Our Voice

Autumn 2013 Issue 15

Sponsors of Our Voice Families Bill and for those who Carol Mustafa has done a fantastic have Special Educational Needs, job of co-ordinating Our Voice for Welcome perhaps the most significant the last 4 years. Owing to changes in Welcome to the Autumn edition of changes in the last 20 or 30 her personal circumstances, as well Our Voice and the theme that years…. And due to funding as our funding, she has decided to keeps coming up: Change. challenges, there are also step down and the role of co- Things seem to be changing all changes happening to the Short ordinator is to be shared amongst the the time, sometimes too fast for us Breaks scheme. voluntary members of the all to keep up with. We’ll be In addition, Our Voice is going management committee. We would seeing changes coming through in through change and we want to like to give Carol an enormous and the law around the Children and update you all. heartfelt thank you for all of the work that she’s undertaken during this time. But don’t worry; she’ll continue to participate within Our Voice as a member of the management committee. Our Voice welcomes three new parents that are helping out (from left to right) Natalie Sherman, Resim Clear and Khilna Gudhka

The Our Voice Management Committee (from left to right) Kate Linke, Fazilla Amide, Carol Mustafa and Liz Willis

wire and has an indoor Autism Friendly Fun area where arts and crafts activities take place. Open The Enfield Branch of The playground. The to siblings as well, the next National Autistic Society is playground sessions are a voluntary group set up by includes 10am – 1pm parents to support and swings, rope on Sunday 29th represent local people slides, September and living with Autism and climbing Sunday 20th Aspergers, their families apparatus October 2013. and carers. They organise and a zip There’s no need wheelchair friendly and is lots of great Autism-friendly to book but the experienced in dealing with activities for children and suggested £2 children on the autistic young people including the donation is spectrum who are popular play sessions at the always encouraged to have fun Florence Hayes adventure welcome. making tasty treats while Other activities include trips enjoying a wonderful to The Kids’ Cookery sensory experience. If you’d School in Acton. So if you like more information have a budding chef or about the activities, contact even the next Jamie Oliver Sophie Castell on 07903 in the family why not give it 420016 or email a whirl. The school is fully [email protected].

CarolContact: Mustafa Fazilla or • Kate Telephone: • Telephone: 07503 07516 161248 662315 • •Email Ema cail:[email protected] [email protected] Please passPlease this pass newsletter this newsletter on to otherson to others - parents – parents and serviceand service providers providers - who who mightmight find itit useful.useful. You You can can contact contact us for us additional for additional copies copiesby email by or email phone. or phone. Our Voice SPREADS the word In June Our Voice held one of its support needed for short breaks. We’ll opportunities to come along and popular networking meetings at also have the opportunity to manage network and find out what’s going Bowes Primary School in New our own personal budgets if we want on in an informal manner. Often the Southgate. It was well attended and to, as people do in Adult Services. best sources of support are from Janet Leach, Head of Joint Services other parents who are going So for example, if your child currently and Sue Roberts, Cheviots Centre through similar challenges, so we attends Raglan during the holidays Manager came along to update believe these meetings are useful in and has support to attend an parents on some of the changes helping to deal with the emotional afterschool club once a week in term that are happening and to listen to ups and downs we experience time, if eligible going forward, a parents’ views. through life! personal grant will allow you to We discussed the key change to the purchase your own support for your Come along to our next Network “Statement” and how over the next child and you might decide Meeting on 7th November 2013 year or two, the Educational Statement to spend it on 1-1 If you’re not from 9:30-11am at West Lea will change into the Single Plan, which swimming lessons already signed up to School, Haselbury Road, will not only cover Education, but also instead of going to our email database, Edmonton, London N9 9TU. Health and Social Care. So all Raglan during the please log onto Space is limited so please provision that your child needs will be holiday. www.ourvoiceenfield.org.uk book a place by emailing so you can receive further covered including therapies such as Our families tell us [email protected] by the information we have, in speech and language as well as any they value these 18th October. a timely, effective way. Did you know? Enfield Council The Family Fund is the largest provider of grants for low-income Website, Update…. families with disabled or seriously ill Following our update in the Spring, Our children aged 17 and under. The Voice has continued to work with the charity helps ease the additional Local Authority regarding content. We pressures families face and can help put it to them that parents would find it helpful if they provided a “one stop shop” of information and that all the departments should work together so there’s a consistent look and feel. They were in complete agreement and have now formed a joined up working party, including Education, Health, and Social Care, as well as Youth and members of Our Voice, as parents. There will be a Question & Answer section to make it easy to access the information we need quickly. Joint Services have earmarked some money from their Capital Fund to develop the site over the next couple of months, so fund essential items like washing toys and short breaks. For more we’re all very excited! machines, fridges, bed rails and information or an application form As the site develops, volunteers will be clothing but also considers grants for call 0845 130 4542 or visit needed to review draft versions, so if you computers for school work, sensory www.familyfund.org are interested in participating, let us know.

