Internet Resource List
Below is a list of useful organisations for those caring for children with disabilities and special needs. Please let us know of any others to add onto the list, or of any errors or amendments. Please look through the whole list, as the entries are in alphabetical order, not topic order.
Action on Hearing loss
Aims to achieve a better quality of life for deaf and hard of hearing people.
Helpline: 0808 8080123
Web: www.actiononhearingloss.org.uk
Advisory Centre for Education (Ace)
An independent advice centre for parents, offering information about state education in England and Wales.
Helpline: 0808 800 5793
Web: www.ace.ed.org.uk
Ability Net
Offers advice and information on computers and software for disabled children.
Tel: 0800 269 545
Web: www.abilitynet.org.uk
Afasic
A parent-led organization representing children and young people with speech and language impairments.
Tel: 020 7490 9410
Helpline: 0845 355 5577
Web: www.afasicengland.org.uk
Ambitious about Autism
A national educational charity for children with Autism.
Tel: 020 88155444
Web: www.ambitiousaboutautism.org.uk
Together For Short Lives
The new name for ACT and Children's Hospices UK. Brings together over 40 voluntary sector organisations dedicated to the care of children with life-limiting conditions and their families.
Helpline: 0845 1082201
Web: www.togetherforshortlives.org.uk
Benefits Enquiry Line (BEL)
A confidential telephone service for people with disabilities, their representatives and their carers.
Helpline: 0800 882 200
Web: www.dwp.gov.uk
Blissymbol Communication UK
Provides information and resources about the Blissymbol communication system for people with language, communication and learning difficulties.
Tel: Tel: 07811 452444
Web: www.blissymbols.co.uk
British Association for Counselling and Psychotherapy
The Association aims to promote counselling, maintain and raise standards, provide information, advice and lists of counsellors, and represent counselling and psychotherapy at national level.
Tel: 01455 883 300
Web: www.bacp.co.uk
British Dyslexia Association
Provides support and information for people with Dyslexia and their families.
Tel: 0845 251 9002
Web: www.bdadyslexia.org.uk
British Institute for Learning Disabilities (BILD)
Offers a range of services to support those working with people with learning disabilities and their families.
Tel: 01562 723 010
Web: www.bild.org.uk
British Retinitis Pigmentosa Society (BRPS)
BRPS gives advice and support to people with retinitis pigmentosa, including people with Usher syndrome.
Helpline: 0845 123 2354
Web: www.brps.org.uk
Carers UK
This is a registered charity that provides support to anyone who is a carer.
Helpline: 0808 808 7777 Wednesday and Thursdays 10-12, 2-4pm.
Web: www.carersuk.org
Challenging Behaviour Foundation
A charity which provides free information leaflets on various aspects of challenging behaviour such as physical interventions, equipment and safety and self-injury.
Family Support Line: 0845 6027885
Web: www.challengingbehaviour.org.uk
Change
A national organization for people with learning difficulties, especially those who are deaf or blind.
Tel: 0113 388 0011
Web: www.changepeople.co.uk
Caudwell Children
This charity helps sick and disabled children with specialist equipment and some types of treatments. The charity also provides organised holidays for terminally ill children and their families. The organised holidays are supported by medical and support team - called 'Destination Dreams'
Application Helpline: 0845 3001348
Web: www.caudwellchildren.com
Carewell
Carewell has been developed with the help of carers, for carers. Throughout the site you will find useful information to help you make changes that give you more energy to care. This site was developed by Bupa and Carers UK.
Advice line - 0808 808 7777
Web: www.carewelluk.org
Carers Direct
Provides support and advice on carers' breaks, Carer's Allowance, Carers' assessments and more.
Freephone: 08088020202
Web: www.nhs.uk/carersdirect
Care for the Family
Offer marriage, parenting or relationship advice and support , as well as a telephone befriending service for parents of children with special needs.
Tel: 029 2081 0800
Web: www.careforthefamily.org.uk
Cerebra
Help improve the lives of children with brain related conditions through research, education and directly supporting the children and their carers.
Helpline: 0800 328 1159
Web: www.cerebra.org.uk
Charge Association Family Support Group
CHARGE is made up from the initial letters of some of the most common features seen in this condition. The group has a network of families who aim to promote and support all activities leading to improved quality of life for their children.
Tel: 020 8265 3604
Web: www.chargesyndrome.org.uk
Child Death Helpline
Professionals and parents working in partnership to provide a listening service and emotional support to all those affected by the death of a child.
Tel: 0800 28 29 86
Web: www.childdeathhelpline.org.uk
Childcare Directory (Herefordshire)
Contains details of local childcare providers (registered and unregistered), their address, telephone number and general details.
Web: www.herefordshire.gov.uk/earlyyears/publicenquiry/
Citizens Advice Bureau (Herefordshire)
Offers free, confidential, impartial and independent advice.
