I am a Parent Carer
As parents of children with a disability or long term illness life can be incredibly demanding. Many parents spend so much time fighting for support and services for their children that they don’t have time to think about themselves. If you haven’t already stopped to consider your own emotional and physical health now is the time to do it. We would love to discuss your situation with you and help you to put together a ‘plan’ to take care of yourself.
Important Links
Key organisations for accessing up to date information, support, advice and friendship.
Mind - West Sussex
Peer Support groups (online and in person) 1:1 peer support; guests speakers covering topics chosen by parents including those affected by self-harming, Autism, ADHD, planning for school transitions; Training and signposting
WSPCF
West Sussex Parent Carer Forum supports parent carers by providing information; signposting, training; opportunities to meet other parents and participate in shaping services for their children and young people
Reaching Families
A Charity providing a wide range of high quality information and support including Parents Guide; Benefit Advice Service; Fact sheets; Support groups; Befriending service; Workshops and Training; Animations; Facebook group.
Autism Support Crawley
A voluntary Parent Carer Led Support Group for parents and Carers of anyone with Autism who lives in West Sussex. Face book Page; Events for the family
Why Register with Us?
By registering as a Carer, you gain access to diverse free support including tailored guidance, networking with fellow carers, workshops, and local information.
Specific links to websites providing information and advice for Parent Carers
Use The quick links below to be taken to your section of interest
Local Authorities
Contact children’s Services through their ‘Integrated Front Door’ or call in at one of the family Hubs in your area to ask for support for your family:
Integrated Front Door:
Tel: 01403 229900
Email: WSChildrensservices@westsussex.gov
The person you speak with can offer advice over the phone and refer you to the Early Help Service or The Children with Disabilities Team depending on the level of support you need.
Family Hubs: Click to visit website
Call in at one of 12 family hubs to speak with an Early Help family worker. To arrange a visit in advance call the Integrated Front Door: 01403 229900
Early Help Service: Click to visit website
Family workers provide advice and information and make referrals for support from services within the local community. They can help parents to get support from schools, health visitors, housing officers and other professionals. They offer support in times of crisis and are able to refer for food parcels and vouchers.
Child and Family Needs Assessment: Click to visit website
Contact for families provide clear information about Child and family Needs Assessments. Contact the Integrated Front Door to ask for an assessment.
Friendship and Support from Other Parents
Reaching Families: Click here to visit website and click here to visit Facebook group
West Sussex Parent Carer Forum: Click here to visit website and here to visit Facebook group
Autism Support Crawley (for parents across the county): Click here to visit Facebook group
Activities for children/Breaks for parents
Short Breaks: Click here to visit website
Activities, holiday clubs and play schemes that help children and young people to develop confidence, socialise, build skills for independence, meet new friends, and have fun. Some activities don’t require the parents to stay which allows them a break from caring for their child or young person.
Brothers and Sisters
Brothers and Sisters of children with a disability are often called Young Carers. This is because although they may not be directly involved in caring, their home life, school life and friendships are affected.
West Sussex Young Carers: Click here to visit website
Sibs: Click here to visit website
Sibs is a national organisation helping parents to understand and support their children through workshops, information and advice. A website with information and the opportunity to ask questions and share experiences with other children.
Benefits and Services
Talk to a Benefit advisor
Carers Support West Sussex Benefit Advice Service: Click here to visit page
Click the above link to read more about our benefits services. Alternatively, contact us by email, phone to book an appointment to talk with our Benefit Advisor.
Reaching Families Advice Service: Click here to visit website
Benefit Information and resources
Cerebra: Click here to visit website
Step by step guide to claiming Disability Living Allowance and how to appeal a decision
Scope: Click here to visit website
Benefit information and appeal resources
Disability Rights UK: Click here to visit website
Contact: Click here to visit website
Education
West Sussex Information, Advice and Support Service (IASS): Click here to visit website
Help and support for parents in getting the right education for their child. Advice and one to one support with statutory assessments and statements or Education Health and Care Plans (EHCP) annual reviews, appeals and tribunals.
IPSEA: Click here to visit website
Free independent legally based advice around getting the right education for your child. Advice line, Tribunal advice line and downloadable template letters and resources.
Funding
Disability Register: Click here to visit website
Signing up to the West Sussex County Council Disability Register automatically provides families with a MAX Card for discounts on attractions and activities across England. For more information about the Disability Register and to sign up and request your MAX card please click on the link above.
Compass Card: Click here to visit website
The Compass Card is a discount card for 0 to 25 year olds with special educational needs or disabilities who live or go to school or college in Brighton & Hove. You can use the card at lots of leisure venues to get discounts or special offers.
Family Fund: Click here to visit website
A means tested grant for families with a child up to the age of 17. Applications can be made every 15 months for: white goods, days out, holidays, beds, equipment, clothes etc.
Turn2us: Click here to visit website
A national charity that helps people in financial hardship to gain access to welfare benefits, charitable grants and support services – online, by phone and face to face.
The Local Offer Guide to Discounts and Grants: Click here to visit website
Workshops
Understanding and Managing Behaviour, the Education System, Benefits, Money Management, Confidence in meeting with professionals, Mental health, Diagnosis, building resilience and looking after your own wellbeing.
The following organisations are providing courses on line as e–learning, webinars and live virtual workshops. Numbers in most have been limited to ensure that people still have the chance to interact and ask questions.
Reaching Families: Click here to visit website
Mind workshops and online training: Click here to visit website
Contact: Click here to visit website
Expert Parent Course: Click here to visit website
Aims to help parents understand the (health) system
Renaissance Legal: Click here to visit website
Webinars, events and written resources around future planning.
Renaissance Future Planning Guide: Click here to visit website
Parents of Autistic Adults 16+ may like to join our friendly group for Carers of Autistic Adults or attend our PAPA workshops to explore the complexities of living with and supporting an autistic adult
Planning for the future
Renaissance Legal: Click here to visit website
Webinars, events and written resources around future planning.
National Organisations
Information, advice, training, resources, and template letters for writing to official bodies such as the local council, social services, education and health providers
Cerebra: Click here to visit website
Contact for Families: Click here to visit website
National Autistic Society: Click here to visit website