Image: partners in advocacy logo Image: Adrian the Advocate Registered Company No. 185467 Scottish Charity No. SCO27857 SAVE OUR SERVICE FOR DISABLED CHILDREN WITH ADDITIONAL SUPPORT NEEDS IN EDINBURGH PRESS RELEASE For over ten years we have worked with hundreds of the most vulnerable children and young people with additional support needs – Aspergers, Autism for example – in Edinburgh. Our independent advocacy service has supported them to have a voice (many of our young people don’t have verbal communication), to understand what’s happening to them, to make informed choices and their voices heard, and to access the services they are entitled to – health, education, social work. Joan Alexander, a long term volunteer on this project has just been short listed for the Inspiring Volunteering Award. Jimmy McIntosh MBE, Chair of Partners in Advocacy, said “ We’re devastated. Our bid for continuation funding to the Big Lottery Fund was unsuccessful and we’re fighting to save this first class project for our current young people and parents who will PAGE 2 lose our service and for future generations who will need us without support now we will not be there.” Our external evaluation by Avante Consultancy was extremely positive and an extract is below with various quotes from service users. 2.0 Key findings Parents, carers, and service representatives confirmed that the project has provided a much-needed service for children and young people, particularly in terms of short-term crisis advocacy. All respondents emphasised the professionalism and efficiency of the staff. They confirmed that whilst offering an extremely empathetic, supportive service in a relaxed and reassuring manner, project staff are acutely aware of their responsibilities and their boundaries, and act in an entirely professional manner. “They are lovely people, lovely nature, very relaxed. Very efficient in getting information to you. And they are there for the children, not for the parent.” Parent Feedback from clients, parents, and carers describes staff as extremely skilled at engaging with young people, speaking to them ‘at their own level’, and encouraging them to take responsibility for themselves. All respondents confirmed that they do not seek to influence the decisions of the young people. Rather, they help young people to reach their own decisions, whilst at the same time encouraging them to take account of a wider range of issues than they might otherwise have done, had they been on their own. Outcomes and targets At the outset, the project’s intended outcomes and targets were described as follows: Outcome 1: Children and young people with a wide range of disabilities will be able to have a voice to express their views and more able to influence future provision and choices. Outcome 2: PAGE 3 Children and young people with a wide range of disabilities will be less socially isolated and excluded. Outcome 3: Disabled children and young people will develop greater confidence, self esteem and self advocacy skills. Outcome 4: Disabled children and young people will be supported to enable them to access a wide range of services. Outcome 5: Disabled children and young people will have their rights upheld and be supported to take actions to improve their quality of life. In order to achieve these outcomes, the following targets were agreed: • 10 disabled children and young people to be matched to citizen advocates ; • 48 disabled children and young people to participate in self advocacy groups; • 6 advocates to be matched to disabled children and young people (per year); • 14 disabled children and young people with short term issues to be supported (per year); • 3 existing and 3 new self advocacy groups for disabled children and young people to be supported. At the time of the evaluation all of these targets had been met or exceeded, as follows: • 16 disabled children and young people have been matched to citizen advocates by the end of year two. • 49 disabled children and young people have participated or are currently participating in self advocacy groups; • 16 advocates have been matched to disabled children and young people ; • 56 disabled children and young people with short term issues have been supported by end of year two; • 6 self advocacy groups for disabled children and young people have been/are being supported. PAGE 4 The demand for short term advocacy, provided by the full-time children’s co-ordinator and one part-time advocate, has far exceeded original expectations. Situations which have prompted requests for short-term advocacy have tended to be complex and have often arisen from difficult family circumstances which cannot be resolved swiftly. In such situations, there has been a requirement for support to be provided on more than one occasion, before it has been appropriate to match the client with a citizen advocate or refer them to a self advocacy group. In many instances, owing to the complexity of the issues being addressed by the child/young person and their family, it has not been appropriate to transfer them either to a citizen advocate or to a self advocacy group. In terms of marketing and promotion, the project decided at an early stage to target specific schools, social work services, and voluntary organisations which provide support to children and young people with disabilities, and their families. This approach has enabled the project to establish strong working relationships with these organisations. Parents and carers confirmed that they were made aware of the project by education/social work staff or via local voluntary organisations. Client feedback From the outset, the project has gathered regular feedback from young people, parents, and services. Young people are encouraged to complete a simple form which indicates whether or not the service has made a difference for them, in what way, and what they have most appreciated. This information is gathered in a way that is appropriate for the child. They are also invited to make suggestions as to how else the project might help them. Having studied a selection forms, it is evident that young people are comfortable about answering the questions, and willing to offer suggestions. Regular meetings with and supervision of advocates and staff provide opportunities to monitor progress. Service organisations, parents, and carers are invited to complete evaluation forms, as and when appropriate. PAGE 5 The project regularly receives letters from parents and carers, which describe effectively the impact of the service upon its clients and their families. 