Newsletter For parents and carers of children and young people with disabilities and/or special educational needs in

Published by the Sheffield Parent Carer Forum Spring 2014 Issue 9 FREE!

Services hit by New specialist budget cuts nurses at Ryegate Around £1.5m to be Supporting children saved from disabled with autism and learning children’s services disabilities Page 9 Page 14 Travel insurance Are you ready for Don’t take your child the SEN reforms? on holiday until you’ve Find out how the system is read this! changing from September Page 21 Page 18

www.sheffieldparentcarerforum.org.uk 1 About us The Sheffield Parent Carer Welcome to our Spring Newsletter! Forum is an independent group of parents and carers of children with disabilities and/or special educational needs.

Our aim is to make sure the needs of our children are met. We understand the challenges you face on a day-to-day basis, because we are parents and carers too. We organise regular events where parents can meet each other. We can tell you about the most up-to-date sources of information for your children. We are here to give parent carers a voice. A very warm welcome to our spring travel passes; the importance of travel By joining the Parent Carer Forum, we Proudly sponsored by Irwin Mitchell Solicitors. newsletter! As we go to print, we are insurance if your child falls ill on holiday; and can work together to improve services for Legal experts in services for you and your family our children. including challenging health and social care organising our “Countdown to the SEN “Ask The Lawyer” features the legal position Membership is free, packages, special educational needs, court of Reforms” information day at St Mary’s on regarding post-16 specialist provision. the 14th March. This event is to provide join us today! protection issues and personal injury claims. If you have a child or young person aged information to parent carers about the 0-25 with a disability or additional needs, Fill in the membership form at the back www.irwinmitchell.com biggest overhaul in 30 years of the special we need to hear from you! We know that of this newsletter to join. educational needs system, taking place having a child or young adult with additional Get in touch from September 2014. There is still a great Your advert here? needs can be difficult, but we want to ‘take By Post: deal about the reforms to be confirmed; the pulse’ of parent carers in the City in our the pathfinders in other local authority St Mary’s Community Centre Would you like to advertise your State of Sheffield survey. This will be our areas are reporting many challenges, not products or services in our next most comprehensive survey yet. Details on least the timescales within which all these Sheffield newsletter? For a small fee, you could how to take part are on page 5, and we will changes are supposed to be happening. S2 4QZ reach around 4,000 families in Sheffield. use the results to lobby for better services By phone: 0300 321 4721 •Our Full rates page are: £100 But the reforms will happen and parent and to protect existing ones. Whilst we try By e-mail: • ½ page £50 carers need to be aware of the changes to establish the scale and impact of the which will affect ALL youngsters with new budget cuts on our local services, your [email protected] • ¼ page £25 Website: additional needs. The “local offer” should opinions are needed more than ever! 0300 321 4721 provide clear information about what Although we may not be able to predict the www.sheffieldparentcarerforum.org.uk Please call us on services are available in the area and how Drop-in: future for our children and we know there to discuss your requirements. to access them. Certainly that should be are many challenges ahead, what we do Currently by appointment only; very beneficial to parent carers and there know for sure is that as parent carers we please contact us to arrange a time. is a great deal of work going on with the are all stronger together - we support, learn reforms – co-production is a key theme - Printed by Brightstar Creative Ltd. Views expressed in this from and guide each other. We will shortly Find us on newsletter do not necessarily refl ect the views of Sheffi eld and we will continue to work on behalf of Facebook! be welcoming our 1,000th member to the Parent Carer Forum. Sheffi eld Parent Carer Forum does our members and children, and provide Forum - and this is very much something to not endorse any organisations, products or services updates as the position becomes clearer! mentioned in this newsletter. Please contact us before celebrate! reproducing any material contained in this newsletter. Read more about what will happen from

Follow us on Twitter! We welcome articles from parents, professionals and ‘Side of the Hill’ page 18. Best wishes @ShefParentForum practitioners. Please contact us to discuss possible contributions. Sheffi eld Parent Carer Forum is a registered Also inside this edition: an update on the Jayne Woodward, Co-Chair charity and a company limited by guarantee. campaign against restrictions to disability Design by Company number: 7226540. Charity number: 1145913 2 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 3 FORUM NEWS

Take part in our survey and protect vital services!

If you live in Sheffield and care for a child or young person (aged 0-25) Christmas with a disability or additional needs, we need your views. We want to know if you are getting film is a hit enough support; whether you are Please take part! managing to combine paid work and with kids caring; and how happy you are with www.surveymonkey. your child’s education, childcare, respite, com/s/StateofSheffield2014Go to: health care and therapy services. The questions we are asking are based No internet access? Taking your disabled child to the movies can The film was shown with reduced sound on hundred of conversations we have 0300 321 4721 be fraught with difficulty – especially if they levels, dimmed lights and without trailers, to had with other parents over the years. like to dance in the aisle, provide a running accommodate those with sensory issues. Call us on Your answers will help us gather data on commentary, or leave half way through the film. “Really good to have no trailers to request a hardcopy “My son was happy, which made me a range of issues, and enable us to speak Closing date so no waiting, and to know others with a strong voice on your behalf. happy as well. Everything was nice.” understand and didn’t have to worry As Sheffield City Council is gearing up to 30 April 2014 about my child’s behaviour.” implement yet another round of budget At our recent private screening at the cuts (see page 9), it is vital that we can Prize draw for Showroom Cinema, all of these things The feedback was so overwhelmingly positive show which services are a real lifeline happened, and none of them were a problem. completed surveys... that we will make it a priority to organise for families – and which ones are so Despite the rather early start (9.30am on a another screening this year. overstretched that nobody should even Win £50, £30 or £20! Saturday morning!), over 200 parents and “We really hope you do it again next think about cutting their budgets! children joined us for mince pies and biscuits year... It was our first successful trip to in the Showroom Café, before settling down to the cinema... Thank you!!” enjoy a relaxed screening of The Polar Express. Forum membership extended to parents of young adults

