Other help

These organisations are grouped into the topic of help or support you may need.  They include a wide variety of services, advice and other help for families raising children with disabilities or serious illness.  

 

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Aids and Adaptations

AbilityNet

AbilityNet is a national charity helping disabled adults and children use computers and the internet by adapting and adjusting their technology. Their special expertise is ensuring that whatever your age, health condition, disability or situation you find exactly the right way to adapt or adjust your ICT to make it easier to use.

British Red Cross

The British Red Cross has a volunteer-led medical equipment service that provides wheelchair hire and short-term loans of equipment in almost 1,000 outlets in the UK.

Disabled Living Foundation (DLF) DLF gives impartial advice and information on all aspects of daily living equipment for children, including a UK-wide directory of suppliers. The DLF also has a website, self assessment, rapid access (SARA) site at www.asksara.org.uk

Fledglings

Fledglings is a national charity which aims to assist parents and carers of disabled children by identifying, sourcing and supplying practical, affordable products to address everyday issues.

Newlife Foundation for Disabled Children

Newlife gives practical support for disabled children throughout the UK. They provide equipment-grant services to help individual children, and nurse-led support services offering information and support to parents, including an online chat service.

Whizz-Kidz

Whizz-Kidz is a charity that is all about giving disabled children the chance to lead a more independent life by providing the essential wheelchairs and other mobility equipment they need to lead fun and active childhoods.

 

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Bereavement

Child Bereavement Charity 

This organisation offers support to families and young people who have lost a child. There is a searchable database of support in your area on their website.

The Compassionate Friends 

This organisation has local befrienders who listen to and support all bereaved parents and their immediate families, a helpline staffed by bereaved parents, forums, a website for siblings and a legal helpline.

Cruse Bereavement Care 

Cruse Bereavement Care provides a free counselling service for bereaved families, including children and young people, over the telephone or through local offices providing one-to-one support or group work, plus forums for children/young people. Also see the young person’s website.

Tommy's

Funding research into stillbirth, premature birth and miscarriage, and providing information for parents-to-be. If you have been told you are at risk of having a premature baby, or if you have already had a premature baby, the information on this website should help answer many of the questions you may have.

 

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Campaigns

Every Disabled Child  Matters (EDCM) is a national campaign for the rights and justice of all disabled children. 

For Scotland's Disabled Children (FSDC) aims to ensure that Scotland’s disabled children are central to new policy and action, to see the good intentions of the Scottish Government translated into better lives for disabled children and their families in Scotland. 

Disability Action (Northern Ireland) works to ensure that people with disabilities attain their full rights as citizens, by supporting inclusion, influencing Northern Ireland Government policy and changing attitudes in partnership with disabled people. 

Carers

Carers Trust works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. They have a network of partners that aim to ensure that information, advice and practical support are available to all carers across the UK.

Carers UK is a UK-wide membership organisation run by carers for carers, providing information and advice to all carers.

Young Carers Net is a website for siblings/young carers with discussion boards and chat rooms (moderated by adults who have been police-checked), an ‘Agony Aunt’ page for young people’s questions plus where to find local young carers’ projects around the UK.

 

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Disability Charities (National)

Action on Hearing Loss provide information, advice, support and a helpline for people who are deaf or have a hearing impairment. 

The National Autistic Society provide information, support and services for people with Autism. 

Cerebra aims to improve the lives of children with brain related conditions through research, education and directly supporting children and their carers. 

Contact a Family are a national charity providing advice, information and support for any family with a disabled child, whatever the child’s condition. The have a helpline where staff can answer queries on all aspects of raising a disabled child, from providing medical information about a diagnosis, giving advice about benefits and services, to schooling, assessments and statements of special educational needs.  They also have specific offices in Northern Ireland, Scotland and Wales:

Contact a Family Northern Ireland

Contact a Family Scotland 

Contact a Family Wales/Cyswllt Teulu Cymru.  In Wales, they organise workshops and conferences for parents (which professionals can sometimes attend) based on local interest. These are an opportunity for parents to come together and share their experiences. 

The Council for Disabled Children is the umbrella body for the disabled children’s sector in England and has links to the other UK nations.

Genetic Alliance UK is a national alliance of patient organisations with a membership of over 130 charities that support children, families and individuals with a genetic disorder. They provide a wide range of information on genetics, including a comprehensive glossary.

Mencap is a national charity that supports children and adults with a learning disability. This includes information advice and services. 

RNIB support blind and partially sighted people. They provide information, advice and a helpline. 

Scope is a charity that supports families with disabled children by providing information and advice and services. They help families and adults with Cerebral Palsy and other disabilities. 

Sense offers support and information to people who are deafblind. 

The Shaw Trust supports young adults and adults who have a disability or who have been disadvantaged to gain employment.  

Shine provides information and support to people with Spina Bifida and Hydrocephalis. 

Unique provide information and support to families and individuals who are affected by any rare chromosome disorder. 

 

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Education

Advisory Centre for Education (ACE)

ACE offers guidance and advice on all aspects of state education, including special educational needs.

Independent Parental Special Education Advice (IPSEA) IPSEA gives independent advice to parents who are uncertain about, or disagree with, the Local Educational Authority’s interpretation of their child’s special educational needs.

