Shaping Children's Services Together

Shaping Children’s Services Together

Contents 03 04 08 28 38 40 42 44 45 46

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Foreword

Introduction For Parents For Professionals Glossary of Terms Useful organisations References and Publications Acknowledgements Disclaimer Appendices

Shaping Children’s Services Together

Foreword Each year, Ambitious about Autism is contacted by hundreds of parents and carers from all over the country seeking help and support to secure appropriate education for their children with autism. Large numbers of parents1 across the country have shown they are keen to campaign for better provision for children with autism in their area.

At the same time, parents often find themselves lost in a maze of bureaucracy, a jungle of jargon and an ocean of acronyms in their quest to improve the lives of their children.

They frequently feel as if they need to lock horns with local authorities2, shout to make themselves heard and keep promoting their individual case to get anywhere.

What’s more, many local authority professionals can also feel frustrated and want to do everything they can to improve services.

So instead of battling away in isolation, with each party fighting for the same cause, only to end up in pointless battles with each other, doesn’t it make more sense for parents and professionals to work together?

It aims to offer an insight into what parents can offer in terms of improving services, and shows that, if parents are stakeholders in those services, they are more likely to better serve the needs of those that use them.

With case studies, top tips, templates for letters, forms and other resources for parents and professionals, we hope this book becomes an invaluable tool in strengthening the parent/professional relationship that is so vital to securing the best possible services for children and young people with autism.

This book advocates a collaborative approach between local authorities and parents based on mutual respect, trust and empathy because it’s been proven that effective partnership working produces a win-win situation for parents and local authorities.

For parents, this book is a practical guide to encourage them to get involved. It highlights the benefits of joint working to effect change, offering tips on how to become a stronger voice representing the needs of children with autism and their families.

For professionals, it provides 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.

1. The term ‘parent’ will be used to mean ‘parents and carers’.

2. The term ‘local authority’ will be used to mean local councils and other organisations that commission and deliver children’s services.

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Introduction Autism, is a lifelong neurological condition and affects over 100,000 children and young people in the UK. Children affected by autism often find basic communication and social interaction difficult and stressful, and some cannot speak.

Many will also experience other, often complex, conditions which mean they require local authority services to reach their full potential.

In 2005, PACE3 published The PACE Parents’ Handbook: Constructive Campaigning for Autism Services which set out the following theory: if parents can campaign constructively rather than in an adversarial manner with local authorities, the end result will be improved services. As education is the only effective intervention for children with autism, campaigning for high quality children’s services is essential.

Ambitious about Autism, formerly the TreeHouse Trust, spent three years devoted to a project called the Constructive Campaigning Parent Support Project (known as PSP) which intended to test that theory. This book is intended to share the extensive learning from that initiative and provide an easy-to-use framework for parents and local authorities so they can work together constructively.

The PSP, which ran between 2006 and 2009 and was funded by the DSCF,4 saw Ambitious about Autism working with 10 parent campaigning groups in different local authorities across England.5 The project aimed to create constructive channels of dialogue with each local authority to facilitate genuine consultation on the shaping of autism services.

In interviews with parents involved in the project it was clear that they felt they frequently had to battle to get the services their children needed to improve their lives.

When asked about their relationship with local authorities, parents used words like, “fight”, “frustration” and “disappointment”.

Relationships with local authority professionals were one-sided, leaving parents feeling powerless. The Lamb Inquiry (2009) confirmed this lack of understanding between local authorities and parents/parent groups.

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It has undoubtedly proved that parents can be a dynamic and positive force for change and that, when they work in partnership with local decision-makers, they can be extremely effective in improving the quality of services for all children and young people in their local area.

MAGIC works in Medway Gayna Simmonds founded the parent group MAGIC in Medway, Kent which was involved with the three-year project. She says: “Lots “ of parents were very unhappy with the provision of services by the local authority.

Several meetings became brawls which was very disturbing for parents who felt angry and frustrated. Now we’re equal partners and we sit on autism steering groups, but we remain independent. We go into schools to help them better support children with autism.

We observe parents at home and convey information about what we’ve seen in a way that schools can accept. We do that with Medway’s knowledge and approval. I wouldn’t have done any of this if it hadn’t been for the PSP. Our relationship with the local authority is now based on mutual respect, but that took until 2010. That was the breakthrough year.”

Wouldn’t it be an achievement if every parent who had a child with autism in every local authority felt as included? And if every professional could tap into the real experiences of parents to improve their own understanding of autism and what families need in terms of support and services?

This book aims to achieve precisely that.

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03.

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Introduction Constructive Campaigning To campaign means to take an organised course of action as opposed to mobilising for battle. When it comes to organising improved services for children with autism, constructive campaigning is the preferred route.

What does a ‘constructive campaigner’ do?

They are able to separate out their objectives to petition for better services for ALL children with autism as opposed to representing only the needs of their own child.

They put their emotions on the back-burner so that the focus is squarely on the bigger picture.

They work with other parents because they understand that gives them more of a voice and greater influence when it comes to dealing with professionals.

They consider long-term objectives, not short-term gains.

Who is this book for?

This book treats parents and professionals as equal partners in the quest to improve the lives of children and young people with autism. Of course, relationships between service providers and parents can be strained. As a parent you may feel that professionals stop you getting the services you need to support your child and family. On the other hand, as a professional working in the local authority, you may feel that parents and parent groups are never satisfied with the service they receive or don’t appreciate the budgetary pressures that you face.

While this conflict may be understandable, it stymies a more constructive relationship.

This book promotes constructive dialogue between both groups of experts: parents and professionals, treating both as EQUAL partners in a constructive relationship.

The PSP showed that working in partnership is the best way to ensure that children and young people with autism get what they need to reach their full potential. This is more important than

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ever in an age of budgetary pressures and reductions in public expenditure. Efficient services rely on parents and professionals working constructively together.

The growth of RAGS

Anne Myatt, part of Romford Autistic Group Support (RAGS), a support group for parents which launched in 2003 and was one of the 10 groups involved with the PSP, says:

“RAGS “ was one of the 10 groups that the project mentored. With Ambitious about Autism’s support, we’ve grown and become more formal as an organisation. We now have our own office space and I’m a paid worker. We have also become a registered charity.

We have been instrumental in the pan-disability children’s forum, which came off the back of Aiming High.6 I’m also involved in a steering group for adults with autism.

Three years ago, parents were an after-thought when they were considering things; the local authority didn’t recognise our value. Having Ambitious about Autism involved gave us credibility as an organisation and opened doors at senior level within our local authority.

We’re now having influence strategically and key members in our local authority have shifted their views around us.”

3. PACE (Parents Autism Campaign for Education), a group founded in 1998 and run by parents of children with autism which then became the Policy and Campaigns Team of TreeHouse.

4. Department for Children, Schools and Families, a government ministry between 2007–2010. Since May 2010, it’s been reconfigured and is now the Department for Education, www.education.gov.uk 5. The local authorities were Birmingham, Ealing, Havering, Lambeth, Lincolnshire, Medway, Oldham, Poole, Redcar & Cleveland and Staffordshire.

6. Aiming High for Disabled Children was a three-year £430m funding package which ran from 2008. The funding, which contributes towards increasing resources for disabled children and their families, came about through a national campaign called Every Disabled Child Matters (EDCM) which aims to achieve rights and justice for every disabled child. In December 2010, Every Disabled Child Matters secured a 4-year £800m package to fund short breaks, the highest ever investment in short breaks for disabled children. More here: http://bit.ly/dHRAtL

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EQUAL Partners “Medway “ used to be adamant that MAGIC was designed to work against them. Following the PSP they could see that we had the same objectives.”

Gayna Simmonds MAGIC, Medway

For constructive campaigning to be effective, parents and professionals need to be on an EQUAL footing from the start.

EQUAL is where both stake-holders are:

EXPERIENCED: whether it’s a parent who’s experienced in meeting the needs of their child, or a professional who has experience in service-provision, both parties bring a wealth of experience to the table.

QUALIFIED: both parents and professionals

are qualified to input on what services should look like.

