No barriers Celebrating 40 years of The Action Group 1976-2016 3 Foreword by Brian Cavanagh

Contents “The Action Group has played a huge role in transforming the lives of people with disabilities and their families.“

Foreword by Brian Cavanagh 03 It is difficult to believe that The Action Group support and employment opportunities for is 40 years old! But for those who are younger people with learning disabilities. than 40 it is more difficult to understand what Bob Taylor 04 the world was like for people with learning From my perspective The Action Group is disabilities. Services were traditional with more than just about providing services and Martin Rennie 06 few options, and you were grateful for what support, important though that is. It has been you received. about challenging the limiting assumptions Joan Griffiths 08 that policy planners have often made; and Area 5 Action Group as it was then called empowering parents and carers to demand set out to change that. The rest, as they their rights from statutory services. It has Our history 1975-1987 12 say, is history. also demonstrated alternative models of what is possible. Above all it has been Robert Farquharson 18 I first came in contact with The Action Group advocating for the social and economic in 1982 as a new Councillor, and over 17 years rights that other citizens take for granted. Our history 1988-1999 24 on Edinburgh City Council, I had the honour of being associated with The Action Group. The Action Group has played a huge role in transforming the lives of people with Linda Tuthill 32 As Chair of Social Work in Edinburgh City disabilities and their families, supporting Council, I experienced them as a challenging thousands throughout its 40 years of Our history 2000-2006 36 and demanding force for change. The existence. The founding leaders, the combination of the lived experience of committee members and staff have changed Cameron Crescent 38 committee members and a dedicated the way people think of those with learning professional staff was a valuable source disabilities, and also how people with Trip to Arran 39 of advice, guidance and sometimes learning disabilities think of themselves. uncomfortable truths. That long journey from supplicants to full Our history 2007-2016 40 Their ability to engage and influence the City citizens is not fully complete. Yet it is no Council helped shaped policy change toward longer a dream, as it was 40 years ago, Looking back and forward 48 community based services and a recognition but rather an inevitability. of the need for significant improvement in the experiences and entitlement of people with learning disabilities. The Action Group has much to be proud of in its role in transforming services in Edinburgh. Brian Cavanagh is a former Councillor, Chair of the The shining example being their key role in Social Work Committee, COSLA spokesperson and the reprovisioning of Gogarburn Hospital and Chair of NHS Lothian. He is also Managing Director provision of new approaches to housing of Calibrate Ltd 4 5 Bob Taylor Bob Taylor

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development of services was very central Personally, the whole journey over the past to the way they worked. 40 years has been both exciting and “Personally, the whole journey inspirational. From the awe inspiring This is very different from today’s social work contribution of the first group of very services which have become increasingly determined parents, to the current major over the past 40 years has been process driven. Back in the 70s such was the provision of services, it has been and is low level of services that creative new ideas a humbling experience. were inescapably essential, if any difference both exciting and inspirational.” was to be made. The Action Group now, as a major provider of a range of services, has a significant responsibility to not only keep the services It was also coincidental that going but adapt and change in the face of new and ever present challenges and the particular group of staff in a highly competitive environment. The Action Group was formed in the mid this deficiency by deciding that they would in Area 5 were a free thinking However I believe The Action Group is an 1970s in response to the very poor level of only develop services in consultation with group who shared common organisation founded on strong principles, services available to families caring for a those who might use them. A ‘radical’ enabling it to put in place the strategies son or daughter with a learning disability. approach in the 70s! values and were not afraid required for another successful 40 years. At that time there was only one adult male Ros Wass, a student on placement with the to take risks to explore new It is so important that groups such as ours hostel catering for 20 men and a small succeed, as many, many people depend on number of adult training centres, as they team, was asked to establish how many ideas and implement them. families caring for a son or daughter with not only our survival but our ability to were known then. learning disabilities lived in Area 5. 320 provide the best possible level of service. Also at this time, throughout the country families were identified and asked to attend 1976 was just the beginning. The Area 5 It is my hope that in future younger people there were a number of large hospitals a meeting to examine what issues they had Action Group parents, with staff assistance, and their families will participate more fully for people with learning disabilities, some and what their concerns were for the future. soon became established and with their in the same way as their antecedents have catering for up to 2000 people. In Lothian It was at the second meeting of families that own rich basket of resources and personal done, because it is through this contribution Gogarburn Hospital had 600 beds and St the Area 5 Action Group was set up and the experience took direct action to meet their that we can guarantee the continued success Josephs in Midlothian some 120 beds. first committee of parents formed. goal of improved services, so that they and of The Action Group. future generations did not have to experience Basically families had the choice of a lifetime What was immediately apparent were the a dearth of provision. of providing care or had to consider placing strong feelings that the previous neglect in their son or daughter in hospital. service provision could not continue, and From direct community action to a major they had a determination to seek major provider of services has taken the best In 1973 the Lothian Region came into being improvements in securing options for positive part of four decades. The situation now, and with it a significant investment by the care for their sons and daughters. They were with many services available, bears no new local authority in social services. Social Bob Taylor united by a sense of common experience, relation to the absence of any real choice work teams were reformed and Edinburgh feeling badly let down and, significantly, for families in the 70s. Original Group member and current was divided into 10 separate teams, one of were not prepared to accept the level of Chair of the Board of Directors which was Area 5 covering the Craigentinny services available. Throughout this time many people across and Portobello area. Scotland have worked tirelessly to see the In addition the staff of the area team were closure of all the large institutional hospitals. One area in which previous social work highly motivated to develop new services and In their place a range of person-centred services had had a low level of involvement social action and change were very much part housing services, along with full community was that of people with learning disabilities. of the agenda. While individual casework was integration, have been developed. People’s The newly formed Area 5 team approached a core activity for staff, community lives have been transformed, allowing them to become positive members of the community. 6 7 Martin Rennie Martin Rennie

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In these early days the group was run entirely housing in Leith. Asked if Kes is enjoying life “We pushed the social by volunteers; one of them in the early years these days Martin replies immediately: “He was Nigel Griffiths, Labour councillor and, has always enjoyed life!” And it sounds like he later, MP for Edinburgh South. “He always said makes the most of it too: “As an independent workers and the social he could never believe the energy we parents person he goes skiing, sledging, abseiling, had. I’d leave him notes at 8am; I’d have been parachuting… parachuting was my hobby for in and gone to work at that stage”, says a number of years and Kes did a tandem dive workers pushed us.” Martin, who adds that the group also made recently. We’ve never been frightened to let strides because it concentrated on campaigning him do what he wants to do.” for change as well as fundraising. Martin adds: “Everyone who’s been involved with The Action Group – whether they volunteered or were members of staff – I remember a house on Hillside should be proud of what they’ve achieved “If I look back to the few parents down in We sold furniture and clothing to make Crescent had belonged to a over the years.” Lochend Primary School, discussing what we money, and later we got our first premises recluse who had kept parrots, were going to do and how we were going to at 18 London Road.” do it; to remember all the milestones and see snakes and so on. Once we had the organisation as it is now…well, it does The group started various activities for the scraped inches of animal and seem remarkable,” Martin Rennie reflects. members, many of which proved very successful: cookery classes, a camera club, bird poo off, we got the A businessman and father to Kes (now in his day trips and picnics. The top floor had furniture out! 40s), Martin was one of the founders of Area accommodation for volunteers to stay with Martin Rennie 5 Action Group. In fact ‘founder’ is probably members’ offspring – an early example of Original Group member and Chair of the Board 1978-1980 too grand a word – this was a small group what is these days known as respite care. “We pushed the social workers and the social started by parents who had their children’s They used Martin’s company vans to do workers pushed us. They would suggest ways best interests at heart; human beings we could go forward. We used to get asked harbouring a frustration at the injustices in a house clearances. “We used to advertise to do house clearances and came across some for our opinions on a lot of things, like the society where their offspring were too often closure of Gogarburn. They appreciated we marginalised or ignored. amazing bits and pieces, jewellery and artefacts. I remember a house on Hillside were at times a problem for the department, When they first met with social workers there Crescent had belonged to a recluse who but at the same time fighting for what we was no detailed blueprint for how things had kept parrots, snakes and so on. Once believed were the rights of our offspring. could change; just a desire that they must. we had scraped inches of animal and bird “There were times you wondered whether you poo off, we got the furniture out! “At the meeting, the social workers – Bob were going to be able to pay the wages of Taylor was there, Dickie Alexander – “Bob Taylor, myself and a few others used to the few staff we had. Funding was always an suggested we try to form a group to fight for do these clearances three or four nights a issue. Luckily as the group got bigger, Robert our children’s rights and assistance,” Martin week. Somehow it was always top flats! But was able to research grants that were recalls. “Originally it didn’t have a name and we managed to have a beer at the end of the available, and he was very good that way.” then, because it was formed in Area 5 of the evening so it was a good social night too.” Martin parted ways with The Action Group Lothian Regional Council, we called it Area 5. Because they all believed passionately in in the mid-90s. Remarried and semi-retired, “One of the first things we did was try some their cause, a seemingly unstoppable energy these days he spends much of the year fundraising. We used to have the halls at the was unleashed, which still flows through the travelling around the Continent, returning Abbeyhill Church at the bottom of Montrose organisation today. every few months to Scotland to see Kes, Terrace and London Road, which is now gone. who lives with a flatmate in supported 8 9 Joan Griffiths Joan Griffiths

