NEWSLETTER MARCH 2018

For families with children and young people with SEN and disabilities

The secret life of parent carers This year, Amaze joins national charities in throwing a spotlight on the additional challenges faced by parent carers and asking for more of the help you need.

per cent of parents with a disabled child say the public do not understand the kind of challenges they face every Talent on show day. So the campaign’s website is Two recent Amaze events have shown addressing this lack of understanding just how talented our local young by featuring lots of real-life stories of people are and given them a brilliant disabled kids and their families at opportunity to express themselves. disabledchildrenspartnership.org.uk/ 15 young people performed at the secret-life-of-us. Amazing Talent Show in December. Locally, Amaze and the Parent The fabulous acts included a rapper, Carers’ Council (PaCC), have also been dancers, singers, guitarists and a showcasing your stories and gathering violinist. 50 people came to the event Amaze and PaCC are always working evidence to illustrate what works and which was hosted by the young people hard to help people understand just what further support is needed. As involved in the Amazing Futures how tough life can be for parents and part of our 20th birthday celebrations, Project. Having had such positive carers of disabled children. This year, we produced a new film, ‘Generation feedback, we’re hoping to make it an that same message is being echoed Amaze’, that focuses on the positive annual event, so all your talented loud and clear by a coalition of 50 impact of our work with a generation children and young people should national charities behind the ‘Secret of families in . You get rehearsing for the next show. Life of Us’ campaign - a new crusade can see it amazebrighton.org.uk/ November was lit up by the second to raise public awareness of the daily resources/our-videos Face 2 Face Fashion Show, in aid of struggles disabled children, young Parents in the film speak very our befriending project. Children and people and their families can face movingly of how we’ve helped them young people with additional needs and, in the longer term, to improve over the years, but also of some of the sported the latest Gap fashions and health and social care services. challenges they and other parent strutted their stuff on a catwalk at The ‘Secret Life of Us’ identifies a carers face on a daily basis; Downs View Link College, accompanied distinct gap in the public’s challenges that mean they rely on by some brilliant tunes. Thanks to understanding of disability; 43 per local services like short breaks to Gap Brighton, Guy cent of people say they don’t know survive as carers. Lloyd of Juice FM for anyone with a disability, despite one We also gather hard data about being our compere, in five people being disabled and 97 Continued on page 4 and to Dickie and Cheesecake INSIDE: Universal credit • Day in the life of a Family productions for Practitioner • Face 2 Face groups • Peer supporters... playing DJ. 2 • out of amaze MARCH 2018 news

the enhanced rate (£58 a week). On 21st December, High Court judge Mr Justice Mostyn found that the government’s exclusion of “psychological distress” in awarding the enhanced mobility rate of PIP was “blatantly discriminatory” and could not be justified. Linda Burnip, co- founder of Disabled People Against Cuts, the campaigning group pictured here celebrating outside the Royal Courts of Justice, said of the judgement, “It will make a huge difference for thousands of disabled people with mental health support needs.” The new ruling means that people with mental health conditions can 1.6 million PIP claims to be reviewed after now get enough points to qualify for the enhanced mobility rate of PIP. government changes declared unlawful The DWP will now look again at all decisions made since 17th March Everyone who gets Personal awarded for the mobility component 2017, and some 220,000 people are Independence Payment will have of PIP, excluding people who couldn’t expected to receive additional money their claim reviewed after a High get out and about due to and backdated payments. Court ruling in December found that “psychological distress”. This meant To find out more about PIP, the government’s latest regulations that many young people with autism download our fact sheets about PIP were “blatantly discriminatory” to and/or serious mental health issues claims and face to face assessments, people with mental health conditions. were unlikely to score enough points at amazesussex.org.uk/resources/ New rules introduced in March 2017 to get even the standard PIP rate for publications/fact-sheets. had changed the way that points were mobility (worth £22 a week), let alone

Progress on changes to special schools and more

Things are moving ahead gradually there is equity of provision, so that social, emotional and mental health with the changes to special school although the hubs have their own (SEMH) difficulties, combining provision in Brighton and Hove. character, the offer to families will be Homewood College and the two The big news late last term was just as good at each. The West Hub pupil referral units. We are also that Rachel Burstow will lead the will not involve much change to the waiting for news about which West Hub (which includes Hillside Hillside and Downs Park buildings but mainstream secondary school will and Downs Park) and Adrian Carver at Downs View there will be major host a new special facility and where the East Hub (which incorporates building work likely to start this a new specialist nursery (to replace Downs View, the Cedar Centre and September. Jeanne Saunders) will be. Downs View Link College). Rachel Recruitment is still in progress for We’ll publicise updates from the and Adrian have both said they are an Executive Headteacher for the council and the new hub heads as we committed to co-production, which third hub, which is for pupils with get them means actively involving parents in shaping the plans for their hubs and this is underway with meetings in You can keep up to date with the latest information on January and February. Brighton and Hove’s special school reorganisation via our Adrian and Rachel are also going website at amazesussex.org.uk/news-and-events to work together to ensure that news out of amaze MARCH 2018 • 3