UNITED: professionals and parents are united in their objective to improve services for children with autism. It’s important to remember that both parties want the same thing!

AUTISM EXPERTS: whether you’re a parent who has a child with autism or a professional who is skilled in service-provision, both parties need to be respected as experts in their field.

LONG-TERMIST: both parents and professionals need to consider long-term advantages over short-term gain.

In this book, you will find tips, case study evidence, advice and resources. Good luck in significantly improving the lives of children with autism and their families everywhere.

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“I“ urge parents and professionals to remember what campaigning means. To me, as a parent, it means positive partnerships and clear communication between everyone involved in the education of a child who deserves the best education to meet their individual additional needs. Assertive and person-centred behaviour can lead to positive steps in understanding the child in an educational setting.”

Linda Dickinson Lead Parent, Redcar and Cleveland

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Shaping Children’s Services Together

For Parents A key finding from Ambitious about Autism’s three year Constructive Campaigning Parent Support Project (known as PSP) was this: parents who were equipped with the right training and tools to set up projects and communicate with local authorities had more influence over final service design and delivery.

What RAGS achieved

Anne Myatt, part of Romford Autistic Group Support (RAGS), a support group for parents which was one of the 10 groups involved with the PSP, says: “It’s “ taken five years, but now, as an organisation, we engage as equal partners with local authorities. It’s a respectful relationship; it’s not about ‘them and us’ anymore because we remember that it’s a partnership when we’re dealing with local commissioners. The project was also very beneficial for us in terms of influencing and up-skilling other parents.”

Two-thirds of the respondents who took part in an evaluation of the PSP reported the following three main benefits from being involved with the project:

CONFIDENCE: parents had more confidence in forging links with local authorities.

CREDIBILITY: parents were more articulate in spelling out the needs of their children.

STRATEGY: parents could look at the wider picture and ‘de-personalise’ their campaign to improve services for ALL children and their families who will be using them.

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This section of the book is designed for parents to build on learnings from the PSP and put them into practice in their own area. It is intended to be used as a guide for parents wishing to campaign constructively to influence:

schools

local authorities

health centres and hospitals

social work departments

MPs and national government

local Councillors and local government

Children’s Trusts It is a ‘how-to’ guide for parents who are looking to do any of the following:

set up, run or help run their own group

communicate regularly with local authorities on service-provision

compile evidence to create a persuasive argument about a particular aspect of service design and delivery

build constructive relationships with professionals

organise a campaign

engage with the media to focus local or regional attention on autism issues

influence decision-making

lobby national government.

Throughout the section, there will be top tips, case studies and real situations which show exactly how effective “parent power” can be when it is planned, targeted and managed well.

Yet there were areas of concern which parents highlighted as well.

Management and leadership issues within parent groups.

How local groups can co-exist, particularly when third sector and other parent groups have already forged links with local authorities.

How to disseminate resources fairly across the country, so that a broad spread of parent groups can benefit from training and other resources.

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For Parents Take a look at what parents in Oldham have achieved.

How-To...?

Parents of Oldham in Touch (POINT)

This section is broken down into six parts depending on which stage you or your parent group have reached in terms of campaigning.

Parents of Oldham in Touch (POINT), an independent organisation, was officially launched in March 2010. It provides help and information for parents who have children with additional needs. It also seeks to ensure that all parents of children with additional needs living in or accessing services in Oldham are supported and have a strong voice in shaping services for the future.

So far, POINT has held an information event on short breaks provision and summer holiday activity programmes for children with additional needs and their families, as well as a second event about education and transition. Both were attended by service-providers.

The sub-sections are as follows: 1.

2.

One parent who attended the education event in November 2010 commented: “Wow!!!! “ I went to this event and I would like to say a big THANK YOU to all concerned. I was worried about attending as my child has had a recent diagnosis of austism. I was welcomed by a wonderful bubbly lady who took me to meet some professionals from a team who help children stay in mainstream. She then introduced me to a parent whose child has the same condition as mine. You will never realise how much you helped me! The question and answer time was also brilliant. Thank you.”

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3.

4.

5.

6.

How to set up a parent group How to build constructive relationships with professionals How to compile and present evidence How to organise and run a campaign How to raise awareness How to influence decision-making in person

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1.

How to set up a parent group

Parents can make a difference to the services that they as families will access, and a group is far more powerful than a lone voice.

Autism-specific parent groups

“The “ involvement of parents makes a real difference to the quality of services. Parents have a unique and vital understanding of what ‘good services’ should look like. Parents can bring an authoritative perspective on the genuine needs, as opposed to the perceived needs, of children and families.”7

A parent group makes it easier to present the case for improving all services for all children with autism as opposed to honing in on individual cases. It also means that the workload is shared and different skill-sets can be used to the group’s best advantage. For instance, if you feel that writing is your strong suit but find the prospect of public speaking terrifying, this balance can be redressed in a group environment.

Think of a parent group as a NET:

Setting up a group: first steps

NETWORK: a committed group that can provide professionals with powerful statistical or appropriate anecdotal evidence about autism.

EXPERTISE: first-hand experience of autism and an understanding of the services that children with autism require to enjoy a better quality of life.

TEAMWORK: an open attitude to working in partnership with professionals, particularly at the moment in trying to limit the damage that cuts in local services might have on children and families.

Why set up a group?

Through the Aiming High for Disabled Children programme8 you may already be engaging with a newly formed, or well-established, parent carer forum in your area. This is a good place to establish and maintain regular contact with parent carers.

Aiming High for Disabled Children identified parent participation as key to improving services for children and young people with disabilities.

One way it supports parent participation is through the establishment of parent forums.

Each forum wants parents of children with disabilities to have the opportunity to have their voices heard by local service providers.

find out what groups already exist in your area and see if they meet your needs. It might be easier to join an existing group as opposed to setting one up from scratch. There are no prizes for reinventing the wheel...

if there isn’t a group in your area which offers what you want, advertise your intention to start one through your child’s schools, nursery or drop-in to generate support from other parents You can also use other public places to advertise such as libraries, as well as relevant internet forums. There are various threads on the Talk about Autism community which is a good place to reach out to other parents who might want to join your group

even if you only attract the attention of one or two other parents to start, remember it takes time to gain momentum. Don’t lose heart!

take the mobile numbers of other group members to remind them of meetings and other important dates via text. Remember to ask them to spread the word to attract other parents.

7. Watson, A. (2005) The PACE Parents Handbook: Constructive Campaigning for Autism Services.

8. http://bit.ly/ewsaas

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For Parents What can a group offer?

It may feel like you are donating a lot of time and energy to either setting up a parent group or helping to run a group. But the rewards are huge. Once a group is up and running, it can provide an enormous amount of support for parents, as well as providing children with experiences they might not otherwise have.

As Gayna Simmonds, the founder of MAGIC in Medway says: “We “ are self-funding. Parents make a donation for coffee and bagels for our support groups and we also offer activity weeks, sleep-overs and events such as bowling and swimming parties. We have three parties a year so that a child with autism can experience what it feels like to go to parties because often they’re the kid that no one invites to birthday parties.”

What’s more, when new parents are supported they often want to pass on their knowledge to help other parents in a similar situation.

Simmonds says: “Anytime “ parents are in despair with their child’s education, they can’t settle. But once they have been helped, nine times out of ten they come back and say ‘what can I do to help other parents?’”

Checklist Places to contact if you want more information about how to set up or run a group

Ambitious about Autism (www.AmbitiousAboutAutism.org.uk)

Contact a Family (www.cafamily.org.uk)

Every Disabled Child Matters (EDCM) (www.ncb.org.uk/edcm/home.aspx)

National Autistic Society (www.nas.org.uk)

National Council for Voluntary Organisations (NCVO) (www.ncvo-vol.org.uk)

NAVCA (www.navca.org.uk)

Talk about Autism (www.talkaboutautism.org.uk)

Together For Disabled Children (www.togetherfdc.org) These organisations can tell you about existing campaigning groups in your area or can provide advice on helping you start a group from scratch.

