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Spring Newsletter 2014

We are the only UK-wide charity providing advice, information and support to the parents of all disabled children no matter what their condition. Our services are for families with children aged 0-19 and up to 25 if your child is not yet in adult services. Registered in England and Wales: Number 1633333 It’s springtime and we hope you all had a lovely Easter break and are looking forward to the summer… which isn’t far away!

Contents Contact a Family Team


Staff numbers and emails



New and on-going campaigns



Latest news from Contact a Family

In Focus


Family’s stories from around the region



Useful resources for families

What’s going on?


Events, workshops, and groups

Who to ask?


Who to contact about what’s going on

Useful numbers and contacts


Contact a Family announces a fantastic new CEO… We are delighted to announce that we have appointed a new chief executive officer for Contact a Family, Amanda Batten. Taking up her new role on 19 May, Amanda brings with her a wealth of experience, having been director of external affairs at The National Autistic Society (NAS) where she has worked for over 10 years. Speaking about her appointment Amanda said: "I am driven by the firm belief that there is nothing inevitable about the isolation and injustice experienced by so many families with disabled children in this day and age. By supporting, empowering and working in partnership with families, we can help change this.

A who’s who guide



Register for updates, bulletins, newsletters

That's why I am both excited and honoured to join Contact a Family as chief executive - an organisation that has a pivotal role to play in shaping a better future for families.” We are all looking forward to Amanda helping to steer the organisation through the next few years. 1

Contact a Family Website National Freephone Helpline 0808 808 3555 (Mon – Fri 9.30 - 5.00) free from both landlines and mobile phones. The Language Line interpretation service is available for those whose first language is not English.

North West Team You can e-mail general enquiries to the team at or get in touch with individual team members below. Corriena Tomkinson – Parent Advisor (North West) Telephone 01772 812 294 Please contact Corriena if you have an individual inquiry from the North West region (excluding Cumbria). Catherine Tyrie – Parent Advisor (North West) Telephone 0161 445 3749 Please contact Cath if you want to register or write something for our newsletter, join our mailing list or have something added to our website page. Philippa Christie – Parent Advisor (Cumbria) Telephone 07742 300 040 Please contact Philippa if you have an inquiry regarding Cumbria. Diane Bridge - Parent Advisor (North West) Telephone 01704 532256 Please contact Diane if you have an inquiry about children’s centres or early years work across the region. Carolyn Deveney – Parent Carer Participation Advisor (North West) Telephone 07905 917 066 Please contact Carolyn if you have an inquiry regarding the parent carer forums across the region. Karen Robinson –Regional North West Manager Telephone 01706 220 578 Please contact Karen, who manages the work of the parent advisors in the North West region if you have an inquiry regarding workshops, information days and events.

Volunteer Parent Representatives Ruth Card (St. Helens area) Telephone 01942 721 323 Ruth is the Area Volunteer Parent Rep, she is the parent of a disabled child and offers peer support and local signposting for parents in the St. Helen’s area.


Campaigns Why do we campaign?

Get involved!

We campaign to remove the barriers, which prevent families with disabled children participating in everyday life. We want to ensure that government policy, as it relates to families with disabled children, delivers the best outcomes for all families across the UK. We base everything on what parents have told us in research or what we learn from working with them.

Exempt disabled people from the bedroom tax‌ Contact a Family will continue to campaign for all disabled people to be exempt from the bedroom tax. And if you have a story to tell - whether it's challenging a decision or getting turned down for discretionary housing payments (DHPs) please let us know. Real life stories are vital for our ongoing campaign work - perhaps you've been hit on other benefit charges or charged council tax for the first time? If so, please get in touch with Head of Policy, Una Summerson at

Autistic children illegally excluded from school‌ New research published this week by charity Ambitious about Autism, shows that four in 10 children with autism had been illegally excluded from school temporarily last year. The research forms part of the charity's campaign, Ruled Out: Why are children with autism missing out on education? Contact a Family is pleased to support the campaign which highlights children with autism are too often illegally excluded and mirrors our own research findings from Falling Through the Net 2013. Education is a right for all children, yet too many disabled children are being denied this right. This has to stop, now!

