Resources for parents, children and young people

Finding the right information is difficult. We’ve collected the following links, resources and advice below that we hope will help you, whether you’re a parent or a young person.

Information for children and young people

Bereavement

  • Cruse offer support, advice and information to children, young people and adults when someone dies. They work to enhance society’s care of bereaved people.
  • Grief Encounter work to give every child and young person access to the best possible support following the death of someone close.

Bladder and bowels

  • Eric exists to give every child and teenager with a bowel or bladder condition the support they deserve to enjoy a life free from shame, isolation and fear.

Cancer

  • Clic Sargent have a cancer toolkit packed full with information after you’ve been diagnosed and information from health and wellbeing, to education.
  • Teenage Cancer Trust provide specialist information and support for children and families affected by cancer.

Disadvantaged backgrounds

  • XLP works to empower young people from across disadvantaged backgrounds to complete their education, avoid anti-social behaviour and become independent to contribute to their community,

Flying

  • Aerobility offer disabled people the opportunity to fly an aeroplane, changing the outlook on disability.

Literature, toys and TV

  • Katy by Jacqueline Wilson is the story of a young girl who gets a spinal cord injury after a fall. This book was made into a CBBC TV show and can be watched for free in three parts on YouTube.
  • Christopher Reeve explains what his high level spinal cord injury means in his appearance on Sesame Street.
  • There are also some toys available that feature wheelchairs, including these barbies and these lego sets.
  • Bucks Healthcare have created a free resource that supports children who have a parent with a spinal cord injury.
  •  ‘The Adventures of Grandad Wheels!‘ is a series of children’s books about the crazy adventures of a disabled Grandad in a wheelchair and his Grandson Charlie. These books are available on our website with proceeds going to us and SIA.
  • Dennis and Gnasher: Unleashed!  the young character Rubi, is a wheelchair user and you can find out 10 things you never knew about Rubi on the beano website.

Mental health

  • The Giggle Doctor programme improves children’s experience of hospital, reduces stress and anxiety, increases opportunities for play and improves wellbeing.
  • Youth Access is an advice and counselling network for young people. They can offer free and confidential counselling local to you.
  • Plac2Be are a children’s mental health charity with out 25 years’ experinece working with pupils, families and staff in UK schools.
  • Shout 85258 is a free, digital, confidential, 24/7 text messaging support service for anyone who is struggling to cope.
  • The Mix are a free and confidential multi-channel service available to children and young people under 25. They can help with any issues or questions you may have.

Sports

  • Parasport can help you discover inclusive and local opportunities for you to become more active.

Support for siblings

  • Sibs is the only UK charity that represents the needs of young siblings of disabled children.

University support

  • Disability Rights UK have a specific helpline for disabled students. Their advisors can support those who are studying or looking to study at University.
  • Scope have a lot of information about reasonable adjustments that ensure you get the same access to information as anyone else, whether you’re at college, university or undertaking an apprenticeship.

Wheelchairs for children 

  • Designability have developed the Wizzybug, an innovative powered wheelchair designed specifically for young children.

Information for parents

Babies and new parents

  • Best beginnings is great for all parents, they provide information on pregnancy, postnatal exercise, mental health as well as specific information for if your child is born premature.
  • Shine provides specialist support from before birth and throughout the life of anyone living with spina bifida and/or hydrocephalus, as well as to parents, families, carers and professional care staff.

Disability Living Allowance (DLA)

  • Contact provide some excellent tips on receiving DLA which is the main benefit for chidlren under 16 with a condition or a disability.

Education

  • IPSEA offers independent legally based advice, support and training to help get the right education for children and young people with special educational needs and disability.

Grants

  • FamilyFund can provide grants whilst in hospital and clothing, holidays, laptops, equipment, sensory toys, game consoles for your family.
  • Caudwell Children provides specialist equipment for families with young disabled children.
  • Disability grants can help you find the right grant for you in your local area.
  • ELIFAR Foundation helps to improve the lives of children and young adults with severe learning difficulty and associated physical disability. They provide grants for a variety of items including electronic wheelchairs, specialised seating, eating aids, special beds and trikes, hoists, communication devices, sensory equipment and specialist holidays.

Nursery and childcare funding

  • Children aged 2 are entitled to free childcare (which may include nursey) if the child has a disability. This guide from the Family and Childcare Trust covers the various support options that could be available to you.
  • The government can also help you with childcare costs and have created a tool which can find the right offer for you.

Separation and co-parenting a child with a disability

  • Click provide relationship support from experts and the community. Their resource provides handy tips for co-parenting a disabled child.
  • Our Family Wizard is a shared parenting application that allows parents to communicate, share calendars, track expenses and organise vital vital family information, if living separately.

Support for siblings

  • Contact have written an information guide for parents of disabled children that focuses specifically on siblings.

Support and advice

  • The National Network of Parent Carer Forums (NNPCF) is the independent national voice of parent carer forums. Their mission is to deliver better outcomes for families living with special educational needs and disabilities.

Travel costs to hospital

  • If you’re referred to hospital or other NHS premises for specialist NHS treatment or diagnostic tests by a doctor, dentist or another primary care health professional, you may be able to claim a refund of reasonable travel costs under the Healthcare Travel Costs Scheme (HTCS).

Contact

Please contact Ella on ella@backuptrust.org.uk for more information about how  we support children and young people with spinal cord injury.