Further Reading:

The PACE Parents Handbook which can be bought from Amazon.com9

Together For Disabled Children’s Parent Participation: How To Guide10

Top Tips: Groups

STRUCTURE: ensure your group has a formal structure, such as terms of reference, a membership list, and a process of electing a chair.

COMMUNICATIONS: ensure that you communicate with all your members, as well as the wider community of parent carers of children with autism, via a website, a social network page, an online forum or a newsletter.

9. Use this link to purchase the handbook: http://amzn.to/fYn0AB Ambitious about Autism will receive a small donation for every copy purchased on Amazon.

10. Download the full guide http://bit.ly/fcGnA9

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PROMOTION: get your group known by key individuals within the local authority. You can find out who these are by checking your local authority website.

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For Parents 2.

How to build constructive relationships with professionals

Why is building an equal relationship with professionals so important?

““Becoming equal partners with

At the hub of partnership working is the participation of parents at a strategic level as equal partners in the commissioning of services for children with autism.

“As “ a parent or parent group, one constructive use of your time is to develop a way to work “in “ partnership to improve quality assessments “in “ your area.

In December 2010, the Coalition Government said it was ‘neither prescribing nor proscribing’ Children’s Trust Boards (CTBs).11 Instead, it announced its intention to devolve more power to local authorities.12 This renewed emphasis on local communities could mean that CTBs present real opportunities for parents to establish constructive relationships with decision-makers.

“This “ could include any of the following quality assessments: ““

The Office for Standards in Education, Children’s Services and Skills (Ofsted) As part of its criterion to achieve excellence in the care of children and young people in schools, Ofsted inspections place parent involvement as an integral part of assessing the ability of education providers to meet the needs of children and young people. Not only are parent views taken into account in an inspection but, as from 2010, the timing of future inspections of individuals schools can be influenced by the views of parents.

Becoming equal partners with professionals: first steps CAP: Contact: Ask: Promote CONTACT: the Commissioning Support Programme for more information about how to get involved in the commissioning of services in your area.13

ASK: your local authority for the names and contact details of key individuals within your Children’s Trust Board.

PROMOTE: your parent carer group as a group of experts in autism and a good source of recruiting parent carer representatives for the commissioning process.

Top Tip Consult The Centre for Excellence and Outcomes in Children and Young People’s Services’ website at www.c4eo.org.uk. This organisation provides advice for Children’s Trusts on what works in terms of commissioning effective services. This knowledge would strengthen your group’s ability to show your understanding of the process and your willingness to contribute constructively.

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professionals: quality inspections

Seize the day!

A quality inspection is a fantastic opportunity to persuade professionals to engage with you.

Why not develop a strategy to show not only your commitment to positive engagement with the local authority but also the legitimacy of your group to act as a voice for parents of children with autism?

Top Tips: Commissioning Feeding in to the commissioning process is one of the most effective ways of improving services for children with autism. Find out about key individuals responsible for commissioning services, who may be sitting on the new Joint Commissioning body in your area. Email local councillors to ask for relevant information. One of these key individuals could be an important contact to present your campaign message.

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11. Children’s Trust Boards (CTBs) were set up following the Children’s Act 2004 to encourage inter-agency co-operation among Primary Care Trusts, local authority children’s services, schools and colleges.

12. New Approach for Children’s Trust Boards, The Department for Education, November 2010, http://bit.ly/cWuucm 13. The Commissioning Support Programme provides skills and training development for parents so that they can be involved in the commissioning of appropriate services in their community.

Since May 2010, the programme’s work aims to fit in with the Big Society agenda. For more details, visit www.commissioningsupport.org.uk

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For Parents 3.

How to compile and present evidence

Whatever your campaign aims to address, you need evidence to support your claim that there is a tangible problem which is preventing children with autism from reaching their potential. Your campaign needs to suggest a practical solution, but it must be based on objective and compelling evidence collated from a variety of sources as opposed to one or two personal experiences.

It may also be the case that your local authority is not carrying out its own research to evaluate the effectiveness of local services for children with autism. Professionals may also not be aware of good practice taking place in other areas.

If your group can provide the local authority with compelling evidence to support your campaign you will have a better chance of being heard.

What’s more, your expertise could help you build a more constructive relationship with the local authority.

““Local authorities always say they have no money, but if you present evidence-based information in a way which shows ‘this currently costs x but here’s how we could do it for y’ they are more likely to listen.”

Gayna Simmonds MAGIC, Medway

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Top Tips: Gathering Evidence

Be clear about what data you are looking for and gather evidence that directly supports the issue you want to raise with the local authority or any other professionals. This should always be the case when you are challenging a professional. For instance, Ambitious about Autism encourages parents who are experiencing a high number of informal exclusions from school to use an exclusion record form14 which teachers fill in each time they ask parents to take a child out of class, encouraging them to question their judgment. Parents should also challenge a formal exclusion with a letter stating their intention to put forward their case in person15 (see both sample letter and exclusion record in appendices). Keep copies of everything and notes of phone calls made on particular days, and encourage other parents to do the same.

You may one day find yourself running a campaign to reduce the number of exclusions in your area, in which case this kind of evidence could help build a persuasive argument.

Use statistics. Either conduct snapshot surveys via brief questionnaires among your parent group or people who you already know (a few questions asked of 10 and 20 people) or consult existing resources.16

Case studies which show what it is really like to care for a child with autism can be influential as part of a wider set of evidence and can demonstrate first hand the emotional and practical problems faced by parents and carers. However, use them sparingly for greater impact.

Keep your report concise and well-presented. A wordy report will be off-putting and less likely to be read. Evidence is best presented as one or two ‘strong stats’ which will grab attention.

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Top Tips: Presenting Evidence

Put together a PLAN

Prioritise Identify your key campaign message and what you want to happen.

Local authority advantages Assess the costs and benefits.

Attention to detail Include financial costs and clarify whether your solution is long- or short-term.

Neutral tone Keep calm! Focus on being a parent carer expert and leave your personal frustrations out of it. Professionals are far more likely to engage with facts and figures than anger.

If you are meeting professionals in person, rehearse what you are going to say so that your resentments are out of the way in time for the real thing and you can maintain a neutral tone.

Follow-up Use a letter, email or a phone call to thank the professional for their time after the meeting and ask how your group can help implement your proposal. This could be the start of a constructive relationship between your group and the relevant professionals.

14. pages 46–49.

15. http://bit.ly/fnQeW0 16. The Audit Commission, MENCAP, National Autistic Society, Office for National Statistics, Oneplace, Ofsted and Ambitious about Autism would all be able to provide statistics. Use the search function on their websites with keywords from your campaign.

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For Parents 4.

How to organise and run a campaign

Memorable campaigns run on PESTER POWER!

d. Timing

Ask the following who, why, what, when, how questions:

who do I want to target?

why do I want to target them?

what means should I use to reach them?

when will my campaign run for maximum impact?

how will I measure the campaign’s success?

e. Evaluation

Checklist

f. Reason

These are just a few of some of the useful campaigning guides that have been compiled by a range of voluntary organisations.

a. People b. Evidence (see section 3. How to compile evidence) c. Strategy

a. People Your most important resource is the people in your group. Here’s how to get the best out of them:

conduct a skills audit of the parent carers in your group to identify strengths such as administrative skills, events-organising, public speaking or presenting

identify those parent carers who are qualified to work with children, such as teachers, speech and language therapists and childminders.

Their professional opinions can add clout to your campaign

work with other parent carer support groups in your area to strengthen your campaign

keep people motivated! Support them, praise them for their efforts and remind them of the campaign’s goal and what it could achieve.

b. Evidence A campaign’s potential to change services relies on evidence which shows that ALL children with autism in your area would benefit, not just your child.

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c. Strategy

A guide to getting involved from Every Disabled Child Matters (EDCM)17

The campaign toolkit from the National Autism Society18

Influencing for Impact, a publication from the Council for Disabled Children (CDC), a clearly written guide on how to influence policy and politicians19

d. Timing The success of your campaign could all hinge on its timing. For instance, if you are targeting MPs and there is an election looming, this could either work in your favour by bringing autism into the spotlight, or against you because it’s a hectic time for your MP as he or she attempts to get re-elected. You need to make your own judgement call.

