically for the ride but was outbid. At least George is spared the worry of handing the keys of his cherished car to the boss.

Making your way in life

Just Connections director, Ian Williams, says supporting people is a privilege.

Robert (right) persuaded his support worker to donate a sportscar ride for the auction.

Just Connections now supports seventeen people to live the life they want. The organisation is also working on new services to support ve more people to make big moves from hospital, school or living with family to having a place of their own. Staff were

particularly pleased that one family, after doing lots of research to nd a service provider for their son, chose Just Connections. The organisation grows in strength and experience by learning from what we have done so far. Staff share stories of

JUST CONNECTIONS
Just Connections works in a similar style to Partners. To nd out more, see the article in the last issue of the Partners Paper or email ian.williams@partnersforinclusion.org

Partners Paper | Winter 2013 | Edition 02

Everything you always wanted to know about services (but were afraid to ask)*
Partners answers this editions awkward question.
This column asks the challenging questions and gives Partners answers. Usually the questions are ones that we dont get round to asking. Perhaps this issues question is a bit different. A lot of people are already asking it.

Smarty party
14 November 2012: staff from Partners and Just Connections met to raise a cheer and a teacup to their very qualied colleagues.
The tea party was in honour of nearly fty staff who had received awards and certicates in 2012.

This issues question is: Self-directed support and personalisation: are they just a way of making cuts?

Personalisation is about putting users at the heart of services getting them involved in the design and delivery of services so those services are more efcient and person-centred. Self-directed support (SDS) is about giving people control over the funding and design of their support as much or as little as they want. We cant argue with these ideas. They are good. They are also government policy. So what could go wrong? In the last issue of the Partners Paper, Jacqui Kerr of East Ayrshire Social Work, said Scotland could get this right and avoid mistakes made in England. So do we need to worry at all that the good ideas might be a smokescreen for cuts? Simon Duffy, one of the pioneers of selfdirected support, says we should:

They have different ways of doing it. For example, they use questionnaires and points systems to cut budgets, then pretend that this is a meaningful individual assessment. Or they give people a budget but dont allow them to spend it freely. They take out the creative things that people put in their plan things that would make best use of the money.
Not every local authority in England does this. Some, like Barnsley, let people use the money exibly knowing they will get better lives and the money will go further. In an interview in this paper, Peter McCulloch of Renfrewshire, says Its denitely not about being a cost-cutting tool. So, in Scotland the jury may still be out but theres enough evidence from England that we need to be on the alert.

Partners and Just Connections staff cheer on their quallifying colleagues.

The awards included:  niversity of the West of Scotland Diploma U in Leadership University of Scotland Certicate in  Management and Leadership  Caledonian University Masters in Human Resources  HNC in Social Care SVQ in Health & Social Care via Gerry  McNabb Training Services Ltd (19 staff) Higher Educational Certicate in Person  centred Approaches to Social Care (10)  Leading Others (First line Management Certicate) via Altrum and Queen Margaret University (16). These qualications are important because Partners staff must be properly qualied in order to register with the Scottish Social Services Council. They also help staff in their long-term careers. One staff member said: As well as this fomal education, we have another school - our everday work, where some of the best learning takes place. We know that the people we support will always be our best teachers.

A few years ago I would have said its got nothing to do with cuts. Now Id say its often a way of making cuts. Thats not a fault of SDS. Its because the government in London has targeted disabled people in cutting public services. In England, social care will be cut by 25% by 2015. In Scotland, the cuts may not be so severe. But there will be cuts unless people protest. This means its all too tempting for local authorities to turn SDS into a tool for cutting.

Questions
If you have a question that youd like to ask anonymously, email: carlpoll@btinternet.com *We borrowed the title from the Woody Allen lm, Everything you always wanted to know about sex (but were afraid to ask).

Partners Paper | Winter 2013 | Edition 02

Uncharted territory
Carl Poll talks to Peter McCulloch, Renfrewshire Health and Social Work.
Social work and health can be easy targets for our frustrations when things arent going well. But spare a thought for those in the hot seat at the council. Whats it like for them? Peter McCulloch takes us on a tour of challenges and opportunities.

the governments priority is 1624 year olds, not disabled people. Theres going to be a review of The Same As You which we hope will tackle some of these issues at a national policy level. Is there any good news? Please? Well, if youre someone with a learning disability in Renfrewshire, our day services have vastly improved. Weve closed our oldstyle day centres and created a network of community-based supports. Two new services are fully integrated into community leisure centres where people can use the health and tness facilities and connect much more with their communities.

SELF-DIREcTED SUppORT IS DEFINITELY NOT GOING TO BE A cOST-cUTTING TOOL.