Tolmers Activity Centre, the South of France, friend Atlanta as she is very kind and there’s a Drama and Dreams Egypt, the middle of the sea and a castle. In my boy call Harrison who is very happy – we like Bizzibops is an all inclusive dance French adventure I went to a café with all my playing on our adventures together.’ and creative arts theatre group led by Bizzibops friends. I like to do things with my For further information please email professional artists in a fun and [email protected] welcoming atmosphere for young people aged 8 years and over. Here, Nicholas, aged 12 years (pictured 2nd left in the red t-shirt) tells us why he enjoys it ‘I like Bizzibops because we do pretend adventures where dreams can come true and this makes me feel happy’ says Nicholas. ‘My best adventures have been to Hollywood,

Page 2 www.ourvoiceenfield.org.uk Sibling Carer Support SIBLINGS The Enfield Carer’s Centre is now offering young carers help SUPPORT and support. If It can be difficult juggling all the someone under 18 has care priorities we have, especially when responsibilities at home they may we have more than one child. It’s need extra support to stop them hard not to give most of the feeling isolated or stressed from the attention to a child with additional extra pressures of school or college, needs and not our other children. as well as their carer role. The new More often than not we also expect service offers in-school assemblies, our other children to be workshops, buddy support and a understanding, behave as mature network for young carers to give adults and often to help out, when them confidence, break down the actually they’re still just children taboos of disability and tackle trying to find their own way in the Noah (left) with Ollie (right) on his birthday bullying. Four schools including world….Life is never easy but luckily Sussex Primary School, George Spicer there are sibling support groups and and he makes me laugh when he is Primary School, Edmonton County organisations and we’ve included a happy and jumps up and down School and Oasis Academy are short extract from a child whose smiling and giggling. He makes my planned to be taking part in the pilot brother has Autism explaining how mum happy as he loves giving kisses scheme which will be rolled out he feels. to people. He sometimes gets really across the borough if successful. angry and it is hard to know why. I try Tara Bennett, The Young Carers Having a brother with to help him, but I know that when Project Worker has more information he’s cross I get away from him in autism or if you’d like to get involved with case he tries to grab me. It makes me ‘My name is Ollie, I’m nearly 7 years the project call 020 8366 3677; visit sad when this happens and I try to old and I have a brother and a sister. www.enfieldcarers.org or email remember that it is not his fault.’ My older brother, Noah, has autism - [email protected] he can’t talk so it’s very hard to know how much he understands. He needs New siblings club help doing things like putting on his From September onwards, Dazu will clothes, eating, brushing his teeth be running a siblings and young and many, many other things. carers group on Friday evenings from I feel sorry for Noah - I would hate it 6.30 -7.30pm at The Alan Pullinger if I could not talk to my mum and Centre, 1 John Bradshaw Road, dad, my sister and friends. Recently it Southgate N14 6BT. The group will was Noah’s 13th birthday, so I took be in the form of fun drama the day off school and spent the day workshops and be a consultation, with my brother at his school. I empowerment and engagement asked my mum lots about how Noah group to look at issues such as learns at school and his teacher was personal safety, safeguarding, mental really kind and showed me how she well being and health related issues. helps him to do his lessons. Ollie meets Noah’s teacher to find out what he A Dazu counsellor will be on hand so I love Noah a lot. He is really cheeky does in class anyone wishing to have a chat or make an appointment with her will be able to do so. Read all about it If your children want support in Any one of secondary school age is dealing with their brothers or sisters welcome to stay for the youth club with additional needs we recommend that follows on from 7.30pm -10pm these books but younger siblings must be My Friend has Down Syndrome, collected at 7.30pm. Parents wanting by Amanda Doering-Tourville, £5.99, more information can contact Dazu published by Picture Window Books on 020 8373 2718 or email (ISBN: 9781404861107) is aimed at [email protected] 5-8 year olds. My brother is different, by Louise Gorrod, £4.99, published by National Autistic Society (ISBN: 9781899280506). A book for young children who have a brother or sister with severe to moderate Autism (not high functioning) www.ourvoiceenfield.org.uk Page 3 Education Education Q&A Dr Ahmad information on the Statementing A Speech and language therapy is Ramjhun, Head process go to www.enfield.gov.uk/ normally provided by a health of Special Needs info/200012/childrenwithdisabilities authority and the SEN department and Inclusion at andspecialeducationalneeds works closely with them. It is also the London Q How do I get transport for my important that parents support their Borough of daughter to get to her special child’s speech and language Enfield gives his school? development at home and the expert advice on therapist can give advice on how to QA You’ll need to apply& to the Local A Special do this. If however, you feel your Authority and explain the reasons child’s needs are not being met talk Educational why she needs it. It’s not an to the school and they can seek Needs automatic entitlement and there are a advice from the Speech and number of factors that will determine Language Therapy Service if whether she will receive help. One of Q What are Special Educational necessary. Needs? the criteria is distance, and in terms of this the school needs to be more Q My child’s school say they are A Children have Special Education close to excluding him because of Needs (S.E.N) if they have a learning than two miles away for under eight year olds and more than three miles his challenging behaviour. Who difficulty which is significantly greater can I talk to? than the majority of their peers and if away for over eights. For further they require extra help in addition to information go to www.enfield.gov.uk/ A Always speak to the school first what’s available in school. Some info/40/education-special_educational_ and then speak to the Local Authority children may have Special needstransport/1107/special- SEN department. You can also seek Educational Needs for a relatively educational-needs-sen-transport advice from Enfield Parent Partnership short time while others will have them Service (EPPS) who are independent throughout their time at school. of the local Authority and schools and whose role it is to support parents in Q I think my son needs extra help school. It is a statutory service and in his reception class. How can I every authority in England has one to organise it? offer free, impartial, confidential A Talk to The Special Needs Co- advice and information about your ordinator (SENCO) at your school. rights and the responsibilities for the It’s normally the SENCO who co- education of your child. You can ordinates additional support for contact EPPS on 020 8373 2700. children with SEN and liaises with Or for more info contact the parents and teachers to overcome Behavioural Support Service who problems. Share with them any work with families at home and reports you may have from school and deal with any children professionals already involved – such who have been excluded by as the Child Development Team, Q My son has a Statement for 15 mainstream schools, Health Visitors and Educational hours support but I don’t think it’s www.enfield.gov.uk/info/17/schools- Psychologists so they can be made enough. How can I increase it? general-information/1179/education- welfare-service/6 aware of the child’s needs. A Talk to the school and give your Q I think my child might need a reasons why you think it’s not So in summary Statement of Educational Needs. enough. The school will be able to What should I do? explain how the money allocated to The first port of call is always the A First talk to the SENCO at your your son is being spent to meet his school. If the problem isn’t resolved school and discuss your child’s needs needs. In most circumstances, this involve the Local Authority SEN thoroughly. A Statement is relatively level of support should be sufficient, department. Parents, the school and as the school will also be contributing rare as most needs can be met SEN should all work together. If the other support from their own without one as all Local Authorities issues remain unresolved contact resources. However, if for some have to delegate funds to the school Enfield Parent Partnership Service reason this is not the case, you for the child. The school should then who are independent advisers who should discuss further with the school support and mediate on behalf of use this money to meet your child’s and if need be approach the Local parents to ensure that the school is needs. If you believe your child needs Authority more support and you want to go meeting the child’s need and that down the Statement route, ask for a Q I think my child needs more parents’ expectations are Statutory assessment. Your child’s speech and language therapy at reasonable. Contact Enfield Parent needs are then assessed and school but the school say they Partnership Service on 020 8373 depending on these needs, this may can’t get the additional support. 2700 or visit or may not lead to them being issued Who is responsible for speech and www.enfieldparents.org.uk for more with a Statement. For further language therapy? information.

