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Useful Links

Here’s some websites that might be useful. Please get in touch if there’s any you’d like to see added here.

Carers Grants and Benefits

Carer’s Allowance Information – Information about how to apply for Carer’s Allowance

Carers UK Information – Details on additional support for a Parent Carer of a disabled child

Carers’ Assessment, Breaks and Respite Care – Details of options following a Carer’s Assessment

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

Disability Grants, Benefits and Information

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.

Disability Law Service – Information about Disabled Facilities Grants

Disability Living Allowance (DLA) – Information on applying for Disability Living Allowance for your child. Associated Medical Guidance Notes on how DLA is decided can be found here.

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.

Disabled Facilities Grants Good Practice Guide – a detailed guide to related legislation, guidance and good practice within Disabled Facilities Grants.

Disabled Facilities Grant Information – Details on Disabled Facilities Grants from Shelter.

Disability Rights UK – Information on Disability Housing Grants.

Document M – Information about Building Regulations in England to ensure that people are able to access and use buildings and their facilities. For Wales’ Building Regulations click here.

Fire safety for disabled people – Fire safety tips for disabled people and those who care for them, plus information abut registering with your local fire and rescue service if you have sight, hearing or mobility issues or if you use oxygen. This will mean a fire crew is made aware of your circumstances in the event of an emergency.

Priority Services Register – a free service provided by suppliers and network operators. Each energy supplier and network operator maintains its own register. To get on it, you need to contact your service supplier.

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.

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.

Donating and Fundraising

Payroll Giving – Payroll Giving is a way of giving money to charity without paying tax on it. It must be paid from someone’s wages or pension. Your employer needs to set up and run the scheme. The amount of tax relief you get depends on the rate of tax you pay.

Support and Services

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.

Rebound Therapy – has a huge number of benefits for people across virtually the whole spectrum of disabilities. The Rebound Therapy team of approved tutors provide accredited training courses throughout the UK for Teachers, TA’s, care staff, physiotherapists, OT’s plus more. The course includes training in planning, measuring and recording progress and providing evidence of outcomes.

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.