Contact A Family Autumn Newsletter by Schudio

Autumn Bulletin 2013

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

Want to keep up-to-date with the national news and changes?

Contents Contact a Family Team

Staff numbers and emails

Campaigns

New and on-going campaigns

News

Latest news from Contact a Family

In Focus

Family’s stories from around the region

Resources

Useful resources for families

What’s going on?

Events, workshops, and groups

Who to ask?

If you would like to keep up to date with all the national news and information about welfare changes then sign up to Contact a Family’s free monthly e-newsletter ‘What’s new’ –from our hub in London. ‘What’s new’ now has a circulation of over 2,500 parents and professionals. The next issue is being sent out in a couple of weeks and the one after that, in early October, will be the second of our What’s New: ‘benefits specials’. The benefits specials are particularly important for anyone wanting to keep pace with this fast changing area. Our Newsletter, ‘In Contact’ is only published once a season and focuses more on what is happening in the North West (although we try to keep you informed about the main changes happening nationally!)

Who to contact about what’s going on

Useful numbers and contacts

A who’s who guide

Registration

So to have more regular bulletins about what is going on nationally, sign up to Contact a Family’s free mailing list by just going to: http://www.cafamily.org.uk/newsletter-signup/ Contact a Family - helping you to stay in touch!

Contact a Family Website www.cafamily.org.uk/northwest 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 northwest@cafamily.org.uk or get in touch with individual team members below. Corriena Tomkinson – Parent Advisor (North West) corriena.tomkinson@cafamily.org.uk 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) catherine.tyrie@cafamily.org.uk 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. Diane Astill – Parent Advisor (Cumbria) diane.astill@cafamily.org.uk Telephone 016973 23309 Please contact Diane if you have an inquiry regarding Cumbria. Diane Bridge - Parent Advisor (North West) diane.bridge@cafamily.org.uk 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) carolyn.deveney@cafamily.org.uk 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 karen.robinson@cafamily.org.uk 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) ruth.card@cafamily.org.uk 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.

Recent Campaigns... Through consultations, media work and working with other disability organisations, we continue to try and influence government plans to minimise the negative effects of changes to the benefits system. Over the last few months we successfully argued that parent carers should be exempt from the Working Tax Credit hours rule change, and were successful in making disabled families exempt from the bedroom tax where the child with a disability cannot share a room.

On-going campaigns... Reducing poverty Stop the DLA takeaway Stop the cuts to council tax benefit Helping to make families stronger... Better access to information and services for families...

Current campaigns... Thousands complain over the proposed â&#x20AC;&#x2DC;20 metreâ&#x20AC;&#x2122; rule. The Disability Benefits Consortium (DBC), of which Contact a Family is a member, have written to David Cameron and Nick Clegg to raise our concerns at the changes, including the introduction of the 20 metre qualifying distance for the enhanced rate of the benefit. Contact a Family is delighted that over 10,000 people together with over 80 charities, healthcare organisations, local authorities and celebrities, signed the letter stating that people will be "trapped in their own homes" if proposed changes to the disability benefit system continue to be implemented. Read more on the campaign at http://www.cafamily.org.uk/news-and-media/thousands-complain-to-cameronand-clegg/?page=2

We are stronger together... 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 una.summerson@cafamily.org.uk and let her know.