Page 4 www.ourvoiceenfield.org.uk about. Outside of school, Bruno had Whizz-Kidz to use a manual wheelchair which Educational Workshops Whizz-Kidz is a charity which offers was so heavy he couldn’t self-propel. Enfield Parent Partnership Service is help for children with mobility As a result he constantly required expanding its services to parents. As problems and is particularly someone to well as providing free, impartial useful for young wheelchair push him, which help, advice and support for parents users who want their freedom was very who have children with Special and independence to go out frustrating, Educational Needs and/or a with friends and family. especially when disability, we offer workshops on a he wanted to range of topics including: The Charity offers funding to socialise with his help buy powered wheelchairs, *How to choose a secondary school friends. Bruno for my child [aimed at Year 5 parents] manual wheelchairs or says “Whizz-Kidz adapted trikes and bikes - *How to prepare my child for secondary gave me a school [aimed at Year 6 parents] usually in cases where the lightweight *How to represent myself effectively local NHS trusts are not manual prepared to pay for these in meetings with the school and wheelchair and other professionals items - but demand is high now I am able to and Whizz-Kidz primarily *Statutory assessment and the lead the life of a Statementing process supports those from low normal kid and go *How I can help my child to out with my friends manage his/her behaviour around town and *Preparing for the new Education be independent and Health Care Plan from my family. The wheelchair is wonderful to use as it The workshops take place at The Ark, responds to my hands well and 500 Montagu Rd, Edmonton N9 0UR moves and stops easily. I no on Thursday afternoons between longer feel isolated and 12.30pm – 2.30pm and need six frustrated and can enjoy my participants to make a course viable. teenage years.” Alternatively, if there are a lot of parents from one school we can The charity also offers deliver the workshop at the school. wheelchair skills training sessions to teach young users how to Please register your interest in the income families who use their wheelchair safely through workshops by emailing would otherwise be unable to access fun games, one to one activities and [email protected]. such equipment. Bruno is 16 and group activities and runs a large uk or call 020 8373 2700 by Friday lives at home with his Mum. Bruno number of social clubs - primarily for 4th October 2013. We’ll put has a neurological condition which wheelchair users. For more together a workshop timetable and for him means he is unable to walk information call 0845 052 1231 or get back in touch with interested and requires a wheelchair to get visit www.whizz-kidz.org.uk parents. Disability Awareness Workshops at Walker Primary with Our Voice