Independent Support stays for now We’re very pleased to announce that our Independent Support (IS) service will be continuing to help parents and young people with their Education, Health and Care Plans (EHCPs) for the next few months and possibly longer. After much uncertainty, the Department for Education confirmed in January that they will continue to fund Independent Support while they look at how best to support Peer Supporters do us proud children with SEND and their parent carers in the long term. th Our 20 birthday bash in December she has gained from first being an Since our IS service was launched was not just a celebration of the intern with Amaze and now a peer in Brighton and Hove in September amazing work we’ve done with supporter. 2014, we have worked with 1300 families in Brighton and Hove over The peer supporters were then families and we’ve had some the last 20 years - it also gave us the invited onstage, one-by-one, to fantastic feedback about the impact chance to put our new Amazing accept certificates for completing this support has had on their lives. Futures Peer Supporters centre-stage their four-week training course from “I can't put into words the relief I and trumpet their achievements and Amaze patron and world-renowned feel and how much you have helped the success of the project so far. children’s author, Julia Donaldson. in these two EHCPs” Sue Winter, the project coordinator, Their poise and self-confidence “I feel with you by my side I was able gave the invited audience an engaging walking up on to the stage and talking to really get my point across as well overview of what they’ve been doing to Julia in front of so many people as having the confidence to do so” and what they’ve learned, and one of made us all very proud of them and We’ve also been delighted by the the volunteers, Danielle Garratt, the project. Read more about peer positive working relationships that spoke first-hand about the confidence supporters on page 14. have grown out of Independent Support, with our staff working AAA for Stanford the subject fully. together with SEN professionals and “The hard work the SEN team at the local authority Infants started with to get the best for children and Apologies to Stanford Infants for pulling together young people. mistakenly attributing their hard won evidence and Updates on the IS service will Autism Awareness Award to Stanford initially we were follow as we know more. Juniors in the last issue. To rectify our rather daunted; would we be able to mistake, we asked Emma Remnant find enough evidence of Autism Aware A Normal Family work within our school? But our from the Infant school to tell us more Look out for ‘A Normal Family’, a supportive tutor, Rachel MacDonald- about the AAA award process. new book by Amaze patron Henry Taylor, visited the school and “We were keen to apply for the Normal about the ‘everyday encouraged us to take her on a AAA,” says Emma, “as - having not adventure’ of living with his autistic Learning Walk. By the end of the Walk had a child with a formal ASC diagnosis son, Johnny. Launching on March we were amazed at just how much at the school for many years - we 22nd, it’s a warm evidence we did have to demonstrate wanted to ensure our practice was as and humorous tale our inclusive practice and autism supportive and inclusive as possible. that we’re sure will awareness. It was hard work but very The six seminars were informative and resonate with many rewarding and we’d encourage other practical and it was great to have the of our families. chance and purpose to read around schools to take part.” 4 • out of amaze MARCH 2018 feature

The secret life of parent carers cont... your lives in the course of delivering a quarter of parent carers provide over our services. For example, we ask lots 100 hours of care a week and 56% of questions about the needs of provide 35 or more - almost twice the parent carers when you apply for or amount provided by other types of renew a Compass Card in Brighton carers. and Hove. The report also underlines the fact Our analysis of your responses to that “disabled children and their our Compass form questions in 2017 families are at a significant Grants to help you paints a pretty stark picture: disadvantage in...their economic have more fun  54 per cent of parent carers are situation, health, employment and Did you know that Mencap Brighton providing over 35 hours of housing”, and that parent carers’ lives & Hove offers £200 grants for people additional care each week (22 per are likely to be much more with learning disabilities and their cent over 100 hours/wk) significantly affected by their caring families and friends to do more of  53 per cent have not had a break the things they love? from their caring role in more than 22 per cent of parent This might be a day out, help with 6 months (32% reporting they paying for train tickets to visit family have never had a break) carers in Brighton and and friends or even help towards the  Only 37 per cent of parent carers Hove are providing cost of a holiday. say they get a good night’s sleep over 100 hours of The grants are available to  30 per cent of parent carers say children and adults with learning they have their own disability/ caring a week. disabilities and you can apply online long term health condition, with at www.brighton-mencap.org. If you 50 per cent saying their physical role than carers of other people. need a paper form or any advice on health (and 60 per cent their In response to these findings, filling it in, call 01273 479620. mental health) has been affected Contact is demanding more health by their caring role and social care services such as short  68 per cent have said they can’t breaks, therapies, personal care, etc. New online PDA work, or have reduced how much And they say this can only be achieved forum they work, as a result of their by reversing the national and local There’s a new online forum for caring role trend of funding cuts and reduction of Brighton and Hove parents of  17 per cent report they’re skipping already insufficient services. Read the children with ASC (or suspected ASC) meals as there isn’t enough money ‘Caring more than most’ report at who don’t fit the typical autism to feed the whole family www.contact.org.uk profile and who find the usual PaCC has also just published a report In Brighton and Hove, Amaze and strategies recommended for children on ‘Carers Needs Assessments’ which PaCC are working with councillors and with ASC don’t seem to work. flags up the need for more respite, senior officers to highlight the Parents who run the group identify counselling and preventative services pressing needs of families with pathological demand avoidance like peer support and advice, rather disabled children and asking them to (PDA) as a helpful way of than crisis-driven responses. Read protect these much needed services understanding their child and you more about this on page 8. and support. We’re also working hard can read more about PDA at PaCC and Amaze’s local findings to secure continued funding for our www.pdasociety.org.ukwhat-is-PDA very much reflect what’s going on all services that offer crucial support to or the National Autistic Society’s over the country. As part of the Secret parent carers - including our Face 2 website: www.autism.org.uk/about/ Life of Us campaign, national charity Face befriending service. what-is/pda.aspx Contact has compiled a wide-ranging If you’re struggling with your caring If you want to speak to local report, ’Caring more than most’, role right now, visit the Survival parents going through similar issues about the daily lives of parent carers. Strategies section of our website for around diagnosis and behaviour, It is striking how closely their information and advice about what visit: www.pdahelp.wixsite.com/ findings match what you have told us help is out here, including counselling brightonhovepdaforum locally. ’Caring more than most’ finds and parent groups, or call our helpline on 01273 77289. feature out of amaze MARCH 2018 • 5 Day in the life of a Family Practitioner Karin Anjos tells us about her work supporting children and young people with social, emotional and mental health issues and/or additional needs