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there who, for all sorts of reasons, are not Things are so different now. able to speak up. So I thought, you have to “We owe a great debt of do it for them as well. So The Action Group You get some people who look – wasn’t just about our sons and daughters, it gratitude to those first you will always get that – but was about making life better for everybody.” the world is so much better. Thomas moved into his own flat at the age of 26 and he has a full and active life, with parents who took that leap.” support from his staff team. “He’s very happy. That things have changed to such an extent in He loves his independence,” Joan adds. the intervening years is in no small part down to The Action Group. Joan soon became an instrumental member of The Action Group, doing talks around the “The original parents decided at the inaugural country to medical students about what meeting they were going to be a campaigning parents of children with learning disabilities When new support staff start are working caring for children in their 60s, who had organisation, to get a better deal for our folk,” expected – “Carer organisations do these with Joan Griffiths’ son Thomas, she tells never had a life. You had families where the Joan explains. “And it was about making sure things now but we were doing this in the 70s, them to let her know everything that’s husband or wife never went out together, that people knew people with a learning when it wasn’t heard of”. happening. “I’ll hear about it eventually, because looking after their son or daughter disability lived in their communities.” because everyone knows Thomas!” she was their whole world.” She puts the success of The Action Group explains. “Neighbours, shopkeepers, Joan joined around a year after that first down to a mix of things: continuity, flexibility everybody. He’s been living in his flat So what was it like as a parent living in meeting. She credits The Group for helping and personal connections. since 2001 – when he came here he loved this climate? her at a personal level – from giving her the it and has never looked back – and when confidence to battle the system and fight for “Unlike other organisations it is parent and “When Thomas was born there was no Thomas’s rights, to day-to-day support, such carer-based. My son John is on the board you’re living in the community people do indication anything was wrong, and at first get to know you.” as a fellow members taking Thomas on because he recognised what The Group had the news was devastating. But we knew we Saturdays so Hearts fan Joan could go to done for us as a family. A lot of people on the In 1975, when Thomas was born, the climate wanted him to be able to go out into society. away games with youngest son John. board are carers or relatives and I do think was incredibly different. So we took him everywhere. Thomas never that is what keeps the ethos the same. went to special clubs – I know lots of people “We were fortunate at that time that we had a “The 1974 Education Act [which required used them and I wouldn’t criticise them for couple of social workers in the Craigentinny Scottish authorities to provide for the that choice – but we as a family chose not to. office who were really great – Bob Taylor, who education of children with learning is still on the board, Els Footman and Ivan Over the years we’ve had times disabilities] had just come into being. “Thomas is profoundly disabled. He is Middleton. Which was crucial because it gave when funding has been really Prior to that our children were seen as registered blind, has hearing difficulties, encouragement to The Group.” uneducatable so they didn’t go to school. and is on the autistic spectrum. Loud noises, tight. We’ve had some really babies crying and so on – he just can’t handle With support from members of The Group, hard decisions to make at “In adulthood there was, I think, one hostel it. We used to go to The Jolly [restaurant] she secured a place for Thomas at The Royal in Edinburgh, Wedderburn in Musselburgh on Elm Row and the staff were so wonderful Blind School and he was the first person to times as a board. and there was Gogarburn. Parents at that with him. attend as a day pupil rather than a boarder. time had a big fear: what’s going to happen when we’re not here to care for them? It “But you did get other people sitting near us, Times have undoubtedly been tough over the was Gogarburn. And there was nothing else. tutting and saying, ‘you shouldn’t have him years, but Joan says she never thought of here’. That is hurtful. Thomas didn’t hear it or giving up. “Everybody laughs when I say this, “In Edinburgh and it would have been similar understand it but we did. I’ve heard people but I was a very quiet person. When I had right across the country, there were virtually say he should be locked up. What they meant Thomas I needed to battle to get things for no services. We had parents in their 80s was, he should be in Gogarburn.” him, and I realised there’s all these people out

10 Joan Griffiths

“But our members always trusted us to do Joan adds: “Looking at The Action Group what was right for The Group. And part of now it’s unbelievable. The group started that was, we were parents, we were carers, with a handful of parents, no money, nothing. so we knew what was right. Now we have an annual turnover of £10 million, hundreds of staff members and a “Robert came very early on. As the group huge amount of services for people, from grew Robert’s role evolved and changed from the cradle to the grave. Coordinator to Director to Chief Executive. I was Chair for 33 years. And I do think “It is an outstanding organisation and we having that stability has helped. Some people owe a great debt of gratitude to those say it’s not good to have the same faces all first parents who took that leap. A huge, the time, but really we were quite up for huge leap.” changing direction and looking at things. We weren’t stick in the mud folk who said, ‘we’ve a’ done it this way, we can’t do it any

other way… ‘ That was not the ethos of Thomas is very happy. his loves He independence The Group. It was and still is about change and innovation. Joan Griffiths MBE “Society changes and it’s vital, while keeping Labour Councillor for Craigentinny / the same ethos, to stay innovative and think: Duddingston. Chair of The Action what is right for this time?” Group Board 1980-2012.

“Thomas is very happy. He loves his independence.”

Thomas and Joan

“Looking at The Action Group now it’s unbelievable. The group started with nothing, and we now have an annual turnover of £10 million.” 12 13 Our history Our history

1975 1976 1977 The Board of Directors 1978 - Rosamund Wass, a - First meeting with parents - Area 5 Action Group, Bob Taylor, current Chair of The Action Group - Gordon Riach steps down student on placement is held and a group is operating out of Abbey Board, says: as Area 5 Action Group with Area 5 Social formed, with support from Church, is up and running: “When Area 5 Action Group became a company Chair, and is replaced by Work Department of Area 5 social workers. producing a newsletter; limited by guarantee, it needed to elect a Board Martin Rennie. Lothian Regional Council, running groups and activity - It is agreed paid staff of Directors. The Board’s main function is to undertakes a survey of clubs; and raising funds - In April, coordinator members are “needed to ensure there is proper governance of the the number families in the largely by selling furniture Peter Lewis is replaced undertake all the group business of delivering quality services. area including someone and second-hand clothes. by Robert Farquharson. wanted”, and two posts with a learning disability. All of this is the less glamorous side of running are created. 320 families are identified - The group achieves press a business but the volunteers who make up the and a picture appears of and radio coverage. Board are an essential part of keeping the work “consistent neglect by of The Action Group moving along successfully. the statutory services, and a great deal of anger Staff report to the Board and Directors and bitterness at the participate at different levels throughout the poor prospects for their organisation. It must be remembered Directors children”. are unpaid volunteers and give freely of their time. Their motivation comes from the desire to see that quality services are developed and maintained and that there are business plans in place to take the organisation forward.”