The Sheffield Showroom, At our Annual General Meeting (AGM) in carers of children and teenagers, so we’re Showroom: 0114 275 7727 November 2013, the trustees voted to on a steep learning curve when it comes to Cineworld and Vue all run extend membership of the Forum to parents understanding adult services! However, this monthly autism-friendly Cineworld: 0114 242 1238 of young adults with disabilities up to the is something we’ll all have to face sooner or screenings, which usually age of 25. This brings us in line with new later. We’re pleased that we already have Vue Cinema: 0871 224 0240 legislation intended to establish a 0-25 good links with other organisations who take place on Sunday (ignore voice, press 0) special needs system (see pages 18 and 19). represent carers of disabled adults, such as mornings. Carers in Sheffield and the FLASh group at Jayne Woodward, Co-chair of the Parent Mencap, and we hope to work even more Carer Forum, said: “Most of our trustees are closely with them in the future.”

4 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 5 FORUM NEWS

New! Coffee mornings at St Mary’s Forum membership Do you tweet? approaches 1,000 Whenever we ask parents to rate our events We didn’t, until recently. Maybe it’s a and meetings, they invariably tell us how much Membership applications have been generation thing, but many of us don’t they enjoyed talking to other parents going coming in thick and fast recently, with really “get” Twitter. Luckily, our media-savy through similar things. So we thought we’d around five new families joining every week. trustee Deborah Woodhouse has taken run a few coffee mornings to see whether any We now have over 930 members, which pity on our dormant Twitter account and of you fancied getting together just to chat - makes us one of the biggest parent carer started tweeting on our behalf – gaining without the constraints of minutes, speakers forums in the country. If you’re not yet a over 250 followers in just a few months. and agendas. member, please fill in the form at the back If, unlike us, you are young and hip (or just When? Every second Thursday of the month, Who can attend? of this newsletter and help us reach 1,000 @ShefParentForummore clued up!), you can follow her We welcome all parent 10.30am – 12 noon (next meetings 10 April, members this year! carers, whatever their children’s needs, 8 May, 12 June, 10 July). Pop in for a few whether diagnosed or undiagnosed, mild or minutes, or stay for the whole session! Let us come to you! Where? severe. Pre-schoolers and home-educated St Mary’s Community Centre. children welcome (please bring some toys). Our “schools roadshow” programme is now in Parents who attended our outreach visits said its third year, and still going strong. Dozens of that they were “very informative”, “helpful”, schools all over Sheffield have had visits from “reassuring” and a “great opportunity to meet our outreach volunteers Joanne and Laura, parents going through similar things”. New parent carer reps recruited who usually turn up laden with biscuits, grapes Would you like us to come to your school? and various goodies – as well as lots of useful Then please encourage your school’s SENCO Every year, our volunteers attend dozens Meet our parent reps! information. At some schools, our visit even to contact us, or just get in touch and tell us of council meetings to represent the views sparked a new SEN parents’ group where who we need to speak to. of parent carers. Our reps are usually the They would none had existed before. lowest-paid people around the table, but love to talk to they do an incredible job - reading briefing you about your Free legal advice sessions papers, gathering and representing parents’ views, giving feedback … views and experiences. Last year, we ran three legal advice sessions Sessions will be As parents of disabled children, however, for parent carers, generously supported by held at St Mary’s You can chat they have caring responsibilities which limit to them at local law firm Irwin Mitchell Solicitors. The Community Centre the amount of time they can contribute. parents who attended the sessions said they on Bramall Lane on When officers asked us to join five new our subgroup had been “very helpful” and “enlightening”, the following dates: meetings and Thursday 10th April, 10am-12pm groups tasked with implementing the SEN that they had clarified their thinking and given reforms in Sheffield (see page 18), we knew quarterly open Monday 12th May, 12-2pm them new avenues to explore. it was time for a recruitment drive. meetings – Wednesday 11th June, 10am-12pm We are delighted to be offering these please see Tuesday 15th July, 12-2pm A mail shot to our members elicited a sessions again this year. Solicitors from Irwin fantastic response - over 20 parents pages 22 and Mitchell will be available to offer advice on a Booking is essential; volunteered! – and led to the recruitment 23 for dates. wide range of personal law matters, including 0300 321 4721 please contactenquiries@ our of eight new parent representatives. These wills, power of attorney, setting up trusts, sheffieldparentcarerforum.org.ukoffice on or email new volunteers will be trained and mentored special educational needs (SEN) processes to book by our “old hands”, to help them get to grips and provision, appeals against benefits your 30-minute slot. with their new role. decisions, and more.