Our Disability Awareness provoking workshops were Cruise, Hollywood actor ‘Today I have learnt that anyone workshops are up and run in our Key Stage 2 (dyslexia). The classes can do whatever they want no- running in primary schools classes between February learnt that a jaw-dropping matter what their disability is.’ and Our Voice want to and April 2013. Kate and 650 million people in the ‘I will never make fun of thank the staff and pupils Fazilla gave inspiring world live with disability. someone with a disability and I will at Walker Primary School, examples from their own ‘The tone was informative, never ignore them’ Southgate for being the first experiences of raising boys positive and optimistic, particularly in the sense to participate. We loved with autism. The ‘I will never tease people that the Walker pupils were running the sessions – once importance of being aware because of their limits to what they inspired to make a a week over an 8 week of disability and how we can do – caused by their disability. difference in our world’ period – and felt very sad can all respond in order to Also, I will never stare or flinch at says Sal. After each session at the last workshop. enrich the lives of others the way they look, function and every child completed a Content was specifically was outlined throughout by communicate.’ personal pledge where they written to be engaging and activities’. The activities involved groups sharing expressed what they had Are you interested in Our fun, so that children had learnt and would use in the no time to become fidgety ideas of what disability Voice running workshops at means, considering the future. Here are some of ? and restless. your primary school ‘hidden’ disabilities of their comments: Contact Kate on 07921 Mr Sal, the SENCO at famous people such as ‘I will always try to respect 360636 or Walker Primary Scholl says Satoshi Tajiri, creator of people with disabilities and help E: [email protected] ‘The lively and thought- Pokemon (autism) or Tom them when they are struggling’ to discuss further www.ourvoiceenfield.org.uk Page 5 News from the Joint Service What’s happening in the borough? Janet Leach is Head of the Joint Service for Disabled Children, which co- ordinates social care, education, health services and voluntary agencies in Enfield. She gives an update on new developments and activities.

Progress on our Capital Investment For some years now Enfield Joint Service for Disabled Following further consultation with parents and young Children has received capital funding from Central people we have now allocated our final grant and our Government to support the delivery of short breaks. We projects include:- have used the money to:-

• Contribution to establish a cycle path in • Purchase two minibuses which are Durants Park for our ‘Wheels for All’ scheme. available for use by partner organisations based at Waverley and Oaktree Schools. • Fit an accessible changing bench, H frame • Purchase specialist bikes for our ‘Wheels hoist and toilet at the Dugdale Centre in Enfield Town. for All’ scheme. • Support the refurbishment of Cheviots. • Upgrade Oaktree School playground to support short breaks delivery. • Update resources at Cheviots including soft play and music garden. • Provide a specialist tricycle for Fleecefield School. • Purchase camping equipment that is based at Oaktree School and available to loan to • Provide floor mats for Disability Martial Arts. families and partner organisations. • Specialist resources for Enfield Sleep Service to loan to families. • Provide an aeroplane travel harnesses to lend to families. • Contribution to West Lea School building programme. • Provide a ball pool at The Ark. • Adding an adjustable changing bench with • Providing equipment for Enfield’s Transition Clubs that support young people moving to H frame hoist to leisure facilities in Enfield. Adult’s Services. Albany Leisure Centre is complete and Southgate Leisure Centre is nearing • Purchase of several acoustic panels for completion. You will need to bring your Durants School gym and a contribution to own sling. their trampoline to support short breaks held there.

Transition events So far this year we have organised seven information events for parents or carers of disabled young people in transition. The events focused on independent living, employment, personalisation and health and provided parents or with carers an opportunity to learn more about the services and support available for disabled young people and their families as they reach adulthood. Based on the feedback from parents provisions in Enfield, which was a calendar for 2013/2014 so look out and carers, we’ve introduced a new huge success. We’re currently working for it in the next edition of the event about post 16 year education on the transition information events newsletter.