The original group logo

The Action Group Board of Directors in 1991

What The Action Group means to me... What The Action Group means to me... “New experiences and “Living life to the full.” new opportunities.” Caroline Sheree 14 15 Our history Our history

1979 Advice Services 1980 Gordon and Brendan – Two of -  Fundraising is underway Advice Services which make sure people have - Joan Griffiths is elected the first Action Group tenants access to their rights and entitlements – and for housing at Kemps Chair of the Board. Gordon and Brendan were born, in the same enough money to live – have always played a Corner, Restalrig. ward, in the same hospital, on the same day, key role in The Action Group’s vision and mission. - The Group move offices -  The 1979 newsletter to London Road. 15th July 1954, and are lifelong friends. They declares that “The ideal Mark Brough was a member of the Advice team were brought up in the same area and both future [for the group] will for many years and this is what he remembers - Welfare rights campaign families have been involved with The Action probably be in creating from his early days: is launched to encourage Group since its early days. Gordon and Brendan all people attending Adult moved in together to The Action Group’s first a balance between two “When I joined it was still quite a small equally justifiable roles – Training Centres to claim supported accommodation project in Restalrig organisation; less than 20 staff and in the ‘head’ support benefits. back in the early 1980s, and now live in a house that of a service provider office only 5 or 6. I remember going for my and that of a campaigning overlooking the sea in Joppa. They are interview at London Road, sitting on a sofa with supported by The Action Group 24 hours a day, pressure group”. holes in it and foam poking through! My office which gives flexibility to do what they want, had a computer with a black screen and a little when they want, but also to adapt to their blinking green dot where the cursor was, and changing needs. my filing system was a little box of index cards. Their busy lives include going to a Thursday It felt very much like a project with people who club at a local church, their favourite part is were really into the cause and committed, a leading the prayers; and going to Action Group classic voluntary organisation, and it still feels discos when they look forward to taking the like that I think.” microphone at the end to thank everyone Jo McLaughlin picks up the story: involved. From day one they have lived life to the full with the support of many Action Group staff “The model from the early days has carried on The new office premises over the years and, even as they get older, their on London Road throughout - we proactively contact people and zest for life shows no sign of slowing down! do home visits and so on and a lot of times we are the first service going out to see people. The Action Group has always been committed to advice services because we reach people who may be isolated and not have the support they need. The service has grown massively since I joined in 1991…. There are 25 people in the advice team now. Our biggest area is Welfare Rights; then Housing; Black and Ethnic Minority Service; and Money Advice. There’s always been a strong commitment to the quality of advice we offer, and it retains the energy that was there when I started. It’s not grown just in terms of “that funding is out there, let’s apply for it”; it’s been a case of Brendan as a young man Gordon with Team identifying need and responding to that.” Manager, Mark 16 17 Our history Our history

1981 1983 1984 1985 1986 1987 - Work begins on the new - Area 5 Action Group - Lothian Health Board and - Area 5 Action Group - North Edinburgh Action - Over summer a total of 64 housing at Kemps Corner. publishes series of Welfare Social Work Department is renamed North Group contributes to people have camping and Rights Guides, including develop ‘The Lothian a report – ‘Towards caravan holidays, at The - A campaign is launched Edinburgh Action Group. ‘Moving to Lodgings’ and Strategy’, which will lead a ten year plan to Group’s caravan in Dunbar, to improve the range of and ‘Notes for Social to the transfer of care from close Gogarburn and and in Fife, Ettrick Water services in Scotland for - The group encourages Workers’. The price is hospital to the community. transfer services to the and Nine Mile Burn. people with Learning parents to attend £2.50 for a set of 7. community’. Disabilities. - The Group joins Lothian meetings about The - Hospital patients are given - Stephanie Cox, a member Play Forum, funded Lothian Strategy. - The Disabled Persons Act a 15p increase in their of the cookery class run by by the education is passed. pocket money, bringing Mary Fischbacher, reports department, allowing them - After 6 months of their weekly allowance to 1982 on a productive session to employ a playleader planning, one volunteer, £7.50. where the group makes and cover expenses. one staff member and - Votes for patients (1959 - There are plans to develop vegetable broth, spaghetti Mental Health Act) - A new publication, three tenants move the ‘core and cluster bolognese and coffee cake. comes before the House Action Mag, is launched into a flat at Bangor schemes’ which provide of Commons. - The Sitting Service is by the group. Road, Leith. accommodation in ordinary - House at Kemps Corner successfully up and housing as an alternative to is fully staffed and has running, with a management hostels and hospitals. 10 volunteers. committee, a draft constitution and a voluntary organiser.

The new name and logo The 1987 newsletter cover

The Cooking Group 2016

What The Action Group means to me... What The Action Group means to me... “I like that I choose “Good friendly people.” what I want to do.” James Angela 18 19 Robert Farquharson Robert Farquharson

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idealistic amateurs. It wouldn’t have worked the forefront of what was then becoming a if we had not delivered a good service. But bigger effort, again helped along by some “There was anger, fear, a we did.” people within the Lothian Regional Council Social Work department, who were trying to Its success sparked the provision of more champion the whole idea of moving people housing and supported accommodation mixture of things, but that out of Gogarburn.” opened at locations including Bangor Road had to be laced with hope...” and Findlay Gardens. Robert says the timing of Kemps Corner was We were heavily involved in fortuitous, as momentum was building around the idea of community care and the closure that, I was in the steering of long-stay institutions, including Gogarburn group and we were one of on the outskirts of Edinburgh. about 12 voluntary or housing When people recall the beginnings of Area describe that first meeting as a dam bursting. “The argument was that people should live organisations that were part 5 Action Group and the climate into which it There was anger, fear, a mixture of things, but in the community and be supported in the was born, a phrase offered up more than that had to be laced with hope. community. It was significant that eventually of the whole joint effort to once is “like a dam bursting”. It’s a powerful everyone got behind the closure of bring about the closure of description and you certainly get a sense Gogarburn. This was quite exceptional: the hospital. of the mix of sheer frustration with the We could do things like voluntary organisations, councils, the NHS, status quo, and the heartfelt desire for the Scottish Executive, all working together something better. challenge prejudices, develop to bring about substantial change.” Another innovative service Area 5 Action As the small, grassroots movement gathered services, but had progress not It took time to get to this point; Robert Group started delivering in the early 80s momentum and started to grow, so clear been made it would have been recalls “not wanting to rock the boat” was was welfare rights and advice services. navigation, focus and funding became ever a phrase he heard a lot in the early days. “I can’t off the top of my head think of more crucial components. hubris. And what happened But slowly there was a shift. “Change was anybody else then who was doing welfare in the early years was, things resisted, accepted and encouraged,” he rights advice specifically tailored for Paid members of staff were sought and one began to happen… smiles. “The professional view began to somebody with a learning disability, or of the first to join was Robert Farquharson, change and there was a momentum, an families caring for someone with a learning as a coordinator, in 1978. An Edinburgh idealism, and then the economics of it. One disability. It was the start of something University arts graduate, he had spent two of the things that got through was that the that was very specialist at the time. years on the Hebrides doing building work An early milestone was the opening of supported housing at Kemps Corner in cost of keeping hospitals open was going to and farming, and had just returned to his rise exponentially, compared to the cost of And I remember in the early years of doing home city when he spotted the job advert. Lochend. This was a major step forward it, although we were predominantly working not only in the practical provision of new supporting people in the community. That economic tipping point was reached. with people in Edinburgh, we got enquiries “There were people on the committee and accommodation, but on a moral level too. from people in England who had somehow by then some work had been done. I brought At this time, rather than being visible “And things then began to take off. We heard about us. Someone from Shetland a fresh mind and a blank piece of paper, members of the community, many thousands did as we always said we would do, in the wrote to us asking for help. And we tried with no pre-conceived ideas. So it was a of adults with learning disabilities lived in course of setting up these new houses, to deal with these enquiries. Welfare rights combination that worked well. overcrowded hostels or hospitals across which was to try to do things for people advice wasn’t new but to tailor it to a group the UK. “We were a ginger group, a parent group. It leaving hospital. So by the end of the 80s, of people who had particular difficulties was about giving people a forum to talk and “Kemps Corner was something very new and early 90s, we set up the houses in Bryce was new. raise their voices, people who had been fairly untested,” Robert says. “We were putting the Avenue and Hamilton Terrace, and by doing isolated and weren’t expecting much. People safety and future of people into the hands of that we were positioning ourselves to be at 20 21 Robert Farquharson Robert Farquharson

