Family Support
When you have a child with Down's syndrome, you may find yourself coming into contact with a range of services for special needs for the first time. There is help available but finding your way around the system may be daunting and confusing. Every area organises services slightly differently, but we hope the following information will be a good starting point.
General Information
Contact a Family produces a guide for parents called 'When your child has additional needs', which is a good introduction to services.
Early Support is a government initiative to co-ordinate and improve services for disabled children. It produces a range of resources for parents, including the ‘Family Pack' which is a comprehensive guide to ‘the system', and booklets on specific conditions. (The Early Support Down Syndrome booklet is available as a download on their website or from the DSA. Contact us with your name and address if you would like a hard copy).
The DirectGov website has lots of information about your rights and the help which may be available to you.
Social Services
Every local authority has a general duty to provide services for children ‘in need'. Children with disabilities are considered to be ‘in need', and most areas will have a social services team for children with disabilities. They may be able to provide support such as practical help in the home, or short breaks for your child with Down's syndrome. However, not all families will be eligible for help: before offering any services a social worker will carry out an assessment of needs.
You have the right to ask for an assessment of your child's needs, and also for an assessment for yourself (often the two assessments will be carried out together). You can contact social services directly or ask someone else to refer you, e.g. your health visitor or doctor. It is important before the assessment to think about what sort of help you need, e.g. is it difficult to spend enough time with other children, or do you need a break for yourself?
Direct Payments
Instead of receiving services from the local authority you can choose to receive a ‘Direct Payment' in order to pay for support that you organise yourself. This means that you can arrange help more flexibly to suit your needs, but does involve more responsibility and administration as it means that you become an employer.
For more information:
A Parent's Guide to Direct Payments on the Every Child Matters website
Mencap produces a range of factsheets on assessments and direct payments
Disabled Children's Register
Local Authorities have to keep a register of the disabled children in their area, in order to identify the level of need and to plan for the future. You do not have to register your child, and if your child is not registered you can still get services. However registration helps the Authority to plan services to ensure there is enough provision. The register may also be used to provide you with information about support and services.
Childcare
Good quality childcare should be available for every child. Every area has a Children's Information Service with information on local childcare provision. Details of your local CIS can be found on Childcare Link (Freephone: 0800 2 346346)
Working Parents
Working parents of a disabled child have additional rights to time off, and the right to ask for flexible working. The organisation Working Families has a project called Waving not Drowning that supports families who have a disabled child and want to work.
Using mainstream services
Lots of mainstream services, such as playgroups and leisure facilities, may well be able to provide for your child's needs. It may help to call in advance to ask how they welcome children with disabilities, and to discuss your child's specific needs. If you do this, under the Disability Discrimination Act the service has to make 'reasonable adjustments' to accommodate your child. If your child is still unable to access the service, but could do so with extra help, you may wish to apply for Direct Payments to pay for an assistant for your child.
Specialist help from the Down's Syndrome Association
The DSA has specialist advisers on benefits, education and health. If you would like to contact them, please call our Helpline.