News Costly, unavailable and affecting parents’ ability to work... A new survey reveals gaps in childcare for parents of disabled children. ‘Working Families’, the UK’s leading work-life charity, conducted a survey of parents of disabled children which reveals the high costs and difficulties in finding suitable childcare and the effects on parents’ work. Ninety per cent of parents said that they had to change their hours, take unpaid leave, request flexible working or make other changes to meet the need for care for their disabled child – 4% of parents reported that they had left their job due to childcare needs. The survey of 182 parents this summer revealed: • A third of parents of disabled children were not working, although almost 80 per cent of these would like to be in paid work. • 79 per cent said childcare was a factor stopping them working Of the two thirds in work: • Half of those in work responding said that their childcare cost extra because their child was disabled with 62 per cent of these paying an extra £5 or more an hour. • Over 80 per cent responding said their summer care arrangements were a compromise with the vast majority relying on friends and family to fill the gaps in care. • Only 10 per cent of families said that holiday childcare had no impact on their working lives. 41 per cent had changed hours, 31 per cent took unpaid leave, 28 per cent made a flexible working request and 4 per cent left their jobs because of care difficulties • The one thing that would make the most difference with summer holiday childcare was affordability – 30 per cent of parents raised this as the over-riding concern. • Parents told us: “It’s a nightmare, not understood by others”; “For children with very complex needs there is no suitable care available”; “I can’t drop three children in different places at the same time”; “childcare prices cripple my family”. Sarah Jackson, Chief Executive of Working Families commented: “Our survey reveals the difficulties parents of disabled children face in juggling work and summer holiday childcare. Parents are compromising, adapting their working hours, and paying over the odds for expensive childcare. All parents should be able to find appropriate, accessible, affordable childcare – but many parents are paying an extra penalty for the cost of caring for a disabled child and two thirds of parents who sought help from their Family Information Services found they were not able to help.’ “As the Government consults on making childcare more affordable for parents, it must consider the plight of parents of disabled children. We don’t think parents should be charged more, simply because their child is disabled – but they clearly are – and these extra costs are not recognised in tax credit (which pays a maximum of 70 per cent of £175 for one child or £300 for two or more children) or voucher support for parents. “There are clear messages here for employers too – with a fifth of parents reporting concerns about the need for employers to be more flexible about leave taking. Until we solve the problems of childcare then allowing parents to take leave, or change their working hours to cope with the summer holidays is vital to keep parents in work and out of poverty.” A full copy of the report can be found at www.workingfamilies.org.uk The Working Families Freephone legal helpline for parents, carers and their advisers gives advice on employment rights and benefits. The helpline is run by a team of solicitors. Call free on 0300 012 0312 or e mail advice@workingfamilies.org.uk 4

News Disabled children excluded from play spaces in England A new survey reveals that many providers are not able to deliver good quality inclusion. KIDS, a charity that works with disabled children, young people and their families, has surveyed over 900 people working across play and leisure provision and disability services in England. They found that most providers still do not have the resources or support needed to deliver good quality inclusion. As a result, parents are not confident to leave their children in mainstream services and prefer to place their children with specialist providers. This lack of choice is further excluding disabled children and young people from their communities at a period when all children are experiencing a restriction in their ability to play out in their local area. Parents of disabled children who responded to the survey expressed concerns that disabled children are more likely to be victims of bullying and face further isolation. For the full report please go to www.kids.org.uk/information/108381/kids_playday_survey_report_2013/

Cumbria parent carer highlights the importance of social care... Rachel Davies and her two beautiful daughters from Cumbria are featured in a new booklet about social care. In it she highlights the difficulties of caring, working, having a relationship and planning for a future for her family, without knowing the future availability of social care. Contact a Family, who are one of the 65 organisations in the Care and Support Alliance, has urged George Osborne to recognise the huge social value of social care in the forthcoming spending review. A letter was delivered to the chancellor of the exchequer urging him to make social care a top priority for investment in the spending review and is accompanied by a booklet which shows through personal examples of people helped by social care provision - that the system offers great value for money, enabling older people, disabled people and carers to live safely, with dignity and able to make a positive contribution to society. See Rachels piece in the booklet at our website http://www.cafamily.org.uk/news-and-media/tell-george-osborne-to-invest-in-carebefore-11am/

Campaign for parents of children with additional needs... Mumsnet launch a new campaign called 'This Is My Child' as a myth-busting and awareness-raising campaign for children with disabilities. It has been launched in response to requests from Mumsnet members and supported by input from some of the leading charities in the field. The campaign aims to support parents and carers of children with additional needs, inform others and open up a conversation about making life easier for everyone caring for children with additional needs. Information that you can find on the 'This Is My Child' campaign site: • photo gallery of pictures of Mumsnetters children, with differing additional needs • myths about special needs • facts and figures • strategies for parents and carers • chat area to talk about special needs For more information please see http://www.mumsnet.com/campaigns/this-is-my-child 5