Page 6 www.ourvoiceenfield.org.uk Developing Play and Youth Services. paid into a separate bank for children and young However some children and account so families can buy people, which give them a services families may also need activities or services of their chance to enjoy themselves together with targeted and specialist choosing for their children. with friends, for parents to Parents services. These are services The Government wants all have a break or provide an for children and young Local Authorities to develop opportunity for families to We’ve been busy meeting people that go beyond personalised services and this enjoy themselves together. parents to talk about how what’s on offer from summer more families than We asked you to fill in a we ensure we offer families universal services such as in previous years chose to questionnaire online or to a fair and reasonable level extra support during the early have a direct payment. Over meet with one of us at of support. Our Voice has years from the Pre-School the next few months we will specially arranged sessions been helping us with this Support Service or having be working with Our Voice to discuss our proposals and and it’s particularly specific support at inclusive or and local providers to to fill in the questionnaire important as we’re facing specialist play schemes. develop more choices for supported by one of our challenging economic times parents and young people. We’ve also been talking to team. The feedback is and need to consider that parents about We want to spend money being collated and we’ll let the numbers of disabled ‘personalisation’. This means wisely and use available families know the outcome. children living in Enfield is supporting families to have funding to support our most We’ll work with Our Voice to increasing. more choice and control over vulnerable children and plan how we implement the We aim to meet the needs of how they receive services. families. So we specifically changes and to ensure that disabled children through Families are given an agreed asked for your views about those families in the greatest inclusive universal services amount of money – a grant - how we deliver short breaks. need receive the highest including Children’s Centres, by direct payment which is These include fun activities level of support. The Children and Parent’s Conference Families learned how parents and professionals have developed a ‘local Families Bill In June, our 3rd Enfield Parents offer’ for children aged 0 - 6 years conference focussed on Autism and with a diagnosis of autism including This Bill was introduced to was a great opportunity for families the introduction of a new service - Parliament in February 2013 and is and professionals to network and Making a Positive Start for Autism part of the government’s learn from each other. (MAPS). The service offers parents commitment to improve service for Families heard from local and and carers families five sessions to vulnerable children. national speakers and from other meet professionals and to find out It includes clauses on special parents of children with autism. We more about autism, what support is educational needs (SEN) which aim to launched our film – ‘Living with available in Enfield and some reform the SEN system. The Joint Autism: Through the Eyes of our practical tips to support behaviour, Service for Disabled Children and Enfield Children and their Families’. communication and interaction. SEN Services are working together with Health and Voluntary Sector Services and with parents to provide Biking fun feedback to Government on the It has been smiles and fun all the way thanks to the Enfield Wheels for All proposals and to consider how we cycle scheme. The specially adapted bikes have proved a great success and will implement the changes in Enfield. hugely popular at the play schemes, by Waverley School and at the Family The Young Person’s Guide to the activity sessions. ‘We will be Children and Families Bill gives a purchasing some more bikes simplified, straightforward summary with the capital funding grant of the Bill and can be downloaded at and have taken note of https://www.gov.uk/government/publi requests that we buy some cations/the-young-persons-guide-to- bikes for younger children.’ the-children-and-families-bill says Janet Leach, Head of Joint Services. Work on the cycle path in Durants Park has begun; this is being funded by the capital grant and the resident’s funds in Enfield Highway and Ponders End wards. The path will lead from The Ride opposite Waverley School, to the play area in the park. We also need bikes for brothers and sisters and mums and dads so are happy to collect any bikes you no longer need. Call 0208 363 4047 for more information. www.ourvoiceenfield.org.uk Page 7 including shops and libraries, safeguarding and the youth service become part of CHiPS and display sites, on the children’s safeguarding Stay safe the welcoming blue logo above in board website, the YEP website and their premises means people who ECYPS website. then get lost, intimidated or If in the meantime, parents or young threatened, feel worried about people would like further information, something in the street or who are they can contact Claire at ECYPS on victims of crime, can go into any 020 8373 2710. CHiPS point and ask for help. The scheme was started for young people who felt vulnerable as they were making their way across the borough and in March of this year it was extended to vulnerable adults. There are around 200 points across the borough and in readiness for the Enfield’s award winning Community Autumn term; a new updated list of Help Point Scheme (CHiPS) is members will be issued. We’re also particularly useful for disabled teens developing an App that will be ready and young adults who may be to download later this Autumn. travelling independently for the first time without relying on specialist Information on the help points across transport services. The scheme, the borough will be available on the whereby local business premises, council website – via adult Happy retirement Working together We were delighted to say thank you Equals Employment is a and celebrate the wonderful team of dedicated staff contribution of Elizabeth Glencross trained to help adults with and Sheila White, who have Learning Disabilities, with voluntarily run the Enfield Toy Library an IQ below 70, who live in for over 30 years. Elizabeth brought Enfield and want to get a the Toy Library to Cheviots in the job. It helps with CV’s and 1980’s and it was lovely to see job applications, training parents who have attended over the and gives support to years joining in the celebrations. The employers to help some one Toy Library provides the opportunity with learning disabilities in The Future Clean, environmentally friendly car for children to play and have fun the workplace. Its leaflet with more wash, based in Palace Gardens Multi-storey together and for parents to meet and information can be found at Car Park, Enfield Town gives people with share issues in a safe and supportive http://www.enfield.gov.uk/downloads disabilities the chance to gain work experience environment. All our best wishes go /file/4909/employment-service- and training. to Elizabeth and Sheila. Samantha equals Storey, the Specialist children centre and businesses that can offer paid And Equals Employment is always outreach worker, will now be employment to people with learning interested in hearing from employers coordinating the session and is disabilities. developing a lending service for toys and specialist equipment. For more Sleep Project information about the Toy Library contact Samantha at Cheviots on 020 Over the past few months we have 8363 4047. been running a further ‘pilot’ Sleep Service. From talking to parents we know that many families are struggling to settle their children at night and this can be exhausting for everybody. We funded Fazilla Amide, Co-Chair of Our Voice and professionals from the Joint Service and Waverley School to train as Look out for the next Sleep Practitioners. During this pilot the team learned issue of Breakaway, Enfield’s how to make the best use of their time and resources, what works best for families and how to help them to Short Breaks Magazine for develop confidence in their own abilities. The Sleep disabled children and young Practitioners have now prepared a report looking at people and their families – it’s the outcomes of the programme and together we are out later this Autumn. considering how we may continue to develop and provide this service. Watch out for more updates!