Also, the big news is that the Self-Directed Support Bill will become law very soon. If its done properly, people will have control over their money and support and, potentially, make better, more efcient use of the money. Peter doesnt accept that Renfrewshire could be tempted to use self-directed support as a means of making savings: Well stick to the spirit here people having more choice and control over their support. Its denitely not about being a cost-cutting tool. So will people be allowed to use their budget creatively like, say, the man in England who bought a season ticket for a neighbour who then took him to football matches? These much-quoted examples the season ticket, the holiday in Spain can be misleading. Id rather look at the persons whole support plan 365 days a year: what will help someone get a better life? But, ok, if a season ticket for St Mirren plays an important part in the persons life, wed be prepared to look at that. Peter McCulloch is the Joint Manager for Renfrewshire Learning Disability Service.

Peter McCulloch (left) with people who use services in Renfrewshire.

A quick question about Peter McCullochs responsibilities elicits a long list of services, access points and staff roles. His service supports over 1,000 adults with learning disabilities in Renfrewshire. He manages a joint health and social work service with around 200 staff. There are two locality teams providing a fully integrated health and care service including psychiatry, psychology, nursing, social work, various allied health professionals, plus day services, residential respite care the list goes on. This may sound like social work and health keep services in-house, he says, but about 75% of our clients care is carried out through the independent sector mainly voluntary organisations. So our relationship with them is incredibly important. Theyre key players. All Peter has to do is make sure everyone gets a quality service and the best outcomes for them as individuals! He has a lot on his

desk. Added to this, there are new challenges.

WE ARE TRYING TO FIGURE OUT HOW TO DEAL WITH GREATER DEMAND WHEN BUDGETS ARE UNDER pRESSURE.
The number of people with learning disabilities is growing by about 1% a year or 11% every 10 years. People with learning disabilities can expect to live considerably longer than they might have in the past. This can bring unforeseen challenges. For example, older age conditions like dementia are becoming more prevalent in people with learning disabilities and we need to design services that are suitable for their particular needs. The fact that more children with very severe conditions are surviving birth also presents its challenges. We are in uncharted territory here. Were trying to gure out

how to deal with greater demand and more complex needs at a time when budgets are coming under more and more pressure.

THERES NO DOUBT WELFARE REFORMS WILL HIT MANY OF OUR SERVIcE USERS HARD.
By this point in the conversation, Im glad Im not a health and social services manager and theres more to come. My other great worry is, of course, the impact of welfare reforms. Theres no doubt the changes will hit many of our service users hard their income will reduce. And then there are, for example, changes in tenancy regulations that mean you may not get housing benet for a two-bed property to accommodate a sleepin supporter. Also, theres whats happening in the economy less likelihood of people with learning disabilities getting work because there are fewer jobs and, anyway,

Partners Paper | Winter 2012 CONFERENCE 2013 | Edition PAGE 02

Changing services for good

Partners conference celebrated 12 years protecting the rights of vulnerable people and developing ordinary, cost-effective solutions to complex problems.
As well as platform speeches on the big issues of the day, workshops on human rights, self-directed support, citizenship, public social partnership (and more), there was time for African drumming, theatre and having a laugh - in a laughter workshop called Joy works.

Voices off
Cathy Jamieson MP and Sir John Arbuthnott were ofcial speakers but others at the conference had plenty to say. There was the big brother video diary and the Partners roving reporter, who captured the mood in the coffee queue.
What Partners does should be for everyone who needs support. I was a reghter and I used to visit this institution. Youd go up to a huge room on the top oor. It was cold and there were people who were naked or semi-naked. You wouldnt treat a dog like that. Things moved on. People like my son, Stuart, went to nursing homes. But they probably cost a small fortune and, in my opinion, the care was very poor. After retiring from the re service, I was a driver for a short time taking people around. One day, I talked to one of the clients and asked her if she was going on holiday. She said she was and she named the place my son lived. Now, some people make a lot of noise. So, imagine what that means for peoples quality of life. If you live there, people are coming into your own home. And is that a holiday for the others?

Now I talk to my son and I ask him how he is and he says happy, happy, happy. Is it because hes got his own house? Yes he says very clearly. You hear of organisations taking 150,000 a year to look after one person and the local authority has its hands tied because theres no alternative. But take Partners. It should be for everyone who needs support. Look at older people. Instead of people being moved into nursing homes and losing all their assets, get a support team around them like Partners does. That makes much better sense.
Gerard Christie, a parent of someone supported by Partners.

do to move forward in these difcult times. It gives me hope that people are prepared to work together and trust each other.
Alison Findlay, Senior Service Leader, East Ayrshire Council.