The best timed campaigns are those that tie into the bigger picture, an event, such as World Autism Awareness Day, for instance, or a news story that highlights a particular aspect of autism and how services can help. Referencing the bigger picture and timing your campaign so that it fits can only benefit your cause.

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e. Evaluation You need to set clear objectives that you want your campaign to meet, monitor your progress while your campaign is underway and then undertake some post-campaign analysis.

A written campaign plan will enable you to keep on track and is simple to produce.

Template campaign plan

CAMPAIGN SLOGAN: make it short, arresting and easily memorable, e.g. SAVE AUTISM SERVICES.

It will keep everyone on track and provide an agenda for campaign meetings.

You can also use the question and solution structure below to help you evaluate your campaign and tackle common campaigning issues.

Q: are you trying things that don’t seem to

be working?

S: change tack Q: are some parent carers feeling

necessary, e.g. cuts in local autism services are affecting families in the local area.

SUPPORTING EVIDENCE: this could be a snapshot survey of the members of your parent group, e.g. 75% of local parents and carers who used to access these services are going to suffer because of these cuts.

Q: do you need support from a wider

CURRENT PROBLEM: why change is

RESOURCES: surveys and research.

RECOMMENDATIONS: campaign ‘asks’ — e.g. there needs to be an urgent assessment of local spending reviews.

Plan of campaign

Meet with — families affected, people running services

How to get it on the agenda? Meetings, political pressure, media

Resources — money, people, contacts

Materials — briefing, press release

Division of labour — who will do what and when?

Spending some time writing a campaign plan might seem a tedious task when there is a campaign to run, but it is a long-term investment.

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overwhelmed by balancing the demands of caring with their responsibilities to the group?

S: meet with them individually about what

is reasonable for them to commit to the

group considering their own particular

circumstances

community of parent carers?

S: consult other groups in the areas about

potentially joining forces

Q: are there any training or support needs

that could improve your skills and campaigning techniques?

S: consult other parent groups nearby to see if

you can learn from them

f. Reason Stay focused on the reason for your campaign.

Campaigns will fall by the wayside if they are aiming to ‘improve services for children with autism’, but are more likely to succeed if they are specific in their purpose, for instance, ‘improving knowledge about how to support children with autism in the classroom.

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For Parents

Campaign Steps A campaign can be divided into three equally important steps: persuade, influence, evaluate.

For your campaign to be successful, attention and resources need to be directed at each one.

The following section shows how you can identify and influence the right professionals and then evaluate your progress.

Step One: Persuade…

professionals to listen to and acknowledge your concerns.

Step Two: Influence….

decision-makers to take action and adopt your proposed solution.

Step Three: Evaluate…

what you have achieved, what worked well (and what did not for future campaigning).

Top Tips: How to identify your target 1. visit your local authority website to find out which councillors sit on Children’s Services and Education committees 2. ask the committee manager to send you an organisational chart which details the key people delivering services for children with disabilities in your area 3. local authority websites should also provide minutes from past meetings. These should help you work out who may be sympathetic to your cause Once you’ve identified who you need to address, you next need to work out how you are going to influence them about the importance of what you’re trying to achieve.

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17. http://bit.ly/ifmTkz 18. http://bit.ly/fy6wmV 19. http://bit.ly/egDkHM

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For Parents 5.

How to raise awareness

1. Letters Write letters to key people at your local authority to present the evidence you have gathered.

This is a template of a letter to help you:

[Name and title of professional] [Local Authority] [ADDRESS] [DATE]

[Your logo] [Name of your group] [Address] [Name of contact] [Email] [Telephone numbers]

Dear Sir / Madam, We are writing on behalf of all the families in [Insert name of local area / borough] where there is a child or children with autism.

We are extremely upset to hear the Council’s decision to cut services for families with autism, and research that we have conducted has shown that this will affect 75% of families where there is a child with autism.

What’s more, the outstanding services provided by the council were not expensive. Last year’s annual report puts the budget at £201,234. The cost in terms of family breakdown when families cannot access services including short breaks and regular drop-ins could far exceed that amount [quote statistics / evidence to show impact] We have launched a campaign — Save Autism Services — and intend to get as much support as possible in order to highlight the impact of your decision and persuade you to review the proposed spending decisions.

We would appreciate a meeting with you at your earliest convenience to discuss this and can be contacted at the above address.

Yours sincerely,

The undersigned [sign and title people from the parent group] Copied to: [sending a copy to local media and MPs shows your commitment to the campaign and its objective]

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2. Online

3. Meeting

Around 70 percent of UK homes have access to the internet via fixed or wireless broadband.20 This means that the internet is becoming increasingly influential in campaigning.

There are many ways you can use online for your campaign:

Anyone living in the local area can ask a question or present information to council meetings attended by elected Councillors.

It’s usually advisable to submit your question or evidence before the meeting. Consult your local authority website.

E-mail newsletters are a good way to keep people informed with your campaign and can be distributed speedily if you have created a list through the ‘address book’ on your email software.

Blogging platforms such as Blogger, Wordpress and Posterous can be hugely helpful for campaigners. Take a look at the UK Autism News Blog as an example of a very straightforward blog design.21 Setting up a blog doesn’t demand any specialist knowledge and can be done in under five minutes. It’s a good way to keep people up to date with what’s happening with your campaign, uploading pictures and video is easy, and what’s more it’s totally free.

Social networks such as Facebook are free to use and provide a familiar environment for many.

Facebook can also be used to flag up and invite people to events, as well as for publishing photos and comments after events have taken place.

Finally, don’t forget about Twitter. This microblog is a good way to attract new support and send out real-time news about your campaign.

Social networking sites are increasingly being recognised as an important tool to support potentially excluded communities and are reported by Every Disabled Child Matters to be an important source of support for carers of children with disabilities. Such sites are excellent ways to communicate with other parent carers.

Building up online communities enables you to extend support to parents who may be socially isolated. If you want to see an autism-specific example of an online community, Ambitious about Autism provides Talk about Autism and

has Facebook and Twitter profiles.22

4. Events

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Organising events can take a lot of work but can be hugely beneficial in terms of raising awareness. The ‘Walk In Our Shoes’ events encouraged policy and decision-makers to spend time with families where there was a child or children with a disability. They saw how simple tasks like the school run or a supermarket trip could be challenging and as a result they become much more aware of how they could help improve the lives of those families.

20. Organisation for Economic Co-operation and Development (OECD), December 2010.

21. http://bit.ly/9iJYs5 22. www.talkaboutautism.org.uk www.facebook.com/home.php?#!/talkaboutautism http://twitter.com/#!/talkaboutautism

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For Parents

5. Media Approach media across a range of communication channels including the local press, radio websites and TV stations. Draft a press release about your campaign and send it out, preferably with a few high quality pictures attached. Use the template below to guide you.

News Release: Parents campaign to save autism services For immediate release: [DATE]

[Your logo] [Name of your group] [Address] [Name of contact]

[NAME OF AREA] autism group [NAME OF GROUP] has launched a campaign called Save Autism Services.

The aim of the campaign is to challenge the Council’s decision to cut services for families with autism. Research conducted by the group has shown that these cuts will affect 75% of families where there is a child with autism.

[NAME OF PARENT], local [NAME OF AREA] parent, said: “These services are a lifeline, not only for children with autism, but also for families. If families cannot access services such as short breaks, drop-ins and information provision, the affect on family life could be detrimental. We are determined to prevent these cuts and believe that the Council should review its proposed spending decisions so that these families aren’t affected.”

For more information please go to [NAME OF GROUP WEBSITE].

Notes to Editors: About [NAME OF GROUP]

[Basic information about the group] About autism

Autism is a lifelong neurological condition which affects communication, social understanding and behaviour.

One in 100 school age children have autism and 27% of them have been excluded from school, the majority more than once (Office of National Statistics, 2005).

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Top Tips: Dealing with the media

Think in terms of photo opportunities. If you can offer pictures or do something to make your campaign stand out, it has more chance of being included.

