Here’s some websites that might be useful. Please get in touch if there’s any you’d like to see added here.
Carer’s Allowance Information – Information about how to apply for Carer’s Allowance
Carer’s Assessment Information – Details on the ‘Carer’s Assessment’ for additional support for a Parent Carer of a disabled child
Carers Trust – Action, Help and Advice for Carers
Grants for Families and Carers – Information on financial support available to families and carers
National Network of Parent Carer Forums – Find your local Parent Carer Forum
Aids, Adaptations and Equipment – Information from Contact A Family about Disability Aids, Adaptations and Equipment.
Compass Card West Sussex – The free leisure discount card for 0-25’s with special educational needs and disabilities, offering discounts and special offers at dozens of facilities.
Council for Disabled Children – The Council for Disabled Children (CDC) is the umbrella body for the disabled children’s sector in England, with links to other UK nations.
Council Tax Disabled Band Reduction Scheme – You may be eligible for reduced Council Tax on your home if your house is adapted for a disabled person; you live in a larger property than you would need if you or another occupant weren’t disabled ie: you have an extra bathroom, kitchen or other room that you need for the disabled person; or extra space inside the property for using a wheelchair.
Disabled Facilities Grants – You can apply to your local council for a Disabled Facilities Grant (DFG). The grant helps you adapt your home to make it suitable for a disabled child. For funding costs above the DFG which can’t be met elsewhere, you can apply for help from Sullivan’s Heroes.
Disabled Facilities Grant Factsheet – Information sheet regarding the Disabled Facilities Grant and Application Process.
Disability Rights UK – Information on Disability Housing Grants.
Housing Information – Details on Housing Authorities and responsibilities around Disabled Facilities Grants.
The Money Advice Service – Money saving tips and discounts for disabled people.
VAT Relief on Disability Items – Information about VAT relief on disability adaptations and equipment.
Understanding Disabled Children’s Lives – Handbook detailing the legal rights of disabled children and their families in England and Wales.
Warm Home Discount Scheme – Information on this scheme to reduce your electricity bill.
Watersure Scheme – Details on this scheme to help with paying water bills.
Angelman UK – Support for families and carers of people with Angelman Syndrome (AS); providing support to professionals who meet AS individuals; plus aiming to educate and raise awareness of this rare neurological condition and the issues that surround it.
Caudwell Children – Providing family support services, equipment, treatment and therapies for disabled children and their families across the UK, Caudwell Children also run the Enable Sport programme for talented disabled athletes and the Destination Dreams holiday for children fighting life threatening conditions.
Head2Head Theatre – Enjoy Multi-sensory, Interactive, Walkabout Performance Storytelling for ages 2-19. Led by a team of Head2Head’s actors, participants will move around the venue, discovering scenes and meeting characters from the story. These fun performances were greatly enjoyed by Sullivan, his family and his carers.
Queen Elizabeth’s Foundation for Disabled People (QEF) – QEF work with people with physical and learning disabilities or acquired brain injuries to gain new skills and increase independence. Together with MERU, they also offer an individual design and manufacturing service of disability products for young disabled people, including the award-winning Bugzi – a powered indoor wheelchair for children aged one to six.
Ronald McDonald House Brighton – Ronald McDonald Houses enable families to maintain a degree of normal life while their child is undergoing medical treatment in partnered specialist children’s hospitals across the UK. The Brighton house was pivotal in ours and Sullivan’s life, allowing us to live close by and be near to him at all times during his over nine months of hospital stay.
Shooting Star Chase – From babies to young people up to the age of 21, Shooting Star Chase support families from diagnosis to end of life and throughout bereavement with a range of free of charge nursing, practical, emotional and medical care, including short breaks at two hospices (Shooting Star House in Hampton and Christopher’s in Guildford) and a comprehensive range of therapies and support groups for the whole family. Christopher’s hospice is an important part of ours and Sullivan’s life – having spent many a fun playgroup and swimming session at the hospice to name but a few key memories.
Wellspring West Sussex – an independent organisation and registered charity, set up to provide information, dialogue and discussion with and for children and young people with disabilities, and their parents and carers in West Sussex.