If you are the parent of a young disabled child, you may get help from the Early Support Programme. This programme is a starting place to find out about your child's condition or impairment.
The programme:
Early Support has developed a range of disability-specific leaflets containing information about disabilities. These are intended as a ‘first step’ in informing parents about the disability and pass on information and advice from other parents. There are specific disability booklets including:
There is a booklet covering the situation where no diagnosis has yet been made. This can be necessary because a child often needs support services before a diagnosis is made.
There is also an Early Support Family Pack, which informs parents about services to support them and to help families to know what to expect by way of good service provision and what to ask for.
The pack contains a background information folder containing booklets explaining health and social services and what they should provide for you as well as childcare, financial help (for example Disability Living Allowance), information on education and more.
Part of the Early Support pack is a family file. This includes the following sections:
About your child
There is a section called 'introducing ourselves' to write information like your child's disability, medical history, what they do and don't like, which language is used at home and more. Most parents and carers found they were repeating themselves so this part of the pack aims to cut down the time you spend saying the same information to different people.
Professionals working with you
Any new professional that comes to work with your family, for example an occupational therapist or nurse, can write their contact details in this section. It keeps all relevant names and numbers in one place in case you need them.
Record of professional contacts
Here you can list all the meetings you have with professionals and there is space to write any follow-up actions. Some carers find this useful to tell another family member who was not present at the meeting what happened. Often there are many details to remember and this is a way of noting what was talked about.
Family service plan
This is where you and the professionals working with you write about the services and support you think would help your child and set out a plan of who is going to provide help and when.
What your child can do now
By writing down what your child is capable of now you will see how far they have progressed over time.
Local organisations and contacts
You may find it useful to talk to other parents and carers who are in the same position as your family. This is the place to list local organisations that may be of interest to you. Your key worker (this is someone who co-ordinates your child's care) will probably be able to tell you what organisations are available in your area.
Questions and drawings
There are places to stick photographs and write lists for questions you may want to ask. Brothers and sisters often enjoy being involved in sticking things in and drawing on the appropriate pages.
For more information about these packs talk to your key worker or health visitor. The packs and booklets may be available at you local children's centre.
There is more information about Early Support on the Every Child Matters website.
Find out more about the types of support available to increase your child's independence including grants, adaptations and equipment. The Disabled Living Foundation have several factsheets detailing mobility, daily living and play equipment for children.