Try to tie in your story with a ‘bigger picture’ story, for instance a recent national news item or a piece of research to give journalists and editors more reason to consider it.

Ask for the education or news desk to get through to the people who are likely to write up your story. It is inadvisable to ask for the editor, as editors spend very little time working on actual stories.

Rehearse your message so that you are confident about speaking to local journalists.

Avoid jargon.

Keep on message. Don’t be tempted to stray due to journalists asking you other, potentially more leading questions.

If you are including a human interest angle (and journalists are often interested in doing just that) and it is your own story, work out in advance what you want to reveal and what you want to keep private.

Stay calm. An angry parent makes a good story today, but can potentially jeopardise the success of your campaign in the long-term.

If you have a good experience with a journalist, keep in touch with them about autism issues, even when you are not trying to ‘sell in’ a story. Make yourself and others in your group available as ‘go to’ autism experts.

Offer to write articles for the media. This could include autism-specific websites, parenting magazines or titles such as Children and Young People Now or Community Care.

Always keep to length, file on time and check the house style of the publication or website for which you’re writing. Keep it light. Always

include a link to the website of your parenting group and a logo/web link for any specific campaigns, as well as any relevant photos.

Consider ‘good’ news as well as ‘bad’ news.

While using the media might spring to mind in the first instance to highlight a campaign set up to respond to a weakness in service-provision, it’s just as important to keep journalists informed of positive stories too.

Finally, a note of caution: however well you have worked with journalists in providing them with stories, there may be behind-the-scenes agendas and politics at a particular publication of which you’re not aware. So always think: what is the worst case scenario? How could our message be misinterpreted and used against us?23

23. pages 65-69 in the PACE Parent’s Handbook.

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For Parents 6.

How to influence decision-making in person

“Parents “ may talk of feeling intimidated by professionals, but it may help them to understand that professionals are often even more scared of having to face awkward questions, and that they will appear uninvolved, act evasively or retreat into bureaucratic working because they are frightened.”

Local authority professional Meetings are productive when parents and professionals work in partnership and respect each other as experts. In this scenario, both parties share the vision of services that effectively meet the needs of the widest population of children with additional needs.

“The “ biggest take-out for me [from the PSP] was having face-to-face meetings, physically meeting parents in both formal and informal settings. You pick up on signals and details when you meet face-to-face that you don’t via emails or phone calls or even in formal meeting environments because they tend to be closed as opposed to open-ended conversations. Parents could then see that we shared the same interests: trying to provide the best possible services within particular constraints.”

Educational Psychologist Particularly due to our over-reliance on emails, the incentive for face-to-face meetings has been somewhat lost, so it’s harder to schedule them in. Yet it’s important to meet in person to build long-term, constructive relationships with professionals and persuade them to hear your view. So once there is a meeting in the diary, ensure you get the most out of it!

Tips for productive meetings

Represent the views of your group, not just your own personal views. Your arguments will carry more weight if they represent a broad spectrum of parents.

Ensure that, if it’s a formal meeting, minutes are taken and circulated as a draft to all attendees; if it’s more informal, write to the professionals who invited you, thanking them for their time and highlighting any actions they intended to take during the meeting.

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Do your homework! This entails consulting previous minutes and being fully aware of what’s on the agenda in advance, as well as considering practical issues such as the location and how you’re going to get there.

If you are being paid for your time or reimbursed for expenses, submit your claim promptly.

Avoid going off on a tangent; stick to the points on the agenda.

If you are unable to attend in person for any reason, ask if you can contribute via email, phone or Skype.

Parent Group meetings Parent group meetings need to be minuted, with drafts of those minutes being distributed as soon as possible after the meeting has taken place so that no momentum is lost.

And remember: all people at any meeting are entitled to have their say, including local authority and parent representatives. If you are inviting a local authority representative, make them feel welcome, ask them to attend the whole meeting and use it as a chance to further relations with the local authority towards partnership working.

Imagine how much you would appreciate a warm welcome if you were a parent representative at a local authority meeting.

How to lobby national government While local authorities deliver local services, national government is solely responsible for passing laws and generating policies on the quality and reach of those services. And while some money for services is funded through council taxes, local authority budgets are still largely controlled by central government.

Top Tip

Encourage local authorities and PCTs to sign up to and implement relevant national campaigns.

At the same time campaign locally to ensure that proposed changes resulting from successful national campaigns are reflected locally.

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After a general election, new governments want to implement their manifesto commitments.

This could mean changes in legislation affecting children and families, funding cuts, or even changes to the structure of local government.

The threat of cuts…

It’s worth noting that only £2.7 billion is spent on services for children with autism, while services for adults total £25 billion.24 And as cuts remain a top news story, the needs of children with autism need to be championed more loudly than ever.

Parent participation is crucial as the UK is facing a significant reduction in public expenditure. A report published by the think tank and consultancy New Philanthropy Capital (NPC) on 15 December 2010 showed how much the current cuts in public funding could hit families where there are children with autism who use the services of particular charities. According to 40 autism charities, 37% expect to cut frontline services in 2011, 18% expect to lose a third of their income and four expect to go bankrupt.25 It’s vital to ensure that your voice is heard.

The parent view on cuts Anne Myatt, Project Co-Ordinator for RAGS in Havering, says: “It’s “ a strange limbo time around funding. But we won’t fold if we aren’t funded any more. We would carry on because it’s too important to stop.

It isn’t our job, it’s our life. That’s the message we promote to our parents to show the value of being involved. We send letters to local authorities, particularly when we know that budgets aren’t often ring-fenced.”

While campaigning on a national level may seem like a tall order, it can achieve some impressive results, and Every Disabled Child Matters (EDCM) advocates campaigning at national level to improve the lives of children with disabilities.

Two pertinent examples that it offers in Influencing for Impact: a guide to influencing policy and politicians for disabled children’s organisations 26 are:

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Mencap’s me2 group in Dudley helped to set objectives, design, and evaluation for the Don’t Stick It, Stop It! Anti-bullying campaign.

Whizz-Kidz arranged for their young board meetings to be held at the Department for Education, enabling policy and decision-makers to meet disabled children and young people in person.

Top Tips: National Campaigning

Understand the different political parties

and what they say about services for children with disabilities.

Find out the prospective candidates for each political party in local council and general elections. Send them emails and invite them to your group.

Attend local surgeries held by elected MPs and Local Councillors.

Checklist

The following organisations may help you to keep up to date with any law or policy changes — and the differences between political parties on disability.

Ambitious about Autism27

Autism Education Trust (AET)28

Every Disabled Child Matters (EDCM)29

The National Autistic Society (NAS)30

All Party Parliamentary Autism Group31

24. Daly, S. and Clements, K. (November 2009) A Snapshot of Children’s Autism Services in the UK, Ambitious about Autism www.ambitiousaboutautism.org.uk 25. Salman, S. (15 December 2010), Is Progress on Autism Unravelling?, The Guardian, http://bit.ly/gmHcd8 and Hedley, S. (15 December 2010), Funding Cuts Will Affect Autism Charities http://bit.ly/ez1TOB 26. http://bit.ly/egDkHM 27. www.talkaboutautism.org.uk 28. www.autismeducationtrust.org.uk 29. www.edcm.org.uk 30. www.nas.org.uk 31. www.appga.org.uk

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““ Parents have told us that good, honest and open communication is one of the important components of building confidence and good relationships. Face-to-face communication with parents, treating them as equal partners with expertise in their children’s needs is crucial to establishing and sustaining confidence. Where things go wrong, the root causes can often be traced to poor communication between school, local authority and parent.”

The Lamb Inquiry (2009)

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For Professionals Following its Constructive Campaigning Parent Support Project (known as PSP), Ambitious about Autism commissioned the Office for Public Management (OPM) to conduct an evaluation of the three-year initiative to show how effective it had been in meeting its goals.32 Following this project, the parent groups involved with the PSP are keen to inspire other parents across the UK to maintain their campaigning momentum and not give up when the going gets tough!

