The Constructive Campaigning Parent Support Project: Report 1 - An introduction to the project, 2007

The Constructive Campaigning Parent Support Project

An introduction to the project Report 1 – 2007 An introduction to the project Report 1 – 2007 Page 1

The Constructive Campaigning Parent Support Project

Background TreeHouse, the national charity for autism education, was founded in 1997 by a group of parents of children with autism. The TreeHouse vision is to ‘transform through education the lives of children with autism and the lives of their families’. Following a merger in 2005, TreeHouse and Parents’ Autism Campaign for Education (PACE) produced Constructive Campaigning for Autism Services – the PACE Parents Handbook. The handbook is a practical guide for parents who want to play a part in building better services for children with autism and formed the basis for the Constructive Campaigning Parent Support Project.

Constructive Campaigning for Autism Services – a practical guide for parent campaigners who want to play a part in building better autism services

The Constructive Campaigning Parent Support Project This exciting and innovative project puts parents and carers at the centre of improving the provision of autism education. It is supported by the Department for Children, Schools and Families (DCSF) and other funders until 2009. The project team are working with parent and carer support groups to devise and deliver constructive campaigns to improve autism services within their own area.

Setting up the project The project was advertised widely to parent and carer autism support groups, in late spring and early summer 2006 using national voluntary and community sector networks such as Contact a Family and the National Autistic Society. Applications were short listed and the final selection of ten parent and carer autism groups was made against agreed criteria to ensure the groups had a good mix of campaigning experience, membership, length of time the groups were established, geographical spread and ages of children.

This is important as a key element of the project is enabling parents to share their campaigning experiences.

Groups were informed of the outcome of their applications in July 2006 and the following groups were successful:

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GROUP

LOCAL AUTHORITY AREA COVERED

REGIONAL PARTNERSHIP

Birmingham North Autistic Support Group

Birmingham

West Midlands

Contact a Family

Ealing

London

RAGS

Havering

London

Lambeth parent group

Lambeth

London

CAPAAS

Lincolnshire

East Midlands

MAGIC

Medway

South East

OSCA

Oldham

North West

AS-U-R

Poole

South West

FOCAS

Redcar & Cleveland

North East

Jigsaw

Staffordshire

West Midlands

Geographical coverage of the Parent Support Project

Redcar and Cleveland

Lincolnshire

Oldham, Greater Manchester

Staffordshire Havering, London Birmingham

Medway, Kent

Ealing, London

Lambeth, London

Poole, Dorset

The Parent Support Project groups and their initial campaign ideas AS-U-R, Poole This active parent support group was established five years ago and has a growing membership of over 60 parents and carers. They are keen to build a more effective working relationship with their local authority and are concerned that existing provision for children with autism does not reflect the needs of the population. For more information about AS-U-R go to www.as-u-r.org Birmingham North Autistic Support Group, Birmingham This group has been established for nearly 15 years and has developed a strong social network with regular group and family activities and holidays. There are approximately 18 members in this group and their main concern is lack of post-16 provision for young people with autism. Birmingham is the only authority in the project which uses the Criteria for Special Provision (CRISP) assessment system and parents are looking at ways to share their views on this and other aspects of SEN with the local authority. Another area they would like to address is the support for children in mainstream with high functioning autism/Aspergers syndrome.

CAPAAS (Children and Parents Asperger Autistic Support), Lincolnshire CAPAAS is one of the newly established groups and in September 2006 had a membership of fewer than ten parents and carers. Six months later the group has developed a wide network with over 500 people receiving regular news and updates from CAPAAS. The group is looking at different ways of engaging with service providers including approaching schools with ideas for projects as well as building effective relationships with service providers at a more strategic level. For more information about CAPAAS go to www.colour-se7en.co.uk

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The Constructive Campaigning Parent Support Project

Contact a Family ASD Support Group, Ealing This group of parents and carers of children with autism are part of the national Contact a Family network. Ealing has a diverse population and over 60% of children aged 4-19 are from a black or ethnic minority group. The group is determined to include the views of as many parents and carers as possible and has recently carried out an extensive consultation to include the views of parents who are not members of Contact a Family. Areas they are considering at present are training for teachers and other school staff and transition from primary to secondary school and post-16 transitions. For more information about the Contact a Family ASD Support Group go to www.cafamily.org.uk/ealing Lambeth parents’ group, Lambeth In Lambeth a small group of parents got together to apply for the Parent Support Project. One of their aims is to publicise the role of the parent partnership service as an independent source of help and advice for parents of children with SEN. They also wish to develop a more effective relationship with the local authority.

This is a positive step towards genuine parent participation in the design and delivery of high quality services for children and young people with autism in Lambeth.

