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Really Useful Information for Parents of Children with Additional Needs in Kirklees

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Really Useful Information for Parents of Children with Additional Needs in Kirklees PCAN PAGES Really useful information for parents of children with additional needs in Kirklees 1 A message to parents and carers Looking after a child with disabilities or additional needs can be the most challenging thing a parent faces. It can also be the most rewarding. Parents and carers can be plunged into a whole new world of disability, medical jargon, special education, equipment and gadgets when they learn their children have additional needs. They often need to learn new skills, learn how to be resourceful, how to negotiate and to communicate better. Parents face a range of new issues and experiences, emotions and worries. They can find it difficult to find the information and support that will help them. PCAN PAGES has been written by parents for parents to help you know where, how or when to get the support and information and activities you need for yourself or your children. If you are a parent, or carer, or both, PCAN PAGES can help you. Much of the information here relates to carers and recognising that you are a carer, as well as a parent, acknowledges the extra responsibilities of looking after a child with additional needs. PCAN PAGES brings together in one place, information about the services and support available from Kirklees Council, local NHS trusts, voluntary groups, charities and other organisations, as well as national sources of help and information. Sometimes the sheer amount of information can seem daunting. You may not be involved with all these services or need to access all these areas of support. You can feel free to use as much or as little of the information as is right for you! The information is as accurate as possible at the time it is published but some information will inevitably become out of date. It is best to check this out with the contacts provided. An on-line version of this guide will soon be available on PCAN’s website shown below and this will be regularly updated. Thank you to all the parents and service providers who have contributed to this guide. Your help is very much appreciated. If anyone using this guide finds information that is out of date, or knows anything that should be here that isn’t, then please let us know. Your continued support would be much appreciated by all the families who use this resource. PCAN pages can also be accessed on our website www.pcankirklees.org where individual pages can be downloaded and printed. We will ensure that the information on our website is regularly updated. You can find out more about PCAN by visiting our website or calling us on 07754 102336 or e-mail us at [email protected] 2 Contents A message to parents and carers 2 Contents 3 Common Terminology and Abbreviations 8 Professionals You Might Meet 9 Hints and Tips – from Parent to Parent 12 Activities and Leisure 13 Action for Children 13 Central Starts Youth Club 15 The Cinema Exhibitors' Association CEA Card 16 Crow Nest Adventure Playground 17 Duke of Edinburgh’s Award Team WACKY 18 Full Body & The Voice 19 Huddersfield Actionnaires (Action for Blind people) 20 Huddersfield Sports Centre Climbing Wall – Rock Monkeys 21 Kirklees Active Leisure 22 Kirklees Disabled Sports Club 25 Organised Chaos 26 The Ponderosa Centre 27 Riding for the Disabled Association Huddersfield Group 28 Riding for the Disabled – Middleton Park Equestrian Centre 29 Riding for the Disabled – Wakefield RDA 30 7th Huddersfield Clayton West Scouts 31 Shabang! 32 Special Olympics North Kirklees Gymnastics Club 33 Try Cycling (Kirklees Active Leisure) 34 VI People Swimming Group 35 Young Peoples Activity Team (YPAT) 36 3 Childcare, After Schools Clubs and Holiday Playschemes 37 Cool2Care 37 Kirklees Family Information Service 38 Complaints, Comments and Complements 39 Kirklees Council Complaints/Comments/Compliments 39 PALS 41 Condition Specific Support: ADHD 42 ADD/ADHD Support 42 Condition Specific Support: Autism 43 Dewsbury & District Autism Support Group 43 The Huddersfield Support Group for Autism 44 Kirklees Autism Outreach Service (KAOS) 45 North Kirklees Autism Support Group & Friends 46 Condition Specific Support: Cerebral Palsy 47 SCOPE 47 Condition Specific Support: Down Syndrome 48 Huddersfield Down Syndrome Support Group 48 Condition Specific Support: Feeding and Nutrition 49 Living with Reflux 49 Also see: Specialist Paediatric Dietician (Huddersfield and Calderdale) 102 4 Condition Specific Support: Sensory Impairment 50 Kirklees Deaf Children’s Society 50 Sense Specialist Children’s Service 51 Service for Children with Sensory Impairment 52 Also see: Huddersfield Actionnaires (Action for Blind people) 20 Hutchinson Deafblind Trust 77 VI People Swimming Group 35 Early Years 53 Ellerslie Child Development Centre 53 Support for pre-school children - Portage 54 Also see: Shabang! 