It noted that, for many of the local parent campaigning groups supported by the project, a constructive partnership had often developed.

As Linda Dickinson, lead parent in Redcar and Cleveland, one of the participating parent groups, reflects: “I“ feel the greatest benefit in our area has been the fact that parents work in partnership with professionals.”

This section is all about how you, as a professional, can take steps to work in a more collaborative way with parents and aim to build a partnership that incorporates everyone’s expertise.

What is your role?

As a professional, you have direct contact with children with autism and their families and are familiar with the kinds of challenges they confront on an everyday basis. You are also on the frontline of service delivery and meeting the needs of the local community.

You will also be only too aware that when you meet parents, their family life can be extremely stressful due to the demands of caring for a child or children with autism. If you usually encounter parents in meetings when they are complaining that their child’s needs are not being met, then your enthusiasm for working with parents may be understandably limited. Encounters like this fuel a mutual suspicion and lack of trust. The outcome is that it is difficult for the best decisions to be made under such circumstances.

03.

The ART of positive relationship-building There is an ART to working with parents in which professional people need to become skilled if partnership working is to be successful.

It is worth the investment: building strong relationships with parents can defuse potentially stressful situations.

1. Acknowledge Parents are the experts on their children.

Acknowledging this expertise is the most important first step you can take towards partnership working.

2. Respect If you respect parents and their point of view, they will be more inclined to respect yours.

Value the input that parents can provide.

3. Trust Relationships won’t work if there is no mutual trust between the two parties. This takes time but it is crucial if collaborative working is to be effective.

PSP: Take-Outs for Professionals Following the PSP project, Ambitious about Autism noted the emergence of a positive and productive partnership between participating parents groups and local authorities.

Staffordshire Parent Group

In Staffordshire, the Corporate Director of Lifelong Learning was enormously supportive and took 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 exclusion.

32. Phillips, J. (2009) Opening Doors for Change: Evaluation of the TreeHouse Constructive Campaigning Parent Support Project, Ambitious about Autism www.ambitiousaboutautism.org.uk

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For Professionals One local councillor involved in the PSP made the point that: “Constructive “ relationships are built on trust, and that takes time. At first we didn’t understand each other’s side. But we wanted to learn.

Now we have parent representatives on our committees. They sometimes share emotional stories about living with a child with autism.

And their greatest contribution is their direct experience. But they are also objective and realistic in their contributions.”

Yet other findings from the report suggested that engaging local authority officers was particularly challenging. Some group members even admitted that they had ‘given up trying to get the local authority on board’ after meeting nothing but resistance.

Following the PSP project, Ambitious about Autism identified the following strategies for local authorities to implement to help promote partnership working:

TRANSPARENT: be open with parents.

DATA-LED: provide information on how the local authority plans provision for autism education.

Much of this information can now be easily shared via web-based documents.

PARTNERSHIP-ORIENTED: acknowledge parents as partners in the planning and review of services for children with autism.

COLLABORATIVE: work with parents to develop training programmes for schools, parents and local authorities, which include parents as trainers.

INCLUSIVE: include parent representatives on strategic working groups, with clear mechanisms for decisions to feed into the delivery planning process.

DEMONSTRATIVE: visibly demonstrate your support for autism awareness and events by using your networks to advertise events and encourage attendance.

COMMUNICATIVE: appoint an officer with ““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

specific responsibility for furthering parent participation to ensure two way communication.

HELPFUL: give parents clear guidance on the most appropriate channels through which to maintain contact on issues relating to the education of children with autism.

SUPPORTIVE: 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.

EVIDENCE-BASED: work alongside parents to collect data and evidence to identify need and inform future planning of services for children with autism.

POSITIVE: ensure all parents can engage successfully and productively, including adults with autism, see the positive input that ALL individuals can bring.

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Walk In Our Shoes The PSP and Ambitious about Autism Parent Participation Project (PPP) were involved with two week-long events called Walk In Our Shoes.

Their goal was to increase awareness and understanding of the impact of disabilities — including autism — on families.

Parents and carers in all the local authority areas involved with the projects invited local decision-makers to spend some time with their families, providing an opportunity for decision-makers to experience the realities of day-to-day life for children with a disability.

Activities included the school run, having breakfast together, going to the hairdressers and taking a short trip on public transport.

More than 30 decision makers took part across the country, including Ministers, MPs, Councillors, Senior Local Authority representatives and Primary Care Trust (PCT) representatives.

Feedback from parents has been very positive, with the following comment from one parent — ‘The whole activity was terrific and will remain with me for a long time!’

Outcomes:

not only did parents value the unique experience, but various positive relationships have been formed. One local authority/PCT representative in Telford & Wrekin, for instance, pledged to follow up on finding additional support for a particular family, while in Haringey, parents were invited to attend a Children’s Trust Board Meeting

parents and carers are looking forward to a continued positive dialogue between families and decision-makers to ensure that the right improvements are made throughout the system to really improve the lives of children and young people with disabilities and their families

both families and decision-makers claimed to want more opportunities to develop relationships and identified a range of ways in which this could be supported by Ambitious about Autism including organising more events like Walk In Our Shoes and generating more media and online support

there was significant local media interest in Walk In Our Shoes with coverage in many local papers including The Shields Gazette and Haringey Independent.

Why was Walk In Our Shoes successful?

The events provided an opportunity for decision-makers to meet parents and gain a valuable insight into their lives.

Parents and decision-makers could discuss on a one-to-one basis the issues that they face, and start to develop a positive relationship.

Events like these assist long-term joint parent and professional working.

Photo overleaf: David Lammy MP visiting the Uddin family as part of Walk In Our Shoes

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Walk In Our Shoes

““This experience improved my understanding of decision makers.

They are real people with families and difficulties just like us. I am sure if we all learn to work together and listen to each other; we could do so much to ‘make things good.”

Parent Adur District Council

““I thought that this was an excellent participation event, should be more of them! The thing I took away from the event is while it’s right and proper to deliver the best services for the child or children, it’s extremely important not to forget the rest of the family.”

Councillor South Tyneside

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““I am immensely grateful to the family for helping me to understand the difficulties they face. Getting kids to school in the morning can be difficult enough, without the added burden of disability and very real practical problems this creates.”

Lynne Featherstone MP Hornsey and Wood Green

““For many parents the interest local decision-makers expressed in participating in Walk In Our Shoes has generated significant momentum for their local campaign.”

PSP Manager

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For Professionals How to work with Parents “As “ a local authority officer, I attended [a parent group meeting] 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 When things don’t seem to be going right for their children, caricaturing local authority workers as heartless or uncaring is a trap into which frustrated parents of children with autism can easily fall.

Yet as one of the participating parents in Walk In Our Shoes points out, that event helped to remind her that decision-makers are human beings too. The above experience from the local authority representative shows that when decision-makers are involved in only a half-hearted way, partnership working is going to be problematic.

If, as a local authority worker, you’re invited to attend a parent group meeting, ensure that you’re being asked to the WHOLE event, not making a guest appearance and then becoming surplus to requirements. That way you’re able to inform parents about what’s really going on behind the scenes as opposed to them guessing an approximate version of events.

You can update them, clarify points and ensure that they have their facts straight. It’s in everybody’s interests that your involvement is as key to the group as the other people attending the meeting.

The real value of collaborating with parents is that they can offer a true insight into what the actual, as opposed to the perceived, need is for autism services in the community.

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There are several benefits to working with parents because parent involvement enables local services providers to:

draw on real experiences of caring for children with autism and the challenges faced by families in everyday life. As Walk In Our Shoes showed, just a simple trip to the supermarket with children who are disabled can feel overwhelming

identify real needs as they emerge: different local authorities may require different kinds of provision. While learning can be translated between them, real needs are specific to a local community, depending on what that community needs. Only by keeping in contact with parents will those needs become apparent

identify appropriate parents as a source of support, knowledge and expertise for families with a newly diagnosed child

boost the confidence of parents to empower them as partners in the provision of services as opposed to passive consumers of those services.

As a professional, approaching parent groups can be daunting, but the golden rule of collaboration is to be proactive! Don’t wait for parent groups to come to you... go to them.