Tel: 0844 826 9685
Web: www.herefordshirecab.org.uk
Contact a Family (CAF)
Helps families who care for children with any disability or special need.
Helpline: 0808 808 3555
Web: www.cafamily.org.uk
Council for Disabled Children
A National forum for the discussion, development and dissemination of a wide range of policy and practice issues relating to service provision for children and young people with disabilities and special educational needs.
Tel: 020 78431900
Web: www.councilfordisabledchildren.org.uk
Crossroads Care - Forest of Dean & Herefordshire
Is part of a National organization that provides help and support to Carers (Adult Carers and Parent Carers) across England, Scotland and Wales. Crossroads supports people who care for a person needing twenty four hour support and supervision at home, by providing an often much needed opportunity for a break.
Tel: 01594 823414
Web: www.crossroadsfd.org.uk
Department of Education
A government department that can help you find out things you want to know about education matters.
Tel: 0870 000 2288
Web: www.education.gov.uk
Dimensions
We support people with learning disabilities and people with autism. Dimensions also supports families to better understand the personalisation agenda.
Tel: 0300 373 3730
Web: www.dimensions-uk.org
Disability, Pregnancy and Parenthood International
A resource centre bringing together information and materials relating to disability, pregnancy and parenthood.
Tel: 0800 0184730
Web: www.dppi.org.uk
Disabled Living Foundation
Provides information about aids and equipment.
Tel: 0845 130 9177
Web: www.dlf.org.uk
Disability Rights UK
A national pan-disability organisation led by disabled people.
Tel: 020 72503222
Web: www.disabilityrightsuk.org
Door to Door
A travel guide for disabled people.
Web: www.dptac.gov.uk/door-to-door
Down's Syndrome Association (DSA)
Provides information, counselling and support for people with Down's syndrome, their families and carers, as well as being a resource for interested professionals.
Tel: 020 86145100
Web: www.downs-syndrome.org.uk
The Dyspraxia Foundation
Provides support for children, families and adults with dyspraxia.
Tel: 01462 454986 (10am -1pm Monday - Friday)
Web: www.dyspraxiafoundation.org.uk
Equality and Human Rights Commission
The EHRC promote and monitor human rights; and to protect, enforce and promote equality across the nine "protected" grounds - age, disability, gender, race, religion and belief, pregnancy and maternity, marriage and civil partnership, sexual orientation and gender reassignment.
Helpline: 0845 6046610
Web: www.equalityhumanrights.com
Epilepsy Society
A charity that provides care, medical services, research, plus a wide range of information, education and training to people with epilepsy, their families, friends and professionals involved in their care.
Helpline: 01494 601 400
Web: www.epilepsysociety.org.uk
Education and Resources for Improving Childhood Continence (ERIC)
Provides advice and information on bedwetting.
Tel: 0845 370 8008
Web: www.eric.org.uk
Every Disabled Child Matters
Is the campaign to get rights and justice for every disabled child, run by four of the leading organisations working with disabled children and their families: Contact a Family, the Council for Disabled Children, Mencap and the Special Educational Consortium.
Web: www.edcm.org.uk
Extra Special Friends
Offer an extensive range of products for behaviour and communication solutions
Tel: 01455 447507
Web: www.extraspecialfriends.com
Family Action
Provides a wide range of support to children and families living with poverty, ill-health and social isolation, and also specialist work with children with disabilities.
Tel: 020 72546251
Web: www.family-action.org.uk
Family Fund
An independent organization funded by government that is a provider of grants to low-income families raising disabled and seriously ill children and young people.
Tel: 0844 9744099
Web: www.familyfund.org.uk
Family Information Service
Herefordshire FIS is the first point of call for those wanting to access information on any topic related to raising a family. FIS is there for any parent or family with children from 0 - 19 years (up to 25 years for those with special needs)
Web: www.herefordshire.gov.uk/fis
The Family Holiday Association
The Association can provide grants to provide a one-week holiday to families who are desperately in need of a break.
Tel: 020 31170650
Web: www.fhaonline.org.uk
Family Lives
A national charity that provides support in all aspects of family life. They offer help and information on a range of services, including: a free and confidential helpline; workshops, courses and information leaflets.
Parent line: 0808 8002222
Web: www.familylives.org.uk
Family Rights Group
Provides advice and support for families whose children are involved with social services.
Tel: 0808 8010366
Web: www.frg.org.uk
Fledglings
A national charity who assist parents and carers of disabled children, or those with additional needs of any kind, by identifying, sourcing and supplying practical products to address every day issues.
Tel: 0845 4581124
www.fledglings.org.uk
Foundations
The national co-ordinating body for home improvement agencies (HIAs) in England. HIAs are not-for-profit, locally based organizations that assist vulnerable home owners, to repair, improve or adapt their home.