Today I want to talk to people Partners supports we Board members dont get to do that too much. Also I want to hear from local authorities about their pressures, their issues and nd out how they think Partners can support people in ever more progressive ways.
Jamie Maxton, Chair of Partners Board of Trustees.

Its great that families, individuals, social work, health services and providers get together in a shared discussion about what we need to

I liked the laughter workshop. I didnt like the owls.

Margaret Gracie

Partners Paper | Winter 2012 CONFERENCE 2013 | Edition PAGE 02

I want more services like Partners for Inclusion

Cathy Jamieson MP knows why Partners is important.

Doing their bit for social justice

Linda Graham handed out Partners Employer of the Year Awards 2012.
What disabled people do is often decided not by their ability but by other peoples low expectations. One way we can support people is to help them get jobs some paid, some voluntary jobs in ordinary places where they can meet people and be seen contributing to the community. It was a great pleasure to give Partners Employer of the Year awards. The people and organisations that received these awards are doing their bit for social justice.

Cathy summarises her conference speech and says what she would do if she were Prime Minister.
My speech in a nutshell
We need to provide services that meet the needs of individuals, rather than try to t people into the services that are already available. And its about how organisations need to work together rather than do their own thing.

always a politician I trained as an Art Therapist, then was in Social Work. So I have direct experience of working with people with learning difculties and their families.

The most important thing about Partners

...is that they really get to know the people they work with and provide support based on what people need. They can do this because Partners is a relatively small organisation. Most importantly, its the organisations values that matter. Partners want people to have as much as they can - often these are things most of us take for granted but are denied to so many people with learning disabilities.

cheapest. And staff need to be well trained and supported. Partners has worked hard to get the Investors in People Gold Award. That shows they are among the best in the country.

If I put on a pessimistic hat

I worry that, in times of austerity, cuts in services will have the greatest impact on the most vulnerable people. I dont want the clock turned back to a time when people with learning difculties were not shown any respect or were seen as a burden.

CVO East Ayrshire receive their award (with conference co-host, Alan Lowe).

And the winners are:

Co-op, Galston: the overall Employer of the Year. See page 9. Ayr Race Course, where Michael has applied his passion for vacuuming for ve years. He has learned new skills there and got an additional job. The Robert Burns Birth Place Museum has provided three work opportunities for a gardener, shop assistant and museum assistant. The Museum staff have given fantastic support. The Council of Voluntary Organisations in Kilmarnock carved out a job that matched their need to Williams photocopying skills. The Promotional Chocolate Company has employed Patrick for over eight months. He helps Fiona to pack seasonal gift boxes.

Why I wanted to speak at the conference

As an MP for Kilmarnock and Loudoun, and as Shadow Economic Secretary to the Treasury, Ive got a wide remit. But conferences like this are important because we must always remember our responsibility to speak up for people who need to have their voices heard, however small that group might be. I wasnt

With an optimistic hat on

I hope we continue to improve services and that people who use those services are more involved in designing them. I also hope that governments will recognise that good quality care is an investment in peoples lives and that funding will be used exibly to provide the highest quality services.

If I were Prime Minister

I would want more services based on the values of organisations like Partners. Services must be about quality not just whatever is

Partners Paper | Winter 2012 CONFERENCE 2013 | Edition PAGE 02 Very co-operative
The Co-operative, Galston, was the overall winner of Partners 2012 Employer of the Year Award. Linda Graham reports on the can-do Co-op.
Finding the right work opportunity for people can sometimes be tricky. It may be their rst experience of work and they may need to start very small - for just a few hours a week. They may want to work on very specic tasks to gain condence. Not every employer will co-operate. But the Co-op was as good as its name. Davids support team approached the store manager in Galston saying David needed a small number of hours on a voluntary basis so that he could get used to the world of work.

Bring health and social care together

Sir John Arbuthnott, speaking on future challenges.
Sir John Arbuthnott has a distinguished career that includes being Professor of Microbiology and Principal of Strathclyde University. Here he summarises his speech at Partners conference and puts some future challenges into perspective.
meaningful contact with the right professional someone who really knows about your relative can be incredibly difcult. Families can be desperate in their search for good care for their relative. This situation affects people with learning disabilities but everyone else too.

Theres cause for optimism about services being more joined up but its not going to be easy My speech in a nutshell
John Congalton (left) receives Employer of the Year Award on behalf of the Co-op.

