Other Sources Of Support

Advocacy

Speak Up is an advocacy service based in Rotherham, South Yorkshire for people with learning disability/Autism, they promote choice, rights and independence for all and work to ensure people with a learning disability/autism are valued, heard and included within society. www.speakup.org.uk

Autism

National Autistic Society -   UK charity for people with autism (including Asperger syndrome) and their families. We provide informationsupport and pioneering services, and campaign for a better world for people with autism. Our work relies on your support, so please get involved or donate today.   www.autism.org.uk

Behaviour

Challenging behaviour Foundation - charity for people with severe learning disabilities whose behaviour challenges provide information about challenging behaviour ,peer support for family carers and professionals, supporting families by phone or email , workshops to reduce challenging behaviour..: www.challengingbehaviour.org.uk

 

Carers & Parents


Carers UK

www.carersuk.org

IASS Network -The Information, Advice and Support Services Network provide training and support to local Information Advice and Support (IAS) Services across England. The IASS Network was previously known as the National Parent Partnership Network (NPPN), who undertook a similar role with local Parent Partnership Services. www.iassnetwork.org.uk/about-us

Carers Wakefield and District

They provide practical and emotional support to carer’s on a one to one and group basis. www.carerswakefield.org

National Family Carers Network

This is a charity that aims to promote the voice and rights of family carers supporting a person with a learning disability. www.family.carers.org.uk

YoungSibs 

This is an online service for siblings of disabled children provided by the charity Sibs. The service has information about disability, dealing with feelings and family life, and tips for coping with difficult situations coping with difficult situations www.sibs.org.uk   

 

Carers Trust

Is a charity for, with and about carers, they work to improve support, services and respite for anyone living with the challenges of caring for a family member, friend who is ill, physically disabled or who has a mental health issue. They provide access to desperately needed breaks, information ,advice,and education. They also run support schemes for young carers. www.carers.org  www.youngcarers.net

 

Benefits, Grants & Charities

www.direct.gov.uk



Turn 2 Us

This a free service that helps people in financial need to access welfare benefits, charitable grants and other financial help – online, by phone and face to face through our partner organisations. www.turn2us.org.uk

Disability Grants

Provide easy to use  Guide to accessing Grants for the Disabled child or adult www.disability-grants.org


Charities

Family Fund

www.familyfund.org.uk Can help provide grants to families with severely disabled children based on families and needs.

Caudwell Children

The provide family support services, equipment, treatment and therapies for disabled children and their families across the UK www.caudwellchildren.com

Cerebra 

This a charity set up to help improve the lives of children with brain related conditions through research, education and directly supporting the children and their carers. www.cerebra.org.uk

Their newest parent guides are available HERE

Contact a Family

This is a charity for families with a disabled child. They can offer advice, support and information on a range of issues such as Benefits Special Educational Needs, Information about conditions. Details of charities which give grants and much more. Helpline Number is 0808 808 3555 www.cafamily.org.uk

Children Today

This is a charity that raises funds to provide specialised equipment and services for children and young people with disabilities throughout the UK www.children-today.org.uk

KIDS Charity 

Work with children and young people up to 25 and their families who have a physical, sensory or mental impairment. They provide, information, individual support, SEN mediation services, keyworking  and  signposting to services. KIDS  is a national charity. www.kids.org.uk  

The Money Advice Service

What disability and sickness benefits can I claim? If you’ve recently become sick or disabled, find out more about the long-term sickness and disability benefits available, how savings affect your benefits and what you can claim if you’re self-employed and can’t work because of illness or injury. For more information go to www.moneyadviceservice.org.uk

Education


Ace Education

Offer a comprehensive range of advice and information on education issues. information is based on current education law and guidance and covers state funded education for children aged 5-16 years in England only. If you are the parent or carer of a child at school and you  confidential telephone adviceline on 0300 0115 142. www.ace-ed.org.uk

Network 81

is a national network of parents working towards properly resourced inclusive education for all children with special needs. They offer advice and information on education issues. They also have  A National Helpline (0845 077 4055) offering advice and support www.network81.org 

Independent Parental Special Education Advice

Known as IPSEA - are a registered charity  IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs (SEN) and disabilities.  Advice Line: 0800 018 4016  www.ipsea.org.uk/home

Gov.UK  

Information on Children with special educational needs (SEN) HERE

Moving On

A guide for pupils with special educational needs moving on to secondary school can be downloaded HERE

Skin


British Association of Dermatologists 

Provide information sheets about skin disease and general information on dermatology in the uk.  www.bad.org.uk