3.2 What’s been achieved a) Short term advocacy “It has totally changed my life – I don’t know what I’d have done without them.” Young Person Children and young people, parents and carers, and service representatives were unanimous in their views that this element of the project has provided outstanding services; which have led to improved circumstances for everyone concerned. Parents, carers, and service providers confirmed that the support provided by project staff has made an enormous contribution to the lives of the young people involved. They reported that young people were happier, more relaxed, and better able to cope with the issues facing them. As a result, they were making better progress at school, and were generally more confident. Young people have been helped to think about the problems which result from challenging behaviour. One young person described clearly how his advocate had taught him to deal with stressful and difficult situations. He recognises now that controlling his temper is more likely to lead to a better response from service providers. Thanks to discussions with his advocate, he has a better understanding of what he might expect – and not expect – from services. Prior to receiving support from Partners in Advocacy, one individual was in regular trouble with the police. However, thanks to the support of Partners in Advocacy, this is no longer the case. “I always remember what my advocate told me to do when I get mad – she said ‘Rise above it, just rise above it’ -and I do.” Young person Young people confirmed that they feel comfortable and relaxed with their advocate; older children indicated that they are more confident about dealing with issues themselves. PAGE 6 Children and young people are encouraged by their advocates to recognise that not only do they have rights to services and support, but that that they too can share the hopes and dreams of any young person, and seek to enjoy life as any young person might. Interviews and feedback forms indicate that their relationship with their advocate allows them to be more confident, more aspirational, and to express their everyday wishes. When invited to suggest what more his advocate might do for him, one young person simply replied: “Find a girlfriend to kiss!” One parent, whose two children have received short term advocacy support, said that both have become much more settled at school and are much more likely to express their concerns and say what they themselves would like in terms of help and support. Education and social work service representatives confirmed that the support provided by the advocates has given them a much more comprehensive understanding of the young person’s circumstances. Consequently, they have been able to respond more effectively to the young person’s needs, to everyone’s satisfaction. “The support provided by Partners in Advocacy has been life-changing. If all of the staff are as wonderful as ……, then it must surely be a wonderful organisation.” School representative One school representative described a young person aged 14 years whose behaviour had become increasingly challenging, and whose attendance at school was poor. They were becoming very despondent about being able to provide support. Several months later, with the help of Partners in Advocacy, the school has been made aware of issues previously unknown to them. They have adapted the ways in which they are providing support, the young person is happier, more confident, attending school regularly, and responding to the support provided. PAGE 7 “This opportunity to help this young person would not have arisen had it not been for the commitment of the advocate.” to help this young person would not have arisen had it not been for the commitment of the advocate.” School representative b) Citizen advocacy Once the issues requiring the support of a short term advocate have been resolved, there is often benefit in providing a child or young person with the support of a citizen advocate. This requires careful ‘matching’ in order that the relationship can be productive. Individuals are introduced to a potential citizen advocate on a very gradual basis, through a series of visits or outings. The citizen advocate is provided with a very thorough understanding of the background to the case. Citizen advocates provide the child or young person with a friend with whom they can share issues and concerns, someone who can give them confidence and support, from an objective perspective. As well as becoming a friend in whom the child/young person can confide, citizen advocates seek to develop social networks, taking their young ‘partner’ on social outings, perhaps simply a visit to a café or ‘Macdonald’s’. This enables the child/young person to enjoy time outwith their family, whilst at the same time building confidence, developing social skills, and developing a trusting and ‘equal’ relationship with a friend in whom they can confide. The carer of one young child confirmed that