The Constructive Campaigning Parent Support Project evaluation

The Constructive Campaigning Parent Support Project

Opening Doors for Change Evaluation of the TreeHouse Constructive Campaigning Parent Support Project

July 2009 Written by Jenny Phillips, TreeHouse

Opening Doors for Change Evaluation of the TreeHouse Constructive Campaigning Parent Support Project July 2009 Page 1

The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

Contents Executive Summary

3

Part one: evaluation of the project at a national level

5

1.1 How has the project facilitated the work of local parent campaigning groups?

5 1.2 What have participants gained from involvement in the project? 6 1.3 Challenges and barriers to achieving outcomes 7 1.4 Sustainability and lessons for the future 10

Part two: the role of local authorities 2.1 Promoting partnership working 2.2 Accessible participation

13 13 15

Part three: constructive parent campaigning 17 3.1 Establishing a parent campaigning group 3.2 Strategies for successful local campaigning 3.3 Strategies for successful national campaigning

Acknowledgements Appendix

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17 20 24

31 32

Executive Summary TreeHouse is the national charity for autism education. Our vision is to transform through education the lives of children with autism and the lives of their families. Established in 1997 by a group of parents, TreeHouse runs a school for children and young people with autism and campaigns for better autism education locally and nationally.

The TreeHouse Constructive Campaigning Parent Support Project (PSP) was a three year (2006-2009) Department for Children, Schools and Family (DCSF) funded project. It aimed to support parents1 to work constructively with professionals in mutually respectful partnership to improve the quality and quantity of services for children and young people with autism across England.

The project worked with ten parent campaigning groups, each in a different local authority, supporting them to create constructive channels of dialogue with the local authority to enable genuine consultation on the shaping of autism services.

The Office for Public Management (OPM) was commissioned by TreeHouse to conduct an evaluation of the PSP. The aim of the evaluation was to provide evidence as to whether the project has been effective in: zz supporting parents to campaign constructively to improve education provision zz achieving the DCSF project outcomes2 zz finding out ‘what works’ across the different locations zz consolidating the learning for future policy and practice refinement Part one presents the key findings from the independent evaluation of the PSP carried out in May 2009 by OPM. The evaluation explored: zz how the project was structured to facilitate the work of the local parent campaigning groups it supported zz what participants felt they gained from involvement in the project zz challenges and barriers to success zz recommendations for the future It is anticipated that the information in this section will be useful for anyone engaging in a similar project.

Part two examines the vital role that local authorities play in promoting partnership working, and enabling parents to participate effectively in shaping services for children with autism.

Part three is a resource to aid both parents and professionals to continue to work constructively together in this area in the future. It summarises the

1 Throughout this report, reference to ‘Parents’ is used to include both Parents and Carers 2 See Appendix

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

learning from the three years of the project (2006-2009) and outlines strategies for running an effective local parent campaign.

The report is based on the findings from the OPM evaluation. Further examples and case studies from the project are used to illustrate the report throughout.

For further information about the Constructive Campaigning Parent Support Project, or to find out about how TreeHouse continues to work with parents nationally and locally to build better services for all children and young people with autism, please contact TreeHouse.

TreeHouse The Pears National Centre for Autism Education Woodside Avenue London N10 3JA T: 020 8815 5444 www.treehouse.org.uk

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Part one: evaluation of the project at a national level The first part of this report presents the key findings from the independent evaluation of PSP carried out in May 2009 by OPM. The OPM evaluation used a range of methods to generate evidence, including: zz desk-based review of relevant documents zz interviews with key informants from TreeHouse zz online survey for completion by a range of stakeholders in all 10 locations zz focus groups and interviews with a range of stakeholders across all zz locations The sequence of expected outcomes below formed the basis of OPM’s evaluation: zz Has TreeHouse been able to reach parents and raise awareness of autism? zz Have parents used the PSP resources and shared them across wider stakeholder groups? zz Have the resources and support provided led to positive outcomes? zz What have been the key success factors for change? zz What have been the main benefits of parental involvement? zz What have been the challenges and barriers to change? zz What are the main areas for improvement in the future?

Part one of the report looks at how effectively the project supported parent campaigning groups, what participants felt they gained from involvement in the project, challenges and barriers to success and recommendations for the future. This is based on the OPM findings but also draws on examples and case studies gathered over the course of the three year project.

1.1 How has the project facilitated the work of local parent campaigning groups?

A number of factors were identified as key triggers and facilitators for change across different locations. These are summarised below: Informal, one-to-one support from TreeHouse: The flexibility of approach adopted by TreeHouse staff, and the generosity of time provided by key members of the team to lead parents, has been hugely appreciated across all locations and considered to be one of the fundamental facilitators to driving forward change.

“The majority of interviewees considered support from TreeHouse staff the most useful aspect of support, because it was personal and was provided by a dedicated team.” – OPM Evaluation Report

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

Parent attendance at local authority/partnership meetings: Parental presence at key meetings with the local authority and other organisations has helped raise the profile of parent groups, enhance partnership-working and develop relationships with key individuals. The presence of TreeHouse staff at such meetings has also helped in forging links and bringing authority to discussions.

Formal training: The formal training provided by TreeHouse has also been a key success factor in increasing the confidence levels of parent groups when interacting with senior local authority officers and practitioners. Parents have appreciated the TreeHouse staff responding to individual needs and providing focused, timely and non-patronising training.

“Parents reported having been ‘previously naïve’ to many of the… protocols around engaging with professionals and MPs and getting their points across in a succinct way.” – OPM Evaluation Report Credibility of TreeHouse and the DCSF: Parents view their association with TreeHouse, and indirectly with the DCSF, as fundamental in influencing service design and getting their message across. Greater knowledge of national policy has also aided in providing more credibility for parents’ campaigns.

