No Barriers Celebrating 40 Years of the Action Group 1976-2016 3 Foreword by Brian Cavanagh

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 Viewpoint 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 Viewpoint 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.

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