News New guidance for children with Autism... NICE has issued guidance on the management and support of children and young people on the autism spectrum. Key points include: •

Health and social care professionals should assess what personal, social, emotional and practical support can be offered to families to help them care for autistic children. • Services should be tailored to the individual needs of children, their families and careers. • Autistic children should have access to leisure activities and receive more support during transitional periods. • Each autistic child should have a care manager or key worker responsible for overseeing their treatment. For more information please see http://publications.nice.org.uk/autism-cg170

Ever thought of volunteering? Then read on... Contact a Family supports families caring for disabled children with any disability or condition through paid workers and volunteers. Our Volunteers are an integral part of the organisation and support other families through signposting, being a listening ear and finding ways to inform parents and professionals. We are looking for a parent/ carer of a child with a disability or additional needs who... • • •

Lives in the Liverpool area? Has 12 hours a month to help us reach more families? Is aware of the issues of families in your locality?

‘If so, volunteering for Contact a Family might be for you...’

We are looking for one parent to join our team of volunteer parent representatives (reps). Reps raise awareness of Contact a Family in their local areas and signpost parents and professionals to local information. Our reps decide for themselves how to use their volunteering time to fit in with their own family circumstances. Volunteers are backed up by the knowledge and expertise of all the staff teams in Contact a Family and are supported and valued through induction, training, regular meetings, individual support and payment of agreed expenses. “It’s wonderful to share what I've learnt on the journey, to make it simpler for the next parent.” For further information and an application pack, contact Karen Robinson on 01706 220 578 or email karen.robinson@cafamily.org.uk

Has your council refused to assess your child for short breaks? When parents and carers come up against a refusal to assess their child for short breaks, or any other specialist service (apart from educational needs), they can now use Contact a Family’s updated template letter. Every Disabled Child Matters (EDCM) is a consortium campaign that we are part of, fighting for rights and justice for disabled children. The template letter we did a while ago with EDCM, for parents to be able to send to their local authority, has now been updated. It has been written by two lawyers who specialise in cases to do with disabled children. The information and template letter can be found at http://www.edcm.org.uk/media/141030/refusal-to-assess-letter.pdf . We hope this helps! 6

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 came from a parent who attended some of our workshops.

I am a mum living in a small town in a rural part of Lancashire. I have two sons aged 8 and 5. My oldest son has ADHD (for which he takes medication), severe dyslexia, learning difficulties, visual processing disorder and he is being assessed for Autism. My younger son has Autism, Tourette syndrome and learning difficulties. I have recently received some help from Contact a Family and wanted to share my experiences with other families. Both of my sons have had sleep and behaviour difficulties since they were tiny babies. This has made everyday life difficult; if we are all tired this leads to a downhill spiral that can affect every day of our lives. I have often thought that if I could have anything it would be for all of us to have a good night’s sleep and ‘normal naughty’ behaviour. Over the years I have read books, watched TV programmes and received lots of advice about how to change my sons sleep patterns and behaviour. I recently attended the Contact a Family, Sleep (Helping your child to sleep) and Behaviour (Difficult behaviours that challenge us) workshops at my local Children’s Centre. I have attended similar workshops in the past but I found these are the best ones I have attended. The staff are very friendly; I felt safe and secure, I felt I could be honest and I was not judged by anyone. It was great to meet other parents and know that I am not the only one whose children have difficulties with sleep and behaviour. To be with other parents, know I’m not a bad mum, that I haven’t done anything wrong and to know that there is help out there was amazing for me! I found it great to share tips with other parents, know that I’m not alone and hear success stories. Since attending the workshops I have kept in touch with a couple of other mums which is a real bonus. My top tips from the Sleep Workshop are: 1. It is OK not to be perfect- keep trying 2. The calmer I am the better it is for my boys 3. Create a soothing environment and routine- I find nice music, nice smells and a lava lamp all help My top tips from the Behaviour Workshop are: 1. Take time to think about the behaviour- what happens before, during and after 2. Single out the most challenging behaviour and work on that 3. Keep trying! Attending the workshops has made a difference to me and my family and given me hope that things can change. Contact a Family also helped me through their Freephone helpline. I contacted them regarding my housing benefit and the bedroom tax. The Advisor on the helpline was very easy to talk to. She provided me with a letter to send to my local council and gave me updates about the government and court action regarding the bedroom tax. I have now been awarded a higher rate of housing benefit, a back dated payment and it has been accepted that I can apply to the local council social housing for a three bedroom property because both of my sons have sleep and behaviour problems and cannot share a bedroom. The Contact a Family helpline is only a phone call away and it can make such a difference to you and your children’s lives. 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 catherine.tyrie@cafamily.org.uk or phone 0161 445 3749.