Sharing campaigning ideas at TreeHouse

FOCAS (Families of Children on the Autistic Spectrum), Redcar and Cleveland Following an initial introduction to the project, FOCAS formed a project steering group to work with the project team.

The group has identified several issues they would like to address including the transition from primary to secondary education, looking in particular at the support provided during unstructured time at school, inside and outside the classroom and increasing and developing the link between school and home.

Jigsaw, Staffordshire Jigsaw group has already established an extensive and active autism network within their area. One of their main issues is exclusions and, in particular, informal exclusion part way through the school day. One of the parents submitted a case study to the project demonstrating how a school supported her son through some difficult situations and this was published in Children Now. They would also like to develop a more positive relationship with the local authority to enhance parent participation in different ways.

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MAGIC (Medway Autistic Group Information Centre), Medway MAGIC is a thriving group with an active membership of around 100. They provide a programme of successful social and holiday activities for children and families.

Parents are concerned about the quality and timing of information provided to parents of children with autism on secondary school transfer. They would also like to work more closely with SENCOs and are considering a conference for SENCOs at the beginning of the next academic year. They are also hoping to work with local schools and the local authority to develop provision of mainstream support to children with autism. For more information about MAGIC go to www.medway-magic.org

OSCA (Oldham Support Group for Carers in Autism), Oldham OSCA have decided to form a consortium to commission research into the quality of education for children and young people with autism in Oldham. They share concerns over exclusion rates for children with autism and informal exclusions.

They are considering ways that parents can improve the process of initial assessments for autism and to ensure statements are enforced. Oldham is a diverse area and parents are keen to reach out to hard-to-reach groups including parents who are black or from ethnic minority backgrounds, who are experiencing ‘double disadvantage’.

RAGS (Romford Autistic Group Support), Havering This small group of parents and carers has been established for almost five years. Their main concern is to support the local authority in establishing a comprehensive disabled children’s register which will inform the planning and provision of services in Havering. Several parents highlighted the lack of secondary provision as an issue, and also transition to post-16 and adult services.

Most parents commented that they would also like to campaign for improved access to respite care.

The first six months Devising the project strategy and project plan The project strategy outlines how the project will achieve its aim of improving the education provision for children and young people with autism. It entails working face-to-face and at a distance with parents and carers, providing them with the knowledge and skills they need to deliver a successful constructive campaign focussed on key issues in their area. The project plan includes establishing the project reference group; devising training materials, work with parents and carers, the communications strategy and on going monitoring and evaluation of the project.

Establishing the project reference group One of the first tasks was to invite key stakeholders to join the project reference group, which meets three times a year. The reference group includes representatives from the DCSF, the Learning and Skills Council, London Councils, the National Parent Partnership Network, Every Disabled Child Matters, the National Autistic Society and three parents who have extensive experience of successful campaigning. We also have a representative from one other funding organisation. The reference group is supported by the following TreeHouse staff: the Director of National Development, the Head of Policy and Public Affairs, the Project Finance Officer and the project team of three full-time staff.

External membership of the Constructive Campaigning Parent Support Project reference group REFERENCE GROUP MEMBER

ORGANISATION

Kate Baldwin

Sylvia Adams Charitable Trust

Steve Broach

Every Disabled Child Matters

Clare Corbett

National Autistic Society

Nigel Fulton

Department for Children, Schools and Families

Linda Gooch

Learning and Skills Council

Pauline Hill

London Councils

Sheila Moorcroft

Parent campaigner

Liz Ranger

Contact a Family

Pamela Reitemeier

Parent campaigner

Daisy Russell

National Parent Partnership Network

Su Thomas

Parent campaigner

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The Constructive Campaigning Parent Support Project

Creating resources for face-to-face work with parents and carers These include presentations and workshops covering an introduction to the project explaining and emphasising the constructive campaigning approach; summary of key documents related to each local authority including Children and Young Peoples’ Plans, SEN and Inclusion Plans, Education Plans, Joint Area Review (JAR) and OfSTED reports and others. A case study template was created for parents and carers to record their personal experiences, including positive and negative experiences.

Work with parents and carers The project team devised a six-step approach to work with the autism support groups. This provides sufficient structure to provide a flexible approach, to adapt to the needs of the group while creating a common structure to the project across all ten areas. Step One – introduction to the project. Step Two – groups agree their priorities. Step Three – draft action plan. Step Four – deliver/implement action plan. Step Five – monitoring and review. Step Six – evaluation and dissemination of findings.

Communications Effective communication is an essential part of the project to build local and national autism networks for effective lobbying and to share good practice. The communications plan includes a series of project reports to describe the project to interested stakeholders within the local authority areas and to provide information on the progress of the project at a pan-project and local level. There will also be a password protected web forum to facilitate sharing of good practice between project parents and carers.

