Special needs resources - a guide to the web

 

A-Z of specific conditions

Attention Deficit Disorder: ADDISS - information and support

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

Autism and Asperger syndrome

• Ambitious about Autism - the national charity for children and young people
• National Autistic Society - information, support and schools
• Peach - promotes early behavioural intervention for young children with autism
• Talk about Autism - a safe and friendly online community

Cerebral palsy and hemiplegia

• CP Sport England - promotes sport and physical recreational opportunities for people with a disability, especially cerebral palsy
• HemiHelp - support for children and young people with hemiplegia (hemiparesis)
• Scope - helpline and factsheets for parents

Cockayne Syndrome: Amy and friends - support and information for parents

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
• Down's Syndrome Scotland - information and support

Dyslexia-SpLD Trust (The) - 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, a teen newsletter, and an 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

Fragile X Society - support, information and helplines for families, plus promotion of research

Klinefelter's Syndrome Association UK - information and support

Rett UK - information and support

Sickle Cell Society - information and counselling

Spina bifida and hydrocephalus: Shine - information and advice, including a helpline

Tourettes Action - information and support

Turner Syndrome Support Society - information and support

 

General

Brain injuries and conditions

• BIBIC (British Institute for Brain Injured Children) - offers families practical help
• 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 of 'traumatic' injury on a child's developing brain

Child Growth Foundation - information about conditions causing growth problems

Climb - information for families of children living with inherited metabolic conditions

Chromosome disorders

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

Learning difficulties / disabilities 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
• HE Special - for families who home educate children with special educational needs
• Mencap - support and information for families and carers of children with a learning disability
• National Parent Partnership Network - statutory services offering support to parents and carers
• Netbuddy - tips and bright ideas from parents, carers, teachers and therapists
• Partnership with Parents - advice for parents
• 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

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
• I CAN - supports speech, language and communication development in children
• Signalong - provides resources and training in visual communication for children with communication difficulties

Visual impairments

• Calibre Audio Library - provides audio books to those with sight impairment and dyslexia
• Living Paintings - a free library of Touch to See books bringing to life the visual world for blind or partially sighted people
• Load2Learn - accessible textbooks and images to support dyslexic, partially sighted or blind learners
• LOOK UK - supporting parents and carers of children with a visual impairment
• National Blind Children's Society - help and info for children and young people with visual impairments, and their families
• Talking Books for Children - a free library of audio books for children, from the RNIB
• VICTA Visually Impaired Children Taking Action - support for blind and partially sighted children, young people and their families

 

Resources

Befriending

• Contact a Family - information on specific conditions and rare disorders, plus support group lists
• Disabled Parents Network - for disabled people who are parents or hope to become parents
• Face2Face Network - befriending service for parents of children with special needs

Education

• CReSTed - register of schools which provide support for children with specific learning difficulties
• IPSEA - provides free legally based education advice

Equipment and grants

• Department for Work and Pensions - benefits information
• Disability Grants - guide to different grants available
• Family fund - offers grants to families with severely disabled or ill children aged 17 and under to have choices and the opportunity to enjoy ordinary life
• Fledglings - identifies and supplies practical, affordable products to help with everyday life
• Kidz Events - free exhibitions showcasing products and services to enhance independent living
• Living made easy - practical advice from occupational therapists about equipment for children and young people with disabilities
• New Life - information and grant services for funding equipment
• Totally Yours - a directory of useful resources for parents
• Whizz-Kidz - provides mobility equipment, training and advice

Experiences and opportunities

• Daytrippers - helps children with disabilities, life-limiting or terminal illnesses enjoy experiences that might otherwise not be available to them
• Disability Sport Events - support and promotes opportunities for disabled people with all impairments to take part in sporting events
• English Federation of Disability Sport - national charity for developing sport for disabled people in England.
• Hop, Skip and Jump - play and support centre in Bristol for children with special needs
• 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

Other

• Office for Disability Issues - A-Z of government departments and disability organisations
• Ouch! - blogs, news, features, information, podcasts from the BBC
• Potential Plus UK - information on support for families with children who are gifted, and have a disability or learning difficulties
• Sibs - charity for people who grow up with a disabled sibling or parent
• Special Kids in the UK - contact, information and support for families

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

• 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
• Children's Hospices UK - hospice care and services for children and young people
• Makaton - for anyone interested in Makaton sign language
• 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