Here are some ways in which you can get to know them better:

identify the parent groups in your area and make yourself known to them

invite them to meetings and briefings so that they feel involved and see that you are serious about working in partnership

visit authorities close by where there are good relationships between local service providers and autism groups. Note what they do well. Chat to both parties about the benefits of working collaboratively and consider how you could implement similar ways of working in your area

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support fund raising events that parent groups hold (for instance, summer fairs, events around Christmas and raffles). It pays to be a regular attendee at such events

make clear your intention to improve the provision of autism services in the area... with their help. Ask if it might be possible to attend some of their meetings so that you can put across the view of the local authority and keep them up to speed with what is going on.

help them out with evidence if there is local authority data that could back up an argument that they are making. A third party can give such evidence more clout.

““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 Parent’s and Carers’ Seminar Report, 2009

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FOCAS, Redcar & Cleveland

A textbook example of how well local authorities can support parent groups came from Families of Children on the Autistic Spectrum (FOCAS) in Redcar & Cleveland.

The local authority has offered great support to parents in the area, and there is a positive and constructive relationship between local authority professionals and FOCAS. FOCAS created two questionnaires, one for parents, the other for schools. The results 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.

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For Professionals

How to build constructive relationships with parent carers

Top Tips: Create a parent-carer partnership policy

A culture shift may be required in some local authorities to accept the point of view that relationships with parents need not be ‘us versus them’.

For some, a new way of working will challenge an established culture. Staff may need to adjust how they perceive parents, from seeing them as ‘users of services’ to equals.

If you find you are having difficulties yourself with this culture shift, or if members of your team are resistant to embracing partnership working, share these benefits of a more collaborative approach with them to persuade them to change their mindset:

A parent carer partnership policy provides guidelines for your team.

This kind of policy can be useful in terms of spelling out the partnership and what it hopes to achieve. It should be proactively incorporated into professional life when:

a new team member arrives and is going through the induction process

for staff who are supervising team members

to identify the need for staff training to help them work constructively with parents

COST: The cost of conflict is high, in terms of time, energy and staff morale.

DUTY: The role that parents play in terms of viewpoints are now recognised as an essential part, if not a duty for local authorities to improve services and not an optional extra.

EFFECTIVENESS: Input from parents who live with children who have autism is a valuable resource that local authorities can use to monitor, improve and develop new services which, in turn, will make those services far more effective.

SUPPORT: Parent carers can help with staff development workshops and can also help provide emotional and practical support for parents, particularly ones who have a newly diagnosed child.

““Professionals now acknowledge that parents are the experts on their children and professionals are the experts in their field.”

Linda Dickinson Lead Parent, Redcar and Cleveland

SERVICE-ALLOCATION: local authorities risk being criticised for giving in to those parents who complain the loudest. Working in partnership with parents enables professionals to allocate in terms of need, not volume.

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Tips on how to improve communication and relations with parents and parent groups

Welcome new members / produce a welcome pack with materials for them to read, such as minutes from previous meetings and a copy of the parent carer partnership policy.

Avoid jargon and have a copy of commonly used terms and acronyms in the welcome pack so they can follow the conversation.

Time meetings for sensible times of the day. Ask when are the best times / times to be avoided.

Be mindful of money. Avoid holding a meeting in an inaccessible place. Some parent groups have successfully asked conveniently-located hotels if they can hold meetings in available rooms. Some authorities offer to cover the cost of travel for parents.

Implement a buddy scheme. New members can often feel intimidated, so by partnering them with either a parent or professional who is more established in the group, they have a first port of call for any questions or clarifications.

Ensure you are involving a wide range of parents, from different cultural and religious groups, as well as fathers of children with autism, single parents and parents who might be disabled themselves.

appoint an experienced chair to ensure that meetings run smoothly and to time.

Finally, remember: When the people who provide services work alongside the people who use them, those services will be more effective because:

they are more likely to meet the needs of a community

they will target services where they are most needed, and

they will be more cost effective.

Talk about win-win!

““At higher levels above my tier of management there’s a concern to respond to parents as a political force.

At my level, it’s much better to work constructively with parents rather than fire across all trenches on the western front.”

Principal Educational Psychologist

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Glossary of Terms

03.

Professionals

‘Professionals’ refers to all practitioners that work directly with children including teachers, social workers, speech and language therapists.

Additionally, the term encompasses employees who manage and commission local services for children with additional needs, such as directors and heads of service.

Primary Care Trust (PCT)

A Primary Care Trust is a part of the National Health Service. PCTs are responsible for commissioning health care services, such as primary care (general medical services, dentistry, etc.) mental health services and hospital care, to meet the needs of the local community.

Children’s Trusts

Underpinned by the Children Act 2004 duty to cooperate, the emerging Children’s Trusts seek to bring together all services for children and young people in each area under one roof. The aim is that by coordinating services ‘around the child’ outcomes for all children and young people will be improved.

Local Authority

Local Authorities — or Local Councils — are funded through council taxes and grants from central government. They are responsible for providing local services, such as social care and leisure facilities, to their designated communities. www.direct.gov.uk

Local Councillors

Councillors are local politicians elected by their local community to represent their views within the local authority at council meetings.

Decision-makers

Decision-makers refer to individuals who have been elected — such as MPs and Local Councillors — or employed — such as heads of service or departmental managers. They have the responsibility to make decisions about our services, such as admission policies for local schools or the closing of a local hospital.

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Useful Organisations Ambitious about Autism

Ambitious about Autism undertakes policy and parliamentary work and research to ensure autism is a national priority, supports parents to campaign locally and offers training and consultancy on autism education. www.Ambitious about Autism.org.uk

Audit Commission

The Audit Commission is an independent watchdog monitoring effectiveness in local public services to deliver better outcomes for everyone.

It works across local government, health, housing, community safety and fire and rescue services. www.audit-commission.gov.uk

Carers UK

Carers UK represents carers from across the UK. It works locally and nationally to campaign to get the vital contribution carers make to society recognised, emotionally, practically and financially. www.carersuk.org

Circuit Riders

Mobile ICT workers who provide ICT development and support work to small voluntary sector organisations. www.lasa.org.uk/ict/lasa-circuit-riders/

Contact a Family (CaF)

Contact a Family is a national charity providing advice, information and support to the parents of disabled children. It has national, regional and local offices offering one-to-one support, publications, and a free helpline. www.cafamily.org.uk

The Council for Disabled Children (CDC)

CDC is the umbrella body for the disabled children’s sector in England, with links to other UK nations. CDC works to ensure that the voices of children and young people with disabilities, and their families, are heard. CDC also hosts Every Disabled Child Matters. www.ncb.org.uk/cdc/home.aspx

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DirectGov

A guide to help you find your local authority and browse through the ‘A to Z’ of services, including a link to support groups for children, young people and families. www.direct.gov.uk

Every Disabled Child Matters (EDCM)

Every Disabled Child Matters is a consortium campaign run by four of the leading organisations working with disabled children and their families: Contact a Family, the Council for Disabled Children, Mencap and the Special Educational Consortium. Every Disabled Child Matters campaigns to raise the profile of children with disabilities with politicians in local and national government. www.ncb.org.uk/edcm/home.aspx

Include Me TOO

Include Me TOO works locally, regionally and nationally to support all children with disabilities to reach their potential and to be valued by society.

It champions the rights of children with disabilities from diverse ethnic and cultural groups, providing training and resources for children, parent carers and professionals. www.includemetoo.org.uk

Local Government Association (LGA)

Local Government Association is a membership organisation, acting as the voice of the local government sector. It provides support to local councillors to strengthen local democracy. www.lga.gov.uk

Mencap

Mencap not only provides specialist services to enable people with a learning disability to develop the skills they need to lead fulfilling lives, it also provides a wealth of resources and data about disability which are useful for professionals and parent carers. www.mencap.org.uk

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03.