Resources... Have you read our newly updated tax credit guide? There are two tax credits offering financial support to families. Our updated Tax credits guide, for parents of disabled children, takes you through the system, with 'ready reckoner' tables to work out what you might be entitled to. The guide explains: • • • •

how to get help with childcare costs. how tax credits interact with other benefits you may be receiving. what to do if you've been overpaid tax credits and are asked to pay it back. what will happen when the new universal credit comes in, in October.

The Tax credits guide is only available online. Parents, please call our freephone helpline if you would like a copy sent to you, and for individual advice about your situation from our expert parent advisers. For more information on universal credit and other benefit changes, you can also call our freephone helpline on 0808 808 3555 and ask for a copy of Benefits are changing - a guide for families with disabled children.

New carers, family and friends section on our website… Read our tips to help reduce stress for families and carers of disabled children. Based on our face to face information sessions conducted last year, our new web section ‘Carers, family and friends’, aims to help parents and carers reduce stress in key areas. For more information go to our website at http://www.cafamily.org.uk/advice-and-support/carers-familyand-friends/

Personalisation and personal budgets? Want to know more? Today KIDS launches a new eLearning package for parents and carers, aimed at explaining the key points about personalisation, personal budgets and how they may impact on their family life. KIDS is the charity that works with disabled children, young people and their families. As part of the ‘Making it Personal’ project, sponsored by the Department for Education, KIDS has created an eLearning suite aimed at parents and carers of disabled children and young people. The eLearning is intended as a simple walk through some of the information presented in the ‘Taking a Personal Approach: A Parent’s Guide to Personal Budgets’ handbook. The handbook was produced earlier this year for parents and carers about personal budgets and how ongoing government changes may affect them. Anyone wishing to access the free eLearning can do so by creating an account here: http://elearning.kids.org.uk/login/index.php

Check out the new discussion forum at NDCS... Parent Place is an on-line discussion forum run by the National Deaf Children’s society set up so that parents can talk to each other about issues affecting them and their children. Some of the discussion boards include, childhood deafness, education, financial support, equipment, your choice, teenagers, glue ear, parenting, communication, fathers, grandparents and children with additional needs. Find Parent Place and other resources at http://www.ndcs.org.uk/applications/discussion/ 8

Whats going on... Hearing Impaired Children’s Club - 19, 26 October 2013 This set of 3 FREE Saturday Clubs are for families of Hearing Impaired Children. Each session runs from 10-12 and the family can take part in fun craft and games activities, as well as supported visits with trained staff to different areas of the museum each week. Scooby Doo. Where are you? - Friday 25 October - Sunday 3 November 2013 Join the Scooby Doo team to solve a series of mysteries. Over the October half term visitors must help the gang from Scooby Doo look for clues and solve the mystery of who – or what! – may be haunting the museum. Children can also help Velma, Shaggy, Daphne and Fred find the ever elusive Scooby Doo, who is hiding somewhere in the museum, before solving the mystery and unmasking the baddie. Down Syndrome Children’s Club - 23, 30 November and 7 December 2013 This set of 3 FREE Saturday Clubs are for families of Down Syndrome Children. Each session runs from 10-12 and the family can take part in fun craft and games activities, as well as supported visits with trained staff to different areas of the museum each week. Christmas At Eureka! - Weekends Saturday 30 Nov- Sunday 22 December and Monday 23 December 2013 Step into our winter wonderland to meet Santa and his friends. Visually Impaired Children’s Club - 11, 18, 25 January 2014 This set of 3 FREE Saturday Clubs are for families of Visually Impaired Children. Each session runs from 10-12 and the family can take part in fun craft and games activities, as well as supported visits with trained staff to different areas of the museum each week. Eureka’s ‘Extra Pair of Hands’ will provide you with: • •