Victory for parents in the Children and Families Bill‌ A last minute amendment to the Children and Families Bill was made which means that parents caring for a disabled child will be given the same right to support as those looking after a disabled adult. The change to the bill is welcomed by Contact a Family who have campaigned to ensure that parent carers have the right to be assessed and supported when the bill takes effect in England later this year. Una Summerson, Head of Policy at Contact a Family welcomed the amendment saying: "We are delighted that the Children and Families Bill has been changed to include parent carers. Parity of rights for all carers - whether looking after a disabled child or adult - is essential. By mirroring the new rights for carers of disabled adults in the care bill, the change to the Children and Families Bill shows that the government recognises the vital role of parent carers. Importantly parent carers played a pivotal role in this campaign including meeting with Ministers, government officials and their local MPs". Families wanting to know how the Children and Families Bill or care bill may affect their family should telephone the Contact a Family helpline for advice on 0808 808 3555. You can also visit Contact a Family website for more information. If you do write to your local council or MP to help with any of these campaigns, please drop Una (our Policy Officer) an e-mail on and let her know.

We are stronger together...


News Disabled people plunged into distress and financial difficulties… The National Audit Office (NAO) published a report on the progress of the new benefit, personal independence payment (PIP) which highlighted how claimants were not told how long their claims would take and this was "creating distress and financial difficulties". It's taking 107 days - three and a half months - to reach a decision on claims instead of the expected 74 days and a backlog of 92,000 claims had built up by October last year. Today's NAO report follows the first official government statistics published by the government last month that revealed that two thirds of applicants have been turned down. Contact a Family has worked with the Disability Benefits Consortium, of which we are a member, to raise concerns about the delivery of the new personal independence payment (PIP) assessment. Commenting on the NAO's key findings, Una Summerson, Head of Policy at Contact a Family said: "The delay that some disabled people are being forced to endure is clearly unacceptable. The government needs to explain how it plans to reduce these delays as a matter of urgency and what it is going to do to make easier for those entitled to PIP to access it. Young people who are already on disability living allowance (DLA) should continue to get payments whilst awaiting a PIP assessment. However, these delays may still cause them uncertainty and worry. Those who don't already get DLA, may well face financial hardship during the lengthy wait for a decision on their PIP claim. It's important to remember that these delays can also have a knock on effect by delaying other essential support. Contact a Family has a team of expert benefit advisers who are able to offer detailed, one to one advice to parent carers who want to find out more about the many other planned benefit and welfare changes. We want to reduce any worry and confusion about benefit changes and increase the chances of families with disabled children getting what they are entitled to." If you are a parent of a disabled child and are worried about benefit and welfare issues or to get a copy of Personal independence payment and other benefits at 16, please ring the freephone helpline on 0808 808 3555, email us or visit our website

The Budget 2014- the main benefit changes… Derek Sinclair from Contact a Family’s helpline summarises the main benefit changes in the recent budget. In a surprise Budget announcement, the amount that you can earn before your carer’s allowance stops is to increase to £102 per week from May 20th 2014. The budget also confirmed that once Universal Credit is introduced, working claimants will be able to get help with up to 85% of childcare costs rather than the 70% of costs currently met under the tax credits system. Alongside this the government has also confirmed plans for a separate system of ‘tax free childcare’ for families who do not qualify for tax credits or the new Universal Credit. From autumn 2015, parents will receive help towards 20% of their registered childcare costs from the government, subject to a limit of £2000 per child per year. This new scheme applies to childcare costs for children under 12, or under 17 if disabled. To be eligible all parents in the household must normally be working and have earnings of at least £50pw - however it will also be open to couples where one parent works and the other gets carer’s allowance. For more details on these planned changes get in touch with Contact a Family’s free helpline on 0808 808 3555 (weekdays 9.30am-5pm). 4

News Leave disability benefits out of the welfare benefit cap… In the March budget, the chancellor confirmed that a new cap on overall government spending on welfare benefits will apply from 2015. The cap, which places a limit on the total amount that the government can spend on welfare benefits, has now been set at £119 billion for 2015-16. There will be a vote in Parliament on the proposed welfare cap next week. While some benefits including job seekers allowance will be exempt from the spending cap most others, including disability benefits, will not. As a result Contact a Family is concerned that any future government at risk of spending more than the capped figure may then be forced to take action to cut costs - which presumably could include reducing disability benefit payments. Commenting on today's budget announcement Paul Soames, interim CEO of Contact a Family said: "George Osborne's plan to include payments for disabled children in the government's welfare spending cap is another blow for hardworking families of disabled children. Families are already struggling to make ends meet and face constant money worries which are straining family relationships to breaking point, and impacting directly on their children. "There is a real danger that any future government spending more than the capped figure will attempt to reduce disability payments even further to cut costs. The families we support need urgent reassurance that disability benefits will not be reduced or restricted if the overall cap on spending is reached. While some benefit payments are exempt, the welfare spending cap will place increased pressure on families who have already been hit by a range of benefit cuts since 2010. MPs must vote against this cap to protect disabled children."