Developing sustainable national parent networks: Meeting with other groups was seen by many participants as one of the most “inspiring and enriching” opportunities provided through the PSP. The interaction between different parent groups across locations was felt to be invaluable in exchanging experiences and sharing methods for overcoming difficulties like dealing with local authorities and funding problems. Several group leaders and survey respondents indicated that the small, but notable, national networks that had been facilitated through the PSP were sustainable and set to carry on past the life of the PSP.

1.2 What have participants gained from involvement in the project?

The main benefits of parental involvement were highlighted by two thirds of respondents taking part in the end of project evaluation as follows:

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Greater parental confidence in campaigning: TreeHouse has given parents the tools, support and training needed to instigate and set up new projects, to make links with local authorities and to ensure they were being listened to by the local authority. This has led to them having a greater influence over service design and delivery. Parents saw this confidence building as being encouraged, facilitated and supported by the work of TreeHouse staff on the PSP.

“TreeHouse opened the doors for us but we had to walk through…” – Group Leader More credibility and parental empowerment: Parents have felt better equipped to articulate the needs of their children and the family, and speak with senior local councillors and MPs, as a result of the support provided through the PSP. They also felt more confident in speaking with GPs, paediatricians and psychologists in influencing the wider design of services to meet the needs of children with autism and their families.

“TreeHouse taught us the true meaning of campaigning.” – Parent Enhanced strategic thinking: Parents have developed a renewed ability to step outside of their personal situation and ‘de-personalise’ their campaigning in order to get messages across in a more balanced and influential way. This has been seen as having far-reaching benefits in terms of influence over service provision at both a local and a national level.

Enhanced relationship with TreeHouse: Several parents involved in the PSP identified that TreeHouse also helped them to change their attitudes and ambitions around their own involvement in the design and commissioning of services for children with autism. Whilst parents had felt at the outset that their relationship with TreeHouse was one-way, by the end of the three years they felt it had developed into a real partnership, with TreeHouse staff gaining valuable insight into what it is like to live with children with autism and be a parent campaigner. Parents who were surveyed and interviewed felt that this provided them with a role and purpose, and felt reassured that they were given the opportunity to feed their experience back up to a national level.

1.3 Challenges and barriers to achieving outcomes A number of challenges and barriers to change were identified through the evaluation: Momentum and group leadership: Time commitment issues and the conflicting priorities of group leaders slowed progress in some areas and restricted better partnership working with local voluntary groups.

Whilst it was recognised that all group members were motivated by the cause alone, financial incentives were suggested by some participants as having the potential to make a positive impact on the efficiency and management of the groups.

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

Time and budgetary constraints: The perceived lack of budget, and the small and focused nature of the TreeHouse support team, has limited the amount of face-to-face contact time parents had with TreeHouse staff.

“We wished we could have spent more time with TreeHouse, as their visits and contact was just so useful, but it just wasn’t regular enough sometimes to push on progress. With more money and resources, we could have achieved twice as much in the time.” – Group Leader Difficulties in providing adequate support: Difficulty was found in projects being spread across the country, causing a strain for TreeHouse staff who had long distances to travel and several locations to support. Staff found the physical distance often made it difficult to maintain momentum and provide groups with the support they needed. Suggestions were made that perhaps a smaller regional area might have been easier to manage and affect more widescale change within the region.

During points at which several of the groups were taking part in the same event, for example the ‘Walk In Our Shoes’ campaign, one participant felt that:

“There were too many groups and not enough of them [TreeHouse staff]… [we] would have appreciated more support at times, certainly during the ‘Walk In Our Shoes’ I was out on a limb.” – Group Leader London-centric support: Participants also raised issues in relation to the London-centric nature of many of the opportunities offered to the groups participating in the PSP. Those raising this particular issue appreciated that London was a “hub for much of the activities and events that take place at a national level”. There was however a strong sense that the groups in closer proximity to London were able to attend events and take up opportunities that were beyond those further afield. This led to parents in Oldham, Lincolnshire and Poole feeling they had missed out on some of the opportunities closer to London. One member of a PSP Group in the north of England felt that there were:

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“more opportunities to get involved for [those groups] nearer London, and better access to resources.” – OPM Evaluation Report

Localised support: Many of the groups saw the association with a national charity as bringing a wealth of expertise and influence, and providing a positive outcome of involvement in the PSP. However, TreeHouse’s lack of local presence was considered to be a problem in relation to providing support and opportunities that were relevant and suited to the local context the groups were working in. Several groups articulated that they were unable to provide good local support because of this lack of regional presence:

“To really do it properly you need to do it at a regional level, in order to have a regional view and troubleshoot when things happen locally… to think strategically and have a good understanding of the local context… we need that TreeHouse PSP type support in every region in the country.” – Parent Lack of scoping phase: In light of the above challenges of integrating PSP supported groups into the local context, a number of respondents proposed that many of the challenges would have been less significant if “more time was allocated at the start of the project to establish a better understanding of the local context and factors affecting the project”. Respondents felt it would have been preferable if TreeHouse had had the opportunity to carry out a more robust scoping exercise to gain insight into the local context and needs of the community. Several interviewees also felt it would have been preferable to carry out a more formal skills audit at the start of the project, to ensure that the formal training provided was relevant to the individual and organisational needs.

