the constructive campaigning parent support project evaluation

Opening Doors for ChangeEvaluation of the TreeHouse Constructive Campaigning Parent Support Project

July 2009

The Constructive CampaigningParent Support Project

Opening Doors for ChangeEvaluation of the TreeHouse

Constructive Campaigning Parent Support Project

July 2009

Written by Jenny Phillips, TreeHouse


Working with parents and carers inBirmingham

EalingHaveringLambeth

LincolnshireMedwayOldham

PooleRedcar & Cleveland

Staffordshire



July 2009

Contents

Executive Summary 3

Part one: evaluation of the project at a national level 51.1 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 132.1 Promoting partnership working 13

2.2 Accessible participation 15

Part three: constructive parent campaigning 173.1 Establishing a parent campaigning group 17

3.2 Strategies for successful local campaigning 20

3.3 Strategies for successful national campaigning 24

Acknowledgements 31Appendix 32


July 2009

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:

z supporting parents to campaign constructively to improve education

provision

z achieving the DCSF project outcomes2

z finding out ‘what works’ across the different locations

z 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:

z how the project was structured to facilitate the work of the local parent

campaigning groups it supported

z what participants felt they gained from involvement in the project

z challenges and barriers to success

z 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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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


July 2009

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:

z desk-based review of relevant documents

z interviews with key informants from TreeHouse

z online survey for completion by a range of stakeholders in all 10 locations

z focus groups and interviews with a range of stakeholders across all

z locations

The sequence of expected outcomes below formed the basis of OPM’s

evaluation:

z Has TreeHouse been able to reach parents and raise awareness of autism?

z Have parents used the PSP resources and shared them across wider

stakeholder groups?

z Have the resources and support provided led to positive outcomes?

z What have been the key success factors for change?

z What have been the main benefits of parental involvement?

z What have been the challenges and barriers to change?

z 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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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:

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.


July 2009

“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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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 wide-

scale 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:

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


July 2009

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 PSP-supported 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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July 2009

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:

z 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.

z 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.

z Model behaviours with group leaders, which are most suitable for leads to

use with their groups to maintain motivation and foster productive working

relationships.

z 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.

z 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.

z Take 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.

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


July 2009

Parents and others provided the following recommendations for implementing

a similar project or establishing parent campaigning groups in other areas in

the future:

z 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.

z 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.

z 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.

z 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’.

z 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.






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July 2009

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


July 2009

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

z be open and transparent

z 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

z value the wealth of personal experience and knowledge that parents can

provide






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z acknowledge parents as partners in the planning and review of services for

children with autism

z work with parents to develop training programmes for schools, parents and

local authorities, which include parents as trainers

z include parent representatives on strategic working groups, with clear

mechanisms for decisions to feed into the delivery planning process

z visibly demonstrate your support for autism awareness and other events by

using your networks to advertise the event and encourage attendance

z appoint a dedicated Parent Participation Officer

z give parents clear guidance on the most appropriate channels through

which to maintain contact on issues relating to the education of children with

autism

z 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

z work alongside parents to collect data and evidence to identify need and

inform future planning of services for children with autism

z 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

z be constructive and professional

z invest adequate time upfront in explaining the purpose of your campaign to

local authority officers

z demonstrate your understanding of the national context of Special

Educational Needs (SEN) and autism

z understand local authority processes and procedures

z invite local authority representatives to participate in your campaigning

events

z invite senior local authority figures to open your campaign launch

z send background information and papers out well in advance of meetings

and events

z keep in touch with your local authority and Primary Care Trust (PCT) contacts

through regular email updates


July 2009

Case studyMedway 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 decision-makers 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.






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Case studyFamilies 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


July 2009

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

z 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

z 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

z hold meetings regularly – at least monthly – and publicise well in advance

z make the meetings a social activity which parents and carers enjoy

attending

z regularly invite speakers to meetings

z write up notes of meetings promptly and accurately

z share responsibilities within the group, with each parent having a clearly

defined role, e.g. chair, secretary, communications

z produce and disseminate regular newsletters, including information on

training courses and participation opportunities

z establish an up to date website for the group with links to other organisations

Positive outcomes

z an active, positive support group is established

z 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

z form a smaller steering group for parents who are interested in campaigning

z 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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July 2009

z establish mechanisms for both formal and informal feedback between the

steering group and wider parent support group

z set both short and long-term goals for your campaign

Positive outcomes

z campaigns are more targeted and focussed when planned through a

steering group

z groups where a number of parents share responsibilities are able to sustain

momentum if a key parent campaigner takes time out

z group leaders with strong back up or support are at less of a risk of

becoming ‘burnt out’

z 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

z 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

z identify strengths and development needs of group members

z develop skills through training in effective group work, presentation skills,

negotiation skills and media training

z 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

z 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

z 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)

z 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

Positive outcomes

z parental confidence is increased

z 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 [email protected]