Tel: 08458 645210
Web: www.foundations.uk.com
Genetic Alliance UK
A national alliance of organizations which support all those affected by genetic disorders.
Tel: 020 77043141
Web: www.geneticalliance.org.uk
Go Kids Go
Runs training courses teaching children skills which support independent use of wheelchairs.
Tel: 01482 887163
Web: www.go-kids-go.org.uk
Gingerbread
Provide expert advice, practical support and campaign for single parents.
Helpline: 0808 8020925
Web: www.gingerbread.org.uk
The Hypermobility Syndrome Association
Provide support and information to those affected by the Syndrome and to promote knowledge and understanding within the medical community and the public at large.
Tel: 0845 3454465
Web: www.hypermobility.org
Independent Panel for Special Education Advice (IPSEA)
Provides free independent advice on all aspects of special education, including help with second opinions on children's educational needs.
Helpline: 0800 018 4016
Web: www.ipsea.org.uk
I CAN
A charity which helps children with speech and language difficulties.
Tel: 0845 2254073 / 020 78432552
Web: www.ican.org.uk
In Control
In Control partner with local authorities; user-led organisations; government and civil servants; elected members and paid staff; commercial companies; charitable and not-for-profit organisations; as well as working directly with people who need support (and their families)
Tel: 01564 821 650
Web: www.in-control.org.uk
Kids
A national charity dedicated to helping children and young people with disabilities and special needs develop their skills and abilities and realise their potential.
Tel: 0121 3552707
Web: www.kids.org.uk
Kidscape
The only national charity dedicated to keeping children safe from bullying and sexual abuse.
Helpline: 08451 205 204
Web: www.kidscape.org.uk
Letterbox Library
A non-profit workers co-operative providing multi-cultural, non-sexist and special issue books for children.
Tel: 020 7503 4801
Web: www.letterboxlibrary.com
Look
A charity that provides information, support and help to families with visually impaired children.
Tel: 0121 428 5038
Web: www.look-uk.org
Makaton
Makaton is a recognised approach to teaching communication skills for those with communication and learning difficulties of all ages.
Tel: 01276 606760
Web: www.makaton.org
Megan Baker House
A charity that provides free conductive educational services at its centre in Herefordshire for children, teenagers and adults with SEN and physical disabilities such as Cerebral palsy, Dyspraxia, head injury or stroke and early on-set Parkinson's Disease.
Tel: 01568 616179
Web: http://www.meganbakerhouse.org.uk
Mencap
The UK's leading learning disability charity working for people with a learning disability and their families and carers.
Tel: 0808 8081111
Web: www.mencap.org.uk
Meningitis Trust
Offers facts, information, literature and support to people affect by meningitis and meningococcal disease.
Helpline: 0800 0281828 (24 hour helpline)
Web: www.meningitis-trust.org
Merlins' Magic Wand
A worldwide charity for children, aiming to provide magical experiences for those who are seriously ill, disabled or disadvantaged.
Application enquiries: mmw.enquiries@merlinentertainments.biz
Web: www.merlinsmagicwand.org
National Association for Special Educational Needs (NASEN)
Promotes the development of children and young people with special educational needs and supports those who work with them.
Tel: 01827 311 500
Web: www.nasen.org.uk
National Autistic Society
The Society has a helpline for anyone in the UK whose lives are affected by autistic spectrum disorders.
Helpline: 0808 8004104 10:00am - 4:00pm
Web: www.autism.org.uk
National Blind Children's Society
Helps support blind and partially sighted children. Provides specialist equipment, funds leisure activities, and contributes to respite care.
Tel: 01278 764 764
Web: www.nbcs.org.uk
National Childminding Association
Promotes quality registered childminding so that children, families and communities can benefit from the best in childcare and education.
Helpline: 0845 8800044
Web: www.ncma.org.uk
National Children's Bureau
Promotes the interest and wellbeing of all children and young people across every aspect of their lives.
Tel: 020 7843 6000
Web: www.ncb.org.uk
The National Deaf Children's Society
Supports families with deaf children. They provide clear and balanced information on all aspects of childhood deafness, including temporary conditions such as glue ear.
Helpline: 0808 800 8880.
Monday to Thursday 9.30am-9.30pm and Friday 9.30am-5pm.
Web: www.ndcs.org.uk
National Parent Partnership Network (NPPN)
Supports the work of the parent partnership services, which provide information, advice and support for parents of children and young people with special educational needs, particularly during the statutory assessment and the issuing of a statement.
Tel: 020 7843 6058
Web: www.parentpartnership.org.uk
National Portage Association
A registered charity established in 1983 to offer support and information to parents and professionals involved in Portage, a home visiting educational service for pre-school children with additional needs and their families.