A trained member of the gallery staff dedicated to your family for 2 hours of your visit Tailored suggestions for helping your whole family experience the most of your visit.

You can enjoy two FREE Extra Pair of Hands sessions in a year. These clubs are possible thanks to

funding from Esmée Fairbairn. For more information call Trizia or Coral on 01422 330069 to book your place at one of the clubs at Eureka, Discovery Road, Halifax HX1 2NE. https://www.eureka.org.uk/

Annual PIPS Information Day 2013 in Stockport... PIPs are holding their information day on Wednesday 16 October 2013 9:15am to 4pm in Stockport. With inspirational national and local speakers all-day market place the day will give information about local services for children and young people with disabilities and additional needs and their families, give practical advice to families on coping with disabilities and additional needs, provide inspirational stories about dealing with disability and additional needs. Parents, Carers and Professionals welcome to attend and there is free admission, an accessible venue and lunch and refreshments are provided. You can now book your FREE tickets to attend the event at http://www.eventbrite.co.uk/event/7863151899/efbevent 9

Whats going on... Coffee mornings at Disabled Living... Disabled Living is hosting two coffee mornings for carers from around Manchester Friday 8th November 9.30 –12.30 and Tuesday 3rd December 9.30 – 12.30. You can go along and view or try products and talk to an occupational therapist or a continence advisor. Disabled Living is at Burrows House, 10 Priestley Rd, Wardley Industrial Estate, Worsley, Manchester, M28 2LY. For more info phone 0161 607 8200 or visit www.disabledliving.co.uk

Musical discovery sessions at the Bridgewater Hall ‘Be Hear Now’ musical discovery sessions have been designed to provide fun, creative half term activities. They are designed for young people age 0-19 with special educational needs to enjoy alongside their parents or carers and siblings. Combining opportunities to listen and take part, the sessions on 1st November at Bridgewater Hall, Manchester, have previously received excellent feedback from families and young people. Book online or on 0844 907 9000 Tickets £5; Family ticket £20 (up to 5 people).

The Manchester Science Festival is coming… Science Spectacular 2013 - Saturday 2 November 2013, 11am – 4pm, at Whitworth Hall & Manchester Museum, on Oxford Road. (Free, drop in event. Explore inside of a nuclear reactor, go on a journey through the hidden body, take a closer look at the moon, and snuggle up to some unusual creepy crawlies. Over 40 interactive, hands on science activities – fun for all the family, suitable for children of all ages, including face painting and lucky science dips, and there's plenty to keep adults entertained too! For more info go to http://www.engagement.manchester.ac.uk/ and click on ‘science spectacular’.

Kidz up North has moved... The exhibition for disabled equipment and services is moving this year to Event City. The exhibition with over 120 exhibitors, offering advice and information on a variety of issues and a range of seminars running along side the show, will now be housed in Event City (opposite the Trafford Centre), Barton Dock Road, Manchester, M17 8AS for the day on Thursday November 21st 2013. Our North West team will be there so come along and say hi to us. For more information email info@disabledliving.co.uk, http://www.disabledliving.co.uk/Kidz/North or phone 0161 607 8200.