Changing Faces

Are a nation wide charity for people/families of all ages who are living with conditions, marks or scars that affect their appearance. They provide practical and emotional support to encourage people to lead full, confident and satisfying lives. The charity also provide support/information for health, social care and educational professionals.  www.changingfaces.org.uk



Disability

Every Disabled Child Matters (EDCM)

Is a campaign to get rights and justice for every disabled child. work closely with the disabled children's sector to lobby Government to ensure disabled children and their families have the services and support they need to lead ordinary lives.www.edcm.org.uk

Disabled Go

Provides detailed online access guides to a huge range of places that you will want to visit www.disabledgo.com

The Disability Law Service (DLS)

Provides free advice in relation to disability discrimination, community care, employment and welfare benefits. The DLS can do this through its telephone advice sessions or by post or e-mail. www.dls.org.uk

Disability Rights UK 

Works to create a society where everyone with lived experience of disability or health conditions can participate equally as full citizens. www.disabilityrightsuk.org

Learning Disability

Home farm trust

Is a national charity, providing local support services for people with learning disabilities throughout England www.hft.org.uk

Mencap

Work in partnership with people with a learning disability, helpline 0808 808 1111.   Web: www.mencap.org.uk

Challenging Behaviour Foundation

Is a charity for people with severe learning disabilities whose behaviour challenges. making a difference to the lives of children and adults across the UK through:information about challenging behaviour,peer support for family carers and professionals, supporting families by phone or email, speaking up for families nationally www.challengingbehaviour.org.uk.

BILD

is the British Institute of Learning Disabilities. They want people with learning disabilities to be valued equally, participate fully in their communities and be treated with dignity and respect. 

In The UK
www.bild.org.uk

Or in Scotland

www.enable.org.uk

Foundation for people with Learning Disabilities

Provides information about issues affecting the lives of people with learning disabilities, ,publications, workshops conferences, funds research and services projects www.learningdisabilities.org.uk

Insurance

People with medical conditions like TSC sometimes find it difficult to get reasonably priced travel and life insurance and can be refused cover. If you are having problems with finding travel or life insurance, you may find the following guides helpful. 

GeneticAlliance.org.uk
Genetic Alliance  - information on travel insurance

The Genetic Alliance and the TSA recommend having a look around at various companies and policies before committing to an insurance policy.  

Travel Insurance

We know travel insurance for people affected by TSC is an issue. Cerebra have just published this guide HERE which might be of help

Epilepsy

 

Epilepsy Action

Is the UK’s epilepsy organisation and exists to improve the lives of everyone affected by the condition. It provide advice and information, online, in print and directly through the Epilepsy Helpline

Epilepsy Helpline call 0808 800 5050, 

Email helpline@epilepsy.org.uk. Web: www.epilepsy.org.uk

Epilepsy Research UK

supports and promotes basic and clinical scientific research into the causes, treatments and prevention of epilepsy, They also produce a variety of publications on epilepsy. www.epilepsyresearch.org.uk

Epilepsy Society

Offer a comprehensive range of information resources  provide training for individuals and healthcare professionals to  educate people about epilepsy.  They have a helpline which gives callers confidential emotional support. . helpline Number 01494 601 400  www.epilepsysociety.org.uk

Young Epilepsy

is the national charity working exclusively on behalf of children and young people aged 25 and under with epilepsy and associated conditions. The charity provides a range of support and information for parents, children and young people.  They also have a helpline Phone: 01342 831342, between 9am - 1pm, Monday to Friday.

Email: helpline@youngepilepsy.org.uk www.youngepilepsy.org.uk

Matthews  Friends

The charity’s aim is to aid and support parents through parents personal experiences in managing the Ketogenic Diet. Aim to provide you with the latest information possible with regard to what is going on in the"ketogenic world"  www.matthewsfriends.org

The National Children's Bureau

is a leading charity that for 50 years has been improving the lives of children and young people, especially the most vulnerable. We work with children and for children, to influence government policy www.ncb.org.uk

ABLEize 

is UK disability resource directory. It offers the largest collection of disability, mobility and health websites and social media pages in the UK and Europe. It promotes hand-picked quality, trusted information, advice, products and services as well as education, disabled support groups, local clubs and sports as well as promoting quality mobility, daily living aids and disability shopping sites to assist you and your special health needs www.ableize.com

Holidays 

Home farm trust www.hft.org.uk/holidayinformationguide annual Holiday Information Guide is packed with information to help people with learning disabilities and those closest to them choose a holiday.

DisabledHolidays.com are the UK's largest specialist holiday company with the widest variety of accessible holidays, accommodation both UK and overseas, cruise, insurance, equipment and transfers. We accept Family Fund cards too.

www.disabledholidays.com