Tel: 0121 2441807
Web: www.portage.org.uk
National Society for the Prevention of Cruelty to Children (NSPCC)
Specialises in child protection and the prevention of cruelty to children. In addition to its 24 hour helpline, the NSPCC runs campaigns, provides child protection training and advice, carries out research into the nature and effect of child abuse, and produces information leaflets.
Helpline: 0808 800 5000
Web: www.nspcc.org.uk
NHS Direct
A 24 hour nurse advice line and health information service, providing confidential information on what to do if you or your family are feeling ill, have particular health conditions, or need local health care services or self-help and support organisations.
Tel: 0845 4647
Web: www.nhsdirect.nhs.uk
Netbuddy
Is an award winning site for swapping practical tips and information on all aspects of supporting people with special needs.
Web: http://www.netbuddy.org.uk
The Patients Association
Gives advice on problems relating to health and healthcare.
Helpline: 0844 6084455
Web: www.patients-association.com
Preparing for Adulthood
Provide knowledge and support to all local authorities and their partners, including families and young people, so they can ensure young people with SEN and disabilities achieve paid work, independent living, good health and community inclusion as they move into adulthood.
Tel: 020 7843 6348
Web: www.preparingforadulthood.org.uk
Princess Royal Trust for Carers
A registered charity providing information, support and practical help for carers.
Tel: 0844 800 4361
Web: www.carers.org
Pre-school Learning Alliance
National educational charity and umbrella body, linking 16 000 community based pre-schools and 500 000 children and their families.
Tel: 020 7697 2500
Web: www.pre-school.org.uk
Royal National Institute of the Blind (RNIB)
The RNIB's work helps anyone with a sight problem - through Braille, talking books and computer training, and also with imaginative and practical solutions to everyday challenges.
Helpline: 0303 1239999
Web: www.rnib.org.uk
Herefordshire Riding for the Disabled
RDA is dedicated to improving the lives of disabled people through educational therapy and horse riding lessons and carriage driving.
Tel: 01432 870831
Web: www.rdahereford.org
Herefordshire Parent Partnership
Provide telephone advice and support, drop in sessions, courses and events related to SEN and can provide one to one support for paperwork, meetings etc.
Tel: 01432 260 955
Web: www.parentpartnership.org.uk
Scope
This national disability charity for cerebral palsy. Scope's work is focussed on four main areas: early years, employment, education and daily living.
Tel: 0808 800 3333
Web: www.scope.org.uk
Sense
This major UK voluntary organisation for children and adults born with multi-sensory impairments (MSI) and their families.
Tel: 0845 127 0066
Web: www.sense.org.uk
Short Breaks Network
Link families with disabled children or young people to host families willing to offer occasional care. They aim to promote family-based, short-term care by: providing an information service; lobbying to promote appropriate services; organising conferences and training events; encouraging good practice; and promoting the rights of carers and their families.
Tel: 0117 9415361
Web: www.shortbreaksnetwork.org.uk
Sibs
For brothers and sisters of children and people with special needs, disability or chronic illness.
Tel: 01535 645 453
Web: www.sibs.org.uk
Transition Information Network
Provides information about the transition process that is useful to both professionals and parents/carers.
Tel: 020 78436006
Web: www.transitioninfonetwork.org.uk
Talk about Autism
Is a new campaign by autism charity Ambitious about Autism, who aims to increase public understanding of autism.
Tel: 020 8815 5444
Web: www.talkaboutautism.org.uk
Tourism for all
Provides information about all types of holidays for people with special needs.
Tel: 0303 3030146
Web: www.tourismforall.org.uk
Treacher Collins Family Support Group
Provides support, information and advice to families with Treacher Collins Syndrome and also First and Second Arch syndrome, Atresia of the Ear and any other condition combining conductive deafness with facial/head malformations.
Tel: 01603 433 736
Web: www.treachercollins.net/
Twin and Multiple Birth Association (TAMBA)
Provides information and support networks for families of twins, triplets and more.
Helpline (also known as Twinline): 0800 138 0509
Web: www.tamba.org.uk
Whizz Kidz
Provides mobility aids and lightweight or powered wheelchairs for children with locomotion disabilities.
Tel: 020 7233 6600
Web: www.whizz-kidz.org.uk
Winston's Wish
Works with children and families on issues of death and bereavement.
Tel: 0845 203 0405
Web: www.winstonswish.org.uk
Working Families
Provides information and advice to working parents. It has an established network of parents of disabled children.
Helpline: 0800 013 0313
Web: www.workingfamilies.org.uk
YoungMinds
A national charity committed to improving the mental health of all children. Provides a parents information service, training and consultancy, leaflets and booklets for young people.
Helpline: 0808 8025544
Web: www.youngminds.org.uk
You@Home
Home improvement Agency which helps vulnerable people maintain their independence.
Tel: 01432 260710
Contact list updated March 2012.
Thanks to Herefordshire Carers and the national Early Support Programme.