Family Dyslexia Fun Day… Manchester Dyslexia self-help group are holding a family fun day. It’s on Saturday 16th November 10 till 3pm in St George's Community Centre, Livesey Street/Oldham Rd, Ancoats, Manchester, M4 5HF. There will be fun activities for all, a fire engine, Mr Reptile and his animals, face painting and a chance to have a chat about welfare reform from the team at Adactus. For more info http://www.manchesterdyslexicselfhelpgroup.weebly.com/ Or email: manchesterdyslexicselfhelpgroup@hotmail.com Tel: 07400 977590. 10

Whats 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. Topics include: • • • • •

• • • •

Contact a Family: who we are, what we do and how do you contact us? Difficult behaviours that challenge us. Disability Living Allowance Welfare changes and benefits overview Energy issues Helping your child to sleep Coping and support Helping parents support the brothers and sisters of disabled children Impacts on family life: Disability awareness training (for staff)

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 northwest@cafamily.org.uk or 01706 220578

Creative music for 16-25’s in Greater Manchester... Change the Music are a not for profit company in the North West which are holding music workshops for young people. They experienced at designing music workshops with adults with learning disabilities. Sessions start in September and will be held at: Tuesdays 6:30-8:30pm Firwood High School Stitch Mi Lane Bolton BL2 4HU

Fridays 10:00-11:30am Stockport Music Service Offerton School Campus The Fairway Stockport, SK2 5DS

For details, availability and booking please call Kenton Mann 07704 576591, 0161 702 9290, musicunlimited@me.com and www.music-unlimited.org.uk .This company does charge to cover costs.

Pop in to our drop in sessions in Blackpool... Contact a Family will be holding a drop-in at Aiming Higher Blackpool. They are at 231-233 Church Street, Blackpool FY1 3PB. The drop-in will be on: 13th November 10-12.00. Aiming higher would like people to book with them for a drop in slot. Please phone on 01253 206448 to book your time slot. For more info contact Corriena on 01772 812294, corriena.tomkinson@cafamily.org.uk 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.

Whats going on... Free Cinema Event with Contact a Family… Come and join us at one of our cinema events for families with disabled children at Blackpool Odeon and Trafford Centre, Manchester. We have exclusive use of a screen in both cinemas for families to enjoy the new film, Cloudy With a Chance of Meatballs 2. All screenings will be without trailers, in 2D not 3D, with lights on low and sound reduced slightly. Cloudy 2 continues right after the first film, where a food-making machine gets out of control, but its creator, young inventor Flint, and his friends, eventually manage to stop it. In the sequel, Flint and his friends are forced to leave their home town, but when the food machine awakens, this time producing peculiar food beasts, they must return to save the world.

Blackpool Cinema Event…

Trafford Centre Cinema Event...

For more information and to book your places please ring Corriena.

Bookings can only be taken on Monday 21st and Tuesday 22nd of October, between 9.00 – 3.00. Bookings will be on a first come first serve basis. You can phone Corriena on 01772 812 294.

Bookings can only be taken on Wednesday 23rd and Thursday 24th October, between 9.00 – 3.00. Bookings will be on a first come first serve basis. You can phone Corriena on 01772 812 294.

Date: Tuesday October 29th Time: Arrive at 10.00 for film to start at 10.30. Venue: Odeon Cinema, Rigby Road, Blackpool, FY1 5EP. Film: Cloudy with a chance of meatballs II Certificate: PG

Date: Sunday 3rd November Time: Arrive at 10.00 for film to start at 10.30. Venue: Odeon Cinema, The Trafford Centre Manchester, M17 8AA. Film: Cloudy with a chance of meatballs II Certificate: PG