6 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 7 LOCAL NEWS

Working Together training Services for disabled children hit by budget cuts Getting relationships with parent carers off to a good start. Services for disabled children in Sheffield have been fairly protected from the government’s austerity programme – until now. When faced with another significant reduction in central government funding for 2014/15, councillors decided that they could no longer afford to exempt any service areas. SEN Services (included in £300k saving) This year’s budget includes cuts totalling around £1.5m to services for children and £300,000 will be saved from the budget young people with special educational for Inclusion and Targeted Services, which needs (SEN) and/or disabilities. The following includes services for children with SEN. services are affected: SEN Transport (£200k saving) Post-16 Placements (£390k saving) The council wants to save money by Savings will be made by reducing the cost encouraging independent travel where of SEN and post-16 learning disability appropriate, and by reviewing the use of placements. This will be done by “taking escorts and the use of discretionary travel. a holistic and multi-agency approach to Special Needs Inclusion Playcare individual needs which supports young Service (SNIPS) (£100k saving) Our Working Together training continues to people to access opportunities on a bespoke “A fantastic opportunity to be able to Savings will be a achieved by a reduction in receive enthusiastic reviews from participants. basis”. By increasing in-city provision for post- meet parents in this kind of forum. management. In the last 18 months, we trained more than 16 special educational needs, the council Really thought-provoking and helpful! hopes to enable some young people currently Early Years Inclusion Team 100 education, health, social care and third - Participant. (£80k saving) sector professionals in how to engage with Excellent!” in more costly out-of-city provision to return to Sheffield. parents and carers of children with special Open courses run three times a year and Short Breaks and Respite Care Savings will be made by reshaping the Early needs and deliver services in a way that takes are suitable for professionals who work with (£350k saving) Years Inclusion Team and integrating it within the needs of the entire family into account. children with special needs and their families the wider Early Years service. and carers, as well as for individuals and Savings will be made by “reducing the cost of Developed and delivered by a team of parent We are extremely concerned about the scale organisations interested in exploring a fresh external placements through increased local trainers, Working Together provides a unique of these cuts - particularly in relation to the perspective on issues of disability and equality. provision”. A consultation into the Respite and insight into the often challenging realities of SEN reforms to be introduced later this year, Short Breaks Service will be held in early April caring for a child with a disability. The training Limited spaces are still available for our next which will have major capacity implications. (details will be published on our website). draws on lots of practical exercises, as well as open session on 30 April, from 9.30am to 1pm, Educational Psychology (£300k saving) We are currently trying to establish what the real-life case studies to explore the stresses at St Mary’s Conference Centre, Bramall Lane. and strains that parents experience on a daily impact on frontline services will be, and are For more upcoming dates and information on The savings will be achieved by charging basis. A particular strong point that many of working on a response. how to book a tailor-made training session schools for the non-statutory elements of the our past participants have highlighted is our Please help us demonstrate the need for your organisation,0300 please 321 4721 visit our website service. The council will continue to provide trainers’ ability to create an environment where for these vital services by taking part in or contact us on or email statutory educational psychology services free sensitive issues can be discussed openly and our survey! (see page 5) [email protected]. of charge. without fear of being judged.

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Information for Special needs toddler groups close in droves

parents of young The number of ‘Ready Steady Go’ groups Most of the groups were run by Children’s for pre-schoolers with additional needs has Centres, and the managers we spoke to shrunk to just one in the whole of Sheffield - blamed a reduction in Council funding for people aged 16+ down from over twenty in 2011. the closures. Run as weekly ‘play and stay’ sessions, the Council officers, however, told us that the The Sharing Caring Project at Mencap is groups were set up to enable parents with funding for the groups came from a time- running several information sessions about the concerns about their child’s development to limited government grant (DCATCH); it was legal aspects of caring, as well as a number talk to other parents and get advice from a only intended to cover the set-up costs and of transition clinics. The information sessions range of professionals, such as Speech and to help the groups become self-sustaining are aimed at all family carers of people with a Language Therapists, Portage workers and in the long term. Health Visitors. learning disability and/or autism aged 16 and The one remaining group is based at Darnall over, while the transition clinics are specifically Children’s Centre. for parents of young people approaching adulthood. Mental Capacity Act Wills and Trusts 8 May, 12.15 - 2.15pm OR 6-8pm 1 May, 6.30 - 8.30pm AND 18 June, (time to be confirmed) 10.30am - 12.30pm The Mental Capacity Act affects decision- NoIn last year’s radical spring newsletter, changes we reported that toTwo post-16 bridging programmes provision for school leavers Young adults may be required to pay a making for all people over 16 years who are Sheffield City Council was planning to move from Talbot, Heritage Park and Holgate personal contribution towards social care unable to make some or all decisions for towards a four-day week for ALL students in Meadows special schools (My Learning services they receive, depending on their themselves. For example, where the person specialist post-16 education (i.e. both at special My Way and New Routes) have also had a income and savings. It can therefore be a good should live, what services they need, consent schools and on specialist college courses), funding increase to allow them to take on more idea for parents to make a will and set up a to medical treatment, etc. Find out how Mental possibly supplemented by some employment- students. Capacity Act relates to people with learning related or leisure activity on the fifth day. discretionary trust for their young person. This Need help planning your child’s post-16 disabilities and/or autism and their carers, who This move was intended to address historic enables parents, grandparents and other family provision? The LDD Team at Sheffield Futures can take decisions, when and how. inequities between providers, and to enable members to leave money to the young person can advise you. Contact them on the council to meet increasing demand from a 0114 201 2800 without affecting their entitlement to state Transition Clinics . support. This session will cover discretionary static budget. trusts, choosing trustees, safeguarding income, These clinics are aimed at parents of young We have now been informed that there will legal obligations and more. people with learning disabilities/autism who be no abrupt changes to post-16 provision. Deputyship and are approaching transition to adult services Instead, the intention now is to taper out the the Court of Protection (aged 16+). There will be four sessions during time students spend in special school sixth the summer term: two in the evening (3 April forms, whilst simultaneously increasing their 30 April OR 16 May, 10.30am - 12.30pm and 5 June, both 6.30-9pm) and two during participation in enrichment activities. This will the day (9 April and 4 June, both 10am-1pm). (date to be confirmed) be done via an individual timetable for each A deputy is someone appointed by the Court All sessions will take place at Sheffield Mencap student. of Protection to manage the financial affairs & Gateway, Norfolk Lodge, Park Grange Road. In addition, the Council has given extra funding or welfare of a person who is unable to do For more information and to book your place, to the Sheffield College to increase provision for so on their own. Find out how to apply for please0114 contact 275 8879 the Sharing Caringscpoffice@ Project students on their Practical Skills courses from deputyship for your young person, and what sheffieldmencap.org.ukon or email three to four days a week. this role entails.