Working with the staff at the Co-op has been a joy. David was welcomed and the staff at the store spent time inducting Davids team so they could support him at work. They invited a team member along to their staff meeting to tell them about David and how he communicates. (Sometimes he can be a bit loud if hes not understood.) The attitude of the manager, John Congalton, has been outstanding. He has a real can-do attitude. John shrugs off the suggestion that hes done something special. Everyone deserves a chance, he says. David works for two-and-a-half hours a week - a modest amount of work time but these hours represent a milestone for him. He is passionate about his work and the Co-op now has an extra, very dedicated member of the team.

We need to bring health and social care together so the most vulnerable people get the best possible care in their own community preferably in their own home near their family. At present, it can be very hard to get a joinedup response from services and that can cause great concern to everyone involved. Fortunately, the Scottish government is making a serious attempt to integrate health and social care.

about getting greater fairness in the allocation of funding for health services. So I wanted to talk to people at the coalface Partners and families about whats happening in the big picture. We need to work together to make this happen.

This conference was about people with learning disabilities but everyone is affected by how services are organised
I meet lots of local people in my work and I get a clear view of what its like for them when they want to access services. I recently chaired an expert group on elderly care and what came across in spades was the frustration people have in dealing with the system. Its full of separate entities. Making

Why I wanted to speak at the conference

Ive had wide-ranging research interests during my 50 years of work. Most recently, Ive been interested in health, welfare and fairness for all citizens. My report, Fair Shares for All, is

What the Scottish government is doing about the integration of health and social care is ground-breaking but there will be challenges. There will be a reaction from those who want to defend their own professional area and budget. We have to get greater linkage between professionals between, say, a consultant surgeon, psychiatric adviser, a pharmacist concerned about the appropriateness of a drug for a particular patient. These are usually separate transactions we havent joined them up. The barrier is largely about the ow of money and governance. We need a joined-up governance approach. That may sound a bit lofty. But it is the crucial thing that will enable the mix of services to work so people get an integrated package of help.

Partners Paper | Winter 2013 | Edition 02

10

Up close with...
Fiona Campbell, receptionist at Partners.
The thing that gets me up in the morning is... my 21-year-old cat. She barges into the bedroom demanding breakfast. When the cats up everyones up. Life before working at Partners for Inclusion was.... working for Securitas in a cashprocessing centre in the CSI department. No, nothing to do with forensics just sorting bank notes for ATM machines. It was a good enough job but I missed the buzz of interacting with people face to face. Thats why the reception job at Partners is ideal. I get to meet a variety of people and a chat is part of the job. If I had a time machine, Id go back to..... 1901, when my Gran was born. She lived until she was 95. I often think
about how many inventions and new things she saw in her lifetime. Id like to see what life was like before all the gadgets we have today.

My first memory is.... one Christmas I was really excited about all the toys Santa had given me. Then I turned round and saw a big red bike leaning against the wall. I couldnt believe it when my mum and dad said the bike was for me. Something I like about myself.... Do I have to answer this? Ok, I suppose its that I always try to help people when I can. If I can do something for someone that will make a difference to them, then thats worthwhile. Also, I try to be cheery in the ofce and I think I succeed most of the time. Youd better ask my colleagues!

Fiona Campbell: A chat is part of the job.

Something Ill change when I get round to it is..... probably to be a bit more adventurous and take things as they come. I always need to know exactly what I am doing and when. For a change, it might be nice to just wait and see what turns up. If you were to join me on a Sunday afternoon.... bring your iron because well be ironing in front of an old lm on the TV, usually a glorious technicolour musical or a western. Cant beat the classics!

Given 100 and forced to treat myself, Id..... get the ferry at Ardrossan and pop over to Arran for the day. My husband, Colin, and I love going over there for a bit of hillwalking or just taking in the sites and local hostelries. Its a favourite place of ours. If I had to listen to one piece of music all day, it would be.... something to t my mood of the moment. I like a wide range of music from the Mission and the Buzzcocks to Elvis and the Beatles.

Sharing the caring in Tenerife

Ann Guy describes how her son, Allan, may soon be taking independent holidays.
Our family enjoys going on holiday together. Allan, who is wheelchairbound, likes the whole business setting off in the car, the buzz of the airport and the attention as he is lifted into his seat in the plane.
A few years ago we discovered a relatively cheap way of getting some winter sunshine in Tenerife. The resort of Playa de Las Americas is at enough to walk for miles with the wheelchair. Weve gone every December since. Tenerife has an Orange Badge ofce and you can get anything you need to make the holiday work. We hire a disabled taxi for pickup and drop-off from the airport and a hoist for bathing. We are getting older and people started saying we couldnt manage the physical demands of looking after Allan on holiday. We didnt agree. After all, we get used to the fact that everybody from therapists to strangers in the street seems to know better than us how to run things. However, we did see that Allan might enjoy this type of holiday with his excellent workers. Partners took us on about four years ago. Allan has his own at and leads a great life with Partners support. Hes been on activity holidays in Britain with them but never abroad. We wondered about a sort of transitional holiday, on which Allan would still be at the centre of the family, which includes his brother, David, and see that he could do this with his workers as well. We worked out an arrangement with Partners whereby we would take two of Allans support workers he has 24-hour support. One thing that made the idea feasible was Partners careful matching of families to workers. You couldnt contemplate such an undertaking with people you dont feel comfortable with.

