Special needs support: local and national organisations

First published on Tuesday 13 September 2016 Last modified on Monday 30 July 2018

Have you any concerns about your child and feel they are not developing as well as they should? Does your child have autism, ADD/ADHD, Down's Syndrome, Special Education Needs or another disability?

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Maybe your child is dyslexic or asthmatic and you don't know where to look for help. As parents we all worry about our children especially when a friend, neighbour or family member has a child who is developing quicker. Children develop at their own rate but occasionally they need help due to underlying problems or learning disabilities. As parents we need support and guidance on how to encourage and assist our children in leading the best life they possibly can.

Local SN support

General support

National special needs support groups
My Rights, Your Responsibility: information for parents of disabled children on their child’s rights to access activities, community facilities and other services.
Tips for keeping warm
Disabled Children Parents’ Guide: Money Matters

Contact a Family is the leading UK charity supporting families with disabled children, and Netmums have teamed up with with them to make sure you get whatever support you need.

They can put you in touch with other families in similar situations; tell you about local support groups, give you information and advice on all sorts of things from medical matters to claiming benefits.

We found out all about Contact a Family and how they can help

We also have a Parent Supporter from Contact a Family working on our boards, and you can read more about Sarah here.

Special Educational Needs (SEN)

Parent Partnership Service

Would you like more information about Special Educational Needs? Your Parent Partnership Service may be able to help and put you in the picture. Most local authorities now have one and they are here to help you, as parents and carers of children with special educational needs and become more involved with your child's education.

They may be able to help you by making things as clear as possible, so that you are fully involved at all times.They offer information, advice and support to parents about the special educational needs system. The Service is confidential.

How can they help you?
Offer information and advice if you think your child may have SEN.
About the extra help for children at School Action or School Action Plus.
To explain what the assessment and statementing process involves.

Parents rights and views
Explain parental rights and the timescales for assessment and statementing.
Help parents to put their views to the Education Department.
Suggest how to take further action through the LEA and schools, if you are unhappy with decisions made about your child's education.

Paperwork
Help with paperwork and attending meetings and reviews.

Signposting
Help you get in touch with other sections of the Education Department that might be better able to help.
Help you get in touch with other professionals involved with your child.
Give information on Parent Support Groups and Voluntary Agencies.

Find out more here.

Pre-School Special Needs Service

The Pre-school Special Needs Services are also common throughout the country. Contact them to see what services they offer. They should be able to do the following:

What they offer
If your baby or child has any development delay or a disability, they can offer:

help in developing your child's skills
free loan of toys and play equipment for short periods
time to discuss your child's development, early learning and education
advice on and contact with, other agencies
If your child attends an early years educational setting other than a nursery class in a school, they can offer support to them if requested

What they do
They make regular visits to your home by appointment with you.

They offer practical help and support to you and your child by:

playing and working with your child using appropriate toys and play equipment
identifying, with you, those areas of your child's development to work on together
recording and rewarding the steps of learning - however small
suggesting things for you to try at home
giving you time to talk about your child
planning together the next step forward

My Rights, Your Responsibility: information pack for parents of disabled children

Produced by the Council for Disabled Children, My Rights, Your Responsibility is an information pack for parents about their child’s rights to access activities, community facilities and other services. So often disabled children are told they cannot join in for reasons relating to health and safety and their impairment. This pack tries to address those issues and details what needs to be done to ensure that children can safely join in and that the organisation providing the activity meets its responsibilities in terms of health and safety.

The Council for Disabled Children believes that health and safety should not be used as an excuse to prevent services becoming more inclusive but should be used to ensure that risks are minimised and that we move towards a situation where all children are given the opportunities to join in activities that they would like to do.

The pack consists of five basic leaflets and eight web-based information sheets, including:

Disability Discrimination Act
What is Risk?
What can parents expect from services
What can services expect from parents
Children’s rights to communicate their views and be listened to.

The eight web-based information sheets are:

The inclusion of disabled children and young people who have behaviour that is challenging
The inclusion of children and young people with epilepsy
The inclusion of children and young people with complex health needs who require invasive clinical procedures
The inclusion of children and young people with hearing and/or visual impairments
The inclusion of children and young people who require personal care
The inclusion of children and young people who require moving and handling
The inclusion of children and young people who communicate differently
The inclusion of children and young people who require additional help with transport.

If you'd like a pack of leaflets, email data@sdsltd.uk.com or phone 020 8676 9989. Alternatively you can download information from My Rights, Your Responsibility (Council for Disabled Children).