10 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 11 LOCAL NEWS

Changes to SIGN and • No more free train travel for disabled pass Campaign prompts holders on train services within South Parent Partnership Yorkshire, and between South and West rethink on cuts Yorkshire, at any time In January 2014, local charity Sheffield who require support and guidance can ask to travel passes The announcement is a big success for Information Link, which used to provide to be transferred to the Parent Partnership A campaign against cuts to disability travel parents in Sheffield who had campaigned Sheffield’s family information service and its Service. Parent Partnership now employs two passes has had an impact in Sheffield. against the restrictions. disability arm SIGN, closed after 26 years. former SIGN workers, alongside existing staff At Sheffield City Council’s budget meeting on experienced in special educational needs and The Sheffield Parent Carer Forum had written The disability information service (no longer 7 March 2014, councillors promised to look disability. to councillors to argue that the cuts were called SIGN) is now being provided by the into exempting disabled children travelling not just unfair, but a false economy. This Sheffield Parent Partnership Service. Parent The AskSid family information directory and to school from planned cuts to local travel is because they would make it harder for Partnership already runs the “Parents as most of the SIGN resources have been concessions. young people with disabilities to become Carers” service, which was set up in 2012 to rebranded and incorporated into the Council www.sheffielddirectory.org.uk independent travellers, and for parents to plug the gap that was left when the Sheffield website ( ). Originally, Integrated take their disabled children to school using Carers Centre stopped being funded to support This is likely to be a temporary solution, as Transport Authority had announced that the public transport - resulting in increased parent carers - particularly around health and most of this information should be incorporated following restrictions would apply to ALL demand for SEN Transport, at major expense social care services, and disability grants and into the new “local offer” website due to be disability pass holders from 31 March: to the council. benefits. launched in September (see pages 18 and 19). • Disability travel passes no longer valid for We hope that the exemption will also apply to By integrating these additional functions, Parent By expanding the remit of the Parent bus/tram journeys before 9.30am and after the use of the “With Carer” pass when used Partnership can now provide information, Partnership Service in this way, the council is 11pm on weekdays to escort a disabled child or young person advice and support on a wide range of topics, anticipating what is likely to become a statutory • “With Carer” travel passes no longer valid to school or college - but this has yet to be covering education, health and social care, and requirement when the SEN reforms are for bus/tram journeys before 9.30am and confirmed. access to disability benefits and funding. implemented in September: a new duty on local after 11pm on weekdays authorities to provide an impartial information, The SIGN telephone number remains advice and support service for parent carers operational, but has been diverted to the which covers education, health and social care council’s central Family Information Service Top tips from parents: 0114 273 4567 across the whole 0-25 age range. ( ). This service will deal with all initial disability-related enquiries; parents •Renewing DON’T use the link “Renew your or replace child’s your mobilityYorkshire Passenger travel Transport pass Executive mobility pass” on the Travel South Yorkshire Travel Centres. You will also need to take: website – even though it looks like it’s What’s changed at Parent Partnership? - additional medical evidence for certain working, nothing ever happens. Extended remit: conditions, such as epilepsy (if in doubt, Parent Partnership no longer covers just education. They can now also • There is no renewal form; you need to take everything!) help you to access health and social care services, benefits and funding, information download the application form from the - proof of address, age and identification of about specific disabilities, and local leisure activities. council website: www.sheffield.gov.uk/ New telephone number: 0114 273 6009 the pass holder (if applying for a new pass) caresupport/adult/support-available/travel- New address: Parent Partnership Service, Floor 4, Redvers House, Sheffield S1 2JQ pass/mobility-bus-pass.html - your child, if their photograph needs to be updated (travel centre staff can take a Email: [email protected] • Take/send the completed form back to picture using a web camera) [email protected] Howden House, with the required evidence. or • You should receive your pass by post within • You will get an authorisation letter by post a few days. within 28 days. Take this to one of the South

12 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 13 LOCAL NEWS cont. Ask the Lawyer