“There is no such thing as a typical day and Hove now has a Primary Mental or week for me,” says Karin. “On any Health Worker based there up to 2 given day I could be visiting a family days a week) or we might refer them at home, meeting with a parent in to CAMHS (Child and Adolescent school or going to a Team Around the Mental Health Services) for more Family (TAF) meeting, or perhaps specialist assessment or intervention. additional needs, ASC/ADHD (and running a workshop. I really love the Family Practitioners also run managing the behaviours associated variety of it – I don’t think I’m cut out workshops in schools for parents and with them), and selective mutism. for 9-5 in an office every day! carers (and staff, where possible). “We “We also run groups for parents and “It’s very busy – there are four of us cover lots of different topics. We’ve carers based on particular issues or working part-time so that’s equivalent done sessions on behaviour, anxiety, techniques like building resilience, to two full-time staff, covering the managing emotions, sensory issues, protective behaviours, anxiety and whole city. We’re part of the Brighton executive functioning and autism. If we’re working with a parent and Hove Inclusion Service (BHISS) attachment, and we’re just piloting a who would benefit from one of these and work closely with the other BHISS new play workshop.” groups we’ll let them know about it teams including the Primary Mental but you don’t have to be getting Health Workers who are based in “We operate a system direct support from us to come along. secondary schools. “ of school ‘book-ins’, Ask your school or check Amaze’s Karin told us how the Family where parents can events listing or the Local Offer to see Practitioners work in schools: if there’s one you’d like to attend. “We operate a system of ‘book-ins’ discuss anything that’s For Karin, the best thing about the where schools get a two-hour slot in worrying them.” job is seeing things get better for which they can book half-hour families: “I was working with a parent appointments for four parents to “These school-based workshops are recently who hadn’t really connected discuss anything that’s worrying them open to parents and staff from with her child after post-natal about their child’s behaviour or surrounding schools too and you’ll depression. In one of our sessions, I wellbeing. This might be anxiety or usually hear about them from your played with the child and mum said, bullying, or maybe a child has suffered school, on displays, in book bags or in ‘Oh I’ve not done that before’. So we a bereavement or the parent might the weekly newsletter most schools practised some short five minute want to talk about their child’s send out.” sessions on play techniques and then behaviour and what might help. “The one-to-one work we do with mum spent 10 mins a day playing with “What happens next really depends families is usually in their own home, them regardless of how they’d on that initial conversation. Perhaps though it could be in the school behaved and it really made a we’ll work with the school to give environment if that works better for difference to their relationship and them some extra support, or we might them. It’s usually up to six sessions the child’s behaviour. offer them some ongoing support around a particular issue and that can If you think you might benefit from ourselves – perhaps through some be quite specialist. For example, we’ve talking to a Family Practitioner, speak home visits, for example. If the child got an ‘enhanced adoptive parenting’ to your child’s teacher or the school is at a secondary school, we might ask programme for adopters and kinship SENCO. And look out for school-based the Primary Mental Health Worker carers which covers behaviour and workshops and groups sessions on attached to the school to get involved attachment and play. We’ve also got school displays or newsletters and (every secondary school in Brighton quite tailored programmes on anxiety, flyers. 6 • out of amaze MARCH 2018 groups

sharing experiences or knowing people just ‘get it’.” Friends for life Another Dad’s Group regular says, In Brighton and Hove we’re lucky to have lots of groups “The group is fun and there is a real where families with disabled children can meet up with strength in its unforced atmosphere - there should be one in every city in other mums and dads like them. Amanda Mortensen, the country.” our Face 2 Face coordinator, tells us about the groups All our Face 2 Face groups are led overseen by her project. by our volunteer team and started by parents. We make sure we complement what’s already out there and we work group at Tarner Children’s Centre closely with Brighton & Hove City says: “The group is such a lifeline to Council. The council supports the us to have a space where the kids can groups with venues (Tarner centre for be themselves and we don't feel like the autism group) and skilled staff - we’re different or have to explain Natalie our skilled play worker at the ourselves. We can meet other parents autism group and Jacquie, our very in the same situation and feel less experienced nursery worker at isolated and share tips and PRESENS. strategies.” “Face 2 Face is all about emotional To find out more about any Amaze Becky, mum to Jessie aged four, support,” says Amanda. “Our volunteer Face 2 Face groups email Amaze at who has autism and high anxiety, befrienders, all parents of disabled [email protected] or call adds: “Jessie has grown in confidence children themselves, provide one-to- 01273 772289. You can also find which has been wonderful to see.” one support, but we’ve also developed details of lots of other parent support The Dads Group is held in The a number of groups from parents groups in Brighton and Hove at: Stoneham pub once a month. Set up telling us where the ‘gaps’ are.” www.amazesussex.org.uk/services- by our dad befriender Reza, the group There are currently four groups: a and-support/parent-support-groups has grown and grown and is now run monthly group for families who have a by Darren, dad to Amy. Chris, one of child with autism under 7; a monthly Our Face 2 Face project recently secured the regulars at the group says: “Many dads group; a weekly preschool group £10,000 from the Insurance Industry dads [of disabled children] don’t have Charitable Foundation towards its befriending and a ‘breakfast’ drop in group, an outlet where they can talk or meet work (they previously supported our Amazing recently set up by a dedicated Futures Project) and we are looking forward to other men who know what they are volunteer. working with them. Thanks to going through. The men’s group “Being a parent carer can be Community Foundation, Chalk Cliff Trust and offers that outlet, whether it’s for Brighton & Hove City Council for also incredibly isolating, not to mention supporting the Face 2 Face Project. frightening at times,” says Amanda, “particularly at the very early stages when we know something is going on Dads group Autism group with our child but may not know what, Last Thursday of for under 7s with a diagnosis of or have just received a diagnosis. the month, The autism or being assessed. Toys, soft Making new connections during these Stoneham Pub, play, outside space, refreshments. difficult times can be incredibly Portland Road, Second Saturday of the month at helpful.” Hove. Tarner Children’s Centre. “And there’s something about the Contact: Darren at Contact: Amanda on 07917887526 camaraderie of a group,” she adds, [email protected] [email protected] ”that gives you the space you need to offload and share ideas, and it’s great Breakfast Club PRESENS group for under 4s to be able to do that in a supportive, Monthly meet up for parents at any on the PRESENS register at Jeanne non-judgemental environment.” stage of the journey. This group Saunders or in nursery. Mondays, Emily, mum to Orla, who has moves around the city. term time, 12.30-2.30pm. Contact: recently received a diagnosis of Contact: Amanda on 07917887526 [email protected] autism and who attends the autism [email protected] MARCH 2018