Contact a Family calls for urgent action on childcare… The government has announced a package of extra childcare support for families. This includes increasing tax-free childcare, introducing a £50m early years pupil premium and covering 85 per cent of childcare costs for 300,000 of the most disadvantaged families. Commenting on this, Paul Soames Interim CEO at Contact a Family said: "Any increases in support for childcare are to be welcomed especially for those on the lowest incomes, however for many families with disabled children, taking the steps back to work are simply not an option due to a lack of childcare. While many parents with disabled children juggle jobs with complex care arrangements and family life against the odds, too often they are forced out of the labour market due to higher childcare costs compared to other families and provision that is unsuitable because their child has a disability or medical need. This coupled with significant extra costs associated with raising a disabled child is leaving families struggling on low incomes with no choices. Contact a Family would like to see all political parties tackle the ongoing childcare problem faced by families with disabled children once and for all. For example, “to recognise the higher costs of childcare for disabled children when universal credit is introduced." If you have any support and advice around childcare - give our freephone helpline a call on 0808 808 3555 or post a query on our Facebook page. 5

News Tax free childcare - what are the government's plans? Last week the government announced a package of extra help with for families with childcare costs. We asked Derek Sinclair our welfare adviser to explain what this will mean for parents with disabled children. Increased help with childcare under universal credit "Firstly, the government confirmed that under universal credit, families will get help with 85 percent of registered childcare costs rather than the 70 percent currently met under tax credits. Similarly to tax credits, only registered childcare costs will be met and there will be a cap on the maximum amount of childcare costs taken into account. However help with childcare will no longer be limited only to those working 16 hours a week or more. Under universal credit you will be able to get help with childcare if you are working, regardless of how many hours you work. However only childcare costs that allow you to work will be met and not childcare you use for other purposes. Under universal credit help with childcare costs will be limited to either lone parents who are working or couples who are both working. However if you are a couple where one partner works and the other is eligible for carer's allowance you should also be covered. Universal credit is being piloted in certain areas but is not expected to be introduced in most parts of the country until 2016. What about families who don't get universal credit or tax credits? Alongside their plans for universal credit the government also confirmed details of a separate system of tax-free childcare for families who do not get universal credit or tax credits. Under this new scheme parents will receive 20 per cent of their registered childcare costs from the government, subject to a limit of £2000 per child per year. This new scheme applies to childcare costs for children under 12 years, or under 17 if the child is disabled (for example, on DLA or PIP or registered blind). This new system of tax-free childcare is expected to begin in autumn 2015 and will involve parents buying childcare vouchers via new online accounts. For every 80p that a parent pays into their tax-free childcare account, the government will contribute 20p. To be eligible all parents in the household must normally be working and have earnings of at least £50 per week, however it will also be open to couples where one parent works and the other gets carer's allowance. The scheme will not be open to those earning more than £140,000 per year. Further details about the government's plans for tax free childcare and increased help under universal credit are available from the Department of Work and Pensions (DWP) website. For more details on these planned changes get in touch with Contact a Family’s free helpline on 0808 808 3555 (weekdays 9.30am-5pm).


News Children and Families Bill for England becomes law‌ The Children and Families Bill has now received royal assent. This marks a landmark in how children and young people with special educational needs (SEN) in England will be supported in the future. The Children and Families Act 2014 will introduce a number of changes including a move from special educational needs statements to education, health and care plans. Now the big test will be how the new system will be translated on the ground, in schools, colleges and across local agencies and whether it will make a difference to families with disabled children and young people. Paul Soames, Interim CEO at Contact a Family said: "Today marks a landmark for how disabled children and young people with SEN are support in the future. However, many families are yet to be persuaded that the battles for support will end. Added to this, more cuts in local authority services and welfare changes mean families face extremely difficult times ahead. With this in mind, Contact a Family is here to help families understand their rights and what to expect from the system of support now and in the future. We will campaign and support local parent carer forums to ensure that families with disabled children, young people and those with SEN actually get what has been promised to them" The law will not change today. This will start to happen from September 2014.The current special educational needs (SEN) law continues, including the SEN code of practice. This means all local authorities must keep their legal duties to identify and assess children's special educational needs and, where necessary, arrange educational provision through a statement of special educational needs. See our education pages for more. Families wanting to know how the new proposals may affect their children now, or in the future should telephone the Contact a Family freephone helpline for advice on 0808 808 3555.

