Special Needs Webguide

A guide to information and support services related to special needs.

A-Z of specific conditions

Attention Deficit Disorder

• ADDISS - information and support

• Angelman Syndrome Support Education and Research Trust - information, helpline, newsletter

Autism, Mutism and Asperger syndrome

• Ambitious about Autism - the national charity for children and young people with autism and their families

• Anna Kennedy Online - offers information, training and advice, and supports families with autism

• Puzzle Centre - promotes and delivers early intervention for young children with autism and other communication difficulties

• SMIRA - resources and information on selective mutism

Cerebral palsy and hemiplegia

• CP Sport England - promotes sport and physical recreational opportunities for people with a disability, especially cerebral palsy

• Conductive Education - offering full time and part time specialist provision for children with cerebral palsy

• Scope - helpline and factsheets for parents

Cockayne Syndrome

• Amy and friends - support and information for parents

Cystic fibrosis

• Cystic Fibrosis Trust - information, advice, support and funding

Down syndrome

• Down Syndrome Education - educational opportunities for children

• Down's Heart Group - information about associated heart conditions

• Down's Syndrome Association - information by life stages, support and helpline

Dyslexia and dyspraxia

• Dyslexia Action - a guide for parents and carers supporting children affected by literacy difficulties and dyslexia to navigating the changes in SEN and disability provision

• Dyslexia-SpLD Trust - a collaboration of voluntary and community organisations funded by the Dept of Education to help children with dyslexia/SpLD succeed in school

• Dyspraxia Foundation - books, suggestions, teen newsletter, and adult support group

Epilepsy

• Daisy Garland Trust - focuses on children (up to 12) with difficult-to-control epilepsy

• Epilepsy Action- information and support for children, adults and families

• Young Epilepsy - information and resources for young people

Rett syndrome

• Rett UK - information and support

Sickle cell

• Sickle Cell Society - information and counselling

Spina bifida and hydrocephalus

• Shine - information and advice, including a helpline

Tourette's syndrome

• Tourettes Action - information and support

Turner syndrome

• Turner Syndrome Support Society - information and support

General

Brain injuries and conditions

• BIBIC (British Institute for Brain Injured Children) - offers families practical help

• Brain injury hub - information resource from The Children's Trust

• Brainwave - home-based programme for children with brain injuries/genetic conditions

• Cerebra - support and information for families of children with brain-related conditions

• Child Brain Injury Trust - provides information and support for the effects of 'traumatic' injury on a child's developing brain

• Child Growth Foundation - information about conditions causing growth problems

• Snowdrop - provides neuraldevelopmental therapy for conditions including Cerebral Palsy, Autism, genetic conditions, developmental delay and brain injury

Chromosome disorders

• SOFT - support for families affected by Patau's syndrome, Edwards syndrome, partial Trisomy, mosaicism and related disorders

• Klinefelter's Syndrome Association UK - information and support

• Unique - information, networking and support for anyone affected by a rare chromosome disorder, their families and the professionals who work with them

• Genetic Alliance - alliance of charities supporting children and families affected by genetic disorders

Hearing impairments

• Elizabeth Foundation - helping deaf preschool children learn to listen and talk

• National Deaf Children's Society - help and support

• Heartline - support and help for children with congenital heart conditions and their families

• Sense – support and information for families of children and adults who are deafblind or have multi-sensory impairments

Learning difficulties and special educational needs

• Easyhealth - accessible health information for parents, supporters and carers of people with learning disabilities, and people with milder learning disabilities themselves

• IPSEA - helping children with special educational needs and/or disabilities get the right education

• Mencap - support and information for families and carers of children with a learning disability

• SOS!SEN - free confidential telephone helpline for people looking for information, advice and support

• Special Educational Needs Advice Centre - (SENAC) confidential advice line for parents looking for information on statutory special educational needs provision in Northern Ireland

• Support SEND Kids - a charity that connects SEND families, professionals and lawyers

Limb conditions

• REACH - support and advice for children with hand or arm deficiencies, and their parents

• Steps - support for parents of children affected by lower limb conditions

Speech and language impairments

• Afasic - supports children with speech, language and communication impairments

• British Stammering Association - national organisation for adults and children who stammer, run by people who stammer

• Communication Trust- coalition of nearly 50 voluntary and community organisations with expertise in speech, language and communication

• Michael Palin Stammering Centre - runs the UK's largest specialist service exclusively dedicated to the diagnosis and treatment of children who stammer

• National Literary Trust - downloads and videos for childen on receptive language difficulties

• Royal College of Speech and Language Therapists - promotes and provides information on speech and language therapy

Visual impairments

• Living Paintings - a free library of Touch to See books bringing to life the visual world for blind or partially sighted people

• LOOK UK - supporting parents and carers of children with a visual impairment

• RNIB Guidance on Teaching and Learning - primarily for practitioners, concerning the support and education of children and young people with vision impairment

• Sense – support and information for families of children and adults who are deafblind or have multi-sensory impairments

• VICTA Visually Impaired Children Taking Action - support for blind and partially sighted children, young people and their families

Resources

Befriending

• Care for the Family - a national charity supporting family life in the good and tough times.

• Disabled Parents Network - for disabled people who are parents or hope to become parents

Education

• CReSTed - register of schools which provide support for children with specific learning difficulties

• IPSEA - provides free legally based education advice

Equipment and grants

• ACE Centre - provides help with assistive technology

• Cerebra - grants and help for children under 16 with neurological conditions

• Department for Work and Pensions - benefits information

• Disability Grants - guide to different grants available

• Family fund - grants for families with severely disabled or ill children aged 17 and under

• Fledglings - identifies and supplies practical, affordable products to help with everyday life

• Hearts and Minds - recycles old mobiles to raise funds to help families affected by autism

• Living made easy - advice from occupational therapists about equipment for children and young people with disabilities

• Meru - designs and manafactures bespoke equipment for children and young people with disabilities

• New Life - information and grant services for funding equipment

• Remap - a charity with a network of skilled volunteers who design and custom-make equipment free of charge for people with disabilities

• Whizz-Kidz - provides mobility equipment, training and advice

Experiences and opportunities

• Activity Alliance - national charity for developing sport for disabled people in England

• Kangaroos - runs activities in mid Sussex for children and young adults with learning disabilities

• Sense Toys - educational toys and games for children with special needs

Professionals

• Association of Child Psychotherapists - the main professional body for psychoanalytic child and adolescent psychotherapists in the UK

• British Association of Play Therapists - advice for parents of children with emotional and behavioural difficulties and listings of registered play therapists

Other useful links

• Bliss - support and care to families of premature and sick babies across the UK

• Child Death Helpline- for anyone affected by the death of a child, from prebirth to adult

• OT for Kids - occupational therapy for children with SEN

• SNAP Childcare - specialist recruitment agency for special needs nannies and care workers

• Young Minds - works to improve young people's mental health; information and helpline for parents

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