would be lovely for her to realise how much she is appreciated and what a wonderful person she is.”

Voluntary Sector Pippa Hodge - Co-ordinator of T21 “Pippa has grown and developed the fledgling T21 group into a thriving community and gives immeasurable support to many, many families who are forging lifelong links for themselves as parents and a crucial friendship network for the children. She is quite simply brilliant!” Our 2017 PaCC Champions proudly displaying their awards at the Amaze AGM. Community Business Catherine Newell – Support Group PaCC Champions shine at the Facilitator Amaze AGM “Catherine provides a safe and confidential place for parent/carers to offload and dig deep with the many Every year the PaCC Awards are an Lyndsey Judge – SENCO anxieties and fears they have opportunity to thank those people “Society needs more people like surrounding their situation…She who work alongside our families in Lyndsey and as she is so amazing, I helps us to help ourselves and our Brighton and Hove and go the extra feel like she deserves an award for all situations to see the light in front of mile to help us. The awards highlight the hard work she does to make such a us. The group is so enlightening - it’s the services that are so vital to our difference to people's lives.” unique and needs recognition.” families as well as thank those special individuals who’ve really made a Health Outstanding Contribution difference. This year we included a Lisa Craig – Occupational Therapist Lizzie Batten - Amaze DLA Project new ‘Community Business’ category “Brave, strong, sure and very loving Manager for local organisations that and kind - all these words describe “Incredible Lizzie is a force of nature independently provide a service for Lisa and it takes courage to witness a in the voluntary sector. She helped parent carers and their families. family in pain over days, months, me to fill out my DLA form twice - Pinaki Gosh, Executive Director for years and to keep being hopeful and once when my son was first diagnosed Families, Children & Learning, kind and open to helping in whatever and again five years later when we presented the awards at the Amaze way works.” needed to renew. It was so reassuring AGM and the winners were divided to have someone there who's an into six categories. Social Care absolute expert in the field. She is a Amanda Graham – Personal Assistant shining star at Amaze and her Education “Despite her heavy workload, she was reputation is untouchable - she is Antigone Nikiteas – Teaching there for us when times were very worthy of an award” Assistant and Personal Assistant incredibly hard for us as a family. It “Antigone has got an amazing ability to help and build confidence in children. She is the only person who is Nominate your PaCC Champion for 2018 able to deal with challenging If you have a PaCC Champion you’d like to nominate for 2018, please visit behaviour and avoidance. She has www.surveygizmo.com/s3/4099298/PaCC-Champions-Nomination-Form-2018 made an enormous difference to us.” 8 • out of amaze MARCH 2018

Parents who responded told us they want more counselling for themselves Your needs as carers and their children/young people. Our new report on ‘Carer’s Needs Assessments’ shows They’d also like more information and that, despite the latest legislation, many parent carers advice on what’s available for them and their families. have never had their needs assessed or are not aware Parent carers would like to be able when they have to access more courses to support them as carers, and see more training PaCC and Amaze recently asked you to What you told us offered to professionals around SEN tell us about your experience of Of the 113 parent carers who took and disabilities. having your needs as carers assessed. part, 81 per cent said they’d never had Parent carers say they need more We developed a simple online survey, a formal carer’s assessment and 71 per respite, including activities and in association with the Carers Centre, cent had never been offered a social support groups, as well as more which we sent to all parents in care assessment. Of those who had befriending and peer support. And Brighton and Hove on the Compass received a carer’s assessment, only 30 parent carers want to see more disability register. per cent said this was recorded and preventative services instead of crisis- The consultation was done as part written down. driven responses. of our work with the local Clinical Our recommendations as a result of Commissioning Group (CCG), though 81 per cent [of parents] the report include: the report identifies concerns that  More clarity on which parent carers cross both health and social care said they’d never had a are likely to have their needs services, some of which are provided formal carer’s assessment assessed, how often and by whom, by Brighton & Hove City Council. and 71 per cent had never and for these details to be shared  Professionals using the SFA to What the law says been offered a social care identify if there is a carer in the The law around carer’s assessments is assessment family and include their needs in complex but in essence the Care Act any assessment  Better recording and 2014 and the Children and Families Whilst we can’t be sure that communication about assessments Act 2014 strengthened the right for everyone who responded to the survey of carer’s needs as part of the SFA carers of adults, carers of under 18s would be eligible for a carer’s  Continued, secure funding for and young carers to have an assessment, the results suggest that social care services and services assessment of their own needs too. many eligible carers are either not that provide information, advice The right to a parent carer assessment getting any assessment or, where the and support to parent carers is separate to the duty to assess the child/family is assessed, it’s not clear  Increased investment in counselling needs of a child but can be carried out to the family that this includes a for carers and their families alongside this as part of a holistic carer’s assessment. As one parent  An end to proposed budget cuts family assessment. This is what commented, “I didn’t even know that I for critical preventative services usually happens in Brighton and was entitled to an assessment and no (see page 10 for more on this) Hove. professional has ever suggested that