Question: Specialist college courses for produced post-16 students with learning difficulties conforms No Parking at Sheffield Children’s Hospital with the In addition, the hospital has set up a park and or disabilities (e.g. Foundation Learning or ride scheme with discounted parking rates guidance Practical Skills courses) are usually limited for patients and their families at the Q-Park issued by the Angela Sandhal Castlegate site near , with a free to three or four days of provision per week. Department shuttle bus to the main hospital site on the hour. Since many of these students are unable for Education. To obtain the discount, visit the hospital’s main to access opportunities for independent The guidance document can be found on reception desk and show your appointment study without support, they effectively get www.gov.uk/government/publications/the Department for Education’s website at letter. You will be given a discount voucher to fewer hours of education Is this legal? than their non- learning-difficulty-assessments For approximately the next 12 months, there use when paying at Q-Park. disabled peers. . will be no car parking available at the main Answer: For more information on the Q-Park Castlegate Children’s Hospital site due to major hospital Post-16 education is funded by the One of the key objectives of an LDA is that it Park and Ride scheme and other forms of and car park construction work. www.sheffieldchildrens. Education Funding Agency (EFA) and for places “should have a specific focus on the learning nhs.uk/parkingpublic transport visit to attract full-time funding, they must comprise programme that is required to enable the Car access is limited to drop off and pick up . If you have any special only. Visitors to the hospital are asked to use requirements, please contact Linda Towers, of at least 540 hours of study per year. This young person to progress towards greater park and ride schemes as well as other forms Patient Advice and0114 Liaison 271 Service7594 is based on a 30-week academic year and independence and where appropriate of public transport. Co-ordinator, on . equates to 18 hours of study per week. The employment”. If that cannot be achieved within EFA provides additional funding for High Needs 18 hours a week, then the Local Authority Students amounting to £6,000 per student for should consider increasing the number of a specified number of places. Local authorities hours by topping up funding. The other option New nurses at Ryegate are also given a top-up fund to meet any is for the young person to apply for a social additional costs of students with high needs. care personal budget and use this budget Years of lobbying from parents have finally to supplement educational provision by Whether appropriate education or training paid off! We are delighted to report that two purchasing services from a day centre, which is full-time or part-time will depend on what new specialist nursing posts have recently have a social care and education aspect. been created at the Ryegate Children’s is suitable for the individual student, and Centre: Jane Mitchell specialises in learning this may or may not amount to three or four To conclude, it is a concern if a Local disabilities and complex disabilities, while Jacqueline days of provision per week. What is clear, Authority were to take the approach of Jackie Gilmore works with children who Gilmore however, is that local authorities are provided only commissioning three or four days of have a diagnosis of autism or Asperger’s. with additional funding to support high needs educational provision each week for young Both work with children who are under the students, and they will be expected to exercise learners with a learning difficulty without care of a Neurodisability consultant. Jane Mitchell their functions and spend the top-up fund to exception when this is not sufficient to meet the The nurses offer parent workshops provide a higher degree of full-time education needs of the young person or the objections and home visits for children who have covers Talbot, Seven Hills, Woolley Wood or training for high needs students where this is in the LDA, and especially if there is no other been newly diagnosed, or who have and Norfolk Park, while Jackie runs clinics appropriate. provision in place for the rest of the time. It been referred to them by a member of at Bents Green, the Rowan School and may be appropriate to take legal advice if the the Neurodisability team. They also run The starting point is to ask the Local Authority Mossbrook. matter cannot be resolved through the Local nurse-led clinics for children who are due to do a Learning Difficulty Assessment (LDA) Authority’s complaints or appeal procedure. a review, unless parents prefer to see a Clinic appointments last 30 minutes, but (sometimes referred do as an assessment consultant. Clinics take place at Ryegate parents are given a phone number to call if under section 139A of the Learning and Skills Answer provided by Angela Sandhal, solicitor, as well as several special schools; Jane they need further advice and support. Act 2000), and to ensure that the document Public Law Department, Irwin Mitchell LLP

14 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 15 Forum Stars

Introducing our brand new feature! In this section, we want StarAndrew of this issue: to celebrate your children’s Livingston successes – from the small steps that perhaps only you noticed, to the big achievements that everybody can see. So, get snapping, get writing, and tell us what your wonderful children have been up to … “Living with Andrew and

Andrew is nine years old and goes to being part of his family is like Mossbrook special school. His favourite ‘living life in the fast lane’ – activities include cleaning (particularly hoovering), swimming, playing with Lego, thrilling, great fun, sometimes dancing with disco lights, and watching he often experiences as a result of not being scary and definitely Zingzillas and Mr Tumble on iPlayer. One of able to talk. exhausting, but we wouldn’t Andrew’s favourite places is sitting on his Dad’s shoulders (when Andrew decides that The picture above is Andrew at his First Holy have it any other way!” he really doesn’t want to walk - and he’s Communion. Leading up to the big day, heavy!). Andrew and a friend had been attending Catherine Livingston, Andrew’s “special” Holy Communion preparation mum Andrew has Down’s Syndrome and is in classes at St Vincent’s RC Church in remission from West Syndrome (infantile Crookes. epilepsy), which means his development has been delayed and he is completely Andrew’s mum, who ran the classes herself, put a cloth and a crucifix on a small table and When out in town one day, Andrew non-verbal. His sister Maria (7), who is a writes: “We enjoyed telling the children that sit with his hands joined in prayer, if only for a discovered that a climbing wall had been real chatterbox, likes to reassure those who Jesus loves us and wants us to celebrate few seconds. erected in Tudor Square. Completely haven’t met her brother before: “Please don’t with him, and they enjoyed many a party skipping the queue, Andrew made his way Finally, after many weeks of preparation worry, Andrew is just a ‘Children in Need’”. with balloons and cake (we had to blow out under the barrier to the base of the wall and classes, Andrew made his first Holy the candles every week). I will not deny that before he knew it (with mum’s permission) Andrew has only recently started signing Communion together with his friends. there were many challenging moments (at someone had put a helmet on him and more spontaneously using Makaton. It is We were so proud of him and it is clear from times I was the only person in the room). I he was being rigged up to go up the wall. great to see the expression of relief and the photo that Andrew (what a smart boy!) discovered that bribes of satsumas were key He didn’t go very far up, but the joyous happiness on Andrew’s face when he realises was very happy on the day. Afterwards we to maintaining Andrew’s interest! expression on his face says it all! Andrew’s that he can ask for an ice cream for example, went back home and had a big party with mum is now looking into climbing as a new by signing. He also enjoys using PECS both However, Andrew was definitely interested a bouncy castle in the back garden. It really hobby for Andrew… at school and at home. This helps Andrew in the classes and showed some was a day to celebrate. The Lord was to deal with the feelings of frustration which understanding. Every week, he would help to smiling his broadest smile on us that day”.