“That service has been a constant right up “And if people are not supported well, then all until the present day – figures for last year that attempt to create an organisation that is to the end of March (2016) show the advice seen as credible and capable of doing more, team secured more than £2 million pounds would get fatally undermined if there were worth of additional help for families and doubts about how well you were doing.” individuals with a disability. That’s a record He pauses and adds, “And we were kind of for us.” under pressure to do well because when it’s someone’s son or daughter and you’re seeing It was also in the 1980s that The Group them regularly, or they have easy access to began to explore the possibility of a somebody who’s on your board because supported employment service. They secured they’ve known them for years, I suppose Urban Aid funding for Real Jobs Pilton, there is a particular pressure to do well.” which eventually became Real Jobs Edinburgh. Robert Farquharson, CEO, and Joan Griffiths, then “Parents were saying, we want some kind The reciprocal relationship between the group Chair of the Board, in 2004 of meaningful occupation for our sons and and the social work department at Lothian daughters, and that they weren’t particularly Regional Council worked well, though some happy with the Adult Training Centres professionals’ attitudes in the early days also provided by the Council. proved to be another barrier to break down. “I don’t think anybody knows why they “What we saw from then on was that same ”We had support from Lothian Regional introduced it but they did,” he recalls. kind of embedded attitude which was, we’re “We were starting to hear ‘I’m really bored Council, with some people in social work “Money was secured in the name of people never going to give any inflationary uplifts at my centre, could I get a job….’ People such as Bob Taylor, who were trying to be we were supporting to go towards their and we’re going to put pressure on these were supposed to be learning skills but were quite innovative and trying to champion new housing and support costs. In Edinburgh organisations to do things cheaper. The learning them in an artificial environment. approaches to things, new ways of working, people were encouraged to apply for it, DHSS money, the NHS money, the Transitional There was work being done of a kind, but it so it was always the case we could make there were plenty of people who needed Housing Benefit money had started off in was just things like putting stuff into bags. alliances with people like that. accommodation of their own, who were in different places and had come into control There were lots of things wrong with it.” difficult circumstances or in accommodation of councils who then applied their usual ‘our “The kind of people who were seeing it in a already but finding it difficult. So it was priorities come first’ attitude; our staff come One of Robert’s briefs from early on was to more innovative way weren’t hidebound by research available funding and grants. And possible to redesign some of the bigger first before we allow any extra money to go thinking as some people in councils did and houses, allowing people to live on their own.” out, to allow a pay increase to staff in these as with any charitable organisation, securing still do. That is, if it’s going to be done it’ll that funding has always been a challenge. other organisations. People would deny that be done by us. We’re the ones who provide It proved to be a double-edged sword that was what was going on but at the end “Oh it was always competitive in terms of services, not these amateurs. So you were however, and as services and demand of the day it was.” getting funding. If you succeed then you’re always fighting against that attitude, increased, suddenly funding was cut. as well as the usual fight to get some of One of the toughest times for The Action growing a strong culture and that reinforces “So long as we could access it you were itself. But it goes on from there; you can’t get the resources.” Group came when the tendering process everybody’s pal and they said ‘go for it!’. was brought in by City of Edinburgh Council the money and not deliver. That has to be Another milestone that stands out for Robert Then the money was transferred from London fulfilled, you have to be seen to be delivering in 2008. And Robert does not hide his disdain was Transitional Housing Benefit; brought to Scotland and councils became in control at the sequence of events that followed. in the eyes of the funders. in in the 2000s, this was a major source of it. The cut in Edinburgh and the Lothians of money from Central Government that was high, 20 per cent. “Procurement regulations came in which enabled new housing and support services were applied in Scotland, without anybody to be set up. stopping to think that maybe this would What they subsequently did was not be a very good idea in something like social care. With no regard for the impact apply that cut with a real vigour this would have on the people who used without attempting any real these services and their families; no regard mitigation of it. That had a for the history of how all of these things had “You were always fighting against actually been created, despite the challenges severe impact, which kicked in at times, to the benefit of citizens of that attitude, as well as the usual around 2005-6. We had to make Edinburgh and the Lothians. a lot of managers redundant. fight to get some of the resources.” 22 23 Robert Farquharson Robert Farquharson

“It was like people got onto this procurement Financially, The Action Group service users However, things could be looking up: the 3% have got Gold standard. You can’t reach it bandwagon; there was a blank sheet of paper made up around a third of the total amount Scottish Government has earmarked unless your staff are saying, through the declaring this is day one of year one, none of services the Council was trying to tender. additional money that will go to councils, assessment process, pretty positive things of that matters. The benefit for them was to Robert explains: “More than 100 of our in order to ensure staff working in adult about the organisation. drive down the price that they paid and this service users had applied for a Direct social care receive the Living Wage. “So was often in the control of people who knew Payment and the council was in the pretty later on in the year we might just begin “So if we look at the big indicators I’m pretty nothing about how you had to put together poor position of actually deliberately trying to see at least a halting of this race to the happy with where we’ve got to. Who’d have the costs of running a service in the to obstruct these people from getting this bottom,” Robert adds. thought?” Glancing around his modest office, community, because they themselves had payment, because they knew it was he pauses and adds, “It’s not just been about no experience of doing that. A lot of these undermining the tender. It was changing Even after speaking for just shy of three riding the wave, you’ve got to build the wave companies we now know were coming in and the terms of it underneath their feet.” hours, one gets the impression we have up. Stoke up the campaigning side of things. making very, very low bids to win contracts, barely scratched the surface of the many People sometimes think you have to decide partly to get themselves established. Soon people power was in action. Service momentous, frustrating, rocky and victorious between campaigning or delivering services users, relatives and staff met personally times over the past 38 years. Did he ever but they can go together.” with their local councillors, organisations feel like quitting? joined forces, including the Learning We objected to the whole thing Disability Alliance (headed up by former “The record shows that I must have had the will to keep going! Of course there were a from day one and now a lot of Action Group staff member Ian Hood), and there were protests, demonstrations and few times where it possibly felt like it was people say that the objections media campaigns. just pushing a stone up a hill and it was never going to end and it would be better we were making 10 years ago Robert Farquharson The Action Group lost the bid, but launched to walk away, from a personal point of view.” Action Group Chief Executive Officer were right. an appeal. The highly controversial episode “But in relation to these kinds of things I was debated in Parliament, an investigation launched and the Deloitte Report published, am very tenacious. I don’t like the idea of giving up.” The Action Group did tender – they had to – that resulted in City of Edinburgh Council but they also continued to campaign against suspending the tendering process. And there is a satisfaction too. it, along with other organisations. Then The ramifications of those events, and the “The quality of what we do is still solid, still something significant came to the fore: impact of tendering, are clearly still felt today. Direct Payments legislation. Brought in in very good. Despite the pay problems, the “Although there was further guidance from the support we give to staff in other ways, all the 1999, Direct Payments, as the name suggests, Scottish Government in 2010, tendering has allowed service users to receive money for training and other support, is excellent. Trying remained a feature and it’s created this price to support staff to be as good as they can be services and staff directly, giving them more competition which has been really damaging,” independence and choice. is summed up in the Investors in People Gold Robert asserts. “We have protected our award that we got last year. That’s a high This was in tune with the ethos at The Action position by our usual means of being smart standard to get to – a lot of organisation Group, but it also proved to be a crucial and knowing what’s going on and how to have Investors in People but of those only weapon in the campaign against tendering. challenge it, but it has negatively impacted on social care in Scotland.”