Monitoring and evaluation Progress reports against performance indicators are produced at regular intervals for project funders; group leaders and parents will complete project evaluation forms at regular intervals; participants at specific events are also asked to complete evaluation forms. At a later stage of the project local authorities will be asked to complete an evaluation of the project.

Emerging issues from parents and carers across the project Parents and carers in the ten areas of the project are eager to find ways to improve the system for other parents and children with autism. Although the groups have identified their own priorities for their campaigns in their local authority area, it has been clear that there are common themes emerging from the groups. It is interesting to note that even within a local authority area parents’ experiences of a particular service or process may vary a great deal. These are some of the issues raised by parents so far: Statementing – delays and other difficulties in getting a statement; statements not written clearly, sometimes incomplete and allegedly influenced by budget considerations or issues relating to lack of appropriate provision.

Enforcement of statement – several examples of statements not being enforced including therapies not being provided, particularly speech and language therapy.

Educational provision – some groups have identified a mismatch between provision of education for children with autism and the needs of local children with autism.

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Special schools – many parents report excellent practice in special schools for children with autism. They would like to have a strong partnership between special and mainstream schools to share good practice with opportunities for training, and mentoring for mainstream teachers.

Quality of education in the mainstream classroom – this is a key area for many parents and their children with autism. The project has already gathered many case studies to illustrate how simple strategies can transform the whole classroom experience for children with autism, and the benefits that this can bring for their peers and teachers.

Data collection – effective planning for the provision of appropriate special education relies on the local authority having accurate and up to date information about the number of children with autism in a particular area and an indication of their future support needs. Parents and carers can work with the local authority to enhance this process by providing them with full and accurate information on their child at regular intervals.

Exclusions – children with autism are regularly excluded from school starting at a young age. This exclusion can take place in the middle of the day and is not always clearly recorded by schools. This has a huge impact on parents and is perhaps evidence that the school is not meeting the child’s needs.

Lessons learnt One of the most important factors in determining the project outcomes is the activity of the lead parent and other group members.

It was anticipated that parents may opt in and out of the project, as a result of other demands on their time and energy and that this may slow down the progress of the project within their area.

However, we did not fully appreciate the complexity of the group dynamics involved and how much time would be required to develop effective working relationships within the groups. Some group members have struggled between themselves to agree on priorities within their area and how to proceed with their action plans and campaigns.

Collecting views of parents and professionals in Staffordshire

We need to do more work with parents to help them establish positive relationships.

We are finding ways to address stereotypes depicting ‘the parent from hell’ or the local authority as ‘the enemy’, which are unhelpful.

Each group is unique and although they receive broadly similar support from the project team, the way they make use of the training and workshops they receive varies and is unpredictable.

The constructive campaigning approach can be applied to non-educational areas such as improving access to respite care.

The project team need to ensure that all ten groups receive the same amount of support, regardless of factors such as travel time. Some group leaders are more proactive than others, for example setting up local meetings and events and

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The Constructive Campaigning Parent Support Project

consequently may receive greater input from the project team than other groups.

This needs to be monitored to ensure there is a more equitable approach, as the groups who are less proactive may clearly be in greatest need of support.

Some groups are part of a national organisation, for example Contact a Family.

In one area this has proved a real benefit to the local parent support group and they are making great progress. In another area it has been hard to establish a productive working relationship with the national lead in the area.

The project reference group is a valuable source of information and expertise and acts as a ‘critical friend’. Members of the group have agreed to look for opportunities across their networks to publicise the project and its findings.

Summary At the end of the first six months of the project all ten groups have participated in training and workshops delivered by the project team. Groups have reached either Step Two – agreeing priorities for their local campaigns or Step Three – completed a detailed action plan for their campaigns. Over the next six months the project team and parents will be contacting key stakeholders in their area to introduce their campaigns. They will also identify ways parents can work with local authorities, schools, local voluntary groups and other service providers to enhance the quality and quantity of educational provision for children and young people with autism in their areas.

Campaigning parents and carers attend a seminar at TreeHouse

We wish to thank the Department for Children, Schools and Families, the Sylvia Adams Charitable Trust, the Harold Hyam Wingate Foundation, CHK Charities Ltd and one donor who wishes to remain anonymous, for supporting the project.

For further information on the TreeHouse Constructive Campaigning Parent Support Project please email psp@treehouse.org.uk or call 020 8815 5443. You can also visit www.treehouse.org.uk and click on Parent Support Project for latest developments in each of the areas covered by the project.

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Woodside Avenue London N10 3JA T: 020 8815 5444 E: info@treehouse.org.uk www.treehouse.org.uk Registered charity number 1063184

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