ONE THING THAT MADE THE IDEA FEASIBLE WAS PARTNERS cAREFUL MATcHING OF FAMILIES TO WORKERS. YOU cOULDNT cONTEMpLATE SUcH AN UNDERTAKING WITH pEOpLE YOU DONT FEEL cOMFORTABLE WITH.
We have tried the idea out twice and it has been a great success. We showed the boys the ropes about negotiating the travelling, the hotel and what to do and what to avoid

Partners Paper | Winter 2013 | Edition 02

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Summer nights and hound dogs

Grease nights, Elvis evenings and mingle meals: DM2 members lead.
Linda Graham says DM2, the club where people can meet new friends, is doing well. Even better, it seems all set to continue when funding nishes - led by members.
the ceiling next to the cut-out pink Cadillac. William made up a Grease dance performed by the DM2 team. Another member, Peter McKerrell, organised the Elvis night in January this year. He found the venue the Red Lion in Prestwick discussed arrangements with the manager, booked the DJ and organised yers and posters. Alongside music-based evenings, there are more peaceful events. A

Mingle Meal at the Malt Cross in Ayr was the perfect way for people to chat quietly to each other. It started at 4 p.m. and, when the DM2 team went at 7 p.m, many people stayed on. Two couples are seeing each other now and this is how it should be. DM2 isnt a dating agency. Its a way for friendships to form in an ordinary way. DM2 has funding for two more years. The hope was always that members would take control and DM2 would keep going when the funding nishes. All the signs are that our hope was realistic. For more information about DM2 call John or Helen on 01563 825515 .

Be a DM2 volunteer
There are two volunteer posts:
Designer:designing and producing quarterly newsletters and
yers for someone who prefers to be mainly in the ofce.
Grease: Kathleen Dougherty, Muriel English, Vincent McGinney, Natalie Steele.

We had high hopes for DM2 (Dates and Mates) Ayrshire when it started in February 2012. But we couldnt have guessed how it would take off. Its not just that there have been successful, well-attended events. Its the fact that members

are taking the lead suggesting themes and then organising events. William Sym wanted a Grease night and made sure he got one. It was a run-away success. 76 people came all dolled up with pink wigs or quiffs. Old records hung from

Events Assistant:helping to organise events for someone

who likes social events and meeting new people. Both posts are based in Kilmarnock but involve independent travel to venues around Ayrshire. For information and an application form call 01563 825515. We can help you complete the application form.

in Tenerife. They do much of the personal care and we get more of a holiday. (I think, however, that, by not doing the personal care, parents miss out on valuable closeness to the young person but this is something we all have to judge for ourselves.) We have enjoyed these holidays more because of the company of these young people. Its more fun being in a larger group at mealtimes, swimming and relaxing round the pool. Allan responded well, particularly in the pool where he spent many happy hours as the centre of attention of the other guests in the hotel, so much noise was he making! He enjoyed having the company of the young support workers. It meant that he had young company to go out with on some evenings. We hope that, in the next couple of years, Allan may decide to go off on his own with his workers for a similar holiday.

Cool in the pool: Allan and his family were joined by his support workers on a holiday in Tenerife.

Partners Paper | Winter 2013 | Edition 02

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A duck to water
Terry Tynski says being a support worker may not suit everyone but its just right for him.
Ive been doing this job for 10 years. Sometimes that seems like a long time. Other times, its a blink of an eye.

Role call
The jobs people do for Partners
In each issue of the Partners Paper therell be a summary of one particular job. This time its the turn of:

Support worker
Role and responsibility
As a member of a small team, to support someone to live in their own home and have the lifestyle they choose.

Main responsibilities
To support the person with choices in their day-to-day life by using a balanced approach emphasising advice and encouragement (not making decisions on their behalf).

Nuts and bolts

Helping the person to: stay safe and well; cope with their feelings and relationships; manage the practicalities of daily living; be connected in their community; look after themselves personal care; maximise benets; budget and meet nancial obligations; shop and cook; get and keep a job; meet new people and open up new opportunities; work cooperatively with team members. Treat the person as an adult and unique individual, recognising their right to choose, their dignity, individuality, sexual preference, love, friendship and respect.