Page 8 www.ourvoiceenfield.org.uk session and bookings can be made Communication skills by calling Cheviots on 020 8366 CAPAG Makaton is a language programme 4203. By the end of the session As you are aware, the Children and that uses signs, symbols and speech parents will have covered 30 signs Parents Advisory Group (CAPAG) to boost a child’s communication and and symbols and been given basic were unable to continue and ceased confidence. Two Makaton short taster information on the Makaton the clubs they were running in July. sessions offering parents an programme. This left parents and children introduction in to Makaton signs extremely concerned about what symbols are would happen over the summer being held on holidays and what would replace the Tuesday 24th on-going after-school clubs. September, 6.30pm-8.30pm It was a stressful time for all…… but and Tuesday 1st The Joint Services team worked October 10am- tirelessly to put emergency plans into 12pm, at Cheviots action and ensure that new providers Children’s Centre, were able to support and give the ex- 31 Cheviot Close, CAPAG families an alternative. They Enfield, EN1 3UZ. were also able to offer families a There are 20 “grant” to pay for their own activities places for each if they preferred. ©The Makaton Charity We’re writing this before the summer holidays begin (because of editorial timings) so will not know how successful everyone’s endeavours have been to ensure our children get the breaks and clubs they need. However, we would like to take this opportunity to thank everyone who has worked together to try to support our families; the individual leaders at CAPAG who have tried to keep things going and the Joint Services team for putting in many long hours to help parents/carers work through alternative breaks and partner with the new providers who have come on board at short notice. If your child attended an After-School club with CAPAG, you should have heard by now as to the new arrangements. However, if you are still If you’ve had a really good experience with a new provider over the unclear or are waiting to hear, please summer let us know and equally, if things did not go so well, tell us so that contact Cheviots on 020 8363 4047. we can try to help improve things. Contact [email protected]

