Early Support
This project, run by the UK Government, aims to improve the support and services
given to families with young disabled children in England.
Down Syndrome Education Internationalhas been commissioned by Early Support (a project
funded by the Department for Education and Skills, SureStart and the Department
of Health) to take a lead in developing a range of materials about Down syndrome.
Through this project, the charity has led the development of new materials for families
with a young child with Down syndrome, working alongside an Advisory Panel.
The Information for parents – Down syndrome book aims to provide parents
of young children with Down syndrome with detailed and accurate advice about Down
syndrome and how it is likely to affect their child's development and education.
It also aims to provide information about useful sources of advice and support.
The charity has worked together with the Down's Syndrome Association (England and
Wales) and the Early Support team to write this book, and consulted extensively
with parents to determine the topics covered and the detail provided.
The Developmental Journal for Babies and Children with Down Syndrome is
designed specifically for families with a young child with Down syndrome and the
professionals who work with them. It aims to help parents and carers to keep a record
to celebrate their child's progress as well as identify the developmental areas
where the baby or toddler will benefit from extra help. Down Syndrome Education
Internationalhas worked closely with the Early Support team, the Down's Syndrome
Association, the Down's Heart Group, a panel of expert advisors and many families
over more than two years to develop and pilot this resource.
The Developmental Journal published as part of the Early Support project will provide
a valuable mechanism for collecting research data on the developmental progress
of young children with Down syndrome recorded by their parents.
Planned online versions of the Developmental Journal will enable data to be collected
more efficiently from a larger, international sample of children. This data will
provide a unique insight into the development of these children and will inform
the charity's future research plans.
Staffing
- Detailed and accurate information on Down syndrome provided to families of young
children, supporting informed decision-making.
- Parents of young children with Down syndrome better able to record their child's
progress and identify areas where help is needed.
- Over time, the parent-completed records will provide invaluable research data on
the developmental progress of a large sample of children with Down syndrome.
Progress
The Early Support materials have now been published. The Information for parents
- Down syndrome book was published in July 2005. The Developmental Journal
for Babies and Children with Down Syndrome was published September
2006. The charity is involved in providing training for trainers on an on-going
basis.
Funding
This project has been wholly funded by grants from Early Support.