Complete our survey and help us reveal the true picture of finances for families with disabled children‌ Contact a Family is calling on mums, dads and other family members who care for children and young people with additional needs or disabilities to take part in some important research about family finances and the impact of welfare reforms. Counting the Costs 2014 is a repeat of our flagship survey and report that we've carried out every two years since 2008. In 2012, we found that one in seven families with disabled children were missing meals and one in six can't afford to heat their homes. Since then, many of the government's planned welfare cuts have been implemented, as the biggest shake up of the UK's benefits system in 30 years continues. This means that your responses to our Counting the Costs 2014 will give us a unique snapshot of families' current financial situation and whether it is getting better or worse as a result of these changes. By filling out the survey you will be helping us to raise awareness and lobby for change particularly as welfare reforms continue to hit families with disabled children hard. This year's Counting the Costs is also particularly important as we try to influence party manifesto's ahead of the next general election in 2015. We need as many of you as possible to complete the survey and help us build that true picture by completing the survey which should not take more than 20 minutes. The deadline to complete the survey is the end of May 2014. It can be found at but if you would like a hard copy of the survey or help completing the survey please contact us on 020 7608 8742. 7

In Focus Our new section ‘In Focus’, highlights inspirational stories from parents and carers of children with disabilities and special needs from around our region... This story has been sent in by one of our North West parents, Katy. As I see Joe grow into a young man I do catch myself thinking about what he could have been. Sometimes I can’t help dreaming about how he would look without his splints on, without the wheelchair around him and his beautiful smile not changed by his muscle spasms. It saddens me but I don’t stay in this place any more. I remember how he has changed me and changed our family. I have got different dreams for him now. It hasn’t been easy to jettison the dreams we all grow up with for our children. Dreams obsessed with school grades, college courses, well-spoken and groomed young men with careers, able to provide for the impending grandchildren. While it’s not that Joe can’t do any of those things, he will need lots of help to do them and I know now that these are not the right dreams for Joe. Letting go of them wasn’t easy. When Joe was small I clung on to them and insisted that he would do all of these things. There was no reason why he shouldn’t. Just because he is disabled doesn’t mean that he has to be excluded from these dreams. And of course this was probably true, but I came to understand that they’re not Joe’s dreams, they were mine. They were mine for a child I didn’t have. They were another Joe’s. But he is teaching me new ones like taking a few steps in a walking frame, finding the ‘J’ on the keyboard and pulling up the zip on his coat have been far bigger achievements in our house than any of the usual things. It’s these kinds of things, that most people take for granted, that Joe has struggled with, sometimes for years, which make us break down in tears and fill up with pride. It’s these dreams that we focus on and celebrate. If he gets to college and university, wears a suit and gets a job, great! But that will be Joe’s decisions. For now we are focusing on the more important things in his life. One of the things that really helped me to let go of these fixed ideas about what he should and shouldn’t do was talking to other parents with disabled children. Finding out that everyone struggled with this issue and every one of the parents I spoke to had to find their child’s own dreams to aim for was so comforting and it helped me to see the beauty and uniqueness in our children. Joining a group may not be the first thing that comes to mind when you are struggling. In fact, I avoided talking to anyone for the first couple of years of Joe’s life, I was so sure that I didn’t need anyone else and that nobody would understand. But joining a group and meeting other parents was definitely the best thing I’ve ever done. Not only can you see that you’re not the only one on this journey, but that everyone’s journey is different, unique to them, but parents who are travelling this road can share such fantastic insights, understanding and ideas about enjoying the journey. And importantly, when times feel really hard, they are the ones that can laugh with you and lift your spirits. I’m not sure who said it but I always remember the quote ‘Laughter is an instant vacation!’

Even if you feel groups are not right for you now take a look at what’s out there. There’s loads to choose from. There are condition specific groups like local autism or down syndrome groups. There are parent groups at most schools, some specifically for parents who have children with disabilities or additional needs and some which are mixed. Most areas now have parent forums for parents with disabled children and Carers Centres have links with local parent groups. For most of these there will be a way of meeting other parents on-line in forums etc., periodically for days out or more frequently to meet up regularly. You may find one that fits in with your life!

Thank you to this parent for sharing their story in this edition of our newsletter. If you would like to share your story with other parents and professionals please e-mail or phone 0161 445 3749.


Resources... Check out our new publications list on the website… Our publications list has now been given its very own green side bar. You can find the bar on the right hand side of every page of the website except the home page. Click on the green box that says ‘Access 100s of resources for families and professionals’ and it will take you to our latest publications list and resource library.

Do you work with disabled children and their families? If you are a professional who works with disabled children and their families why not sign up to receive our free, quarterly newsletter. Packed with training opportunities, resources and research from across the sector you can read the March edition of the Professionals’ newsletter. In our professionals area of the website at

Our shiny new SEND website… Check out our new website SEND Direct went live this month keeping you up to date with all the latest special educational needs changes. Keep checking it for blogs and video content.