Local parent carers of under 18s we need a social care plan for my son.” The report and its recommendations usually have their needs assessed as part of the Strengthening Families have been passed on to the Brighton What you need and Hove CCG and Brighton & Hove Assessment (SFA). This may be via a Parents said that they currently get local social work team or the City Council and we’ll follow up on any most of their support from charities, outcomes in later editions. Read the Children’s Disability Team at Seaside voluntary organisations and View. Parent carers can also ask for a full report on PaCC’s website at: community groups and from their separate, more formal carer’s www.paccbrighton.org.uk/resources/ family and friends. Public sector reports assessment of their needs (as carers support comes via GPs, SENCOs, of adults often get) but you’re unlikely Seaside View, CAMHS and therapists, to be offered one unless you ask for it. amongst others. out of amaze MARCH 2018 • 9

disabilities, all earmarked as ‘Young Talents’ in their respective disciplines of table tennis, wheelchair basketball or swimming, was heart-burstingly empowering. Players were encouraged to try each other’s sports, as well as being introduced to Boccia and Showdown (a table hockey game for players with visual impairment) prior to the serious competition day. Leo blossomed before my eyes, interacting with confidence and getting right into the middle of all the action. Leo was able to play table Ping pong in Malmo with Leo tennis in a huge stadium, under the Mum and PaCC steering group member, Pippa, tells us all about lights, in between the competition matches. Perhaps a taste of what’s to her son‘s amazing table tennis experience in Sweden come if he can follow in the footsteps of his T21 BTTC heroes Harry, Chris My son Leo (9, Trisomy 21, autism and when I realised that he meant Leo had and Andrew, who not only compete a very wonky heart) has been going to been invited to join the BTTC team at a internationally and win medals, but monthly table tennis sessions at three- day Malmo Parasport Youth are also now qualified coaches – the Brighton Table Tennis Club (BTTC) Edition Games. Yes, Malmo. In first in the world! since early 2017. The sensory aspects SWEDEN! Well, it seemed rude not to. Why not come and get your ping on and the physical internal feedback With flight and hotel funding from with us? T21 Table Tennis sessions really motivate him and he seems to ESSE (an inclusive sports funding take place monthly, on the first have a natural talent. stream within ERASMUS) and a Sunday of the month, 11am-1pm at One day, Tim from the club dropped donation from MENCAP for expenses, The Fitzherbert Centre, 36 Upper me a line, inviting me to bring Leo some hilarious passport photos Bedford Street, Brighton BN2 1JP. along to a workshop for young players attempts ensued, then we were off. The first session is free, it’s £4 after with disabilities. My mind was already What an experience! To be and siblings are welcome. Find us on whirling with the logistics of this surrounded by athletes with various Facebook @BrightonTTC.

Meet our new PaCC Partner PaCC works closely with various struggling to raise their autistic charities and voluntary children. This prompted her to start a organisations across Brighton and group called ASAP to help raise autism Hove that are also involved with awareness within these communities supporting parent carers and their in Brighton and Hove. families. Our newest PaCC Partner is It can be hard for families with Zitha Anaiss, founder of ASAP - autistic children in the BAME Autism Support and Awareness community to socialise because of the Promotion - for black and minority stigma associated with autism, ethnic communities. language barriers and other difficulties. Zitha worked with autistic Often parents end up suffering from their experiences and take part in children in the black and ethnic isolation and depression due to a lack social activities together. To find out minority community for five years. of support and understanding. more about ASAP, please email In this time she met with people ASAP helps parent carers and their [email protected] from the community who were families to meet regularly, exchange 10 • out of amaze MARCH 2018

Paolo makes PaCC influences council rethink on the Happy List Our very own Paolo budget cuts to disability services Boldrini was added to the Brighton and Proposed cuts have been shelved in favour of additional funds Hove Happy List for for short breaks and employment services 2017. Launched last December, the In December, Brighton & Hove City people with special educational needs Happy List honours those people in Council released budget proposals and disabilities to access sustainable our community who help to create that included a £100k reduction in employment, education or training. more happiness. short break/respite services and a We believe we played a significant As well as running our fabulous £50k reduction to the Children's part in these proposed investments. coffee mornings and being part of Disability Service, which offers a social We took key councillors to the city’s PaCC, Paolo helped found the work and early help service. PaCC has two residential respite homes – Drove Migrant English Project which been working tirelessly since then to Road and Tudor House – and provides English lessons for refugees persuade senior officers and introduced them to children and and is also a trustee for Refuge Radio councillors just how essential social young people and staff. PaCC Chair, which runs community projects that care services are for many families Fiona England, says, “Our local help people with social isolation and with disabled children and how much councillors could see first hand the mental health issues. Anyone who unmet need still exists in the city (see impact of having a child with highly has met Paolo will know what a cover and see page 8 on our carers’ challenging behaviour and/or 24/7 warm, caring person he is – and how needs consultation). So we’re physical and medical needs. It’s a much he deserves to be on the list. delighted that the latest budget sobering experience for those who do Well done Paolo! reverses these cuts and instead not live with SEND day to day”. includes additional funds for certain We also worked hard to convey that short breaks and employment services. more needed to be done for young £90k has been allocated to the people with additional needs as they city’s new special school hubs to transition to adulthood - that it’s deliver out of school respite care in unacceptable that 42 per cent of 20 the early evenings, holidays and, as year olds with SEND are not in appropriate, at weekends. Details are education, employment or training, to be confirmed, but we’ve been compared to 7 per cent of their non- Travel training back in focus reassured by Regan Delf and the new disabled peers. Brighton & Hove City Council wants hub heads that this wraparound care Read our full position statement on to work in partnership with parents will also include children and young the budget proposals here: and carers to explore ideas around people with EHCPs in mainstream www.paccbrighton.org.uk/what-we- independent travel training. schools, who are eligible for social do/pacc-position-statements/ There will be an initial focus group care. held on Thursday 15th March in A further £90k has been earmarked Note: The final budget will be agreed just after for the council’s Youth Employability we go to print so may be subject to change. Committee Room 2 at Brighton Town Service (YES) to help more young Hall, to talk to a small group of parents about ideas, barriers and the support required. A wider engagement Make your views count exercise, most likely a survey, will Join the PaCC by emailing [email protected] or tell us what is follow, which we will publicise here concerning you at www.paccbrighton.org.uk/get-involved/give-us-your-views or via our website. You can also join our closed Facebook group at If you have any questions or www.facebook.com/groups/parentcarerscouncil comments, please contact Richard Barker at richard.barker@brighton- hove.gov.uk PaCC’s pull-out supplement is funded by the Department of Education through Contact a Family (now Contact). money out of amaze MARCH 2018 • 11

