An introduction to the project

Report 1 – 2007

Page 1

The Constructive CampaigningParent Support Project

An introduction to the projectReport 1 – 2007

The Constructive Campaigning

Parent Support Project

An introduction to the project

Report 1 – 2007

Page 2

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:

GROUP LOCAL AUTHORITYAREA COVERED

REGIONAL PARTNERSHIP

Birmingham North Autistic Support Group

Birmingham West Midlands

Contact a Family Ealing LondonRAGS Havering LondonLambeth parent group Lambeth LondonCAPAAS Lincolnshire East MidlandsMAGIC Medway South EastOSCA Oldham North WestAS-U-R Poole South WestFOCAS Redcar &

Cleveland North East

Jigsaw Staffordshire West Midlands

An introduction to the project

Report 1 – 2007

Page 3

Geographical coverage of the Parent Support Project

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, BirminghamThis 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), LincolnshireCAPAAS 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

Lincolnshire

Havering, London

Medway, Kent

Lambeth, LondonEaling, London

Poole, Dorset

Birmingham

Staffordshire

Oldham, Greater Manchester

Redcar and Cleveland

The Constructive Campaigning

Parent Support Project

An introduction to the project

Report 1 – 2007

Page 4

Contact a Family ASD Support Group, EalingThis 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, LambethIn 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.

FOCAS (Families of Children on the Autistic Spectrum), Redcar and ClevelandFollowing 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, StaffordshireJigsaw 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.

MAGIC (Medway Autistic Group Information Centre), MedwayMAGIC 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

Sharing campaigning ideas at

TreeHouse

An introduction to the project

Report 1 – 2007

Page 5

OSCA (Oldham Support Group for Carers in Autism), OldhamOSCA 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), HaveringThis 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 fi rst six months

Devising the project strategy and project planThe 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 groupOne 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 ORGANISATIONKate Baldwin Sylvia Adams Charitable TrustSteve Broach Every Disabled Child MattersClare Corbett National Autistic SocietyNigel Fulton Department for Children, Schools and FamiliesLinda Gooch Learning and Skills Council Pauline Hill London CouncilsSheila Moorcroft Parent campaignerLiz Ranger Contact a FamilyPamela Reitemeier Parent campaignerDaisy Russell National Parent Partnership NetworkSu Thomas Parent campaigner

The Constructive Campaigning

Parent Support Project

An introduction to the project

Report 1 – 2007

Page 6

Creating resources for face-to-face work with parents and carersThese 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 carersThe 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.

CommunicationsEffective 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 evaluationProgress 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.

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.

An introduction to the project

Report 1 – 2007

Page 7

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.

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

Collecting views of parents and

professionals in Staffordshire

The Constructive Campaigning

Parent Support Project

An introduction to the project

Report 1 – 2007

Page 8

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.

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.

Woodside Avenue

London N10 3JA

T: 020 8815 5444

E: info@treehouse.org.uk

www.treehouse.org.uk

Registered charity number 1063184

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.

Printed on recycled paper