as a result of this support, the child is becoming more outgoing, more confident in company, and more settled at school. Younger children described the fun and enjoyment they have on going out with their advocates. All feedback forms express complete satisfaction with the services received. One young child, aged 6, told us: “I like going out. I like just having a friend to talk to.” Client Informal discussions with citizen advocates at the social event hosted by Partners in Advocacy confirmed that training delivered by the project is of a very high standard, and support is available as and when required. Discussions with clients indicated a high level of satisfaction with the support that they receive from citizen advocates. PAGE 8 Our service prevents situations becoming a crisis and therefore not only saves heartache but also can save money for statutory funders – if we’re called in early, then things don’t have to get so bad. SHORT TERM CRISIS ADVOCACY = POSITIVE OUTCOMES A Selection of Client Group & Transition Issues We Helped With – . Children who self harm . Children looked after at home or by friends and relatives . Children in need of protection • Children or young people no longer looked after • Young parents • Children with disabilities • Young carers • Children adopted (or in the adoption process) • Children or young people who misuse substances/alcohol • Children or young people affected by HIV/AIDS • Children or young people who are homeless • Children or young people in poor housing • Children who are carers for relatives or who are affected by disability PAGE 9 • Children who live in violent environments or affected by domestic abuse • Children whose parents have mental ill health • Children whose parents misuse substances/alcohol • Children whose health and development is suffering • Children with additional support for learning needs (including those excluded) • Children who have emotional, behavioural and self harm issues • Children or young people who are in conflict with the law because of offending behaviour • Children affected by imprisonment of a family member • Young runaways • Children abused through prostitution and sexual exploitation SHORT TERM CRISIS ADVOCACY = POSITIVE OUTCOMES Our independent advocacy work is life changing at key transitional times for young people –and can affect the future quality of their lives. For example, A significant number of young people are referred to us from school, social work, or a call for help from a family member when a young person has moved from primary to secondary school, from one class to another, or from school to college and the young person appears not to have been coping or achieving. We have provided support to listen to the young person, to support them to access practical support services they’re entitled to, and to look at ways they can retain their placement. Without our support they would have continued to have failed and no-one would have listened to them. We have ensured their voice and needs are PAGE 10 heard and that action is taken. The young people have stayed within the education system rather than more negatives outcomes of truancy, non achievement, exclusion, and decreasing confidence and self esteem. Often diagnosis of physical issues have not been professionally diagnosed and therefore support packages not put in place by social work and education. Directly due to our advocacy, we’ve brought professionals together to diagnose and to act on this so that the support services the young person is entitled to is put in place so that the young person can achieve their potential with the right support. We have many examples of young people with complex support needs wanting to go to mainstream school or college but its their parent(s) perception that they are not capable of doing so and that the parent knows better. We have enabled young people to access further education and to get the services they need that will ensure they can cope and retain their placement. We have worked with young people who have been excluded from school to help the young person understand what as happened, why it happened and to look at options to return to school or seek an alternative positive outcome so that they are not just sitting in the house, isolated. We have supported young people to enable them to take up new positive social activities such as volunteering (some also volunteer with us as well as other agencies), attending a gym, going to the cinema and youth clubs. When the young person is in care we’ve advocated on their behalf to gain the support service of a residential care worker to accompany the young person to activities so that they can leave the residential residence and start to move back to society. Transition is moving out of care into hospital. Clients have been supported to understand and talk about the changes in their bodies as they reach puberty and to make choices about their sexuality so that they are confident in themselves and are supported by us to understand the implications of choices made. PAGE 11 We’ve also worked with young people to move from home into care as that is the best option for the young person at that time and to help them understand why, be heard and their Needs understood in a new environment where no-one knows them, and to support them to have the confidence to plan for the future. Many of our clients self harm and we provide support for them to understand why they are doing this and to access the services they are entitled to. Budget cuts has led to many young people not accessing the services they are entitled to and our advocates use the law and their voice to act on behalf of a young person or parent who are often not confident enough or know that services are around to be able to access them. Wrong