attended and each group lasted for access services than those who are Community news over 2 hours. As well as identifying native English speaking. It was also Our Voice has recently run two focus levels of help and provision received, apparent that cultural issues such as groups – one with the Turkish Our Voice wanted to identify any key wanting to keep things within the community and one with the cultural themes. immediate family, can influence the Somalian community – to try to Once initial introductions and way that these communities engage understand more about the level of objectives for the groups had been with anyone outside of their access that families from these covered, lots of talking followed! immediate family to access support. communities have to services for their Access to health, education and So Our Voice is happy to report that disabled children, and to identify how social services were all covered. we will be publishing a news sheet – great an obstacle language barriers Experiences both good and bad, trialling it initially in Turkish - that are for accessing these services. worries and frustrations were aired. summarises the content of this The Turkish group was held at West Following this, the information was newsletter to be sent to all Turkish Lea School and the Somalian group collated and is being reported back families that we have contact details at The Ark in Edmonton and to the Joint Service. From both groups for. We’ll update you of any further translators were present on both the overwhelming finding was these developments that take place as a occasions. In total 14 families communities find it more difficult to consequence of these focus groups. www.ourvoiceenfield.org.uk Page 9 HEALTH FOCUS Clinical Commissioning Working together Groups: the new local Our Voice is now connected with leaders of the NHS Enfield’s Clinical Commissioning Group, the body responsible for As you’re all aware the NHS health making decisions for Health in system has been re-organised and Enfield. We believe it’s vital to ensure the biggest changes are about who this important group understand the makes decisions and who spends the challenges our families face, so they Patient Participation money. A new body NHS Enfield can make informed decisions. We’ll Representatives Clinical Commissioning Group be partnering with the Head of Joint (CCG) is now responsible for Services for Disabled Children and The Enfield CCG is also very keen to commissioning local health services, the Head of Children’s have patients participate and provide replacing Enfield Primary Care Trust. Commissioning and we will present feedback to their GP who, in turn, can For more information on the NHS to them this Autumn, our families’ feed this in, Borough wide and then changes go to needs. nationally. Each GP practice should www.gov.uk/government/publications have, or will be setting up a Patient /the-health-and-care-system- Participation Group (PPG) so if you’re explained Booklets for GPs interested in becoming a representative speak to your local Practice. If you The re-organisation means that GPs We’ve been liaising with Contact a need further advice or guidance about now have more control and Family who have produced a couple this or more detailed information about influence over their budgets and the of helpful brochures for GPs to help the role, please contact Laura Andrews, services we get, so in theory your encourage a disability/autism friendly Patient and Public Engagement doctor will have the power to surgery environment and process, Manager, NHS Enfield Clinical choose the best treatment for your providing information about families Commissioning Group (CCG) on condition. Your GP practice has with children and young people with 0203 688 2840 or joined NHS Enfield CCG as a additional needs, as well as detailing [email protected] or member practice and has signed many of the services like Speech and log on to www.enfieldccg.nhs.uk NHS Enfield CCG’s constitution, for Language, Physiotherapy and OT more information go to (Occupational Therapy) that many of www.enfieldccg.nhs.uk/Downloads/Po our children and young people need Money, Money, Money licies/Enfield%20CCG%20Constitutio to access. The CCG have been given – how we all can help n%2031.03.2013.pdf hard copies and they’ve been issued to all GP surgeries in Enfield. Budgets are shrinking and services are under pressure. The NHS and many of A simple idea from the other services are free for us/our children and we all want this to one of the booklets: continue. However, you will know that Some GP practices allow children, this doesn’t mean providing services, who struggle to wait in the surgery, to like GPs, Speech and Language, Short wait outside or in the family car and Breaks etc are actually free! It costs us the receptionist sends a text message all a huge amount of money via our when the doctor is ready to see the taxes to support these great services. child. Simple! (so wouldn’t it make However, money is often wasted life so much easier for all, if all without realising it. Hundreds of surgeries could adopt this approach thousands of pounds go down the where appropriate?) drain through missed appointments… just by not turning up or letting anyone If you’re interested in knowing more know. It also means we have to wait about these booklets or want to longer to be seen. download one, visit www.cafamily.org.uk/what-we- But we can all do our bit to help, so… do/parent-carer- *As many of us have so many appointments ensure participation/improving-health- you know exactly what the appointment is for and services that you need it - don’t hold it “just in case” Healthwatch Enfield is the new Feel free to discuss this with your GP *Ensure you’re agreeing to a time and date you can independent local consumer on your next visit, if relevant. The genuinely make. champion for health and social care more we talk about this and *Put all appointments in your diary, phone or in the borough. For details of how reference these materials, the more calendar and review weekly and monthly so you you can have your say on local awareness we can create…of course know what’s coming up. health and social care services please please be helpful and polite as this *Sign up to text message reminders. contact Healthwatch Enfield on 020 approach will be more successful *If you can’t attend remember to cancel the 8379 8119 than showing any frustrations! appointment so it can be given to someone else.

