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 Brighton and Hove. 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.