“There was a sense from survey respondents and interviewees in two locations that appropriate care was not taken in checking what provision existed in the area already. As a result, the PSPsupported groups were seen in some cases as being a hindrance to ongoing dialogue and parental participation with the local authority.” – OPM Evaluation Report Creating imbalance locally: In two areas, respondents felt that TreeHouse had perhaps not considered the impact that the empowerment of the PSP group, through support and resources, would have on relationships and alliances with other similar groups in the local area. In one area, which already had existing parental engagement structures in place, local authority officers and third sector groups working in partnership with the local authority commented that the PSP group had a negative impact on the already established organisations and processes for engaging with parents. Similarly, an interviewee from another

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

location discussed the “imbalance” that can be achieved in a local area when one group is provided with significant resources and support over another:

“It has created some imbalance at a local level.

TreeHouse do articulate [that] if they can get things sorted for autistic children then everything else will improve, but you can’t direct all resources to one group… I think one of the key things is [for TreeHouse] to try and provide support to the Autistic community generally as distinct from a single group.” – Local Authority Representative 1.4 Sustainability and lessons for the future TreeHouse staff were each asked to identify the one key piece of learning from their experience of the PSP. This was felt likely to be particularly useful in terms of providing guidance for any similar projects carried out in the future: zz Ensure that the project focuses on strengthening structural and cultural factors to underpin inclusive and accessible parent participation – i.e. factors which will endure changes in local authority personnel and parent group membership. zz Invest in the parents, make them feel valued and give them the confidence to speak up and out, and to use arguments and language that they might previously have felt self-conscious about. This may include raising issues around disability discrimination. zz Model behaviours with group leaders, which are most suitable for leads to use with their groups to maintain motivation and foster productive working relationships. zz Invest time in engaging effectively with parents from the outset: time spent on the phone and visiting groups has been one of the most outstanding aspects of the work of the team and been the factor leading to most of the successes. zz Emphasise the potential benefits of press/media work and media training for parents from the start to get parents feeling confident to take on media work and see it as an integral part of campaigning. zzTake time at the beginning of the project to select local authorities who are likely to be receptive, and teams of parents and professionals to drive the project forward.

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“Set up the infrastructure that will be ripe to affect the most positive and long lasting change.” – PSP Manager

Parents and others provided the following recommendations for implementing a similar project or establishing parent campaigning groups in other areas in the future: zz Carry out an adequate scoping exercise: more time needs to be allocated to the start of any future projects to establish a better understanding of the local context and factors likely to affect the project. zz Consider impact on existing groups: better communication is needed at the outset of the project to explain the purpose of the PSP to existing groups, and identify shared outcomes and objectives to promote better joint working. zz Align support with existing provision: a needs analysis and research process should be carried out before the production of any resources, to build on existing local resources and ensure appropriate dissemination of resources. zz Build up relationships with local authorities early on: more time should be spent at the beginning in communicating the aims of the project and establishing links with key local authority contacts to get them ‘on board’. zz Maintain momentum and motivation: parent groups need to be encouraged to continually break their goals and objectives down into ‘bite size chunks’, and build cycles of activities into the project which allow for respite.

Many participants felt that the PSP had ‘done what it set out to do’ by empowering and mobilising parent groups to continue in actively campaigning for better services for children with autism. These parents felt that the skills and confidence they had developed through their involvement in the PSP would now be with them ‘for life’, and would enable them to hopefully pass on their learning to other parents in the future:

“I can’t express enough what an impact TreeHouse has had on me and the rest of our group. We are now fuelled to try our best to carry on without the prop of constant phone calls, and will do our best to take the TreeHouse message far and wide. Thank you TreeHouse.” – Group Leader Making Parent Participation a Reality Project The success of the PSP has given TreeHouse the knowledge-base to continue working directly with parents and carers through the new ‘Making Parent Participation a Reality’ Project (PPP). Drawing on the experience of the PSP team, TreeHouse put together a strong application for funding from the DCSF for another project focused directly on the involvement of parents in the commissioning of services for children and young people with disabilities.

Continuity will be ensured by the transfer of a key member of TreeHouse staff from PSP to the new project, as well as the inclusion of several PSP parents in the reference group for the new project.

Opening Doors for Change Evaluation of the TreeHouse Constructive Campaigning Parent Support Project July 2009 Page 11

The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

Key learning points from the PSP have directly informed the planning of the new project. In particular, the number of areas involved has been reduced to a more manageable four, to enable a greater level of support; regionally-based ‘northern area’ and ‘southern area’ project officers have been appointed, addressing the issue of resources and management being ‘London-centric’; and local authorities have been directly involved with shaping the purpose and reach of the project in their area, allowing them to become fully engaged from the outset.

Shaping Children’s Services Together TreeHouse will publish a free resource called ‘Shaping Children’s Services Together’, based on the experiences of the participants in the PSP. It will be easily available to all parents and carers across England and all local authority staff working in services for children with disabilities. The resource aims to support and encourage both parties to work together for better services for children and young people with autism.

For parents, it will be a practical guide to encourage them to get involved and it will highlight the benefits of joint working to effect change, based on the experiences of the parent groups participating in PSP. For local authorities, it will provide a guide to working with parents and parent groups so that services are shaped by and sensitive to the needs of children, young people and families with autism. It will inform local authority staff as they develop their skills in working collaboratively with parents.

The resource will enable both parties to see from the other’s perspective and encourage transparency, trust and effective joint working.

For more information about either of these projects please visit www.treehouse.org.uk

Opening Doors for Change Evaluation of the TreeHouse Constructive Campaigning Parent Support Project July 2009 Page 12

Part two: the role of local authorities This section looks at some of the challenges to partnership working identified by local authorities and parents in the OPM evaluation, and supported by evidence from the PSP. It gives examples and ideas of how these challenges can be overcome.