Page 10 www.ourvoiceenfield.org.uk Gateway Seekers Best Practice Corner Swimming Club Traditional Fish and I quickly scanned the restaurant to see This fun, family swimming session if there was a table by the window, takes place every two weeks on Chips where Kareem could watch the cars Sundays from 2pm - 4pm at Albany Pool, 505 Hertford Road, Enfield EN3 Our award for this newsletter go by, but they were all taken. 5XH. The session is open to adults goes to [email protected] I did spy an unused area on the and children with learning difficulties Rd, 78 – 82 London Rd, Enfield opposite side of the entrance, away (including autism) and members of EN2 6HU, 020 8364 4441, from everyone and asked if I could their family and the pools are closed www.fishandchipsat.co.uk leave Kareem there for a while – to the general public, giving families where he could play with his cars, look exclusive use for two wonderful out of the window and calm down. hours!! The session is run and The staff didn’t bat an eyelid, and managed by Anne & Roger were friendly and obliging and even Ploughman, who can be contacted kept an eye on him for me, as we sat on 020 8360 9453 and a fee of £1 You can imagine my stress when my down in another area. Eventually per person is collected at the Uncle from Mauritius phoned us one Kareem settled and I encouraged him poolside. Saturday saying he was going to visit to come and sit with us which he did, As well as the fun swimming session, us en route from a conference in calmly and quietly…phew!! Anne and Roger, also run a Dublin. Not to worry, we knew several structured learn to swim programme places to eat where Kareem, my son at Albany pool. Contact Anne or with ASD and global development Roger for dates and times. delay, was familiar with so opted for dinner at one of these. Imagine my Getting the Balance astonishment when my Uncle arrived and announced he fancied fish and Right – How to get chips! what you need Luckily I’d seen a flyer for workshops Fish&Chips@ in London Rd, which said We were served excellent food, by Do you often think… How can I fit it was an award winner, so I took a risk friendly staff and had a great dining everything in? How can I make more and off we went, including Kareem experience. We’d definitely go there time for all my children? How do I who had never been there before. again as kids can eat free on a get the services my child needs? How As expected, Kareem started to get Sunday or Monday (Terms and do I get Service professionals to ? stressed, jumped up and down and conditions apply and call ahead to understand what my family needs check the offer is still current) and the flapped and buzzed as we were trying Well come along to this set of four restaurant donate £1 to the NSPCC to get him to the table, so in order to interactive workshops designed to for every kids’ meal sold. avoid a complete “meltdown,” help answer and deal with those very questions and thoughts. The sessions, run by Fazilla Amide, HR and Cycling for Charity Training Consultant and Enfield parent of a child with additional We’d like to say “Congratulations!” to Sarah needs, aim to understand why you McClean from the Council, (who as part of feel challenged by everything you the Joint Service team, has been working with have to deal with, how to ask for and us on the developing the website) for ideally get what you need and how to completing the 3 Cities Cycle feel more positive. Surrounded by a Challenge in support of supportive network of parents who The Chickenshed Theatre. also understand how you really feel She spent 4 days in the and what your challenges are, the saddle, cycling 300 miles workshops are practical and thought through London, provoking. Amsterdam and Brussels. Whilst the training was The series of four workshops will be tough and she had to put held at Cheviots Children Centre, 31 in a lot of hard hours, it Cheviot's Close, Enfield, EN1 on was all worth it. She is Friday mornings from 10am – looking to raise around 12noon on 8th, 15th, 22nd and 29th £3,000 for the Chickenshed Theatre so if November 2013. Spaces are limited Our Voice is looking for stories from and the sessions are popular so book anyone would like to contribute to this families and friends who have been worthy cause, post her event, visit her just by 18th October 2013 by phoning fundraising and raising money for for giving page Megan Steven on 0208 363 4047 or charity. Please email us your stories and www.justgiving.com/Sarah-Mclean1 email her at pictures to [email protected] [email protected] www.ourvoiceenfield.org.uk Page 11 Christmas Shows Cinema C ar d A visit to one of the boroughs theatres can be can be a wonderful but also a stressful, confusing experience for anxious children and their parents so the Chickenshed Theatre and the Millfield Theatre are putting on these performances. added extra, free Touch Tours are The Night Before available an hour before the Audio Described performances on 20th, Christmas 22nd and 29th December which give The Chickenshed Theatre’s Christmas the audience a chance to explore the The Cinema Exhibitors’ Association show is fun for all the family and sign set, costumes and props and meet (CEA) Card will appeal to film lovers language is integrated into every the cast. These tours will familiarise young and old. The card allows performance. The theatre also offers children with the production and people with disabilities to get a free some captioned performances, make them feel less anxious but need ticket for a person accompanying them similar to television subtitling, for the to be booked in advance. to the cinema. The card costs £5.50, is deaf and hard of hearing. Audio valid for a year and is accepted by all described performances that tell The show runs from 27th November major cinema operators and many visually impaired theatre goers what’s 2013 – 11th January 2014, call 020 smaller cinema companies. Most happening on stage during the parts 8292 9222 or visit cinemas hold application forms at the of the performance when there’s no www.chickenshed.org.uk for more box office or download one from the dialogue are also available. As an information. website www.ceacard.co.uk and you’ll need to supply a passport size photograph with your application to go on the card. Also you might like to know that both Cineworld in Enfield and Odeon Lee Valley offer Autism–Friendly children’s cinema screenings where films are screened with the lights on, the volume reduced and people are free to move around the cinema. Contact a family The contact a family free phone helpline offers help and support to the families of disabled children. The confidential service can be contacted on 0808 808 3555 or at Dick Whittington for those who need to leave and re- [email protected]. The enter the auditorium during the service is staffed by experience The Millfield Theatre is having a production. Call 020 8807 6680 or advisers and is intended as a one- relaxed performance of Dick visit www.millfieldtheatre.co.uk stop-shop for parents and family Whittington on Thursday 2nd January members. More information is 2014, at 5pm. Relaxed performances available at cafamily.org.uk have a less formal, more supportive atmosphere and are specifically designed to welcome people with an Autistic Spectrum Condition, learning disability or sensory and communication disorders into the ourvoiceenfield.org.uk theatre. To help reduce anxiety levels, lighting and special effects will be adapted, such as removing strobes and flashing lights and reducing loud noises and parts of the Millfield Theatre foyer will be used as a quiet space to relax

Our Voice newsletter is published to keep you informed about our work and the experiences of families in Enfield. The views expressed by contributors are not always those of Our Voice. © Our Voice, September 2013