16 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 17 Countdown to the SEN reforms

key transition stage. We expect that the transfer this must include information about eligibility will be done as part of the annual review, and criteria and referral routes. Schools and service without a reassessment. providers will also have to set out their own “offers” for this group of youngsters. The new legislation will ring in some major cultural changes. By placing a strong emphasis The local offer has two purposes: to make it on involving children, young people and their easier for families to find the information they parents as equal partners in the assessment require, and to make provision more responsive process, it has the potential to turn what is to local need. This will be achieved through a often a faceless paper exercise into a genuine new duty on local authorities to publish, and collaboration. A new focus on “outcomes” respond to, comments on their local offer. means that it will no longer be acceptable to How the Forum is involved just allocate x hours of provision, and leave it at At the start of the year, we held two that. Instead, schools and service providers will consultation workshops to find out what need to show how they are supporting the child parents thought of the EHC plan template or young person towards achieving meaningful developed by council officers. The feedback long-term and short-term goals. was mixed; while parents liked the person- In September 2014, the special This is because the legal thresholds for School Action, School Action Plus centred elements – such as the one-page needs system will undergo the triggering an assessment and issuing an and IEPs to be scrapped profile with key information about the child - biggest overhaul in 30 years. Since EHC plan will be the same as for statements; School Action and School Action Plus will they also expressed concerns that a potential namely, that the child has special educational the legislative framework is yet to be be replaced with a single SEN category. At lack of detail could affect the enforceability of needs which cannot be met from the resources finalised, we can only give you a brief the time of writing, very little information was the plan. “normally available” to mainstream settings. available as to which pupils would be included overview at this stage. More detail will We also worked with the council to organise However, recent national changes to the school in this category. be included in our autumn newsletter. funding system mean that what is “normally a consultation on the local offer. Parents told available” is now defined as special educational The guidance on IEPs (Individual Education us how they wanted the local offer website to Education Health and Care Plans provision costing up to £6,000 per year. In Plans) has been removed from the Code of be structured; the kind of features it should Statements of SEN and Learning Difficulty Sheffield, this financial threshold will be one of Practice and replaced by a “cycle” approach of include; and what sort of information schools Assessments (LDAs) will be replaced with the criteria used to determine whether an EHC assess/plan/do/review. Although schools will and services should be required to provide. Education Health and Care (EHC) plans. Unlike plan is required; however, it will NOT be the still have to record what they are doing and the They emphasized that written information could statements, which lapse when a young person only one, and pupils needing less expensive impact this is having, they will no longer need to never be a substitute for face-to-face advice. leaves school or turns 19, EHC plans will provision may also qualify. follow a standardised national system. remain in place when a young person goes to Our parent representatives, who sit on several college or starts an apprenticeship, and they The government has said that it expects Improved information through local authority groups tasked with implementing can go up to age 25. This should help to make the “overwhelming majority“ of children and a “local offer” the reforms in Sheffield, keep highlighting this the transition to adulthood less of a “cliff-edge”. young people who currently have a statement/ From September 2014, every local authority feedback to ensure the views of parents are LDA to move to an EHC plan. Transitional will have to publish a “local offer” – a website taken into account. For progress updates, EHC plans will be more holistic than statements arrangements have yet to be finalised; however, with information about the range of support and please keep checking our website, or come to and cover health and social care as well as it looks likely that this will be a gradual process, services available for children and young people our Education subgroup meetings (see page 22 education. However, they will still only be with groups of children transferring from (aged 0-25) with special educational needs and 23 for dates). available to children and young people with educational statements to EHC plans when they reach a and/or disabilities in the area. Importantly, significant needs.

18 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 19 Support Group Focus Travel Insurance