“We come at it from different angles, not different sides.” - Principal Educational Psychologist 2.1 Promoting partnership working For many of the local parent campaigning groups supported by the project, a very positive and productive partnership has developed between the parents and the local authority. For example in Staffordshire, where the Corporate Director of Lifelong Learning has been enormously supportive. He has taken positive steps towards effecting change in the areas highlighted by the Staffordshire Parent Group’s campaign. Informal exclusion has significantly reduced since, at the parents’ request, the Director wrote an open letter to parents asking them to contact him personally with instances of informal (illegal) exclusion.

However, in other areas engagement with local authority officers was highlighted as forming a particular challenge, with a couple of group members admitting that they had ‘given up in trying to get the local authority on board’ after meeting continuous resistance. In the areas where such problems were encountered, the effectiveness of the campaigns was impeded.

“It was difficult to find capacity to ensure local authority ‘buy-in’ to the process from the outset, and a lack of support from key representatives presented significant barriers to change.” – PSP Manager The following strategies have been effective in promoting partnership working: For local authorities zz be open and transparent zz provide clear information on how the local authority plans provision for autism education: the planning cycles, distribution of budgets, roles, appropriate channels for engagement and consultation, for example, in the form of a training package or web-based document zz value the wealth of personal experience and knowledge that parents can provide

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

zz acknowledge parents as partners in the planning and review of services for children with autism zz work with parents to develop training programmes for schools, parents and local authorities, which include parents as trainers zz include parent representatives on strategic working groups, with clear mechanisms for decisions to feed into the delivery planning process zz visibly demonstrate your support for autism awareness and other events by using your networks to advertise the event and encourage attendance zz appoint a dedicated Parent Participation Officer zz give parents clear guidance on the most appropriate channels through which to maintain contact on issues relating to the education of children with autism zz support parents by enabling them to communicate effectively with educational settings in your area, for example by distributing reports or surveys by email on their behalf zz work alongside parents to collect data and evidence to identify need and inform future planning of services for children with autism zz make adjustments to ensure all parents can engage successfully and productively, including adults with autism; try and see the positive input that all individuals can bring

“I believe that people on the spectrum have got more staying power because they look at things that aren’t working, and analyse why they aren’t working and try another way.” – Group Leader For parent campaigners zz be constructive and professional zz invest adequate time upfront in explaining the purpose of your campaign to local authority officers zz demonstrate your understanding of the national context of Special Educational Needs (SEN) and autism zz understand local authority processes and procedures zz invite local authority representatives to participate in your campaigning events zz invite senior local authority figures to open your campaign launch zz send background information and papers out well in advance of meetings and events zz keep in touch with your local authority and Primary Care Trust (PCT) contacts through regular email updates

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Case study Medway Autism Group Information Centre (MAGIC) – Medway There is an excellent relationship between MAGIC and the local autism outreach service and the group leader contributes regularly to their service. MAGIC have established an Autism Spectrum Disorder clinic with the lead consultant paediatrician in Medway. This runs every four to six weeks, and gives parents valuable access to this knowledge, which they may otherwise receive only once a year.

The local authority in Medway has demonstrated its commitment to engage with parents. In response to parents’ concerns about finding the systems and processes they faced difficult to negotiate, an educational psychologist visited the group and spent time demystifying the process and answering questions from parents.

2.2 Accessible participation Providing opportunities for local decision-makers to engage with parent campaigners, outside of formal meetings has proved to be very successful.

The ‘Walk In Our Shoes’ campaign, where councillors were invited to spend time with families, to increase their understanding of the challenges facing families of children with autism by experiencing the reality of their day to day lives, was a real catalyst for developing long-term relationships.

In one local authority, the portfolio holder for social care took part in three events over two days to gain an awareness and understanding of issues facing local families. Parents interpreted this demonstrable commitment as a positive invitation for partnership working. It has been instrumental in forging a strong and positive relationship between the councillor and the parent group.

In another local authority an MP, with whom the parent group had previously had no contact, has arranged a meeting between the parent group and all portfolio holders to support the parents’ network building and ensure all stakeholders are talking to each other.

“For many parents, the interest local decisionmakers expressed in participating in ‘Walk In Our Shoes’ has generated significant momentum for their local campaign.” – ‘Walk In Our Shoes’ Campaign Report As well as increasing understanding about autism within local authorities, parents reported having a better understanding of the role and remit of decision–makers and the ways in which they can support parents in their constructive campaign.

Opening Doors for Change Evaluation of the TreeHouse Constructive Campaigning Parent Support Project July 2009 Page 15

The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

Case study Families of Children on the Autistic Spectrum (FOCAS) – Redcar & Cleveland There is a very positive and constructive relationship between members of the local authority and FOCAS which has resulted in several mutually beneficial outcomes. The local authority has offered great response and support to parents in their area.

For example, FOCAS created two questionnaires, one for schools and one for parents and carers of children with autism. The results of the survey were used to inform a large multi-agency conference organised by the local authority. The local authority gave the research their full backing and was instrumental in ensuring that schools supported the project by returning the survey.

“I would be very grateful if you could find the time to complete a response as we are about to review our Redcar & Cleveland policy on making ourselves an Autistic Spectrum Disorder friendly local authority. Results of this survey could provide a valuable source of information on where we need to go next in our new or refreshed action plan.” – Excerpt from email from Principal Educational Psychologist in support of the survey The relationship has resulted in the launch of a new Children and Young People Plan, which incorporates an autism strategy.

“FOCAS are very pleased that [the autism strategy] is now being integrated into the Council’s main strategic document for all children and young people in Redcar & Cleveland.” – PSP Parents’ and Carers’ Seminar Report 2009

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Part three: constructive parent campaigning This section is a resource to aid both parents and professionals to continue to work constructively together in this area in the future. It summarises the learning from the three years of the project (2006-09), and describes strategies for running an effective local parent campaign. This is based on the OPM evaluation and examples and case studies from the PSP are used to illustrate the findings throughout.