32 Education 55 Advisory Centre for Education 55 Calderdale and Kirklees Careers 56 IPSEA (Independent Parental Special Education Advice) 57 Kirklees Parent Consultation Group 58 Kirklees Parent Partnership Service 59 The SEN Assessment and Commissioning Team (SENACT) 60 Support for 3-7 year olds - Portex 61 Transition 62 Emotional Wellbeing 63 Sibs 63 Young Minds 64 Also see: Carers Gateway 87 Kirklees NHS Health Trainers 95 Equipment, Adaptations and Resources 65 Fledglings 65 Pre-school Learning Alliance 66 William Merritt Disabled Living Centre and Mobility Service 67 Also see: Hutchinson Deafblind Trust 77 5 Finance and legal 68 Benefit Enquiry Line 68 Carer’s Allowance 69 Direct Payments 70 Disability Benefits 71 Disability Grants 72 Disability Living Allowance (DLA) 73 Grants, funding organisations, charities 75 Hutchinson Deafblind Trust 77 Independent Living Team 78 Kirklees Citizens Advice (Formerly Citizens Advice Bureau or CAB) 79 Motability 80 Turn2us 81 VAT exemption for equipment and services for disabled people 82 Wills and Trusts 83 Also see: Action for Carers and Employment (ACE) 84 Help for Parents and Carers 84 Action for Carers and Employment (ACE) 84 Care for the Family 85 Carers Direct 86 Carers Gateway 87 Children with a Disability Team (CWDT) 88 Contact a Family 91 Gateway to Care (Social Services Information) 92 Kirklees Family Information Directory 94 Kirklees NHS Health Trainers 95 Princess Royal Trust for Carers 96 Also see: Action for Children 13 Kirklees Parent Partnership Service 59 Sibs 63 Hospital and Community Health 97 (to include nursing, health visitors, hospitals, dieticians and dentists) Locala Dental Care 97 Children’s Learning Disability Nursing Team (Kirklees) 99 Mid Yorkshire Hospitals NHS Trust - Children’s / Paediatric services 100 Specialist Paediatric Dietician (Huddersfield and Calderdale) 102 Also see: Speech and Language Therapy Service 117 6 Local Voluntary Sector Support Groups 103 PCAN 103 Also see: Dewsbury & District Autism Support Group 43 Huddersfield Down Syndrome Support Group 48 The Huddersfield Support Group for Autism 44 Kirklees Deaf Children’s Society 50 Kirklees Parent Consultation Group 58 North Kirklees Autism Support Group 46 Out and About 104 Access Bus 104 The Blue Badge Service 105 Disabled Person’s Travel Pass 107 Railcards 109 The Rough Guide to Accessible Britain 110 Short Breaks, Respite 111 Crossroads Care in Mid Yorkshire 111 The Forget Me Not Trust Children’s Hospice 112 Hollybank 113 Orchard View 114 Also see: Children with a Disability Team (CWDT) 88 Cool2Care 37 Direct Payments 70 Independent Living Team 78 Young Peoples Activity Team (YPAT) 36 Speech, Language and Communication 115 ACE Centre North 115 Speech and Language Therapy Service, 117 7 Common Terminology and Abbreviations Acute The short-term crisis phase of an illness. ADHD Attention Deficit Hyperactive Disorder ASD Autistic Spectrum Disorder BPD Broncho-Pulmonary Dysplasia CA Carer’s Allowance CDC Child Development Centre CF Cystic Fibrosis CHD Congenital Heart Disease Chronic Lasting for a long time CIN Review Child in Need Review CMO Community Medical Officer (School Doctor). Congenital Present at birth. CP Cerebral Palsy Cranial Relating to the skull. CSP Coordinated Support Plan CTC Child Tax Credits DCD Developmental Co-ordination Disorder DLA Disability Living Allowance. DS Down's Syndrome Gastrostomy A surgical opening into the stomach from the abdomen, to enable a feeding tube to be passed. HV Health Visitor IEP Individualised Educational Plan IS Income Support MD Muscular Dystrophy Naso-gastric tube A tube that is passed from the nostril, down the back of the throat into the stomach, then secured in place to the cheek by tape. This may be used to give feeds or top-up feeds not taken by mouth. OT Occupational Therapist PHN Public Health Nurse Prognosis The forecast of the course and probable outcome of a disease or condition. RON Record of Needs SEN Special Educational Needs SLT Speech and Language Therapist VI Visually Impaired WTC Working Tax Credit 8 Professionals You Might Meet Audiologist Measures your child’s hearing Cardiologist: A doctor who specialises in looking after children's hearts. Paediatric Cardiac Surgeon A doctor who specialises in operating on children's hearts. Clinical psychologist A clinical psychologist is a health professional who helps people with specific problems with learning or behaviour difficulties Communication support A communication support worker works alongside teachers to worker provide sign language support for young deaf children in nursery or school. Community Care Officer* *See Social Worker Dietician A dietician is a health professional who gives advice about nutrition and swallowing or feeding difficulties. Educational psychologist An educational psychologist is qualified teacher who is also trained as a psychologist. They help children who find it difficult to learn or to understand or communicate with others. They can assess your child's development and provide support and advice. General practitioner (GP) A GP is a family doctor who works in a surgery either on their own or with other GPs. Your doctor deals with your child's general health and can refer you to clinics, hospitals and specialists when needed.
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