New website for Parent Carer Support in Cheshire… Cheshire and Warrington Carers Centre have a new website. They provide a wide range of support for parent carers including regular coffee mornings in Ellesmere Port, Northwich, Crewe and Macclesfield, with an evening session in Chester, events and activities for parent carers and their families including family fun days, parent carer leisure and learning days and an information, advice and support service. Other services include a carers caravan, a toy library and support to access parent carer forums in the area. Please call: 01606 352834 or call their freephone helpline Mon-Fri 10-4 0800 085 0307. You can also email or visit their new website at

Bolton Lads and Girls Club are fully inclusive… Bolton Lads and Girls Club have opened their provision to be completely inclusive to offer a safe, nurturing and inspiring centre for young people to grow and develop. Staff, volunteers and support staff are available each session to support young people with disabilities and learning difficulties. New equipment and therapeutic interventions have been put in place. An exciting new programme of activities such as messy play, sensory play, drama, dance and music are available as well as all other youth club activities. The weekend provision is more bespoke and Saturdays are more Autism specific. Each young person has a personal development plan to ensure they can fully engage and enjoy their time at the club and this summer they will be running a series of 2 day provision during the holidays for young people with disabilities, their siblings and friends. Junior 8-12 years are Wed and Fri (4pm – 8.30pm) and Sat and Sun (2pm- 5pm) while Seniors 13-25yrs are Mon, Tue, Thur (4pm – 10pm) and Sat and Sun (6pm – 9pm) For further details please contact Nicola Rigby, Senior Youth Worker – Inclusion on 01204 540 100 or 9

Resources... Travel advice for parents and carers of children on the Autistic Spectrum and learning disabilities… Manchester Airport’s new free ‘Airport Awareness’ book for parents and carers of children on the Autistic Spectrum may help your journey through the airport. At Manchester Airport they realise how stressful travelling through an airport can be for children on the Autistic Spectrum, especially when it’s a break in their routine and they are unsure of what to expect. This book will take you on the journey through Manchester Airport, using photographs to explain the process you will take. It has been divided into the various stages of your journey through the airport, describing what you will see and hear, from arriving at the airport, going through security and through to returning back home. In each section there is a tick box for you to interact and engage with your child in the sights and sounds along your journey through the airport. There is also an accompanying video which can be viewed at, where an online version of this booklet can also be downloaded. There is space at the back of this book for your child to jot down any worries they may have and also a fun zone to fill time when you may be waiting around. They have created this book in conjunction with advice from the National Autistic Society, Autistic Society Greater Manchester Area and Bolton Kidz2gether. The book is downloadable free at

New Carer’s Allowance Online Service Introduced in October, the new Carer’s Allowance Online Service allows carers to make an electronic claim for Carer’s Allowance using the internet. As well as making new claims, claimants in receipt of Carer’s Allowance can also now use the service to notify DWP of a change of circumstances. The service is available 24 hours a day, seven days a week and once a claim has been completed and sent online, it is received immediately by the Carer’s Allowance Unit helping ensure that a decision is made as quickly as possible. The service can be accessed at the following link:- the Online Service can now also be accessed from smart phones and tablets as well as computers and laptops. For further information or advice, please phone 0845 608 4321

Take a look at Cerebra parent story videos… Parents who have been involved in research at the Cerebra Centre for Neurodevelopmental Disorders share their stories about raising a child with a rare genetic syndrome in some wonderful videos. The videos include Rob and Jane's video story about their son Daniel, who has Angelman Syndrome; Salli and Nick talk about their experiences with their son Sam, who has Smith-Magenis Syndrome. They also talk about Sam’s difficulties with sleep; Sally-Anne talks about her experiences with her son Aidan, who has Smith-Magenis Syndrome; and Steve talks about his experiences with his sons Tom and Robin, who both have Fragile X Syndrome. The videos can be seen at Cerebra’s website 10

What’s going on? Workshops around the region, our local offer... By working together and developing partnerships with other organisations across the North West we can offer free information sessions to parents and professionals. Sessions include general advice, information sessions and themed sessions which parents have told us they would like further information around. To arrange Information sessions, drop in sessions or bespoke training sessions, or for more information about Contact a Family North West please contact Karen Robinson, Regional Development Manager NW England on or 01706 220578

Drop In at Aiming Higher, Blackpool New drop in dates for Aiming Higher. Wednesday 16th April 10am – 12 noon and Friday 16th May 11am- 1pm. Aiming Higher, 231-233 Church Street, Blackpool FY1 3PB. Come along and meet Contact a Family’s Parent Advisor, have a chat, find out about help that might be available and how we can help you. For more information contact Corriena at Contact a Family on: 01772 812294 or email:

Want to try for your pilots licence? Read on… Freedom in the Air (FITA), in partnership with Phab, is proud to announce a National Private Pilot's Licence (NPPL) scholarship to be awarded in 2014. Generous Funding for this joint programme has been provided by The Florian Charitable Trust. The aim is to support a young disabled person to realise their full potential through the pleasure and thrill of flying. The funding will be used to pay for 45 hours of dual flight instruction; 100 hours ground school, written exams, and accommodation. The scholarship will take place at FITA's newly purpose built accessible aeroplane production facility at Birchwood in Yorkshire which also boasts residential accommodation, built applying concepts of Universal design so both able bodied and disabled people can work alongside each other and benefit from the set up. From making adapted aeroplanes to flying them. The Phab Freedom Flying scholarship will be a fantastic opportunity for a young person from Phab to learn to fly in a supportive environment, and gain a qualification which will benefit them throughout their lives. The charity Phab are excited to be offering an amazing opportunity for a young disabled person (minimum age 17) to gain their Pilots License. This unique experience has been made possible with enormous thanks to the Florian Trust, Modify and Freedom in the Air. To find out more, watch the following video Application forms are available at For more information please contact Rebecca Hargreaves, National Projects Manager on 01254 824784 or 07875 140898 or visit the website at 11

What’s going on? Transition Support Group (TSG) in Lancashire… TSG is a parent led support group for any parent or carer of a young person aged 14 to 25 with an additional need or disability who has entered the period commonly referred to as ‘Transition’ in Lancashire. The group meets once a month, with the aim of providing support and guidance, to promote confidence and knowledge, and to help each other to try to make sense of the changes during transition. Transition can relate to any area of young person’s life, such as education/employment, health or social/independence/support needs. The meetings are friendly and informative with opportunity to discuss the things and listen to specialist speakers. Supporting each other can make the journey of Transition easier to understand and work through preparing young people for adulthood in an informed and positive way. The next meeting are being held on 27th May at Global Renewables Lancashire Operations Ltd, Environmental Education Centre, Farington Waste Recovery Park, Sustainability Way, Leyland, Lancashire, PR26 6TB. For more information contact them on 07756 101 478 or email

Take a look at what TAAG in Lancashire have to offer… TAAG (Teenage ASD, ADHD Group) are a voluntary support group that operates in Chorley, Preston and South Ribble, funded and run by parents of children with social and communication requirements. They provide fun activities for children, young people and their siblings (8yrs – 18yrs old) such as trampolining, swimming, rock climbing, pool club and day trips out. They also have parent/carer support group meetings with coffee, chats and guest speakers. There is also information available on training courses and workshops and on-line support where you can chat to other members. To find out more please ring 07738 129 447 or visit the website

Foetal Alcohol Spectrum Disorders (FASD) workshop… The workshop Foetal Alcohol Spectrum Disorders (FASD)-“What is it? - How it happens! It’s impact on education & CJS” was put together to attract professionals who come into contact with children/youth that have been affected by alcohol consumption in the womb. FASawareUK offer support face to face, electronically and over the telephone. Through their work, they have found biggest issue from carers and parents, is the lack of informed professionals dealing with the child/youth, especially within education and the criminal justice system. Early diagnosis and intervention in both these areas is vital for positive outcomes. The workshop will be held on Tuesday 20th May 2014 at 9:00am - 1:30pm at Lytham Assembly rooms, Dicconson Terrace, Lytham St Anne's, FY8 5JY. The cost is £25 per delegate/£5 for parent/carers. Places are limited so book early to avoid disappointment. For more information please contact FASawareUK on 01257 432 423 or 07549 230 070 or visit, email: We recommend that before attending any activities you contact the service provider to check it is suitable for your needs and if there are any costs incurred. We do our best to ensure accuracy but cannot be held responsible for any changes made to services, times or dates advertised. We can advertise events but not recommend or advise.