3.1 Establishing a parent campaigning group Learning from the experiences of the parent groups involved in the project, the following processes and group characteristics have been identified as leading to positive outcomes.

Establish and maintain an autism parent support group zz find out if there is already a support group in your local area. The National Autistic Society (NAS) Autism Services Directory lists hundreds of local autism groups throughout the UK3 zz if there is not an active group for parents of children with autism in your area, get in touch with other parents to start a new group via your local parent partnership service4, talk about autism5, the NAS website6, and Contact a Family7 zz hold meetings regularly – at least monthly – and publicise well in advance zz make the meetings a social activity which parents and carers enjoy attending zz regularly invite speakers to meetings zz write up notes of meetings promptly and accurately zz share responsibilities within the group, with each parent having a clearly defined role, e.g. chair, secretary, communications zz produce and disseminate regular newsletters, including information on training courses and participation opportunities zz establish an up to date website for the group with links to other organisations Positive outcomes zz an active, positive support group is established zz having input from a large group of parents will add legitimacy and weight to your campaign Form a committee or steering group to plan, review and deliver campaigns zz form a smaller steering group for parents who are interested in campaigning zz give steering group members well-defined roles and responsibilities

3 National Autistic Society (NAS) Autism Services Directory www.info.autism.org.uk 4 National Parent Partnership Network www.parentpartnership.org.uk 5 talk about autism www.talkaboutautism.org.uk 6 National Autistic Society (NAS) www.nas.org.uk 7 Contact a Family www.cafamily.org.uk

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

zz establish mechanisms for both formal and informal feedback between the steering group and wider parent support group zz set both short and long-term goals for your campaign Positive outcomes zz campaigns are more targeted and focussed when planned through a steering group zz groups where a number of parents share responsibilities are able to sustain momentum if a key parent campaigner takes time out zz group leaders with strong back up or support are at less of a risk of becoming ‘burnt out’ zz parents who are not motivated to campaign themselves at the present time can still feed ideas and experiences into the steering group to inform its work zz motivation to continue is enhanced as short-term goals are met

“Parents need to think of campaigning as a marathon not a sprint.” – PSP Manager Access information and training to build skills within the group zz identify strengths and development needs of group members zz develop skills through training in effective group work, presentation skills, negotiation skills and media training zz contact your local Council for Voluntary Services (CVS) for advice on training and support for local voluntary groups. A directory of local CVS is available on the website of The National Association for Voluntary and Community Action (NAVCA)8 zz ensure that group members have a good understanding of the workings of local government; look on your local authority website for its Special Educational Needs (SEN) policy zz find ways for the group to access up to date information on local and national government initiatives, for example, by signing up to policy email briefings run by voluntary organisations (e.g. the TreeHouse Policy e-brief9) zz order a copy of Parent Participation – Improving Services for Disabled Children, available from Contact a Family

“[each group member should undertake]… a skills audit of where you are as an individual, your experience, what you think you might need to work on or what you are confident at.” – Parent Opening Doors for Change Evaluation of the TreeHouse Constructive Campaigning Parent Support Project July 2009 Page 18

Positive outcomes zz parental confidence is increased zz the group is more effective in reaching its aims 8 National Association for Voluntary and Community Action NAVCA www.navca.org.uk 9 For information on the policy e-brief please email the Policy and Parliamentary Team on policy@treehouse.org.uk

zz increased knowledge of national policy gives parents the understanding and foundations to back up their views

“When someone asks me my opinion on services, I can now back up my answers by quoting national policy as well as speaking from personal experience.

The two together are very powerful.”– Parent Case study Children and Parents Asperger Autistic Support (CAPAAS) – Lincolnshire CAPAAS have worked on a number of initiatives to allow parents to access relevant training. These include working closely with SEN law specialists to arrange for training to be delivered to parents throughout Lincolnshire, and with the National Autistic Society on providing their ‘Help’ training programme.

Be aware of the local context and maximise opportunities for collaborative working zz find out what other parent groups exist in your local area zz communicate the aims and objectives of your group clearly to other groups, and take time to identify shared outcomes zz work in partnership with local voluntary agencies zz consider working collaboratively as part of a pan-disability consortium Positive outcomes zz opportunities for effective partnership working are identified zz alliances can be more powerful and influential in terms of driving change zz local authorities can see a clear economic argument, where one solution can meet the needs of several campaigning groups

“Professionals and local authority representatives expressed concern that opportunities were missed by individuals from PSP-supported groups, who were unwilling to work in partnership with existing groups and share learning from the resources and support gained through TreeHouse. This was identified as forming a barrier to accelerating learning across the local area.” – OPM Evaluation Opening Doors for Change Evaluation of the TreeHouse Constructive Campaigning Parent Support Project July 2009 Page 19

The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

Case study Oldham Education Campaign Consortium (OECC) - Oldham The OECC is made up of Bright Futures (lead organisation), Oldham Support for Carers in Autism, Fantastic Dyspraxic Kids and ASPACE. The consortium formed due to their common objectives on autism and related developmental disorders and their belief that there is strength in numbers.