Sheffield Family Support Group Getting additional cover for James was relatively straightforward. I had to disclose The Sheffield Family Support Group is a small community group that It will never happen. all his existing medical conditions, have a organises fun social swimming sessions for children and young people But it did. telephone conversation with the insurance (0-19 years) with a learning disability, and their families and friends. company’s medical advisor, and pay a small additional premium. Only members of the group are in the pool for these sessions, which take place in the We also had James’ European Health leisure pool at Hillsborough Leisure Centre Insurance Card (EHIC) with us. EHIC entitles once a month. We alternate between you to state healthcare at a reduced cost Saturday and Sunday nights to give as many or sometimes for free. It provides cover for people as possible the chance to take part emergency and routine treatment, including treatment of pre-existing medical conditions, in this activity. The pool session lasts for an James, with hour, and swimmers can use the waterslides Mont Blanc in in all European Economic Area (EEA) and experience the thrill of the waves. After the background countries, including Switzerland. NB EHIC swimming, there is the option of staying for is NOT an alternative to travel insurance! It a children’s party with buffet food including will not cover any private medical healthcare pizza slices, sandwiches and potato wedges. Last year on a family holiday (including ambulances) or the cost of returning home.www.nhs.uk/NHSEngland/ For more information, The group has been fortunate in receiving in France, our son James had Healthcareabroad/EHIC/Pages/about-the-please visit: funding from the South Yorkshire Community would love to do so again if there is enough one of his infrequent but serious ehic.aspx Foundation for 2013/14, and are hoping to interest. We are also developing a website epileptic seizures. and a Facebook page. be successful in applying for funding again We drove him to the local hospital where he The good news. James recovered well from this year. Come along to our received excellent emergency treatment; but his ordeal and amazingly, the insurance because he was still fitting and his breathing The children really enjoy the swimming next session! company agreed to reinsure him. So this was affected, he and I were transferred by and eating with their friends at the party summer we will return to France for an Where: helicopter and ambulance to the children’s afterwards. Parents and carers value the Hillsborough Leisure Centre, uneventful and enjoyable family holiday hospital in Lyon. James was admitted family time, but also enjoy the opportunity to Beulah Road, Sheffield S6 2AN because lightening never strikes twice!? socialise with, and get support from, other When: to intensive care where he stayed for a By Anne Snowdon Saturday 5th April 2014, 6.30- parents and carers. Siblings enjoy meeting week, before we were flown home in an air 7.30pm (swimming session), and 7.45- each other for social time and support. ambulance. 8.30pm (party session). Most people arrive The group has had a stable membership of around 6.15pm to allow time to book in and The whole experience was very traumatic but Travel Insurance Tips: thankfully, because we had travel insurance around 25 families for a number of years, but get changed. • If you are part of a local support Cost: that covered James’ condition, it didn’t many of our children are now young adults group or a social network, £5 per child for a swim only, and £6 bankrupt us as well. I don’t know the total who are moving on and we would really like ask other parents if they can per child for a swim and food. Parents and cost of our claim, but the helicopter bill was to welcome new members with younger € recommend any insurance carers swim for free. for 2,300. Goodness knows what the air children. In the past we have organised other More information: companies; recommendations ambulance cost! activities such as day trips in the school 0790 6620383 Contacttana.holmes20@ Tana Holmes from people in a similar position holidays, drum and dance workshops, googlemail.comon or email We used the annual family travel insurance can be invaluable. theatre trips and Christmas parties, and policy that came with our bank account. Continues on the next page...

20 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 21 Dates for your diary TravelContinued Insurance Tips:

• All existing medical conditions April May cont. June cont. must be disclosed and accepted by insurance underwriters for you Thursday 10 April, 10am-12noon Thursday 8 May, 10.30am-12noon Friday 20 June, 10am-12noon to be fully covered. Legal advice drop-in Coffee morning Education subgroup meeting • All members of your party should See page 7 for more information. be covered under one policy. See page 6 for more information and how Please come along to our Education to book. Monday 12 May, 12-2pm subgroup to talk to other parents about • You need an EHIC for every Legal advice drop-in special educational needs (SEN), swap member of your family. CoffeeThursday morning10 April, 10.30am-12noon useful information, and help us influence See page 6 for more information and how education policy - particularly the • EHICs are FREE; do not be See page 7 for more information. to book. implementation of the SEN reforms - in scammed into paying for one. Sheffield. This is a friendly and informal Friday 16 May, 10am-12noon EducationFriday 11 April, subgroup 10am-12noon meeting Meeting about SEN transport group, and new members are very welcome! Family Fund Travel Insurance Please come along to our Education This is an opportunity for parents to meet The Family Fund has teamed up subgroup to talk to other parents about with officers from the SEN Transport Service with Holiday Direct Insurance to offer special educational needs (SEN), swap and help improve home-school transport in July affordable holiday cover for families useful information, and help us influence Sheffield. caring for a disabled or seriously ill child education policy - particularly the implementation of the SEN reforms - in Thursday 10 July, 10.30am-12noon aged up to 18 years old (or 23 if they June Coffee morning are in full-time education at the time of Sheffield. This is a friendly and informal group, and new members are very travel). Advantages of the policy include welcome! See page 7 for more information. automatic cover for all immediate family, Friday 6 June, 10am-12noon Quarterly open meeting including grandparents and carers, and Tuesday 15 July, 12-2pm Wednesday 30 April, 9.30am-1pm Legal advice drop-in no requirement for medical screening for Working Together training Our quarterly open meetings are an existing medical conditions. Cover starts opportunity for parents to meet our See page 6 for more information and how from £23.76 per family, per trip. For more Open training session for professionals who trustees, paid workers and parent to book. information, please visit www.familyfund. work with children with special needs and representatives, and get an update on the org.uk/travelinsurance their families. See page 8 for details. work they have been involved in.

Wednesday 11 June, 10am-12noon All meetings will be held at St Mary’s Legal advice drop-in May Community Centre, Bramall Lane, National disability charities See page 6 for more information and how Sheffield S2 4QZ unless otherwise National disability charities often have HealthFriday 2 May,subgroup 10am-12noon meeting to book. indicated. commercial relationships with travel insurance companies which might be To ensure we have a big enough room, it This meeting will be attended by senior Thursday 12 June, 10.30am-12noon would really help us if you could let us know in worth looking at, e.g.: Coffee morning staff from the Child and Adolescent Mental advance if you are planning to come along to Health Service (CAMHS). We want to talk • National Autistic Society: www.autism. See page 7 for more information. any of these meetings (please see inside front to them about getting parents involved org.uk (search for “travel insurance”) cover for contact details). shaping in the service, and about improving • Epilepsy Action: www.epilepsy.org.uk/ support for parents of CAMHS patients. For morewww.sheffieldparentcarerforum. event information, please visit our website: info/travel-insurance org.uk/calendar

