About Reaching Families
Reaching Families is a parent-carer led charity that aims to “empower, inform and support parents and families of children and young people with special educational needs and disabilities in West Sussex.” We achieve our mission through the delivery of a range of projects and services that include parent guides, factsheets, animations, training workshops, befriending, counselling, support groups and a Facebook community of over 3,000 members. www.reachingfamilies.org.uk
Making Sense of SEND
Learning that your child has special educational needs or a disability can be a bewildering, scary and confusing time that many parents understandably struggle with. Organisations like Reaching Families exist to support parents during these times and help them gain the knowledge, skills and self confidence to support themselves, their child and their family.
There is lots to learn when you discover your child has SEND but as the saying goes all journeys with one small step. We would recommend taking the following steps to help you get started on your journey: –
Finding out about your child’s condition
The internet can be an unreliable source of information on issues like special educational needs and disabilities (SEND) particularly in the case of conditions like ADHD and Autism where there is sadly too much inaccurate and unhelpful information and advice. For that reason Reaching Families have published a series of factsheets on major childhood disabilities and conditions that combine clinical information with local information on relevant projects and services. Please see www.reachingfamilies.org.uk/factsheets.html for further information.
Parents in West Sussex are lucky to have a number of high quality information resources available to them in both electronic and paper based format. In addition to our factsheets Reaching Families publish two handbooks for parent-carers that cover a range of subjects. The first of these books, Making Sense Of It All, was designed to provide information to parents of younger children. It is often referred to as the “parent-carer Bible.” You can download it in either iBook or Kindle format from www.reachingfamilies.org.uk/ebooks.html
Parents can also find out about local services using the West Sussex Local Offer, an online directory of public, private and voluntary services plus a mine of other useful information and resources. For further information, visit https://westsussex.local-offer.org/
Talking to other parents
Parents of children with SEND will often be heard to say their best source of support is other parents of children with SEND. It can be a fairly unique life experience so learning from someone who has been there and done it can be immensely beneficial. If you are waiting on a diagnosis for your child or have a diagnosis and wondering what to do next, Reaching Families can help by matching you with a parent befriender, an experienced and specially trained volunteer who can provide you with emotional support, information and signposting. For further information on this service please visit www.reachingfamilies.org.uk/befriending.html
Parent Support Groups
We are fortunate in West Sussex to have a large number of parent support groups that are a vital means of parents building relationships, accessing information and other types of support. Reaching Families run three parent support groups called Umbrellas. In normal times, they are delivered in Billingshurst, Littlehampton and Worthing. Owing to the coronavirus pandemic we now deliver a weekly virtual Umbrellas via zoom.
There are many other groups in the county, some covering geography, others focussing on a particular condition or disability. You can find groups relevant to you in the local directory of Making Sense Of It All – www.reachingfamilies.org.uk/ebooks.html
In virtual terms Facebook is where parent-carers meet. There are a large number of excellent support groups on Facebook with members only too happy to provide other parents with information, advice and support. Reaching Families Facebook group is the largest in West Sussex with over 3,000 members. We recommend joining in order to meet other parents and stay up-to-date with local and national news. https://www.facebook.com/groups/132463616830248/
If your child has additional needs they may qualify for Disability Living Allowance (DLA) which is awarded towards the cost of personal care and mobility. If your child is over 16 then can apply for the adult equivalent of DLA, Personal Independence Payments (PIP). You may also qualify for Carers Allowance if you provide 35 hours or more care per week and earn less than £128 after tax, National Insurance and expenses.
Reaching Families have produced several factsheets on these subjects (see above link). We also have dedicated chapters on benefits in our two parent-carer guides, Making Sense of It All and Making Sense of Adult Life. Both of these can be downloaded as e-books from our website, www.reachingfamilies.org.uk/ebooks.html
West Sussex County Council also run a Benefits Advice Service for families of children and young people with SEND. You can contact this service on 03302222569 or email them at Robert.firstname.lastname@example.org
Getting support from Social Services
If your child has a lifelong disability acquired before the age of 25 you may be able to get the help and support of a social worker from the Lifelong Service at WSCC. If your child has complex needs you will be referred to the Child Disability Teams. This may lead to a social care package of support or a Personal Budget. If your child does not meet the criteria for support the Lifelong Service will advise on other organisations who may be able to help. In the first instance contact the specialist Disability Social Worker within the Multi Agency Safeguarding Team (MASH) who you can contact on 01403 229900 or email them at MASH@westsussex.gov.uk
Getting support for your child at school
If your child has special educational needs or disabilities they may qualify for support at school via SEN Support or an Education, Health & Care Plan (EHCP), a legal document detailing what your child’s needs are and what provision is required to meet those needs. If you believe your child’s needs mean they are struggling at school you can request that an EHC Needs Assessment is carried out. This will involve getting advice from a range of professionals to decide if an EHC Plan is needed. To request an EHC Needs Assessment contact West Sussex Special Educational Needs Assessment Team (South) on 03302223120 or SENAT.South@westsussex.gov.uk or the North team on 03302222722 or SENAT.North@westsussex.gov.uk
Short breaks, commissioned by West Sussex County Council, provide fun, leisure and social activities outside the school day for children and young people with special educational needs and disabilities. They include sports, youth clubs, buddy schemes, holiday clubs and 1-2-1 support. You can find out more about the short breaks that are currently on offer via the Short Breaks Facebook page – https://www.facebook.com/groups/407136026068540/
Amaze Compass Card
The Compass Card is a free leisure discount card for 0-25 year olds with special educational needs and disabilities run by Brighton based charity, Amaze. The card offers discounts to over 300 venues across Sussex including leisure centres, soft play, theatres, farms, cafes and more. To register for a Compass Card visit their website at www.compasscard.org.uk
Other local services
There are a range of providers in West Sussex that can help families with various aspects of their child’s care and support. These include: –
Carers Support West Sussex – provide a range of services to carers generally including counselling, access to relaxation therapies, a Carer Wellbeing fund, support groups and a Carer Response Line. www.carerssupport.org.uk
West Sussex Parent Carer Forum – information, training and support for parent-carers of children and young people with SEND. www.wspcf.org.uk
West Sussex SEND IAS – impartial information, advice and support on education and education law to children and young people with SEND and their parent-carers. www.westsussexsendias.org