“We have more people, which equals a stronger voice. It has also enabled us to get the message out there to more families, because each of the groups has their own network of contacts.” – Group Leader, Bright Futures Notable successes include: zz successfully lobbied Oldham council and the PCT to sign up to the Every Disabled Child Matters (EDCM) charter zz awarded two grants under the ‘Together for Disabled Children’ initiative to support parents to understand the core offer and the disabled children’s services national indicator (NI 54). To be achieved by holding workshops to provide clarity on what entitlements and services disabled children, young people and their families can expect in their area, and encouraging more parents to get involved in providing feedback on their experiences of these services zz successfully lobbied the local authority to fund a Parent Participation Officer

“Forming a consortium has been crucial to the success of our project, as we have been joined by people who are as committed and driven as we are to change things locally.” – Group Leader, Bright Futures 3.2 Strategies for successful local campaigning

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Organise multi-agency campaigning events zz publicise events widely, well ahead of the time zz choose a topical and relevant theme with opportunities for participation from attendees zz make the aims and objectives of the event transparent to all zz invite VIP speakers to attend the meetings zz provide an accessible venue, light refreshments zz produce and distribute an event report, summarising the main activities and outcomes zz ensure local authority representatives feel fully included and welcomed

“As a local authority officer, I attended when I was invited - at a set time for part of the meeting questioned and then left. I did not feel that it was a partnership at all. I think so much could have been achieved if local authority officers had been made to feel more welcome and part of things.” – Local Authority Representative Positive outcomes zz parents and professionals share ideas in workshops and discussions zz constructive dialogue is established zz begin to overcome suspicion and build a relationship of trust between parents and local authorities

Case study Jigsaw – Staffordshire Jigsaw, with others, was awarded lottery funding for an ‘Autism Awareness in the Community Partnership’. This inter-agency partnership developed, produced and delivered Autism Awareness sessions to community groups in Staffordshire. Its aim is to raise awareness of autism in local groups such as Guides, Scouts, swimming and sports clubs so that children with autism can enjoy a positive experience, cared for by people who have an awareness of their needs.

“Parents and professionals deliver these sessions together. This is a positive move for parents as they will become more confident and proactive in improving the environment for their children.” – Group Leader, Jigsaw Deliver a well researched, evidence-based campaign zz evidence is collected via a short survey on paper or via the internet zz anonymous case studies are shared with decision makers as part of campaigns zz event reports are written up and include policy context to introduce campaigns and issues Positive outcomes zz the campaign is more effective when backed up with clear evidence

“Peers... respond better to a logical argument that is evidence based.” – Member of the House of Lords

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

“Groups are aware of the importance of collecting evidence for their local campaigns and presenting it to the right audience, in the right format at the right time. We need to continue to work with parents on this as it is so important. They have all contributed to survey responses, case studies and seen how event reports are written up and when disseminated widely, can also be an effective campaigning resource.”– PSP Manager Keep campaigns strategic zz encourage parents to step outside of their personal situation and ‘de-personalise’ their campaigning in order to get messages across in a more balanced and influential way zz remain neutral and balanced when trying to get points across in meetings zz plan campaigns to fit in with local authority planning cycles and decisionmaking structures Positive outcomes zz far-reaching benefits in terms of influence over service provision at both a local and a national level

“That’s what’s hard for parent campaigners. We are motivated by a lack of provision for our own child.

But what we need and the only way you are going to convince local authorities is by showing the breadth of lack of provision… keeping it strategic.”

– Group Leader Represent the group at strategic and other autism specific working groups within local government zz take steps to ensure that the parent or carer attending represents the collective concerns of their parent group zz review minutes well in advance and carry out any actions zz keep communication positive and constructive even when presenting issues which may challenge other people’s views zz provide timely and detailed feedback to the rest of the parent group zz there must be a clear mechanism for discussions and decisions made to be fed into the planning and delivery process

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Positive outcomes zz parents have a greater influence over service design and delivery zz planning takes account of the needs of children with autism

“There was also evidence... that PSP-supported groups were now having a more ‘sophisticated interaction’ with local government, with reference to a considerable number of formal meetings, discussions and communications between PSP groups and local authorities.” – OPM Evaluation Report Inform educational practitioners zz find creative ways to promote increased awareness amongst educational professionals, as well as decision makers, as part of your campaign zz work in partnership with your local schools to provide information, training and advice to teaching and support staff

“We are seeking permission from head teachers to use the school premises as venues for speakers.

The idea behind this is to take the training to the teachers, by offering the teachers of the school free places.” – Group Leader Positive outcomes zz increased awareness of autism and how to meet the specific educational needs of children with autism zz school staff have greater access to training, and therefore develop their ability to implement successful strategies and interventions within the classroom

Case study As-U-R – Poole Poole parent group As-U-R is working to create a model autism friendly mainstream school. A steering group will be set up with representatives from As-U-R, the governors of the school, the Special Educational Needs Coordinator (SENCO) and parents to create the school model.

The Borough of Poole supports this and would like to roll this model out to all schools in Poole.

Case study Medway Autism Group Information Centre (MAGIC) – Medway Medway group MAGIC is represented on a partnership consortium for all SENCOs in the locality to discuss difficulties associated with supporting pupils with autism. MAGIC is a valued member of this consortium and receives frequent referrals.

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

MAGIC is recognised and admired by many as the driving force for change in the way Medway schools manage their children with autism.

Schools and other professionals invite MAGIC to train, support and advise their staff. Their training portfolio currently includes: managing challenging behaviour, self esteem and autism awareness.

Case study The PSP Autism Awareness Calendar TreeHouse produced two highly acclaimed Autism Awareness Calendars which were inspired by parents. They included simple, practical strategies for communicating with children with autism and were sent to every primary and secondary school in each of the ten areas. Evaluation of the project highlighted the calendars as a particularly successful resource. Participants felt these calendars achieved outcomes at different levels: as a practical resource for use within education settings, and raising awareness of the groups and TreeHouse at a national (and international) level.