Universal credit 2 of the household when calculating the number of bedrooms a family needs. So some families will see a cut in the amount of help they get towards housing costs. They may also lose protection from the ‘benefit cap’ if they are no longer counted as having responsibility for a disabled child and do not claim a disability benefit themselves. UC stops if a child is temporarily away from home for more than six months This includes children in hospital. And again, families will be at risk of losing Universal Credit: cuts for help towards rent and protection from families with disabled children the benefits cap. Harsh rules for carers waiting for a The Government says Universal Credit (UC) is designed decision on a disability benefit to make work pay. But for parents whose caring A full-time carer needing to claim UC responsibilities prevent them from working, this isn’t an and waiting for a DLA or PIP decision option. Under UC, out of work households with a will still be required to look for work. disabled child are at particular risk of being worse off, Cuts to payments for disabled parent but we think many working parents with disabled carers children may lose out too. So what’s changed? Under UC, a severely disabled parent caring for a disabled child can either qualify for a carer element payment or Cuts to the child disability addition Limiting payments of the child element an extra payment as a result of their Under UC the principle that low to the first two children in a family own limited capacity for work, but not income families with disabled children This will make it harder for lone both. A disabled lone parent will lose get extra money remains. A child parents to set up home with a new out by around £30 a week. getting the highest rate of the care partner and their kids as a blended In a two parent household, the non component of DLA or the enhanced family. It is also likely to make it -disabled parent may qualify for the rate of the daily living component of harder for social services to place carer element, so the household can PIP will continue to get an additional children with kinship carers, such as claim both a carer’s and an incapacity payment equivalent to the sum paid aunts and uncles. payment. under tax credits. Under UC this No Universal Credit for disabled What about transitional protection? higher amount is also extended to children with ‘Looked After’ status in If you find yourself entitled to less children who are registered severely care or away at school money under UC than you were paid sight impaired. This could mean a loss of up to £600 a before, you get an extra top up The lower disability addition, paid to month for a child at residential school payment. However, if you have to children getting any other rate of DLA or accommodated on a voluntary claim UC for the first time because or PIP, is being cut by more than 50 basis, even if they come home at your circumstances change, or you per cent weekends or for school holidays. If a choose to claim UC and you are As a result, many families are likely to child keeps their ‘looked after’ status, already getting welfare benefits, be worse off. Families without work even for times spent with their family, there is no transitional protection. will be worse off by £1,656 a year for under UC no payments will be made. If And if you are claiming UC, you lose each disabled child. If you have you aren’t sure about your child’s transitional protection, as soon as several children who qualify for the status check with their social worker. you report a change of circumstances. lower disability addition, your family Under UC, once a child has had For advice on UC, contact Money will lose out two or three times over. ‘looked after’ status for six months, Advice Plus (moneyadviceplus.org.uk) they will no longer be counted as part or your local Citizen’s Advice Bureau. 12 • outout of amaze MARCH 2018 fundraising Our Amazing new sponsors We’re delighted to introduce and thank two of our new corporate partners who have each pledged £1000 to support Amaze’s work in our 20th birthday year and beyond.

Pyramid Educational Consultants UK Ltd offers a wide range of consulting services and products for educators and parents of children and adults with autism and related disabilities. PECS supports families and professionals to improve the skills and lives of people with communication difficulties. The Picture Exchange Communication System (PECS) is a tried and tested approach that uses pictures to develop communication skills. More than just using pictures for Madison Web Solutions is a friendly, multi-disciplinary visual support PECS is a system that develops important online agency that specialises in design, branding, communication and social skills. PECS is appropriate for a illustration, web development and marketing. wide range of children and adults with communication Matt Chambers, Madison CEO, explains what they do: difficulties, including autism. “Publicly we’ve spent the last eight years working across many sectors such as charities, local authorities and SMEs in and around the south east producing robust websites, CRMs and digital marketing campaigns. But that’s only half our story. Behind closed doors we’ve quietly built a reputation among some of the UK’s most creative agencies, producing white-labelled websites for international law firms, high-street banks, airlines, recruitment agencies, and some of the world’s largest retailers. Matt explains why Madison got involved with Amaze: “We believe people are colourful and seeing disability as a ‘different ability’ is our . We always strive to harness peoples’ true potential, which has had great results! We hope that being publicly involved with Amaze will Louise Hotchkiss, Client Services Manager at PECS, told encourage people who really want to make a change to us why they decided to be a sponsor: choose us when they commission a new web agency, “As a local company we were thrilled to be given the allowing us to continue to develop this approach and give opportunity to support Amaze and the incredibly important more opportunities to everyone. work they do. Both PECS and Amaze are trying to achieve Find out more at www.madisonsolutions.co.uk the same end goal, that of helping children with additional needs to be the best they can and to have the most fulfilling lives possible. To find out more, visit www.pecs-unitedkingdom.com