22 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 23 Useful Contacts

ADHD Project 0114 321 1705 [email protected] School to School Support (formerly 0114 2930932 [email protected] Learning Support Service) Provides information, support and training for families with a child with ADHD Run by Talbot Specialist School, this service Autism Service* 0114 235 8056 [email protected] supports schools and parents to improve (helpline) inclusion and attainment of pupils with SEN and Supports mainstream schools to meet the 0114 273 6412 disabilities needs of pupils with autism and related (office) SEN Assessment and Placement Team* 0114 273 6394 ed-sensupportteam@sheffield. conditions gov.uk Children with Disabilities Team* 0114 273 5368 Deals with statutory assessments, statements of SEN, annual reviews, SEN transport and Social work team for children and young specialist placements people with disabilities. First point of contact for Sheffield Children’s Hospital 0114 271 7000 sheffield.childrenshospital@sch. requests/referrals for short breaks services nhs.uk Contact-a-Family 0808 808 3555 [email protected] Sheffield Futures Learning Difficulties and 0114 201 2800 [email protected] National charity which provides information and Disabilities (LDD) Team advice on any aspect of caring for a disabled child, including education and benefits Supports young people with learning difficulties Direct Payments Team* 0114 273 5985 [email protected] and disabilities to make the transition into further education and employment Provides support, advice and guidance relating Sheffield Parent Partnership Service* 0114 273 6009 ed-parent.partnership@sheffield. to direct payments gov.uk Early Years Inclusion Service* 0114 273 6411 [email protected] Provides information, guidance and support for disabilityinformationservice@ parents of children with SEN and/or disabilities sheffield.gov.ukor Works with young children (0-4) with additional [email protected] including education, the SEN processes, leisure, needs both in their homes and in settings benefits and funding Educational Psychology Service* 0114 250 6800 [email protected] Sibling support group 0114 233 2908 philip.hazlehurst@burtonstreet. org.uk Works with families and staff in educational Support group for children who have a brother settings to support the education and or sister with a disability. development of children and young people Special Needs Inclusion Playcare Service 0114 273 4017 [email protected] Hearing Impaired Service* 0114 273 6410 caroline.chettleburgh@ (SNIPS)* sheffield.gov.uk Works with children who are hearing impaired Provides training, grants and mentoring support Independent Travel Training* 0114 205 3542 [email protected] to help clubs include disabled children aged Trains young people with disabilities/learning 5-18 Social Care Transition Team* 0114 273 5368 katarina.bajin-stone@sheffield. difficulties to use public transport to get to gov.uk school, college and work placements Team of social workers who offer a transition IPSEA 0800 018 4016 Email information service via planning service for young disabled people www.ipsea.org.uk leaving full-time education National charity providing free legally-based Transport Services* advice on educational issues for parents of 0114 203 7570 [email protected] children with SEN Provides transport services including home-to- Portage Home Visiting Service* 0114 273 6411 [email protected] school transport for pupils with SEN Vision Support Service 0114 294 1201 marion.broadhurst@sheffield. Home-visiting educational service for children gov.uk under three with additional support needs and Supports children with a visual impairment and their families their families Ryegate Children’s Centre 0114 271 7651 Within Reach 0114 273 4266 [email protected] Assessment, diagnosis and therapy for children Provides sport and physical activity for disabled and young people with developmental and people of all ages neurological problems

* Part of Sheffield City Council 24 www.sheffieldparentcarerforum.org.uk www.sheffieldparentcarerforum.org.uk 25 Advertisement Sheffield Parent Carer Forum Application for Full Membership Short Breaks and Full membership is FREE and open to all parents and carers of disabled children and young Community Based Activities people (0 - 25) who live in Sheffield or access services in Sheffield. For young Adults with Learning Disabilities About you

First name Surname

Tear along here Tear Street and house number

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Email address (please print) Tideswell Court, 4 Tideswell Court, Sheffield S5 6JJ We are situated in a quiet residential area in The house is within easy reach of the Home phone Mobile the north of the city, in Longley Sheffield. town centre and there is easy access to Your ethnic group (optional) Tideswell Court is registered with the Care a number of historical areas of interest, Quality Commission and can accomodate leisure and recreational facilities. About your disabled child/children Please tick as appropriate : three service-users for overnight stays at any one time. Child 1 Please add me to your email list. Date of birth Please add me to your text messaging list. Short Breaks Community Based Activities We offer short breaks in a homely During your stay at Tideswell we are able Main disability Please add me to your postal mailing list. environment where you can continue to to offer a wide range of indoor and outdoor Other disabilities I am happy to take part in consultations: develop your skills and abilities. • Craftsactivities... • Life Skills - Farming and Gardening by phone by email Support is organised to suit individuals - Cooking, Baking, Shopping, by post by SMS whether it is an overnight stay, weekend, a • LeisureBudgeting, and Travelling Social School (name) few days or regular visits. - Ice-skating, Child 2 I am interested in volunteering with the Swimming, Crazy Golf, Walking, Ten-pin Parent Carer Forum. Support is always available • DayBowling Trips Date of birth 24 hours a day - Museums, Galleries, Historic sites and more... Main disability Other disabilities For further information contact us Signature

Principle Support School (name) Date Head Office, 9 Orgreave Road, Khepera Business Centre Child 3 Sheffield S13 9LQ Please note: By signing this form you 0114 213 1750 consent to the Sheffield Parent Carer Forum Telephone: Date of birth 0114 238 1870 storing your information. We will not pass Fax: [email protected] any of your details on to any third parties. Email: Main disability www.principlesupportltd.co.uk Members of our postal mailing list will receive Website: Other disabilities a regular newsletter. Members of our email list and text messaging list will receive news The Sheffield Parent Carer Forum accepts no responsibility for advertisements placed in this updates and events information. You are free newsletter. We urge families to check that providers comply with safeguarding and health and to opt out of this service at any time. safety requirements before using their services. School (name)

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