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 www.daycaretrust.org.uk/nafis 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 carolyn.deveney@cafamily.org.uk, or phone 07905 917 066. Blackburn with Darwen - annmarie.pickering@blackburn.gov.uk Blackpool Aiming High Parents' Forum - www.blackpoolparentsaiminghigh.org.uk Bolton Area Council for Parents & Carers (BACPAC) - www.bacpacbolton.org.uk Bury Parent Partnership - www.buryparentsforum.org.uk Cheshire East Parents' and Carers' Voice – cheshireeastpcf@gmail.com Cheshire West and Chester Parent Part. Parent Carer Forum - www.sites.google.com/site/ppsparentsforum, parentpartnership@cheshirewestandchester.gov.uk Learning To Change Cumbria - www.soul-trade.com/change/forum/ Halton - www.haltoncarers.co.uk SPEAK - Supporting Parents, Events and Advice in Knowsley - www.speakknowsley.co.uk Lancashire Parent Carers Forum - www3.lancashire.gov.uk/corporate/web/?IDSS/33016 Liverpool, LivPac – livpac@btinternet.com Manchester Parents for Change - parents@manchester.gov.uk Parents of Oldham in Touch (POINT) - www.pointoldham.co.uk, pointoldham@hotmail.co.uk The Parents' Forum for Children with Disabilities (Roch, Hey and Middleton) - www.theparentforum.co.uk Salford Family Forum – www.gaddumcentre.co.uk, info@gaddumcentre.co.uk P.A.C.T.S. (Parents and Carers Team Sefton) - www.pactsefton.org.uk, p.a.c.t.s.sefton@googlemail.com St Helens - Listen 4 Change - www.sthelenscarers.org.uk, saradolan@stelenscarers.org.uk PIPS (Parents In Partnership Stockport) - www.pipstockport.org Tameside - Our Kids Eyes - www.ourkidseyes.org Trafford Parent Forum - jimmy.wagg@trafford.gov.uk; geraldine.english@trafford.gov.uk Warrington parents and carers - www.warringtonparentsandcarers.org Wigan Parent Carers Forum - www.wigan.gov.uk, liz saunders@wigan.gov.uk Wirral Family Consultation Forum - www.wirralfamilyforum.org

Useful contacts and numbers Useful contacts and numbers… 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 with free parent guides covering issues such as benefits, rights and entitlements and relationships. Contact a Family also produces newsletters, booklets and research reports, helping parents to stay informed. Check out the website for further information at www.cafamily.org.uk 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. We help ease the additional pressures families face. We can help 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 www.familyfund.org.uk email info@familyfund.org.uk 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, to help you support your children 0-19 or 0-24 if your child has a disability. They provide a free, impartial and confidential (unless there are reasons for concerns about a child's safety and/or welfare) service to parents/carers, young people and professionals providing information on: Childcare and options available; Benefits and grants; Parenting support; Family matters; Support for children with additional needs/disability (including short breaks). You can search for your local FIS at www.gov.uk/find-family-information-service and enter your postcode. There is no national number. 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 www.motability.co.uk or phone 0845 456 4566. 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. By using techniques to improve someone’s ability or by changing the environment or equipment they are using, an occupational therapist allows that person 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. Parent Carer Forums Parent carer forums are made up of parents of disabled children who aim to provide service providers with the views and concerns of all parent carers to influence the improvement of service development, design and delivery. A parent carer forum is generally made up of a committee or steering group which manages the work of the forum. The forum usually provides parent representatives for strategic decision making committees and/or task groups who are able to represent the views of a wider range of parents. 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 www.cafamily.org.uk

Useful contacts and numbers 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. The PPS can also signpost parents to other local and national organisations. You can find your local PPS at www.parentpartnership.org.uk/find-your-pps 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. National condition specific groups, support families in the UK who have a child with a specific condition. 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 local PPS, FIS or 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 www.portage.org.uk. New parents can e-mail parents@portage.org.uk. Speech and Language Therapists (SALT) Speech and language therapy is concerned with the management of disorders of speech, language, communication, feeding and swallowing. Speech and language therapists (SLTs) work closely with parents, carers and other professionals, such as teachers, nurses, occupational therapists and doctors. If you think you, or your child or relative needs to see a speech and language therapist ask your GP, district nurse, health visitor, your child's nursery staff or teacher for a referral. You can also refer yourself to your local speech and language therapy service by ringing your local health authority and ask for the telephone number of your local NHS speech and language therapy 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 www.education.gov.uk 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 www.gov.uk/find-sure-start-childrens-centre 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 northwest@cafamily.org.uk

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. You can get a form sent by e-mail from our staff at northwest@cafamily.org.uk 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… Podcasts, Facebook, YouTube and Twitter discussions by clicking on the links on the website www.cafamily.org.uk 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.