decisions have been made by the system based on saving money. Our advocates fight for the person’s right to the services they are entitled to. We don’t act solely on behalf of a parent – the young person’s voice and needs are paramount. In power struggles between divorcing or separating parents we are the person representing the needs of the young person. This work is becoming more common. SELF ADVOCACY = POSITIVE OUTCOMES The self advocacy groups have provided young people with support needs to have an opportunity to gain skills in self assertiveness, increased confidence and self esteem. This has led to life opportunities they would not have been able to grasp. Some evidenced outcomes achieved by individuals directly because of our self advocacy work 1. A member of the young people’s advisory group becoming a volunteer supporting the groups. This led to a part time paid post with City of Edinburgh Council as a professional Youth Worker. PAGE 12 He has also worked with the Advocacy Co-ordinator to develop an information resource bank on LGBT issues and created partnership working with this organisation. 2. Another group member represented the views of young people at our stakeholders review ensuring accessibility of the organisation. He has also attended numerous consultations on young people’s issues and provides a key link with Stevenson College. He is currently applying to attend a summer school at Harvard in the USA this year, with a view to taking up professional Youth Work or Social Work. 3. Members of the self advocacy groups have been supported to present workshops on advocacy in local youth projects and colleges. This resulted in our new Advocacy Group for vulnerable young people in transition, supporting them with courses in Telford College – ensuring they retain their placement and achieve. 4. Other members link into various Local Authority planning groups (Edinburgh, East Lothian for example) and influence the style, pace, and accessibility of numerous statutory consultation meetings with young service users. They are now constantly consulted on policy changes and are actively engaging in issues such as tendering and change of service provision. 5. Group Members presented their ideas and sought clarification on how meetings and daily tasks were carried out in statutory residential care services. This resulted in a policy change in terms of style of the meetings and who had access to an individual’s daily information and diaries. Empowerment and Ownership. 6. Self advocacy members are currently training as Lay Assessors for the Care Commission and have presented this idea and offer practical peer support to other young people’s groups to promote uptake and further young people empowerment. PAGE 13 4 members of the groups are becoming volunteers for PIA and setting up an advisory group in the Lothian’s. 1 member is now an experienced Lay Assessor for the Care Commission 3 more are currently applying to become Lay Assessors, and a further four are interested 3 members of the groups are active on the National Involvement Network-the charter of involvement due to launched in April 2009. 2 Members of the groups sit on the Learning Disability Alliance plus the Parliamentary Cross Party for Learning Disabilities as representatives of ARC (Scotland) and PIA. 2 members were able to take up employment -working Ikea and for a greetings card company. 1 member has moved into her own accommodation with direct payments. 2 Members are representatives on the East Lothian Local Authority Planning Group. 1 Member is on the Local Community Care Forum. 1 member sits on Planning Committee which runs the community care forums. 1 member, now employed in Ikea, received the Employee of the Year Award. She gave the introductory speech. PAGE 14 2 Members received Volunteer of the Year Awards from City of Edinburgh Council. 1 member volunteers as an Assistant in a Play Scheme. 1 member is also a volunteer with another charity with supported training opportunities as well as being supported to volunteer in the Partners in Advocacy office . 1 member volunteers in the Partners in Advocacy office one morning a week as part of a Work Experience Plan to enable her to prevent her from being excluded from school. Please note that this list is not exhaustive but captures the flavour and benefits of self advocacy support in inclusion in communities and active citizenship for all ages . CONSULTATION AT THE CENTRE. The self advocacy group, the Inclusion Group is central to all that we do – ensuring as an organisation that we are inclusive in everything we do and working with outside agencies to improve their services, how they consult to ensure inclusion, and to provide training to staff on various issue such as working with people with additional support needs. They have also pioneered Easy Read, ensuring materials are produced in a format all people can understand. Their services have been harnessed by many Councils and Health Board with their consultation process on tendering of services. A population of people with support needs would not have understood what is happening, why their services have reduced or changed, what they can do about and have a combined stronger voice without our self advocacy support work. PAGE 15 Real consultation between service user and key bodies such as Health Board, Edinburgh Council etc would not have taken place without our self advocacy work. This work is very topical and a priority at the moment as people’s support packages, tendering, and service/budget planning takes place. Julie Hogg Director 19 May 2009 SAVE OUR SERVICE FOR DISABLED CHILDREN WITH ADDITIONAL SUPPORT NEEDS IN EDINBURGH YOU KNOW IT MAKES SENSE Image: Adrian the Advocate Registered Company No. 185467 Scottish Charity No. SCO27857