Join Madison and PECS and be an Amazing corporate sponsor We’d like to find more corporate sponsors for our 20th birthday year. If you are a local company or know a company who might like to get involved and enjoy many mutual benefits, contact Nicky B on 01273 234014 or email [email protected]. And if you’d like to find out more about our work, watch our ‘Generation Amaze’ video at: amazebrighton.org.uk/resources/our-videos/ leisure out of amaze MARCH 2018 • 13

Rate and review Compass Card offers with our app We’ve just added a Trip Advisor-style feature to our Compass Card app that lets you ‘star rate’ and comment on Compass Card offers. It’s very simple; you just go to the individual listing on the app, then touch the star rating at the top, touch the number of stars you want to give and add your comment. You’ll need to install the latest version of the app to get the new feature. If you haven’t got the Don’t miss out on Compass Compass Card app already, search Card freebies ‘compass card’ in the App Store or Google Play and download the West The 189 regular offers on the Compass Card are just Sussex or Brighton and Hove part of the story; behind the scenes, the Compass version. Team also gives away hundreds of free tickets to Over 180 Compass Compass families every year. Card offers The Compass Card is still expanding. We regularly give away tickets to was amazing and as parents it was At the end of January, there were Komedia’s Sundae Club, local charity joyous to watch her laughing and 189 regular Compass Card offers at the ABC Fund provides us with tickets relaxed. The show was funny, silly and 303 venues across Sussex and for trips (including the Father engaging... a real hit!” said one beyond. Recent additions are the Christmas canal trip on Chichester family after Circus Starr in January. Attenborough Centre for the Canal) and we gave away 300 free Here, another parent gives the Creative Arts (the old Gardner tickets for Circus Starr shows in Father Christmas canal trip in Centre); a discount on a range of January. There are plenty of one-offs December the thumbs-up. “I just activities at Chailey Heritage; free too, including free theatre shows, wanted to say a big thank you for the carer tickets at five Sussex Past Amex stadium tours and much more. canal trip. My daughter had such a venues; and a generous 20 per cent Free tickets lovely time and she smiled the whole discount at Hove café, Viva Vinyl. can make a real way through. The volunteers on board While the weather’s still difference to were great and it was so well unpredictable, it’s well worth the families we organised. Picking up Father Christmas checking out the quirky museums work with. Apart along the way was just lovely and the run by Sussex Past. These cover both from making an looks on the children’s faces was East and and include a outing with the magical. I had one very happy little new audio described trail, listening family affordable, multiple ticket girl when we left.” bench and sound installation in the giveaways also mean you can be To keep up to date with Compass Gun Garden at Lewes Castle; confident you’ll be among families Card giveaways, make sure you open England’s longest medieval water with similar experiences. our e-newsletter, Compass News B&H, filled moat at Michelham Priory “Just wanted to say a big thanks for on a Thursday evening – and if we House and Gardens near Hailsham; the tickets we received for the Circus don’t have your email address, just and Marlipins Museum in Shoreham, Starr show. We enjoyed it so very drop us a line at where you may be surprised to much and it was brilliant to be [email protected] or call discover the seaside town’s unique surrounded by families like ours. [Our the Amaze helpline on 01273 772289. role in the UK’s silent film industry. daughter], who has autism, thought it 14 • out of amaze MARCH 2018 young people Spotlight on our peer supporters Meet some more of our fab Amazing Futures volunteers, and find out why they decided to be peer supporters.

Our peer support volunteers continue Mymarc art club. She’s interested in to do great work supporting young working with young people. people with additional needs, both Danielle became a peer supporter to one-to-one and at our Amazing gain new experiences and skills, and Futures activity groups. meet new people. She recommends Continuing from our last issue, peer support as a way to make new we’d like to introduce you to some friends and help sort problems. more of these fab volunteers—meet In her spare time, Danielle enjoys Danielle,and Sammy! creating art, playing computer games and spending time with her friends. If Danielle ruled the world everyone would have to abide by two rules:  Have peace and tranquillity is a good learning experience, and  Trust people you meet some very people, and it looks good on your CV too! Sammy, 19 Sammy has a wide range of Sammy is currently studying Music, interests; as well as playing guitar Performing Arts, and History at 6th and piano, he’s a keen sports player, form college. He’d like to work in the enjoying both football and cricket, music industry when he’s older, and he also likes to play a wide variety preferably as a session musician or of board games. song writer. If Sammy ruled the world, there’s Danielle, 24 Sammy became a peer supporter just one rule everyone would have to As our Amazing Futures intern last because he likes helping others, and follow: year, Danielle helped get the peer felt that as Amaze had helped him  Everyone is equal, and any support project off the ground. She’s over the year he wanted to repay the discrimination of any sort is currently volunteering with Carousel, favour. forbidden. the Oska Bright film festival and the He says becoming a peer supporter

Brandon lands his first job Our warmest congratulations to our hearing about it through Amaze, Amazing Futures peer supporter enabling him to travel to and from his Brandon—who we featured last job by himself. You can see him in his issue—on successfully getting a part- new Screwfix uniform on the right. time job with Screwfix in Hove! We wish you all the best, Brandon! Brandon has worked hard to prepare for work, growing his skills and confidence through volunteering Interested in Amazing Futures peer support? as a peer supporter with our Amazing If you’re 18+ with or without additional needs and would like to join our team Futures young people’s project. of Peer Supporter volunteers, or if you’re 14-25 with special educational needs He also undertook Independent or a disability and would like to have a Peer Supporter, please call Sue Winter Travel Training with Grace Eyre, after on 07482 111648 or email [email protected] young people out of amaze MARCH 2018 • 15