National Parent Partnership Network (NPPN) promotes local Parent Partnership Services (PPS) which are statutory services offering information, advice and support to parents and carers of children and young people with special educational needs (SEN). PPS are also able to put parents in touch with other local and national organisations. The services they provide are confidential and impartial

Skill: National Bureau for Students with Disabilities Skill is a UK independent charity that promotes equality in education, training and employment for disabled people across the UK. It helps young people and adults over 16 years of age with any kind of impairment including physical and sensory disabilities, learning and mental health difficulties.

 

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Finance and Grant Giving

Caudwell Children provide family support services, equipment, treatment and therapies for disabled children and their families across the UK. There are a number of grants that families can apply for. 

Citizens Advice Bureau can help with information and advice around all sorts of issues including: finances, benefits, the law and your rights. 

Disability Grants

Do you have a disability? Are you a parent or carer of a disabled child or adult? If so, use this website to save time finding disability grants. Charities and Trusts provide funding towards the high cost of disability equipment, holidays, housing, days out, in fact anything above and beyond the normal costs of everyday living.

Turn2Us provide a comprehensive online service to help find sources of financial support based on particular needs and circumstances. Their helpline provides free, confidential information given by trained professional advisers on welfare benefits entitlement and applying for grants.

 

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Government

Gov.uk is a single point of online access for information, including information for carers on money issues, care and support services, employment and carers’ rights as well as information for disabled people on employment, education and learning, transport, rights and leisure. 

 

Grandparents

The Grandparents Association is a national charity that supports all grandparents and their families. They celebrate the joys of grandparenting and have a helpline providing advice. 

Grandparents Plus is the national charity which champions the vital role of grandparents and the wider family in children's lives - especially when they take on the caring role in difficult family circumstances.

Gransnet is an online social network developed by the team behind Mumsnet. There is a Special Needs forum as well as discussion on other topics such as grandparenting, health, relationships, style & beauty, book club, work, food and recipes, learning and courses, television and radio, hobbies and interests, homes and gardens, money, arts and culture, travel and chat.

 

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Hospices

Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. They support families, professionals and services, including children’s hospices. Their work helps to ensure that children can get the best possible care, wherever and whenever they need it.

 

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Information Technology

AbilityNet is a national charity helping disabled adults and children use computers and the internet by adapting and adjusting their technology. Their special expertise is ensuring that whatever your age, health condition, disability or situation you find exactly the right way to adapt or adjust your ICT to make it easier to use.

Aidis Trust has been developed to help disabled people make best use of information and communication technology by giving information, help and support on all aspects of disability computing.

Getonline@home is the easy place to get your first, very affordable and internet ready computer - backed by Microsoft and Race Online 2012 with partners including BT, Post Office and 3.

 

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Medical

MedicAlert is a charity that provides an internationally recognised life-saving identification system for people with hidden medical conditions and allergies, supported by a 24-hour emergency telephone service (from within the London Ambulance Service).

NHS Choices provides information and advice about health, illness and health services 24 hours a day, including search features to find local health services. You can speak to a nurse on the helpline if you need medical advice and help to make complaints. There are links to equivalent services in Scotland, Northern Ireland and Wales.

 

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Northern Ireland

Children in Northern Ireland (CiNI) is the regional umbrella organisation for the children’s sector in Northern Ireland. CiNI provides training, policy, information, and participation support services to member organisations, relating to their work with children and young people.

Disability Action (Northern Ireland) works to ensure that people with disabilities attain their full rights as citizens, by supporting inclusion, influencing Government policy and changing attitudes in partnership with disabled people. 

 

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Parenting

Family Lives is a national family support charity providing help and support in all aspects of family life. They are available 24 hours a day, seven days a week.  

Mumsnet make parents' lives easier by pooling knowledge, advice and support. The Mumsnet special needs web guide provides links to useful organisations and there are also discussion forums especially for parents of children with disabilities and related topics.

Netbuddy gives practical tips from people with first-hand experience of learning disability, autism and special needs.

 

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Scotland

Shared Care Scotland is a national charity that works to improve the quality, choice and availability of short break (respite care) provision across Scotland, for the benefit of carers and the people they care for. 

Mindroom support children and adults with learning difficulties throughout Scotland. 

For Scotland's Disabled Children (FSDC) aim to ensure that Scotland’s disabled children are central to new policy and action, to see the good intentions of Government translated into better lives for disabled children and their families in Scotland. 

Contact a Family Scotland provides support, advice and information for families with disabled children, no matter what their condition or disability.  They list local support groups, as well as research reports and updates on policy. 

Siblings

Sibs provides information and support for siblings and how parents can support them. In addition, they provide information and advice for professionals supporting young carers.

Support

Counselling Directory is a confidential service that encourages those in distress to seek help. The directory contains information on many different types of distress, as well as articles, news, and events. They are now a leading support network in the UK.

 

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Wales

Contact a Family Wales/Cyswllt Teulu Cymru offer information, advice and support to parents and carers of children with any special need or disability as well as professionals working with families. They organise workshops and conferences for parents (which professionals can sometimes attend) based on local interest. These are an opportunity for parents to come together and share their experiences. 

Children in Walesis a charity that promotes the interests of children, young people and their families in Wales. They are the national umbrella organisation for voluntary, statutory and professional organisations and individuals who work with children and young people in Wales.

 

 
 

This information was last updated in November 2013. If you have any problems accessing these organisations please contact us.