July 2009

z 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

z find out what other parent groups exist in your local area

z communicate the aims and objectives of your group clearly to other groups,

and take time to identify shared outcomes

z work in partnership with local voluntary agencies

z consider working collaboratively as part of a pan-disability consortium

Positive outcomes

z opportunities for effective partnership working are identified

z alliances can be more powerful and influential in terms of driving change

z 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






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July 2009

Case studyOldham 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:

z successfully lobbied Oldham council and the PCT to sign up to the

Every Disabled Child Matters (EDCM) charter

z 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

z 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

Organise multi-agency campaigning events

z publicise events widely, well ahead of the time

z choose a topical and relevant theme with opportunities for participation from

attendees

z make the aims and objectives of the event transparent to all

z invite VIP speakers to attend the meetings

z provide an accessible venue, light refreshments

z produce and distribute an event report, summarising the main activities and

outcomes

z ensure local authority representatives feel fully included and welcomed


July 2009

“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

z parents and professionals share ideas in workshops and discussions

z constructive dialogue is established

z begin to overcome suspicion and build a relationship of trust between

parents and local authorities

Case studyJigsaw – 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

z evidence is collected via a short survey on paper or via the internet

z anonymous case studies are shared with decision makers as part of

campaigns

z event reports are written up and include policy context to introduce

campaigns and issues

Positive outcomes

z 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






Staffordshire



July 2009

“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

z 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

z remain neutral and balanced when trying to get points across in meetings

z plan campaigns to fit in with local authority planning cycles and decision-

making structures

Positive outcomes

z 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

z take steps to ensure that the parent or carer attending represents the

collective concerns of their parent group

z review minutes well in advance and carry out any actions

z keep communication positive and constructive even when presenting issues

which may challenge other people’s views

z provide timely and detailed feedback to the rest of the parent group

z there must be a clear mechanism for discussions and decisions made to be

fed into the planning and delivery process

Positive outcomes

z parents have a greater influence over service design and delivery

z planning takes account of the needs of children with autism


July 2009

“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

z find creative ways to promote increased awareness amongst educational

professionals, as well as decision makers, as part of your campaign

z 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

z increased awareness of autism and how to meet the specific educational

needs of children with autism

z school staff have greater access to training, and therefore develop their

ability to implement successful strategies and interventions within the

classroom

Case studyAs-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 studyMedway 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.






Staffordshire



July 2009

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 studyThe 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

z make links with national charities that have policy and parliamentary teams,

in order to find out about consultation events and how to contribute

z look for other means of contributing to consultations as well as meetings, for

example web forums

Positive outcomes

z used constructively, this leads to increased credibility and a higher profile for

the group

z an effective way of raising awareness of the key issues

z an empowering experience for parents

z an opportunity to influence nationally as well as locally

z an opportunity to develop a wider network


July 2009

“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 studyThe 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

z encourage the local authority and PCT to sign up to and implement relevant

national campaigns

z local campaigning is vital to ensure that proposed changes resulting from

successful national campaigns are reflected locally

Positive outcomes

z encourages the local authority to review specific points included in the

charter

z 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.






Staffordshire



July 2009

Case studyEaling 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 decision-

makers.

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 inter-

relationship 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.


July 2009

Engage with national government

z attend MPs’ surgeries, build up a relationship and make the issues real to

them

z encourage your local MP to pose parliamentary questions

z find ways to illustrate the human element in your cause, the more directly this

can be presented the better

z keep all political parties involved in your campaign

z work in partnership with national charities, e.g. those holding fringe events at

party conferences

z 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

z lobbying a party when the local authority is controlled by that same party is

very effective

z develops a constructive relationship with your local MP

Engage local and national media

z develop a strategic plan for engaging with the media during your campaign

z work on building a good relationship with journalists you trust

z 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

z 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

z 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

z media coverage of the campaign is more focused and accurate

z parents are equipped with the knowledge of how to communicate effectively

to their target audience

z messages about the campaign are consistent






Staffordshire



July 2009

“When you are passionate about something you want to make the most of every opportunity to get the message out.” – Group Leader

Case studyRAGS – 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

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.


July 2009

“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

z to ‘piggy back’ on events which can raise the profile of your campaign

z invite speakers from national charities to attend meetings and campaigning

events

z to find out about opportunities to contribute to consultations

z to access expertise, for example media training and policy updates

z sign up for newsletters and email forums which will provide up to date

information about developments at national level within the sector

Positive outcomes

z support and access to information

z 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 studyWorld 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.






Staffordshire



July 2009

“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

z 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

z join other online communities, for example Facebook, Twitter and Yahoo

groups

z attend parent participation workshops and regional events10

z consider ‘buddying’ with a campaign group member in another part of the

country, for support and advice from someone outside the area

Positive outcomes

z meet like-minded parents

z exchange of ideas

z a chance to find out what has worked well for others

z opportunity to share resources and examples

z 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

“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


July 2009

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: [email protected]

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.






Staffordshire



July 2009

Appendix

Expected outcomes of the Constructive Campaigning Parent Support Project

as defined in the application to the DCSF:

z better trained education practitioners

z increased understanding of needs of children with autism

z increased involvement of families in planning services

z better understanding of the workings of local government

z increase in dialogue between voluntary groups/families

z increase in partnerships between voluntary agencies

z sophisticated interaction between agencies and government

z services developed as a result of partnership working

the constructive campaigning parent support project evaluation

Documents

successful local campaigning

project z challenges

dcsf project outcomes2

education provision

better autism education

different locations

success z recommendations

different local authority