Being a disabled child isn’t easy and neither is being the parent of a disabled person, fortunately help and support exists to make things slightly easier.
There are some excellent national charities that can provide broad support and advice, such as Turn2Us, www.turn2us.org.uk – which offers financial support – and the Citizen’s Advice Bureau but sometimes you need a more tailored approach.
We take a look at just a few of the organisations and charities that are working hard to help take the day-to-day pressure off families with disabled children.
KIDS provides a range of support services for disabled children, young people and their families, working with 80 local authorities and supporting 13,500 people last year alone. As well as information and advice, KIDS also has a programme that focuses on play and social support to help reduce the strain on the whole family. KIDS offers short breaks and activity-based day trips as well as providing care workers so the family can have a break. They run adventure playgrounds (in selected locations), playschemes and after school clubs where youngsters can build their social skills, as well as a free and independent mediation and disagreement resolution service and helpline.
Tel: 0207 359 3635
Mediation helpline: 03330 062835
New Life aims to improve the lives of children with disabilities, terminal illness or lifelong health issues and support families to deal with the day-to-day challenges of their child’s condition. One of the key services New Life provides is a free and confidential helpline, staffed by experienced nurses to provide support and advice for those caring for disabled or terminally ill children. The charity also runs a fast track emergency equipment service, providing free loan of essential equipment for children in urgent need, as well as grants for everyday equipment. New Life also loans out specialist toys, including play therapy pods which families can loan for free for up to 12 weeks.
Tel: 01543 462 777
Free nurse helpline: 0800 902 0095
Family Fund offers support for families on low incomes with disabled or seriously ill children and young people. Grants issued by the charity are used to purchase essential items, including kitchen appliances, bedding, furniture, clothing and sensory equipment. Family Fund also runs a range of programmes as well as an advice service to support families to access more of the support they may be entitled to.
Family Fund were recently able to help one family purchase sensory toys. Two-year-old George, from Essex, is currently awaiting an assessment for autism and, as mum, Lauren explains, day-to-day life can be incredibly challenging. “He’s classed as non-verbal and has high sensory needs. There’s no real communication – he can’t tell me what he wants.”
Family Fund were able to help with a grant to buy George some much-needed sensory toys to help with his development. “We were able to get such a wide variety – from light-based toys and sensory balls to puzzles and a visual calendar. The grant has helped George massively – he now has toys he can play with!”
Tel: 01904 550055
Formerly Action for Kids, My AFK focuses on supporting disabled children and young people as well as their families during their schooling and as they move into work. My AFK offers a programme of educational support for young people between the ages of 14 and 19 who need extra assistance as they prepare for life after work as well as a Life and Work programme, including tutoring and work experience placements. There’s a short break programme for young people aged 14-18 with learning disabilities and the charity also provides mobility equipment not available on the NHS for disabled children and young people up to the age of 25.
Six year old Jacob has cerebral palsy dystonic quadriplegia and is unable to walk unaided. His family approached My AFK after he outgrew his wheelchair. My AFK provided a £3,500 grant towards a new chair for Jacob that has enabled him to continue enjoying being with his family and getting out and about with his dogs. “The chair is brilliant, and Jacob is loving it! It has given Jacob the independence he needs within his community.”
Tel: 020 8347 8111
Happy Days provides respite breaks, holidays and days out for children and young people with disabilities as well as for individuals, families and groups who support youngsters with additional needs. In 2018 Happy Days supported almost 25,000 children and work in every region of the UK. The application process is straightforward and both families and groups can apply for a range of experiences, including holidays for young people, residential trips for groups, experience days, group activities and accessible days out. Happy Days also offers support for young carers as well as children and young people affected by bereavement or domestic violence.
Shea, aged 14, has Down’s syndrome and attends a SEN school in Stevenage. When the Happy Days team first met Shea, he was sad as his older brother was going on holiday with friends, but because of his condition, he couldn’t go with him. Shea’s passion is music and so the charity arranged for Shea and his mum to have a really special day at the Rhythms of the World festival, where he went backstage and met musician, Paul Young. Shea said he had “The best day ever!”
Tel: 01462 530710
Sometimes it’s just good to talk. Contact provides a choice of support and advice services to help families dealing with the challenges of life as parents of a disabled child. They have a national information helpline service providing advice on benefits and finances, childcare, social care, education and medical matters, supported by online and printed resources. Alongside the free helpline, Contact also runs support programmes across the UK, including information workshops and drop-in sessions as well as parent support groups and online forums.
Free helpline: 0808 808 3555
As well as charities that offer general support for families with disabled children, there are also organisations that provide support for specific conditions and disabilities. If you need more tailored support, the following may be useful:
Signposting towards condition specific advice and support. www.scope.org.uk/advice-and-support
Specific advice and support for children with cystic fibrosis.
National Autistic Society
Guidance and support for autism, including diagnosis, care and education.
Advice about learning disabilities, including Down’s syndrome.
www.mencap.org.uk (Search: Young people)
Child Brain Injury Trust
Practical and emotional support for children with a brain injury and their families.