Who to ask? Who to ask about what’s going on? There are so many groups, meetings and play schemes around the region it would be impossible for us to list all of them. If you would like to find out what is going on in your area more regularly, or at specific times like school holidays, for specific conditions, or events, here’s a list you might need... Your local Family Information Service (FIS) should know what is going on for families with disabled children in your area. There is no longer a national number and each local area has its own contact number but you can search for your local FIS at Support groups can be a great source of information. If you know of a local support group in your area, either for children with disabilities generally, or a group set up for the same condition as your child, ask them if they have details of suitable events. Carers centres are there for anyone who is an unpaid carer for another person. They often have strong links with parent carer forums. Lots of services advertise their events with carers centres and they frequently hold their own events. Parent advisors, family support workers and SENCOs in schools, often keep abreast of local events, meetings, groups and play schemes, so ask if they know of anything suitable. Your parent carer forums can offer local information and they sometimes put on social and information events themselves. Here are their contact details. For more information about forums please contact:- Carolyn Deveney – Parent Carer Participation Advisor, or phone 07905 917 066. Blackburn with Darwen - Blackpool Aiming High Parents' Forum - Bolton Area Council for Parents & Carers (BACPAC) - Bury Parent Partnership - Cheshire East Parent Carer Forum –, Cheshire West and Chester Parent Part. Parent Carer Forum -, Learning To Change Cumbria - Halton - SPEAK - Supporting Parents, Events and Advice in Knowsley - Lancashire Parent Carers Forum - Liverpool, LivPac – Manchester Parents for Change - Parents of Oldham in Touch (POINT) -, The Parents' Forum for Children with Disabilities (Roch, Hey and Middleton) - Salford Family Forum –, P.A.C.T.S. (Parents and Carers Team Sefton) -, St Helens - Listen 4 Change -, PIPS (Parents In Partnership Stockport) - Tameside - Our Kids Eyes - Trafford Parent Forum -; Warrington parents and carers - Wigan Parent Carers Forum -, liz Wirral Family Consultation Forum -


Useful contacts and numbers Useful contacts and numbers… Carers Centres Carers' Centres are independent charities that deliver a wide range of local support services to meet the needs of carers in their own communities. All Carers' Centres provide, either by telephone, drop-in or outreach surgeries, core services like information and advice - about all issues affecting carers, emotional support and community consultation ensuring that the local carers' voice can be linked in to the regional and national decision-making bodies. Carers' Centres develop other services in response to identified local needs. Their aim is to help ensure that no carer has to reach crisis point before they get the support they need. You can find your local carers centre by going to the Carers Trust website at or by ringing them on 0844 800 4361. Contact a Family Contact a Family is the only UK-wide charity providing support, advice and information for families with disabled children, no matter what their condition or disability. We have a freephone helpline staffed by expert parent advisers who can help with any issue to do with your child’s disability and we also have specialist workers in Special Education Needs available. Just call 0808 808 3555 (mon-fri, 9.30- 5.00). We also have a wide range of publications and produces newsletters, booklets and research reports, helping parents to stay informed. If you would like to keep up to date with national news and welfare changes then sign up to Contact a Family’s free monthly e-newsletter ‘What’s new’ –from our hub in London and join us on Facebook and Twitter. Your North West team also produce this newsletter so make sure you’re on our database! Check out the website for further information at Family Fund Family Fund are the UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. They help ease the additional pressures families face helping with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together. For more information please go to email or 08449 744 099.

Family Information Service (FIS) Your local Family Information Service (FIS) provides a range of information on all services available to parents and carers with disabled children 0-19 or 0-24. They provide a free, impartial and confidential service to parents/carers, young people and professionals providing information on: childcare; benefits and grants; parenting support; family matters; and support for children with additional needs/disability (including short breaks). You can search for your local FIS at and enter your postcode. There is no national number. Occupational Therapists (OTs) Occupational therapists aim to enable people to "achieve as much as they can for themselves and get the most out of life’. An occupational therapist can identify problem areas such as dressing, sitting, walking, and will carry out an assessment and use techniques and aids to improve someone’s ability to regain or improve their independence. You can be referred for an assessment by your GP or consultant (specialist doctor); a nurse; another healthcare professional; a social care professional. Local Government Ombudsman (LGO) LGO look at complaints about councils and the services they provide. They are impartial free service. In terms of education, they cannot consider issues that could be appealed to a tribunal, such as which school a child should attend. However they can consider whether a local authority delayed in finalising a child’s statement of special educational needs, for example, or has failed to communicate properly with parents during the statementing process. If a child is out of school, they can also consider whether they should have been offered interim education provision at home or at a different placement. Children’s services complaints can relate to the provision of services to a disabled child or their family or how a local authority has dealt with a safeguarding issue. They also hear some complaints about whether a local authority was procedurally correct in refusing a Blue Badge. To contact the local government ombudsman call their free helpline on 0300 061 0614 or visit