Terry Tynski (right): Andrews a young guy and Im getting on. But I keep up.

I mainly work with Andrew. Ive supported him since he moved out of his parents home a decade ago. When I went for the job, I wondered if I was too old. Andrews a young guy interested in young things football, gigs, dances. But Partners didnt rule me out and, as it turns out, I can keep up. I may be getting on but, in my heart, Im 18. Going to loud gigs is no problem. The other guys in the team are younger, so theres a good balance anyway. Its a job youve got to be suited to. If not, you wont last long. It can be demanding. My boss at Partners is always checking with me that Im not overdoing it insists that I have a work-life balance. I dont see it quite like that. Sometimes, I work six days a week not full days, of course. And I work some 24-hour shifts. I never really switch off. Im always thinking about things we can do to make Andrews service better. Its not a problem for me. I took to this job like a duck

to water and Im experienced enough to know what Im doing. Thinking back, its difcult to pick out a single high point. Every day Andrew greets me with a smile is pretty good. But the day he moved to his own place was really something. Everyone expected it to be a big challenge for Andrew but he just handled it. He took to it straightaway. Now, theres some routine an interesting one, though of drama club, sports, college. On the days theres no regular event, were looking for other things gigs by Scottish bands, for example. (Andrew likes Runrig and the Proclaimers.) Weve been twice to Krakow in Poland. Ive got friends there. Andrew loves it and were planning the next trip. So, being a support worker is great for me consuming, yes and probably not for everyone. But it will suit some people well. Ive recommended it and two of my friends are support workers now.

Qualities needed
The planning process for each person produces an individual list of qualities to watch out for and to avoid. For example: gutsy, able to loosen up and have fun, enjoys travel. Not brash, timid, a knowit-all.

Accountability
Answers to: team leader; person supported.

Partners Paper | Winter 2013 | Edition 02

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Labels are for jars

At Partners, we treat the labels people are given with a big pinch of salt. Diagnoses and labels stick to people for a long time. Often the labels were wrong in the rst place. But they are used whether we like it or not and its best to know what people mean when they use them. We continue our A-Z of labels.
Downs syndrome isnt a disease. People are not ill and dont suffer from the condition. They will have a degree of learning difculty. Many will read and write, go to ordinary schools and lead fullling lives. The average life expectancy for someone with Downs syndrome is between 50 and 60. Epilepsy is a tendency to have recurrent seizures (sometimes called ts). A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal message passing between brain cells. This disruption results in the brains messages becoming halted or mixed up each person will experience epilepsy in a way that is unique to them. Epilepsy is usually treated with anti-epileptic drugs.

Jargon buster
Jargon can be a useful shorthand so long as it means something. But, too often, the buzz words are all talk: new language to describe the same old practices. Here are a few words making the rounds. Co-production
A good thing. It means designing things from the ground up in partnership with the people who are going to use them. The trouble is that professionals sometimes feel obliged to say they are coproducing when theyre not.

Depression
Most people get depressed sometimes feel low for a few days. Clinical depression, though, is a serious condition. It affects people in different ways. Some people have lasting feelings of sadness and hopelessness. Others lose interest in things they once enjoyed. Others are tearful or suicidal. Many feel acute anxiety. Sleeplessness, loss of appetite, aches and pains are some of many physical symptoms. The GP is rst port of call for someone who is depressed.

More information:
www.downs-syndrome.org.uk

Dyspraxia
This is how the Dyspraxia Foundation defines it:
an impairment or immaturity of the organisation of movement. It is an immaturity in the way that the brain processes information, which results in messages not being properly or fully transmitted Dyspraxia affects the planning of what to do and how to do it thought to affect up to ten per cent of the population. Other names for it include Developmental Co-ordination Disorder (DCD), Perceptuo-Motor Dysfunction, and Motor Learning Difculties. If you have a learning disability or autism it doesnt mean you are more likely to have dyspraxia. In fact, professionals are more likely to explain behaviour as being due to the learning disability and wont focus on dyspraxia as an explanation.

More information
www.epilepsy.org.uk

Eating disorders
anorexia nervosa, when someone tries to keep their weight as low as possible, for example by starving themselves or exercising excessively bulimia, when someone tries to control their weight by binge eating and then deliberately being sick or using laxatives (medication to help empty their bowels) binge eating, when someone feels compelled to overeat. Eating disorders are often blamed on the social pressure to be thin but there may be other factors like depression, low self-esteem. substance misuse, sexual or emotional abuse or the death of someone special.