“The record shows that “The quality of what I must have had the we do is still solid, will to keep going!” still very good...” 24 25 Our history Our history

1988 1989 - Roy Griffiths’ report - The government publishes Community Care: Agenda its response to the Griffiths for Action (also known as Report in the White The Griffiths Report) is Paper, ‘Caring for People: published. Community Care in the next Decade and Beyond’. - An Easter playscheme is held at Leith Community - The Group launches Centre which, for the first Leisure Link, a service time, integrates able-bodied designed to break down children and children with barriers between people learning disabilities. with a learning disability and other members of the - Spike Milligan and George public. Signing up to Mackay Brown both write leases for poems for North Edinburgh - People are invited to supported Action Group newsletter. submit ideas for a new accommodation Some of the users of name for The Group. in 1989 our Playscheme in 2016

Real Jobs in action – 1989

What The Action Group means to me... What The Action Group means to me... “I feel more confident “The play scheme has been than before and optimistic a godsend to our family.” about the future.” Parent Person who uses the Advice service 26 27 Our history Our history

1990 Services to Children, 1991 James – one of our first - The Group starts the Young People and Families - An exhibition by Camera Real Jobs Service Users decade in rude health and Our services to Children, Young People and Club members is held at Way back in 1993 Jewel and Esk Valley College over the next year: opens Families have also always been at the heart Leith Public Library. referred James to Real Jobs as he was coming to 7 houses for 19 people, of the organisation. Joan Griffiths recollects the end of his college course and was keen to get a recruits 20 members of - The Group publishes a the early days when Area 5 Action Group first new guide to welfare job. He was allocated an Employment Worker who staff; takes 12 cases to started to run support services and employ spent time getting to know James, his family, his the Social Security Appeal benefits and services, paid staff: available for 50p plus likes and dislikes and his skills. Together they visited tribunals and wins a total a range of work places. James was clear that he “This was quite innovative. Parent groups didn’t postage, and a new of £23,000 in arrears for wanted to work in a large environment, with lots of do this, they ran wee clubs and worried about magazine entitled A the claimants; and secures people and noise but it should be clean. And he got crisps and biscuits. This group decided: we Stroll Down London about £400,000 over the his wish. In 1994 he was offered a Laundry Assistant are different.” Road. next four years for the post at the Royal Edinburgh Hospital, and he has supported employment The group started services including a Sitting - Hearts player Gary been there ever since. scheme. There are 94 Service, the Friday Club and the 7Up club. Joan Mackay opens The volunteers helping run started the Kelpie Club, a mother and toddler Group’s new charity When asked what he likes best he says ‘the people’. clubs and activities, group, at Lochend Children’s Centre. It was later shop on Leith Walk. There is an obvious camaraderie between James and including the Sitting integrated into The Action Group and operated his colleagues, and he is well known throughout the Service, Camera Club and out of the London Road premises. hospital. He still has regular contact with Real Jobs Thursday Club. and attends the monthly Friends Group at the office. Today our Children and Adults in Transition - There is frustration Services (CAATS) supports well over 250 children He and his supervisor, Jackie, know they can at delays in the and young people (and their families) in one to contact Real Jobs any time. Jackie says that he can implementation of the one support, the siblings service, all sorts of be a worrier but knows he can talk to his colleagues, Government’s Community different groups and camps, and our ever-popular who look out for him. When he first arrived she says Care reforms. play and leisure schemes. that he was withdrawn and lacked confidence. Now, 22 years later, she says he is ‘loud, lively and cheeky’ and above all he loves his job.

Supported accommodation in 1991 – Kemps Corner

2016 – Louise Adam at her Art and James with his colleagues Photography Exhibition : ‘Question’ 28 29 Our history Our history

1992 Memories of Real Jobs 1994 Memories of Housing - The organisation’s name Andy Foreman, Development Manager, Edinburgh - Closure of Gogarburn Support Services is officially changed to and Falkirk: is approved by the The Action Group. Secretary of State. Clare Coyle, Development Manager, Edinburgh “The Action Group was much smaller than it is and West Lothian: - Real Jobs project is now and still had the old head office on London - The Action Group launched in Pilton. Road. It was principally providing services in welcomes the plan for “When I was first team manager we didn’t have Edinburgh, a far cry from what we do now! the hospital’s closure over mobile phones. You look back and think, how did - Disability Living the next five years, and we run services without mobile phones? Message Allowance is introduced, Real Jobs Edinburgh was based in Roseburn at will provide supported books in houses were a vital tool. You would go merging the old the time. Although Real Jobs Pilton had existed accommodation to 75 on shift, think ‘I was last here last Wednesday’, Attendance and Mobility since 1992, Real Jobs Edinburgh was the first tenants in the Edinburgh and you’d read over everything written since the Allowances, but is soon Edinburgh wide-reaching Supported Employment area. Wednesday. Now you’d get a text or an email, it’s dogged by payment service delivered by the organisation. more instant; things become faster and you have delays and backlogs. - The pilot Real Jobs to work at a different pace. But you just adapt, At that point Care in the Community was the big project has successfully otherwise you’ll become a bit of a dinosaur! - Housing opens new idea and the old Gogarburn long stay placed 18 people in paid in Duddingston, hospital for people with Learning Disabilities was work over 2 years. When I started working in social care, when Corstorphine and Joppa. being closed down, so many people were moving people realised you were supporting someone into their own supported accommodation and they would speak to you; for example, do they beginning to look for a job for the first time.” need different cutlery, do they want sugar in their tea. You still get it occasionally but it’s much more the case the support worker can say, ‘what do you think?’ And giving people their own voice is really important. The wider population is much more aware of what 1993 social care is, it’s much more visible in communities. You see that interaction in shops, in - Over 12 months The banks, in cafes. People get support but they get Group provides advice out and about and are a part of the community. and does follow up work on around 400 The other day one of my team managers sent me individual enquiries. Mark Brough in the Advice an email. Four service users were out for lunch Disability Living Services, early 1990s Allowance details 1992 with three support workers and when they went - Main parts of the to pay the bill, the assistant said, ‘It’s been paid, Community Care by a couple at the next table who were so reforms come into force. impressed with the lovely interaction between you and the way you worked with the people you are supporting.’ When you hear things like that you think, well, that’s why I do this job. When you get somebody in the community who can appreciate what good support workers are, good communication, interaction and people having good lives – that is really what it’s all about.” 30 Our history

1

1995 1997 1999 - First of The Action - The Group moves to its - The opening of the Scottish Group’s new residential present home at Norton Parliament provides new services opens in Park, Albion Road, and opportunities. Voluntary 1 Greenbank, despite is now a Medium Sized organisations providing early opposition from Organisation. services for people with local residents. learning disabilities come - The Group helps people together with self-advocacy claim £640,000 in new groups to form a lobbying 1996 benefits or benefit arrears body. - There are 1792 enquiries - Major changes in the to The Action Group. 1998 benefits system are phased in, including Disability 2 3 - Five people move into - Over the next year the Working Allowance being their new home at Group’s Children and replaced by Disabled Person Cameron Crescent, Families department Tax Credit. supported by The provides services to 130 Action Group. children/young people and their families, with 60 on - The pilot Real Jobs waiting lists for services. project has successfully placed 18 people in paid - Staff agree to a three work over 2 years. year pay deal that will lead to savings over the next two years. 1. The Action Group Shop Van, 1995 4 2. Still having fun in Children’s services after all these years! 3. Some of our early Playscheme users at the Park 4. Alan Downie outside the new office at Norton Park

