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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.

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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.

Support and Advice

Parent Carer Groups

A chance to check in and say hello to other parents, to talk or just to listen, to ask questions, share experiences and learn more about our services. You are welcome to pop in for as long as you like. We meet on Zoom on the 3rd Tuesday of each month at 10:30am to 12pm.

Virtual Drop In - parents of Children with SEND
Virtual Drop In - parents of Children with SEND

19 March 2024 10:30 - 12:00

On Line Zoom group for Parents of Children with Special Educational Needs and/or Disabilities

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

https://www.carerssupport.org.uk/autistic-adults/

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

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Advice and Support

We've put together a directory of our partner organisations in Arun. Click on the organisation names below to find out more.