Useful contacts and numbers Parent Carer Forums Parent carer forums are made up of parents of disabled children who offer service providers the views and concerns of parent carers to influence service development, design and delivery. They are made up of a committee or steering group which manages the work of the forum and parent representatives for strategic decision making committees and/or task groups. Successful forums are regularly involved in joint work to shape and develop services for disabled children and their families. To find out more about Parent Participation at Parent Partnership Services (PPS) Parent Partnership Services fulfil the legal requirement to provide information advice and support to parents and carers of children and young people with special educational needs (SEN). PPSs have a role in making sure the views of parents are heard and understood with regard to SEN and that these views inform local policy and practice. You can find your local PPS at Parent Support Groups Parent support groups are local groups that provide support for families of children with additional needs/disabilities, within a specific town, geographical area or school. They can offer parents the chance to make friends, share experiences and learn about local services. Some of the larger groups also offer local support (for example the National Autistic Society). They are a good way for parents to find out about their child’s condition or disability, latest treatments and current thinking and are usually linked to expert medical professionals. To find out about local groups contact the Contact a Family’s freephone helpline on: 0808 808 3555 (Mon–Fri). Portage Services The Portage service is a home visiting educational service for pre-school children with additional support needs and their families. Their aim is to support the development of young children’s play, communication and relationships. For more information please see the National Portage Association at New parents can e-mail

Motability The Motability Scheme enables disabled people to exchange either their Higher Rate Mobility Component of Disability Living Allowance to obtain a new car, powered wheelchair or scooter. Motability will cover insurance, breakdown, maintenance and provide a new vehicle every 3 years. For more details contact or phone 0845 456 4566. Speech and Language Therapists (SALT) Speech and language therapy deals with disorders of speech, language, communication, feeding and swallowing. SALT work closely with parents, carers, teachers, nurses, occupational therapists and doctors. Referral is through a GP, district nurse, health visitor, nursery staff or teacher. You can also refer yourself to your local speech and language therapy service by ringing your local health authority and ask for the contract details of your local service. Special Educational Needs Coordinator (SENCO) The SENCO is the member of staff in school whose job it is to coordinate support for children who have special educational needs (SEN) both inside school, and, if necessary, drawing in expert help from outside the school. It is the SENCO’s duty to keep parents informed about their child’s progress and consulted on decisions that may affect them. They are the point of contact if a parent has any concerns about their child. To find out more go to to and search for SENCO. Sure Start Children’s Centres Sure Start Children’s Centres are a ‘one-stop shop’ for children primarily 0-5 and their families offering: childcare, play and early learning; expert advice, healthcare, parenting and family support; brushing up on your skills and learning new ones; taking qualifications; links to training and job opportunities; family fun and meeting friends. Most services are free but you will usually need to pay for childcare. If you’re on a low income you may be able to get some extra help to cover the costs. You can find your local sure start centre at and enter your post code.

If you notice any of this information as no longer correct or you would like us to add something to it please contact the North West team at


Registration Not your own copy? Need to update your details? Fill out our registration form... Thank you to all the parents and professionals who have filled out the new registration form since September 2011! If you are new to Contact a Family or have or have changed your contact details since filling out the form, we need you to fill in our parent or professional registration form. If we have your details we can send you our free newsletters, information about family events and news about all kinds of issues that may affect your family or the families you work with. Contact a Family is committed to the confidentiality of your personal information. Personal data will be held and used in accordance with the Data Protection Act 1998 and will not be shared with any third parties for commercial use. You can get a form sent by e-mail from our staff at and send it back to us electronically. If you would like us to send you a registration form or you would like to write to us about something, you can send a letter to us at North West Registration, Contact a Family, 209-211 City Road, London, EC1V 1JN. Contact a Family would like to thank the following for their generous support of our work in the North West Region: Kathleen and Ivy Barnett, Children in Need, The Big Lottery Fund, ScottishPower Energy Trust, Irwin Mitchell Solicitors, The Camelia Trust, The Sunflower Foundation, The Elizabeth Rathbone Charitable Trust, The Miss Jo Torrington Children's Fund, Chrimes Family Charitable Trust and the Duchy of Lancaster Benevolent Fund.

Don’t forget to take a look at our… Website, YouTube, Facebook and Twitter discussions by clicking on the links on the website You will find lots of information and advice there including: • Publications and leaflets • News stories • A to Z of medical conditions • Fundraising activities and campaigns • Making Contact (to get in touch with other parents) • Support for professionals Disclaimer... Every effort is made to ensure the information in this newsletter is correct. Contact a Family can accept no liability for errors and omissions and cannot recommend products or services. Views and opinions expressed are not necessarily those of Contact a Family.

Contact a Family 209-211 City Road, London EC1V 1JN. Tel 020 7608 8700 Fax 0207 608 8701 Email Incorporating The Lady Hoare Trust. Contact a Family is a registered trademark. Registered Charity Number: 284912 Charity registered in Scotland Number: SC039169 Company Limited by guarantee Registered in England and Wales Number: 1633333 VAT Registration Number: GB 749 3846 82


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