What The Action Group means to me... “I enjoy the time I spend with my support workers. They brighten my day!” David 32 33 Linda Tuthill Linda Tuthill

Viewpoint

Supported housing continues to make a “Generally in society now there’s a blame difference to people’s lives – and these days culture. There’s a certain amount of that in “It’s an honest organisation, across the Lothians. “We’ve just moved some social care. Instead of people saying ‘that young people to a tenancy in Gorebridge, has gone wrong, how can we make it not go leaving the family home for a new life of wrong’, it can be quite blaming, it can be and we are committed to it their own, and they are all doing well. quite punitive and I don’t think that’s helpful. It makes users, staff and organisations fearful. “So it is life-changing this work: for the being all about the end user.” families, for the young people, for us.” “Things go wrong very rarely but the reaction to it can be very, very big. It can be kneejerk Linda has also seen some challenging and sometimes it can mean using a hammer trends in wider society and attitudes to crack a nut. towards social care. “I can see the need for protection but it’s not “The social care workforce has been black and white. There can be an expectation Linda Tuthill admits that she hadn’t heard of One of Linda’s first jobs was to help resettle downgraded. There has been a commodification that everybody must be safe all of the time. The Action Group before applying for a job as people coming out Gogarburn Hospital. of care and support, through the focus But people need to have measured risk in team leader almost quarter of a century ago. on price competition, and it’s moved their lives, otherwise it is not real life, and I “I was living and working in London in the away from being seen as something that’s think you have to be quite sophisticated in early 90s and looking to move back to I always knew intrinsically the hugely valuable and necessary - supporting how you approach these things. Scotland, and it was the first job I got offered. vulnerable people in the right way. Maybe it I had no intention to stay for so long but I hospitalisation of people was will swing back again with the introduction of “I don’t know how possible it is to keep all just really loved it. It’s like a family. wrong so I was really pleased the Living Wage by the Scottish Government. human beings safe all of the time. We try to But at the moment we’re like poor cousins; be even-handed. We’ve got all the policies “It’s always been a very accepting place, even to get involved with the later we’re not like education or health. People we need to have but we try to interpret the before the political context changed for stages of that. tend to only value social care when they regulation in a way so that the magic still different groups in society; it’s always been need it.” happens on the frontline, for the people we very pro-women, for people of different support to have as good a life as possible. ethnicities, and LGBT friendly. So it’s always “I remember five gentlemen who had profound Another societal shift has been increased been very welcoming.” and complex disabilities. I worked on the regulation and complexity around risk “But the major positive change I’ve seen in ward with them alongside the staff and it and safety. society is there’s a lot more people with Inevitably, Linda has seen many changes over support needs visible, living in local communities, the years, for good and bad. was a very different culture to how we would want things to be. So getting them into their using shops and services. It will take time “It’s changed for the good in terms of there new homes, having their own rooms, getting It’s a complicated environment to change society even further, but there’s being lots more opportunities for the people a bank account, buying a new bed - simple we work in. It’s highly regulated. more recognition that there is a place for we support - being able to contribute to the things but major changes for them. And everybody in society, and no one should be workforce and society, getting housing and people took to it like a duck to water.” When I started there were no excluded or hidden away in hospitals. jobs, and being recognised as citizens. risk assessments. You just The introduction of new funding through “And that’s how I see The Action Group: it’s “It’s changed for the bad as well in terms of Transitional Housing Benefit also stands found your way together. part of society, it’s part of the political austerity and cuts. There’s inequality still and out in Linda’s memory. “We moved loads There were a few policies but system, it’s part of equality. It sits within all poverty - recently, welfare reform has of people to their own tenancies and right of these things. It’s not just an organisation impacted on the most vulnerable in society. away people’s quality of life increased – not many. that provides services , or about trying to get That’s why we’re so committed to our Advice they were much happier and less stressed bigger. It’s about people’s lives – for all of life” Services because it’s very easy for people to and what was once termed challenging fall through the gaps. behaviours decreased.” 34 35 Linda Tuthill Linda Tuthill

Linda is keen to point out that the inspired by the people we support in so many organisation is not perfect however. ways. I am also inspired by the passion and commitment of our staff and managers to our “We get things wrong but we admit it and we service users.” put it right. We’re pretty nimble; we’ve been “Our service users able to dodge a lot of bullets, making things Despite her variety of roles and The Action more efficient, to survive in the economic Group’s growth, Linda still clearly values its are fantastic. They keep situation we’re in. The senior team get paid inclusive, family-like atmosphere. So what more than the frontline staff, there’s no doubt does she put this down to? you going every day.” about that, but we don’t get paid excessive amounts and the same rules apply to us as “I think Robert’s like that as the chief exec. they do to frontline staff. It’s an honest Politically he believes in equality for all organisation, and we are committed to it people and I think he’s created that culture. being all about the end user.” It’s not an ostentatious organisation, it’s not arrogant. And I like that. Despite clocking up many years with this one organisation, Linda has never stood still for “Our service users are fantastic. They keep very long – she is currently doing a MA in you going every day because they’re so great. Policy Studies at University of Edinburgh and As an organisation we work really, really hard says she is constantly learning on a personal but we’re not showy-offy. I think we do level too. exactly what we need to do for the people we serve.” “I’ve got to know myself a lot more. You get involved in the most intimate parts of people’s lives, so it’s quite a privilege. It humbles you because you complain about your life then you meet people who have extra struggles and you think, well, they’re Linda Tuthill getting on with their life, so can I. I am Deputy CEO and Senior Manager for Services

“I am inspired by the people we support in so many ways.” Our service users are fantastic 36 37 Our history Our history

2000 Memories of Learning 2001 2003 2005 - The Action Group achieves and Development - Real Jobs, Children and - The Action Group receives - The future is uncertain Investors in People Families services and the Charter Mark Award for at The Action Group, as standard. Dale Goodfellow manages the Learning and new scheme Sportslink good customer care. Edinburgh and Midlothian Development and Quality team. He joined The launch in Midlothian. Council (and many other - The Community Care Rights Action Group as a relief support worker in the - The Action Group becomes councils) see their funding Project is set up by The late 1990s. an approved SQA (Scottish cut by more than 20 per Action Group. Qualifications Authority) cent over the next three “I remember the induction, we were sitting on the 2002 centre, so can train and - The Same as You Report floor, there wasn’t enough seats or something – years. - Real Jobs celebrates its assess people ‘in house’ for was published, setting and I remember Robert [Farquharson] saying SVQ qualifications out what mattered most something like: “There’s a range of motivations 10th anniversary. to people with Learning as to why you’re doing this job. You might be a - Transitional Housing 2006 Disabilities, including things leftie, you might be a this or a that. But it’s Benefit is introduced, like the chance to get a job important to say that the service users simply - It’s a happy 30th Birthday allowing The Action to The Action Group – and and to have more control don’t care about that. The point is to provide a Group to develop over their support services. good quality service.” And I got it. celebrations are boosted by housing support that the organisation again being This job changes you, you learn so much about allows individuals to live awarded Investors in People yourself. I discovered you could be a truer in their own homes with and Charter Mark awards. version of yourself with the people you support. the appropriate level of 2004 I could just be with somebody and support them. support. - Care at Home, Tenancy - The new Futurebuilders It was incredible when I realised that. Support and Visiting Fund of the Scottish Executive enables The But with regards to the political aspect– if you’d Support are restructured to become Housing Support. Action Group to launch asked me back then I’d have answered the same services in West Lothian. way as I would now: that the world is unjust - The Black and Ethnic The office in unless we try and make it just. People we Minority Advice Service the early 2000s support are marginalised further than other (BEMAS) starts up people. Politics matters. There is an avenue for it. It’s not about being nice. It’s about human rights. - 20 young people went on Liberty. Dignity. Respect. It’s these fundamental an Adventure Camp to things. If you buy into that as a concept, then Wiston Lodge near Biggar, there has to be a challenge on power, on for wall climbing, assault decision-making; there has to be a way of at courses and even a pyjama least saying, can we think about this. That’s a disco party. hugely important thing. We’re dealing with Caroline and Graham having fun people’s lives. on a visiting support day out Somebody needs to be asking questions and this organisation provides a space for that. I’ve never felt over the years there hasn’t been an opportunity to ask what or why, even from the earliest days.” Graham Lawrie settling into his new home in 2004 38 39 Cameron Crescent Trip to Arran

