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Family Voice for Families Who Have a Child with a Disability Or Additional Need Aged 0-25 Years

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Family Voice for Families Who Have a Child with a Disability Or Additional Need Aged 0-25 Years Family Voice For families who have a child with a disability or additional need aged 0-25 years Participate Find out what’s going on, Have a say, Make a difference Autumn 2014 Aysha & Kalani There are lots of changes happening at the moment to services for children with a disability or additional need. The new Education, Health and Childcare plans are now in force and there are lots of changes to the way information, advice and support is being provided to parent carers and children and young people with a disability or additional need - these changes are due to the SEND reforms. Please take a look through our newsletter to find out more information about all of these changes. In this issue Update on SEND reforms New Information, Advice & Support Service Independent Supporters Find out more about Shropshire Cerebral Palsy Society Telford & Wrekin News Welcome and Update from PODS Hello everyone and welcome independence (banking, The main focus of our back to our termly newsletter. travelling). This work is participation work for PODS continuing with our Parent Rep Parent Carer Forum has been We hope that you have had an team working on the Personal around the SEND Reforms which enjoyable summer break? Over Budget and RAS Project with came into effect on 1st the holiday you should have Martin Donkin from InControl. September 2014. received our Annual Report and our newly developed In addition we held our Picnic in We would like to thank all our Information Pack – we hope the Park. Even though the sun parent carers who have been you have found them useful – forgot to shine, the parents and involved in the new process they provide a range of children enjoyed craft-based including work on the Local information on our projects activities and the nature walk Offer, EHCP Plans, RAS/Personal including Passport for Life, Face hosted by John Trubshaw and Budgets – as we begin this new 2 Face, opportunities to get his assistant Tanya from Friends journey together, we will involved in our work and dates of Telford Town Park. continue to involve you for our Parent Carer Family throughout the process. Groups at Hadley or Dawley. Based on feedback and requests from you, a Sleep Workshop by In line with future plans around On Friday 27th June we held Cerebra was held on 1st the SEND reforms we are keen to our Annual Conference and September at HLC. This was a develop further parent carer AGM which was enjoyed by big success and many parents empowerment and culture parent carers and professionals reported back how useful it was change – through further demonstrating working to them, with several parents engagement with parent carer together. now accessing specialist support community and professionals. via Cerebra. We will host further We have included an workshops in the future so The new family centred approach infographic highlighting key other families can access this of the reforms will focus on points from the day. We service. The next newsletter will outcomes and sharing of would like to specifically thank, have a parent review of their positive experiences. Cllr Paul Watling, Karen Levell, individual experience of this Diane Partridge, Sara Vale, service. Clear pathways and procedures Chris Murray, Julie Edmunds will become available as we and our guest speaker Sherann The PODS Committee members move forward with the SEND Hillman (Co-Chair of Parents in and Parent Reps continue to reform journey, together with a Partnership, Stockport). attend meetings to ensure that range of partners – please join the voices of our parent carer us on this important journey and We thought it was important to community are heard, addressing get involved to help us: support parent carers issues around SEND Reforms, “Together we can throughout the holidays Emotional Health and Wellbeing, make a Difference”. and we continued with regular Disabled Childrens Charter social media updates and held (Health), Culture Change, Best Wishes a Family Group in August where Wheelchair Services, Personal On behalf of PODS Parent Carer we discussed personal budgets Budgets and Short Breaks. We Committee – ideas for use of budgets also provide regular reports to included funding 1:1 support Strategic groups including Please visit our website at for the child to access Children, Family & Young People www.podstelford.org/ mainstream or Ican2 services, Board and Aiming High for SEND swimming lessons, or 0-25 years. Telford & Wrekin News Telford Tommy Awards 2014 Now is the time for you to Caring for or volunteering Sports, hobbies, arts and nominate children and to help others culture young people for a Telford Fundraising Business, innovation and Tommy 2014. Triumph over personal enterprise adversity Acting as a ‘voice’ for The Telford Tommy is Bravery and courage other children and young recognition for children and Involvement in people and young people who have made Raising the positive a difference in their community community projects Contribution to school, profile of children and or improved and enriched their young people own or others lives. training or college Learning in non formal Please visit environments Successful children, young www.telford.gov.uk/ people and groups will receive telfordtommys or ring the a certificate of recognition. Community Engagement Team on 01952 382131 to find out more and how to nominate. Nominations close on 23 November. Last year we received nominations from teachers and tutors, youth and community workers, children and family locality services, social services CHRISTMAS FUN FOR ALL staff, council staff who work with groups of young people, Choice of either of following: voluntary and community £5 per Family (places must be groups, dance and sports groups, charities, parents and booked) carers and a wide range of Council staff. Animal Man at Park Lane Centre, Woodside (70 places) Do you know a child, young Monday 22nd December: 1.30pm-3.30pm person or group who deserve to be recognised? Jungleland, Trench Lock, Trench This is a big ‘pat on the back (150 places) for children and young people’ Tuesday 23d December: 6.15pm-8pm and we would encourage you (Food can be purchased until 7pm) to take part and nominate. For further details or for bookings, please contact PODS on 07775 342092 Last year we recognised over [email protected] 200 children and young people and this year we would like to recognise more. Award categories include: Telford & Wrekin News Focus on Down Syndrome Lian’s Story didn't expect that had One week later blood tests anything to do with us, he confirmed Down Syndrome. invited me in and told me that Not too long later after Dougie’s heart readings were successful keyhole surgery our 'extreme' I had no idea what that boy was home and happy as meant but I didn't need to ask usual but now feeding well and because he gave me a sheet to gaining weight nicely. take home with me 'signs of heart failure'. I didn't need to ask Once the initial shock and fear anymore and he told me a doctor had slowly worn away I tried to from Birmingham Children's come to terms with the Hospital would contact me the enormity of the situation, then I next day to arrange a meeting, realised it’s not that enormous. one last thing, he asked, does We all have to work a bit harder Dougie stick his tongue out a to get to where we need to be lot..... what a weird question he's Dougie was born in but we have our boy, he’s a baby all babies do, but I September 2012 at a healthy - he’s happy, we have googled 'why did my doctor ask if whopping 10lb 110z and 10 him and he has us, what more my baby sticks his tongue out a days late. The first 5 months could a family need!! lot' and I didn't like what I saw, of his life were pretty average the main answer seemed to be a but he was struggling to gain concern for Down Syndrome. Nearly 19 months on and life is weight sufficiently and we pretty normal for us all, Dougie were back and forth to It couldn't be that because is doing well and I am finding hospital trying different things Dougie had been seen by great strength and comfort in with no success to fatten him countless doctors and doing my best to raise up and even saw a dietician. Paediatricians and surely awareness about Down someone would have noticed Syndrome, along with my friend During one of our routine ‘that such a huge thing!! 2 days Hannah we have become milk isn’t working later we were at Birmingham appointments’, Dougie was parent advocates for the ‘Lose Children’s hospital where a suffering from a nasty cold so The Label’ campaign which cardiac surgeon explained that the consultant listened to his promotes person first language, Dougie had 2 holes in his heart chest and this is where including magazine articles and and this was more than likely why everything went into radio interviews. We certainly he was so tired whilst feeding overdrive, after listening to his don’t want people to be scared etc. One would need surgery, the chest the doctor asked me if to talk about Down Syndrome, other wouldn’t. OK, one shock anyone had ever mentioned a scared in case they say the down, then came the next one, heart murmur to me before.... wrong thing! he explained that with this heart no! So across the hospital I defect it was most prevalent in dashed with my little boy for babies who had Down Syndrome him to have a chest x ray and and asked if we had had any ECG.
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