The National Autistic Society (NAS)

The Office for Standards in Education, Children’s Services and Skills (Ofsted)

The National Autistic Society champions the rights and interests of all people with autism and provides help, support and services to people with autism and their families. The NAS provides local support groups for parent carers and for people with autism, as well as training for parent carers and professionals. The NAS also provides an online community. www.nas.org.uk

Ofsted is a government body responsible for the inspection and regulation of services for children “to achieve excellence in the care of children and young people, and in education and skills for learners of all ages”. Its website has useful research and publications on standards for parent groups and professionals. www.ofsted.org.uk

NAVCA

Talk about Autism

NAVCA is the national voice of local third sector infrastructure in England. It provides specialist advice, policy information and training to support the voluntary and community sector. www.navca.org.uk

National Council for Voluntary Organisations (NCVO)

Talk about Autism is a warm, welcoming and supportive online community for parents and carers of children with autism, for people who have autism and for professionals. It is provided

by Ambitious about Autism. www.talkaboutautism.org.uk

NCVO supports voluntary organisations in England, providing information, advice and support to people working in or with the voluntary sector.

It provides help and support to established parent support groups and to parent carers who want to set up a new group. You can also use their website to identify local groups supporting children with autism and their families in your area. www.ncvo-vol.org.uk

National Parent Partnership Network

NPPN supports the work of local Parent Partnership Services (PPS). These services offer information advice and support to parents and carers of children and young people with special educational needs (SEN). www.parentpartnership.org.uk

Office for National Statistics

Office for National Statistics (ONS) provides data about local and national demography as well as statistics from government departments. www.statistics.gov.uk

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References and Publications References and Publications Achieving Better Outcomes.

Commissioning in Children’s Services (2009) Commissioning Support Programme. www.commissioningsupport.org.uk The Framework for School Inspection (January 2011) Ofsted http://bit.ly/kRJCm Aiming High for Disabled Children: Better Support for Families Supporter Briefing (April 2009) Every Disabled Child Matters http://bit.ly/htSscA 21st Century Schools: A World-Class Education for Every Child Children’s Services Network (December 2008) Local Government Information Unit, http://bit.ly/ex11rt Are we there yet? Improving governance and resource management in children’s trusts (October 2008) http://bit.ly/eG0Nbz

Campaigning Guides Opening Doors for Change: Evaluation of the Ambitious about Autism Constructive Campaigning Parent Support Project Phillips, J. (July 2009) Ambitious about Autism www.Ambitious about Autism.org.uk Guide to Changing Local Service Carers UK (November 2008) www.carersuk.org Making Disabled Children Matter Locally Every Disabled Child Matters (April 2009) www.edcm.org.uk Campaigning with the National Autistic Society Corbett, C., Tarrant, A. (2006) National Autistic Society www.nas.org.uk

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Influencing for Impact: A guide to influencing policy and politicians for disabled children’s organisations Council for Disabled Children. (March 2010) http://bit.ly/egDkHM

Parent Participation and Partnership-working Contact a Family/Council for Disabled Children Parent Participation Improving Services for Disabled Children.

Professional’s Guide. (September 2005) www.cafamily.org.uk/publications.html OR www.ncb.org.uk/cdc/home.aspx The Duty to Involve: Making it Work Community Development Foundation Archer, T., Pitchford, M., Ramsden, S. (2009) www.cdf.org.uk A Snapshot of Children’s Autism Services in the UK Daly, S., Clements, K, (November 2009) Ambitious about Autism www.Ambitious about Autism.org.uk Supporting People with Autism Through Adulthood National Audit Office (June 2009) http://bit.ly/gNQoIg Information for Parents. Autistic Spectrum Disorders (ASD’s) and Related Conditions Early Support (2006). Reference ES12 http://bit.ly/dXhFrE Involving People with Autism: a guide for public authorities National Autistic Society (2010) http://bit.ly/huKMux

Disability and Exclusion Taking a Closer Look: Child Poverty and Disability (Northern Ireland Briefing) Save the Children/The Family Fund (November 2009) http://bit.ly/fmVHAb

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Championing the Rights of Disabled Children and Young People. Handbook Supporting the National Charter of Rights for Disabled Children and Young People Include Me TOO (2008) 2nd Edition www.includemetoo.org.uk Think Family: Improving the Life Chances of Families at Risk Social Exclusion Task Force, Cabinet Office (January 2008) www.cabinet-office.gov.uk

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Acknowledgements Ambitious about Autism would like to thank all the parents and professionals from the PSP Project who contributed to this book. Their expertise and enthusiasm continues to make a difference to the lives of children and young people with autism and their families.

Ambitious about Autism would also like to thank the Department for Children, Schools and Families (DCSF) — now the Department for Education (DfE) — for funding this project, ensuring that the lessons learned from the PSP Project can be used to benefit the wider community of parents and carers of children and young people with autism.

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Disclaimer This is intended as a guide to partnershipworking. It constitutes neither an official advice tool nor a definitive list of recommendations.

The information contained is, to the best of our knowledge, accurate and up-to-date at the time of writing (2010/2011) but we appreciate that the political and legal environment affecting children and young people may change in the future.

Some pages are likely to be updated or even altered radically due to the introduction of new government policies and procedures.

We therefore recommend that anyone embarking on partnership-working carry out their own research in all areas covered in this guide. Š Reserved publications

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Appendices.

Sample Response to Exclusion

As a parent, you have the right to put your case in person and/or in writing to the governing body of your child’s school.

You should write to the governing body if you want to state your case in person.

The letter should be:

addressed personally to the chair of the

governing body (the school, your local council offices, library or Citizens Advice Bureau should be able to give you the name and address of the chair of the governing body)

hand delivered or sent by recorded delivery

copied to the local authority (Director of Education or Case Officer).

Keep a copy of your correspondence.

This sample letter may be helpful to you:

33. http://bit.ly/fnQeW0

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[Name of Chair of Governors] Chair of Governors [Name of your childs school] [Address of school]

[Your address]

[DATE]

Dear [Name of Chair of Governors] [Your child’s name and date of birth] My child has been excluded from school and I would like to state my case in person to the governors.

Please send me copies of my child’s school record, the school’s behaviour/discipline and special educational needs policies, together with any witness statements, including my child’s statement.

I would like to bring an adviser to the meeting with me and look forward to hearing from you regarding a suitable date for us to meet.

Yours sincerely,

[Your signature and name] [from the National Autistic Society]33

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Appendices.

Exclusion Records 1. Annual Exclusion Record

Keeping an accurate record of your child’s exclusion may help identify patterns of behaviour or other factors which can contribute to the planning and review of your child’s progress and support needs at school.

You may find this ‘Exclusion Record’ (produced as part of the DfES funded TreeHouse Constructive Campaigning: Parent Support Project) will help you get a clearer picture of your child’s exclusions.

Name of Child: Year Group: School: Local authority:

Date of exclusion: Type of exclusion: Comments:

This may be useful for your child’s next annual review or as part of other planning and consultation meetings with your child’s school.

Name of Parent: Contact details:

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2. Exclusion Record

Name of Child: School attended: Type of School: Date of exclusion:

How has this exclusion been recorded by school? (Please tick one of the following) Internal

Lunchtime

Fixed Term

Permanent

How were you informed about this exclusion?

Phone

Letter

Other

Date/time you were contacted: Please give the name/role of the member of staff who contacted you: Please give details of what was said or written to explain the reason for the exclusion. If this refers to an internal exclusion, was your child given any work to complete?

Reason for Exclusion — if you are in any doubt please clarify the reason for this exclusion with your child’s school.

Code PP PA VP VA BU RA SM DA DM TH DB OT

Reason Physical assault against a pupil Physical assault against an adult Verbal abuse/threatening behaviour against a pupil Verbal abuse/threatening behaviour against an adult Bullying Racist abuse Sexual misconduct Drug and alcohol related Damage Theft Persistant disruptive behaviour Other

Tick

Comment

Name of Parent: Contact details:

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Address The Pears National Centre for Autism Education, Woodside Avenue, London N10 3JA Telephone 020 8815 5444 Facsimile 020 8815 5420 Email info@AmbitiousAboutAutism.org.uk Website AmbitiousAboutAutism.org.uk Charity number 1063184