“Music, dancing and “It is all about people fun were always a coming together, sharing feature of the place.“ their resources and being part of each other’s lives.“

Twenty years of Supported Living at When the house first opened in 1996 it One of the successes of The Action Group “We were coming together and there was Cameron Crescent. housed people who had come from places has been simply helping people achieve the support but it was also about being such as Gogarburn. “The first residents were things the rest of us take for granted in our independent. We were facilitating that At Cameron Crescent the bunting is still up in so institutionalised when they came here. own lives – like going on holiday for example. independence. And all these years on, we are the back garden. It was put up for the 20th Even going to the shopping centre for a For people with additional support needs keeping this going in different ways, through anniversary celebrations held in May but a cuppa was a big, big thing,” recalls Donna, there can be a whole load of barriers to a range of groups and social connections.” few months on it doesn’t seem out of place who has worked at Cameron Crescent for such things and The Action Group has always – because you get the impression these 17 years. “One wouldn’t go to bed at night been about breaking down those barriers Indeed the Arran trip – still fondly people have fun for much of the year. without his purse because in Gogarburn you wherever possible. remembered almost 20 years on – is just one example of the ethos of The Action “Any excuse for a party, oh they’ll have a had to look after your stuff. Now the clientele are younger and it’s a completely different In 2001 a small group of people supported Group, which is all about people coming party!” smiles Donna Wilson, assistant team in the then ‘Tenancy Support team’ met at together, sharing their resources and being manager. “It’s a fantastic house to work in, place. This set up makes an amazing difference. Amazing.” St Andrew Square, travelled to Ardrossan part of each other’s lives – whether service the guys are great.” and boarded the ferry to Arran where they users, family members or staff. ‘The guys’ are Marion, George, Susan, William, Diane Thomson was one of the first staff to spent a long weekend with staff volunteers. work in the house when it was set up. This is Ann, Claudia – who share Cameron Crescent, Staff member Jona Williams’ mum had a a house in south Edinburgh decorated in what she says: ‘Twenty years ago my first job with The Action Group was at Cameron house on the island and the group stayed bright colours. The place has a real buzz of in a nearby hostel. life about it, where folk chat and cook and Crescent. How apt it was to find myself live life together. seated in their sunny, vibrant back garden Highlights were plentiful: visiting a distillery, yesterday helping them to celebrate 20 years stargazing through a telescope, and going Claudia says she likes the size of the house, of the house opening. As the accordion player to see a performance by Scottish Opera, because she gets peace and quiet in her led us in a sing song of Scottish favourites it who were touring villages around Scotland. bedroom if she wants it, while Susan enjoys brought back fond memories of the early making food, especially her speciality: trifle. days at the house with the original occupants “I remember the opera, because I don’t usually George likes baking biscuits and scones, and (Wullie, Norris, Bob, Mary and Janet) and the like opera music, but I liked this music and helping around the house. And the creative pioneering staff team. Back then we were we sang it on the way home. And I remember side of the housemates comes out in arts and trying to create a sense of home and care having a barbecue on the beach,” says Monica, crafts, so that their home is always suitably that was far removed from people’s who went on the trip. Another member, Albert playing his bagpipes decorated for occasions like Halloween, institutional experiences. Music, dancing and Albert, played the bagpipes as the group Christmas and Easter. They attend various fun were always a feature of the place. made their way to the barbecue. groups and social activities through the week Although the occupants and staff have – Claudia goes to a singing group while changed over the years it was great to see “It was about looking for people who had William enjoys seeing shows and going to some familiar faces and that the spirit and mutual interests and then saying, let’s church – as well as going on outings and the ethos of the place is still alive and well.’ jointly use support to do help them enjoy holidays together. these interests,” Jona explains.

40 41 Our history Our history

2007 2009 2010 2011 Gareth Timms, Training Officer, - Edinburgh Council - The Action Group - Advice Services run 35 - The Deloitte Report is recollects the campaign against withdraw funding for launches a Real Jobs benefit training courses; published into the City The Action Group Advice service in Carrongrange 70 per cent of these are of Edinburgh Care and the Edinburgh Tender services, leading to School, Falkirk. for external agencies such Support Tender– bringing “The activity of service users was so significant that people significant challenges in as housing associations. a real sense of victory to with learning disabilities eventually had to be heard by the maintaining this service. - The City of Edinburgh service users, who had Council’s leadership is - The majority of The Action Council. They were going to their councillors, going to talk taken to the streets to to their MSPs. - The HR department defeated in an opposition Group Housing Support campaign and taken their grows, with two new motion specifying that users are now using Direct stories to council meetings. People started to have a voice. It was the longest Council posts to help services a backlog of 209 Direct Payments. debate of that administration, and the first time that with recruitment and staff Payment applications should - The Scottish Government administration was defeated in a Council debate. The related issues. be cleared before any new - A Dads’ Group is launched launches a new national as part of Black and Ethnic Evening News picked up on it and we contracts are awarded. strategy to make sure more got campaign of the year in The Herald. The retendering process Minority Advice Service people have access to Self- 2008 is suspended until an (BEMAS). Directed Support (SDS); We don’t blow our trumpet very often, in some ways we’re - The Care Commission independent inquiry and The Action Group, a quiet organisation, but it was a major and significant begins to “grade” service is completed. in partnership with other milestone. And it got us back to being the campaigning providers; The Action organisations, is awarded organisation we started out as. Group is awarded Grade a government grant The organisation supported people to take more control. 5: Very Good. to fund a new SDS One of the ways was via direct payments. I was working project, ‘Discoveries’. - A ‘quality review’ for Real Jobs then and people were choosing to buy is carried out by their services. When Direct Payments were introduced I Edinburgh’s Children and remember this woman who had anorexia, lupus, a whole Families Department variety of issues including extremely low self-esteem. and The Action Group She couldn’t approach a bank because she’d just burst into is praised for its high tears. When she got a Direct Payment she said it was like quality services including a mental switch; she suddenly realised that when she went information and advice, into the bank, she was doing them a favour. It was very and its highly valued The Bemas Dads Group, 2010 empowering, because when it’s done properly you are in contributions of staff. charge of the transaction. And by buying the service from - A highly controversial The Action Group you are contributing to the organisation.” tendering process is announced by City of Edinburgh Council. It will affect the services of 771 people, including 143 users of Action Group services. Many people switch to Direct Payments, which allows them to choose services from The Action Group, and protests and demonstrations are later held. 42 43 Our history Our history

The importance 2012 Reflections on our of partnership - After 33 years Joan 40th year: Clare Coyle Griffiths steps down as The Action Group has always been committed to “That it is our 40th year is quite an amazing thing. Chair to become Labour working with others to get better outcomes for the We’ve got quite a healthy bank balance, we’ve Councillor for Craigentinny/ people who use our services. We recognise that we been well managed by the board and Robert’s Duddingston. She is can’t do it all by ourselves – we need others. This is been integral to that. replaced by Bob Taylor. true at the frontline delivery of support to an There are elements of both optimism and also an individual, where our teams work in partnership with - Members vote Yes to a awareness of things that are concerning – issues many different people and multi-disciplinary teams. partnership with ARK around budgets being tightened, how social care Housing. And it is also true at the more strategic end of things is funded and so on. And because of that drive – this is why over the years the organisation has - At Carrongrange School, towards lower costs in the welfare budget, that played a central role in helping set up and support 100 per cent of school potentially has an impact on service users. national umbrella organisations such as the Learning leavers go on to find work But I think as an organisation we are quite well Disability Alliance Scotland (LDAS) and the Coalition opportunities, further study placed. We’ve always been quite forward thinking of Care and Support Providers in Scotland (CCPS). or to learn new skills – a in terms of what new things on the horizon Some partnerships are just for a time, such as our remarkable statistic for might mean.” links with ARK, and others are just for a specific which the school credits its project – Discoveries, or INC (the consortium partnership with The Action that runs the playschemes) or All in Edinburgh Group’s Real Jobs Falkirk. (the consortium that runs employment services in Edinburgh). From those first parents and carers joining forces with social work support in 1976, the thread of partnership runs right through the history of the organisation, as Robert Farquharson explains in more detail at the end of this book. And at the heart, the most important partnership, is with our people – our service users, their family members and our staff – we believe that together we can make a greater difference than on our own.