Consultation
More of an old chestnut than a buzz word. It can mean anything from listening to lots of people and doing what they want to asking two people what they think and ignoring what they say. Either way, youve consulted.

The most common eating disorders are:

Outcomes
This word is featured in so many plans and policies outcomefocus; outcome-driven; outcomeorientated. An outcome is what happens in reality, what you will be able to see as a result of what you do. If we support Terry to nd more friends, the outcome is either that Terry has friends or doesnt.

More information:
www.mind.org.uk

Downs syndrome
Information from the Downs Syndrome Association:
Around one in every 1,000 babies born in the UK will have Downs syndrome. There are 60,000 people in the UK with the condition. Downs syndrome is caused by the presence of an extra chromosome in a babys cells. It occurs by chance at conception and is irreversible.

Outputs
Dont confuse your outcomes with your outputs what staff do to try and get an outcome. As in all things, words are cheap. Its what we do that counts. will underpin our outputs. Remember: A little less conversation, a little more action

More information
www.dyspraxiafoundation.org.uk

Epilepsy

This is how Epilepsy Action defines it:

More information
www.nice.org.uk/guidance/CG9/ publicinfo/pdf/English

Forget: Outcome-driven targets

Partners Paper | Winter 2013 | Edition 02

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Health and safety news

Stay warm, stay safe Your car
And the Its a tough time of year. le. A cold snap weather is unpredictab d it can be easy can happen any time an ulties. So take a to nd yourself in difc few precautions. forecast and Check the weather ink about road conditions and th alternative routes. port instead. Consider public trans your journey. Allow extra time for you are going Tell someone where be there and and when you expect to back. is ready for a Make sure your car r. journey in poor weathe phone. Charge your mobile

Driving on ice and snow

Keep warm indoors

your rooms, If you cant heat all warm in the keep your living room oom before day and heat your bedr bedtime. keep you warm A balanced diet will st one and healthy. Have at lea nutritious, hot meal a day. Soup is make or buy. warming and cheap to ing: t-shirts and Wear layers of cloth base of your underwear to keep the at you from back warm. This will he the core. lks and catch Stay active take wa s youve up on the household job been putting off.

Emergency kit

nce is ten times Your stopping dista greater. pull away. Select second gear to us that the road Its not always obvio as ice on the is icy. Look for clues such ndscreen. pavement or on your wi your wheels will Dont brake heavily Change down lock and you will skid. w down. through the gears to slo roof of the car Clear snow from the n slip down before you set off. It ca reen. and block your windsc

er Ice scraper and de-ic ries Torch and spare batte s, blanket Warm clothes, boot ink in a thermos Food and a warm dr ask a good grip Shoes or boots with First aid kit diversions Map for unplanned ovel for snow. Jump leads and a sh

Public transport

nsport, When you use public tra itions, take a dress for outdoor cond acks and water. mobile phone, carry sn for delays or Check with the operator leave. disruptions before you

Energetic and passionate

Care Inspectors impressed with Partners for Inclusion
The inspection of Partners services, completed by the Care Inspectorate in October 2012, concluded that the organisation is an energetic, passionate provider determined to maximise service user potential and independence. They continue to operate at a very high level
The Inspectorate graded Partners quality as six excellent for care and support; ve very good for stafng; and six for management and leadership. The report said Partners (PFI) did many things well including: meticulous planning highly detailed support plans feeding into equally detailed working plans full involvement of service users, their

families, signicant others at each stage documented evidence conrming each service was built round genuine involvement and partnership working ensuring the service user remains at the centre of the process at all times painstaking detail in every aspect of the individual services provided creating a philosophy, purpose, enthusiasm and energy that is displayed by staff throughout PFI.

The Inspectorate also noted that PFI stated very clearly that there was always space for improvement and encouraged service users, families, carers and involved personnel to comment on the service provided.

Partners Paper | Winter 2013 | Edition 02

Illustration: Cathy Balme

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Partners Rich-To Skint Scale: the bedroom tax

The UK government is reducing housing benet for those with a spare room.
Josie Bloggs left hospital in 2003. She moved into a local authority house selected for her by the authority. The house has three bedrooms - one for Josie, one for sleepover support and one spare. Josie had full-time, 24-hour support. Over time, she has worked hard to overcome her anxieties and build her skills. She has been so successful that she now needs much less support and doesnt have sleepover support at all. This represents a big saving to the local authority.