Rocket Artists present Life skills at Downs View Downs View Life Skills College (DVLSC) in Patcham, Art by Johnny Brighton, is for adult learners (19+) with a range of A group of artists with and without needs, but particularly young people with severe learning learning disabilities is launching a free, difficulties (SLD), profound and multiple learning difficulties (PMLD) and SLD with autism. The college aims inclusive exhibition on World Autism to supports adult learners in a functional, practical way, Awareness Day, featuring art by Johnny closely based on their needs, interests and choices. Carroll-Pell, a young autistic artist. Adrian Carver, headteacher, explains: “The life skills part of our curriculum reflects the 'Preparation for Adulthood' themes of employment, independent living, friends, relationships and community, and good health. Within these themes, we develop some core aims for individual young people based on their Education, Health and Care Plan, and their aspirations for their future. We want to make each young person as independent as possible in relation to their needs. This might mean they focus on learning to care for themselves or develop their skills in relation to work or volunteering.” Life skills classes at DVLSC run alongside more traditional classes that help students develop core skills in communication, functional literacy and numeracy, Johnny painting ‘Two Circus Figures’ at his first session in The Rocket Artists Studio. PSHE, employability, citizenship, creative arts and more. The college has access to great facilities too, as Adrian Johnny comes from a creative background - he’s the son of explains: “We’re located on part of the site at Patcham our patrons, screenwriter Angela Pell and writer and House School. We have dedicated classrooms, quiet producer Henry Normal - but it wasn’t until he began going rooms and a physio room, as well as access to specialist to the MyMarc sessions at Amaze, run by Sue Winter, that rooms in the school for food technology, ICT, etc. And he got the taste for art. It became a passion and through there are also outdoor areas for leisure and to develop the MyMarc sessions he heard about The Rocket Artists. work skills such as grounds maintenance. All our Johnny’s mum, Angela, told us both programmes have a classrooms have computers, interactive whiteboards and real respect for the young people who attend: “They don't iPads, and we use assistive technology such as Eye-Gaze see them as 'kids with challenges doing a bit of art'. They to support learner engagement. treat them as artists, no different to any other and they are “We also have a flat in Hove that helps to develop never made to feel any less because of their disabilities.” independence; it has a kitchen, classroom, bedsitting Johnny’s love of painting big pictures first began at room and bathroom, and a garden that the students MyMarc, and he’s been painting giant figures ever since. maintain.” “We now have a wall at home covered in B&Q tarpaulin If you would like further information, contact Adrian with plastic sheeting on the floor (akin to Dexter’s ‘kill Carver at Downs View on 01273 601680. room'!) where he loves to express himself.” The exhibition aims to provide an opportunity for people to connect through a celebration of art, inclusion and diversity. It will also be in support of Amaze—see our website for more information. Alongside the vibrant exhibition, there’ll be a programme of events, including Johnny’s parents launching their book about living with autism - 'A Normal Family'- and autistic adult, Ros , giving a talk. When: April 2nd-29th, Wednesdays - Sundays 11am-5pm Where: Phoenix Brighton, 10-14 Waterloo Place, BN2 9NB Email [email protected] for more information. 16 • out of amaze MARCH 2018 news

Amaze workshops We’re running lots of really useful workshops in Brighton over the coming spring and summer terms…

Decision making - Thurs 15th March 9.30am-12.30pm, Conference Room, Community Base Can parents still make decisions for their child once they are an adult? Phil Warford from Renaissance Legal guide you through who can make decisions on behalf of another person according to the law. Personal Independence Payments Amazing Futures team make some (PIP) - Thurs 7th June , 9.45am to 1pm, Conference Room, Community noise for Ed Sheeran Base. Four of our Amazing Futures Peer Global is supporting Amaze and our Lizzie from Amaze explains how Supporters - Hayley Jones, Danielle six partner organisations – Extratime, claiming PIP is different from DLA Garratt, Hannah Fox and Eliph Hadert Pebbles, T21, mASCot, Barnardos and how to involve your son or – enjoyed some free tickets given to LinkPlus and Sweetpeas to provide daughter in their claim so they are Amaze by Global’s Make Some Noise, drop in sessions, outings and ready for the face to face interview. for the Jingle Berry Ball concert at the activities for hundreds of disabled Disability Living Allowance (DLA) - O2 in London where the highlight was children and families in Brighton and Thurs 14th June, 9.45am to 1pm, seeing Ed Sheeran performing. Hove during the coming year. Conference Room, Community Base. Get ready for your next DLA review ’What’s out there?” Information Fair for people with with Lizzie, our benefits guru will learning disabilities help you be prepared to put in a Tuesday 10th July 2018 at King Alfred’s Leisure Centre really strong claim. Come along to find out what is on offer for adults with EHCP Annual Reviews (up to Year 8) learning disabilities and young people in transition to May/June 2018, day TBC adulthood. There’ll be lots of stalls and activities. 9.30am-12.30pm, Amaze Meeting Get this date in your diary if you are a young person Room, Community Base. Find out approaching adulthood or their parent. how your child’s annual review should work and prepare to get the most out of the next one. EHCP Annual Reviews (Year 9 and Amaze helpline: above)- July 2018 day TBC, 9.30am- For information, advice and support, call 01273 772289. 12.30pm, Amaze Meeting Room, Monday to Friday, 9.30am to 2.30pm Community Base. How should your child’s annual Amaze review change from Year 9 onwards Community Base to start looking at their future and 113 Queens Road preparing for adulthood? Brighton BN1 3XG T: 01273 772289 E: [email protected] All our workshops are free. To book, W: www.amazesussex.org.uk call the helpline on 01273 772289 or email [email protected] Amaze Brighton and Hove • UK Company Limited by Guarantee no: 3818021 • Registered charity no: 1078094