The Advice Team celebrate generating over £1 million of income for service users in 2012-13

A night out in West Lothian, 2011 44 45 Our history Our history

2013 2014 2015 Reflections on our - Ian Hood of Learning - There is an air of optimism, - The Action Group 40th year: Gareth Timms Disability Alliance financially – after some 8 receives the Gold Scotland (and formerly years of negative pressure standard Investors in “There’s always stuff to do. People need to be of The Action Group) on The Action Group’s People. listened to and involved and we need to constantly warns of the “most services, a raft of pay look at how we communicate. Communities are Draconian welfare proposals is put together - Care Inspectorate changing. For example I play backgammon and I reforms ever”, as to address low pay, and awards services Grade play it on the web, with friends in other countries. Universal Credit is the organisation expands 5 (Very Good). If we don’t support people to access these other communities they’ll get left behind. introduced. its development plans. - All in Edinburgh - The Advice Services - West Lothian Events Consortium is formed There’s a feeling we’ve always been making have generated more Committee organises between The Action progress, but there’s also this feeling that the rug than £1m in additional activities including bowling, Group, Enable, Intowork, could be pulled from under us. That’s not just The income for individuals a canal barge trip, and a and Forth Sector, to Action Group; there’s a danger of social care being and families over the summer picnic. provide employment merged with health. Of organisations referring to last year. support to up to 800 people as patients and social care being seen only - 80 people attend the individuals across for its potential to relieve bed blocking and so on, - The Action Group, relaunched staff conference, Edinburgh. and not promoting independence and choice and together with Lothian which is filmed for the control in people’s lives. There has to be a Autistic Society, first time. - The Action Group realisation that social care is a vital part of society.” the Yard, FABB and signs up to the Kidzcare, successfully National Involvement bid for the Edinburgh Network’s Charter for Playscheme tender Involvement, reinforcing as INC consortium – our commitment to our seeing provision of mission; ‘To value, listen playschemes across 4 to and involve people so venues in the city to that our every action is around 400 children and judged to be the best’. their families - Team 1.11 encourages The BEMAS Young users to use their SDS People’s Group in 2013 creatively, ‘pool’ their resources and enjoy group activities such as gardening and walking. “People need to be listened to and involved...” 46 Our history

2016 There’s no stopping the - It’s Many Happy Returns walking group – 50 walks to The Action Group! An action-packed 40th and counting! year is planned, including The Team 11 walking group will reach the milestone a Big Birthday party. of their 50th walk on 3rd July 2016 and to celebrate Around 40 members of they are going to have a well earned sit down! staff run part or all of That is, on a barge trip at Ratho. Although they will the Edinburgh Marathon probably still be going for a wee walk as well! Festival, raising over £6,000 for the Group and The group has been running (or walking!) for a the celebrations look set number of years now and is always well attended to continue all year long! and popular. Over the years, they have explored many miles of the Central Belt. The list includes Lauriston Castle, the Cammo Estate, Glasgow Transport Museum, South Queensferry, the Falkirk Wheel, as well as walking the entire length of the Water of Leith – over a few sessions! Ivan Cohen, who regularly walks with the group says: ‘The walking group is a helpful way to meet new people. I enjoy the fresh air, the exercise and most of all, ending up in the pub afterwards! It’s a great laugh!’ So well done to the group for 50 great walks - in all sorts of weather - and put your best foot Happy Birthday to us! forward for the next 50! Some pictures from our 40th birthday celebrations in 2016. 48 49 Looking back and forward Looking back and forward

“One thing we do need, which we know made a difference in the past,

Marion enjoying the is political leadership...” sunshine at Cameron Crescent’s garden party

If there is one theme above all others to take for price-competitive bids from across the platform we might have built from 10 years of Just about everything else about the future from the last 40 years of The Action Group it UK and Europe? By contrast, good things partnership - dialogue, debate, experiment rests on that. The quality of what we do will must be PARTNERSHIP. Bob Taylor has happened with social work in the vanguard, and experience - is not there. Yet the be compromised if low pay continues; described the early years of parents and creating a partnership that fundamentally enduring message is that we do well – as do development will stall if new staff cannot be professionals working together. The many put people first, not the interests - real or our partners – when partnerships work, as recruited; over-stretched managers won’t have phases of our growth since then are imagined - of potential “suppliers” seeking they do most of the time. the capacity to innovate; there will be no time characterised by partnerships; and our a piece of the financial cake. to forge partnerships. service-delivery now cannot be imagined The explanations as to why there is a without the partnership of the people who For The Action Group in 2016, use our services, their families, our staff, So the last 10 years of problem, why councils seem to find it so other professionals, numerous housing the biggest challenge for us difficult to sort this even with extra money on competition, tendering and the table would fill a book. One thing we do associations, other voluntary organisations, and our partners is to turn 5 councils, and so on. re-tendering is really a story need, which we know made a difference in around the declining value given the past, is political leadership; for councillors After the early years, two big developments of missed opportunities and to step-up and challenge the obstacles, say to our work, witnessed by low come to mind: the late ‘80s and our work with the waste of resources on that this will be done because it is long Lothian Regional Council to replace Eversley pay and an ever-increasing overdue and the right thing to do. The Hostel, home to 17 people, with a range of the wrong things. downward spiral must end and the slow supported accommodation – individual recruitment challenge. journey begin to fair work, fair pay and a tenancies and small homes - for 26 people. sustainable future for our work. Then, in the ‘90s we were part of a major Procurement’s rise is like putting the lions in The Scottish Government has stepped in with change programme to reprovision Gogarburn charge of the circus. We’ve then spent too funding and organisations, private and Hospital – councils, the NHS, social work and much time responding to their every move, voluntary, are ready to act. It is for councils to the various health professions, 12 voluntary trying to constrain and re-train them, now match their rhetoric about Fair Work and organisations and housing associations – all knowing full well their inclination is to eat the Living Wage with the actual transfer of made it work without a procurement officer everything else. the Government’s money to their social care Robert Farquharson to be seen. Now, we have huge challenges in front of us, providers. This is a critical moment: there are Action Group Chief Executive Officer It is sobering to reflect that, quite possibly, none of which were unknown in 2006: serious problems across social care in neither of these initiatives would have demography, rising demand, the scourge of Scotland which have an impact on people who happened had there been the dead hand of inequality, the need for prevention, asset- need support, on family carers, the workforce, procurement trying to run things. Could we based approaches, support for carers, etc, the NHS and our wider society and economy. have successfully replaced Gogarburn by etc. Sadly, although we know the problems, it bundling people into “lots” and advertising seems like we don’t know how to act; the

The Action Group, Norton Park Centre, 57 Albion Road, Edinburgh EH7 5QY Acknowledgements: t: 0131 475 2315 Content written by f: 0131 475 2316 Rosalind Gibb, with Sandra e: [email protected] Kerley and Helen Walton. Thank you to everyone who Established in 1976 - A Limited contributed memories, pictures Company with Charitable Status and stories along the way. Registered in Scotland No. 105634 Registered Office: 57 Albion Road, Designed by: Edinburgh EH7 5QY Form by Thought Scottish Charity No. SC 005964 www.formbythought.com