Welfare benefit changes

Laura Wardrop looks at the big changes in welfare benets coming into effect between 2013 and 2016.
For the majority of the people Partners support, changes will start in April 2013. The main changes will be:
Everyones benets will be reviewed. Each persons benets will be paid in one Universal Credit. Disability Living Allowance (DLA) will become a Personal Independence Payment (PIP). Everyones DLA will be reviewed. The criteria for award of PIP will be much stricter. This means some people may lose money. Anyone who loses high rate mobility and has a car will lose the car. People on Incapacity Benet will move to Employment Support Allowance (ESA). There will be a review and it is possible some people will receive a lower award and lose money. The criteria for Housing Benet are changing. Benet will be assessed on occupancy levels. This means the number of bedrooms paid for by Housing Benet will be related to the number of people who live in the house. There are additional rulings in place for disabled people who need sleepover support. But there is an effect on people who have increased their independence, no longer have sleepover support but still have a second bedroom: they will have to contribute to their rent because Housing Benet wont pay for the extra bedroom. This may also be the case for people who have an extra chill room or den. We encourage people we support and their families to put their names to the various campaign groups which are contesting these rulings and highlight how vulnerable they may make disabled people. These are uncertain times for people and I know everyone will be worried. We are trying to keep people as safe as possible and maximise their benets. We are letting everyone know individually what it means for them. I know everyone will be worried about this but please be assured we will do everything we can to maximise the benets of the people we support. We will keep you informed as we go. Dont hesitate to get in touch If you have any questions: laura.wardrop@partnersforinclusion.org

Save a little....
So far so good but here comes the bedroom tax, the new Housing Benet rule on underoccupancy. The local authority will save 21.87 - money it wont pay out to Josie because she has extra bedrooms.

...lose a lot
The authority may save a few pounds but what will be the cost that another department will pick up if she needs more support? Josie relies on benets. She already pays 91.12 as her contribution to her care package. She has done so well in reducing her support (saving, dont forget, lots of money for the local authority) because she feels safe in her home. She is known in the area. These are the factors that make her more independent. Take away her house and .... well we dont know what will happen. But it doesnt look good.

On Partners scientific Rich-ToSkint Scale, Josie is heading for skint - so is the local authority.

Partners Paper | Winter 2013 | Edition 02

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My week in pictures
Im Peter. Ive been supported by Partners since 2004. When you look at my pictures, you will see that my week is very busy. Im involved in my local sports club and I enjoy meeting with friends. Im planning a holiday abroad to get a bit of sunshine.

Monday

Tuesday

Wednesday

Ok, not y0ur usual Monday but, when youre a big Elvis fan and youve been to Graceland, youve got to show off the ticket. (Monday is shopping day.)

Like all my days, Tuesday is busy. I usually start off with football and training with Ayr United staff. Dance the night away at the disco.

Football again - this time at Citadel Sports Centre. Lunch with friends at the Malt Cross. Sutherland House in the evening for more dancing.

Thursday

Friday

Saturday

Sunday

I do what I fancy on Thursdays - maybe a bit of baking. I often nip to the pub to catch up with friends. Sometimes you need a rest from all the activity.

Every week is different but Friday is denitely bowling at LA Bowl in Ayr. I go with friends and we always enjoy a drink afterwards.

Youve probably gured out by now that Im a sociable person. I like to meet up with friends for a drink when I can and Saturday is no different.

Sunday is a good day for rummaging around in the market. I go with friends and we usually have lunch together afterwards.

Partners: 12 years of success but what next?

Doreen Kelly says Partners Board is asking What should we do in the next decade?
In its rst 12 years, Partners has helped people to escape institutions and get a life that makes sense for them.
Just Connections and, in Plymouth, England, theres Beyond Limits. Partners cant rest on its laurels, though. The Self-directed Support Bill, will change what is expected from Partners in a big way. The nancial climate and benet reforms will also have a huge impact. So we need to take a step back and think about what we do next. This is what were thinking:
Doreen Kelly: Step back and think whats next.

Weve told others what weve learned in the hope they might do something similar. Weve helped to start two organisations that use Partners approach locally, theres

We want to help new, small personcentred organisations to grow. There are spin-off benets for Partners: a bigger network of likeminded organisations that can support each other and share resources.

Our core reason for being is to help people escape institutions and get a life that makes sense for them. We want to help more people do this without Partners getting too big. We believe the people we support can continue to grow and develop and, as this happens, they will expect different things from us. Some no-holds-barred thinking is throwing up interesting ideas. One is that Partners might have two arms: one that supports people who only want a little help and one that supports those in greater need such as people stuck in institutional settings or not getting the right service. If you have ideas about what Partners should do next, please contact: doreen.kelly@partnersforinclusion.org