“Excellent and informative resources… I feel they would be of great benefit for my classroom and a school that I provide support in. I feel this resource would help support the advice I provide on autism.” – Teacher “A fantastic way of raising awareness of how to communicate with children with autism and why they do certain things or feel the way they do.” – Nursery Teacher 3.3 Strategies for successful national campaigning Attend public consultation meetings for parents zz make links with national charities that have policy and parliamentary teams, in order to find out about consultation events and how to contribute zz look for other means of contributing to consultations as well as meetings, for example web forums

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Positive outcomes zz used constructively, this leads to increased credibility and a higher profile for the group zz an effective way of raising awareness of the key issues zz an empowering experience for parents zz an opportunity to influence nationally as well as locally zz an opportunity to develop a wider network

“Parents are in the unique position of being able to report actual need over perceived need. They often do not realise how powerful and influential their report of their experience is.” – TreeHouse Policy and Parliamentary Manager Case study The Lamb Inquiry At the 2009 PSP Parents’ and Carers‘ Seminar Phillippa Stobbs, the Special Educational Needs (SEN) professional advisor for the DCSF, invited PSP parents to contribute their thoughts on how the SEN system could be improved, as part of the Lamb Inquiry. She sought views on how the current SEN system is working, what promotes children’s learning and wider outcomes and what increases parental confidence.

“So beneficial to be able to contribute our experiences and ideas.” – Parent Use national campaigns to instigate local change zz encourage the local authority and PCT to sign up to and implement relevant national campaigns zz local campaigning is vital to ensure that proposed changes resulting from successful national campaigns are reflected locally Positive outcomes zz encourages the local authority to review specific points included in the charter zz raises awareness across the local community

Case study Every Disabled Child Matters (EDCM) EDCM is a national campaign to achieve rights and justice for every disabled child. The three year campaign had great success in achieving increased resources for disabled children and their families, though the Aiming High for Disabled Children funding package of £340 million for the period from 2008-2011.

Parent groups have used the national campaign to promote their local objectives. Group members have presented at local EDCM workshops, and lobbied their local authority and PCT to sign the EDCM charter and develop a local implementation plan.

For example, in Oldham a local implementation plan has been developed and a Disability and Complex Needs Delivery Partnership set up to ensure that the targets in the Charters are implemented.

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

Case study Ealing Contact a Family, the ‘Walk In Our Shoes’ Campaign The ‘Walk In Our Shoes’ Campaign was a national event which aimed to promote awareness and understanding of autism among decisionmakers.

The PSP local groups contacted senior politicians and practitioners and invited them to spend a day ‘in their shoes’. The participants were able to observe the family set up and what day to day life is like supporting and caring for an individual with autism.

“There is no substitute for firsthand experience…

Spending just a couple of hours with the family was more valuable than 10 policy papers.” – MP A key contributing factor to the success of this campaign was the interrelationship between local and national campaigning. By synchronising their local activities with each other as well as an international event that promotes the rights of disabled people (International Day of Persons with Disabilities) parents felt that they were participating in something with national significance.

An unexpected outcome of the event, which indicates that the campaign was successful in raising the profile of autism at a national level, was that John Barrett MP, Shadow Minister for Disability, tabled an early day motion in support of Walk In Our Shoes, which was signed by 69 MPs. The event also altered the traditional perception of campaigning for many parents. For example, in Ealing where the group had previously struggled to engage a significant number of parents in the local campaigns, Walk In Our Shoes was widely taken up. Parents saw the event as an accessible way of influencing decision-makers, and those parents who had felt intimidated by campaigning were motivated to be involved as they were able to make it personal and relevant to them.

There has since been an increased confidence among parents resulting in a new momentum for the local campaigning group.

“This event has sparked a wider interest. It has given me hope that others will want to get involved.” – Parent in Ealing The most significant outcome of the Walk In Our Shoes campaign is the development of productive and sustainable relationships between families and decision makers.

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Engage with national government zz attend MPs’ surgeries, build up a relationship and make the issues real to them zz encourage your local MP to pose parliamentary questions zz find ways to illustrate the human element in your cause, the more directly this can be presented the better zz keep all political parties involved in your campaign zz work in partnership with national charities, e.g. those holding fringe events at party conferences zz consider using e-campaigning to influence MPs and decision makers.

Targeted email campaigns are an effective means of communicating campaign objectives, and lobbying for specific outcomes Positive outcomes zz lobbying a party when the local authority is controlled by that same party is very effective zz develops a constructive relationship with your local MP Engage local and national media zz develop a strategic plan for engaging with the media during your campaign zz work on building a good relationship with journalists you trust zz beware of reactionary engagement with the media; going to the press in the heat of the moment as a result of a bad experience can undo good work and damage working relationships which will take considerable time to rebuild zz spend time as a group identifying your main audiences and developing key messages, and ensuring that all members of the group communicate consistently about the campaign zz be aware of national events and initiatives which are attracting coverage, and take the opportunity to try and engage local media

‘‘A good message is strong, distinctive and simple.”

– PR executive advising the 2007 PSP Parents’ and Carers’ Seminar “Angry parents shouting off may interest journalists as it makes a good story, but it’s not useful for the long term success of the campaign, however tempting that may be.” – Group Leader Positive outcomes zz media coverage of the campaign is more focused and accurate zz parents are equipped with the knowledge of how to communicate effectively to their target audience zz messages about the campaign are consistent

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

“When you are passionate about something you want to make the most of every opportunity to get the message out.” – Group Leader Case study RAGS – Havering RAGS were fortunate in having a community radio station, run by a core team plus volunteers, which provides quite a nurturing environment for local groups to begin engaging with the media. The team have worked with RAGS on projects such as ‘community action’ which allows groups to record short adverts to publicise events and meetings. The adverts, which run over a number of weeks, have led to an increase in the number of people contacting the group for information, as well as increased attendance at events. This has given them the confidence to contact their local commercial station.

“It is difficult to accurately quantify the effect of engaging with the media has had in Havering, but it has certainly put our name in the frame. Any way you can get your message out to the general population is important.” – Group Leader During the ‘Walk In Our Shoes’ campaign, a reporter spent the morning at one of the events RAGS held at a school, and the resulting interviews were broadcast on the radio over a number of days. The reporter stayed for the whole event, and this was the beginning of a supportive relationship. The group leader has since taken part in an interview as part of Carer’s Week, alongside a local authority professional. The RAGS group leader also did a radio interview for the BBC with TreeHouse as part of the ‘Walk In Our Shoes’ campaign.

“I found the media training received as part of the PSP to be valuable in preparing me for engaging the media. In particular the practical tips such as repeating the name of your group, and not assuming that people have any background knowledge of your subject matter.

I felt more confident, more professional.” – Group Leader Opening Doors for Change Evaluation of the TreeHouse Constructive Campaigning Parent Support Project July 2009 Page 28

Coverage in the press has been less consistent, depending on what else is going on in the news. However the local commercial newspaper has recently featured the group leader in their lifestyle column.

“I would say to any group thinking about engaging with the local media, definitely do it, but to do it with caution. It can do a lot of good, but there is also potential to do some damage if you are not careful. Chose your spokesperson wisely.” – Group Leader Work in partnership with national charities zz to ‘piggy back’ on events which can raise the profile of your campaign zz invite speakers from national charities to attend meetings and campaigning events zz to find out about opportunities to contribute to consultations zz to access expertise, for example media training and policy updates zz sign up for newsletters and email forums which will provide up to date information about developments at national level within the sector Positive outcomes zz support and access to information zz widening the network

“Parent leads participating in focus groups highlighted that they now felt they had greater credibility in speaking to agencies and service providers, due to a greater knowledge and understanding of national policy, and their links with the DCSF through TreeHouse.” – OPM Evaluation Report Case study World Autism Awareness Day (WAAD) To celebrate World Autism Awareness Day (WAAD), TreeHouse PSP parents and carers nominated their ‘Local Autism Champions’.

Campaigning parents from across England nominated people, who they believe are raising awareness of autism, and positively contributing to the improvement of autism services locally.

Redcar & Cleveland nominated their Educational Psychology Team as their Local Autism Champion because of their large involvement in the ‘Early Bird Scheme’. The scheme is a chance for parents, schools and education centres to teach families about the different autistic spectrum disorders and strategies for coping with them.

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

“We are very proud to have been nominated Local Autism Champions as improving services for children with autism and their families is an issue that is very close to our hearts” – ASD team’s Senior Education Psychologist Make links with other parent campaigning groups throughout the country zz use the talk about autism online community to make links nationally and internationally. The aim of the talk about autism online community is to provide a safe and supportive space where parents, carers and families can discuss issues surrounding autism. It hosted a group for members of the PSP to meet online zz join other online communities, for example Facebook, Twitter and Yahoo groups zz attend parent participation workshops and regional events10 zz consider ‘buddying’ with a campaign group member in another part of the country, for support and advice from someone outside the area Positive outcomes zz meet like-minded parents zz exchange of ideas zz a chance to find out what has worked well for others zz opportunity to share resources and examples zz inspiration and support

“It is so inspiring to hear about other groups’ campaigning successes, and what can be achieved with hard work.” – Group Leader Final thoughts

“I often talk about my daughter’s progress as two steps forward, one step back, and I think in a way that’s kind of where we are, but as long as the steps are, overall, forward then we’ll keep going and... focus on what we want which is improved services for children with ASD.” – Group Leader Opening Doors for Change Evaluation of the TreeHouse Constructive Campaigning Parent Support Project July 2009 Page 30

“Be pedantic, and just don’t give up. When it’s difficult, just don’t give up.” – Group Leader 10 Together for Disabled Children has been selected to support the Aiming High for Disabled Children development of parent participation and parent forums. www.togetherfdc.org

Acknowledgements TreeHouse would like to thank all the parents and carers who have participated in the Parent Support Project. Through campaigning constructively they have made a real difference to children and young people with autism in their area and are an inspiration to others.

As-U-R in Poole www.as-u-r.org Birmingham North Autism Support Group CAPAAS in Lincolnshire www.colour-se7en.co.uk Ealing ASD Support Group www.cafamily.org.uk FOCAS in Redcar & Cleveland www.focas-support-group.co.uk Jigsaw in Staffordshire Email: keet.denny@btopenworld.com Lambeth Parents Group MAGIC in Medway www.medway-magic.org Bright Futures (lead member of the OECC) in Oldham www.oecc.org.uk RAGS in Havering www.rags.btik.com We would also like to thank the local authorities in the participating areas for their responsiveness to the constructive campaigning approach, the PSP Reference Group for their advice and guidance, and the Office for Public Management (OPM) who carried out the evaluation which forms the basis of this report.

Finally, we are grateful to the Department for Children, Schools and Families, the Sylvia Adams Charitable Trust, the Harold Hyam Wingate Foundation, CHK Charities Ltd, The Edith Murphy Foundation, and one donor who wishes to remain anonymous, for supporting the project.

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham Poole Redcar & Cleveland Staffordshire

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Appendix Expected outcomes of the Constructive Campaigning Parent Support Project as defined in the application to the DCSF: zz better trained education practitioners zz increased understanding of needs of children with autism zz increased involvement of families in planning services zz better understanding of the workings of local government zz increase in dialogue between voluntary groups/families zz increase in partnerships between voluntary agencies zz sophisticated interaction between agencies and government zz services developed as a result of partnership working