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Making information accessible

Sharon Kirkby of CHANGE, a UK national organisation for people with learning disabilities, reports on the launch of its handbook, You and your baby 0-1.

More people with learning disabilities are having children and exercising their right to a family life. However, parents with learning disabilities are losing their children. The children are removed by social service teams when a ‘crisis’ is noticed in the family. There is no training manual to refer to and a distinct lack of communication between professionals concerning the welfare of these families. Action is being taken to prevent the crises. Training delivered by parents with learning disabilities in order to change attitudes, the provision of practical and accessible information and appropriate support when needed are just the start.

You and your baby 0-1 year is a book which uses easy words and pictures to guide parents through the first stages of their baby’s life. The easy words and pictures make the book accessible to parents who have learning disabilities and parents whose first language is not English.

 The book was researched and compiled by Frances Affleck, based upon the non-accessible Birth to five book which is presently distributed free by the National Health Service. Birth to five contains a huge amount of information which many parents cannot understand! It simply does not suit everyone. Most importantly, it does not suit the parents who need it most!

A national steering group was set up, comprising of parents with learning disabilities and professionals to inform the project. Several of the parents with learning disabilities had already had their children removed.

“The provision of accessible information is a major factor in providing support to parents with learning disabilities.”
Highlighting the issues

To launch You and your baby 0-1 year, CHANGE hosted a national gathering of parents with learning disabilities and professionals in January 2005 at the Bloomsbury Hotel in London. The aim was to get parents and professionals learning from each other how to develop good practice and keep families together.

CHANGE targeted a wide range of professionals, highlighting that the issues raised in the research to the book are not simple. Delegates included midwives, community nurses, housing officers, child and family social workers and representatives from the government. The workshops included subjects such as human rights, domestic violence, direct payments, how to support parents with learning disabilities, sexuality, advocacy, making information accessible, support for fathers, and how to survive in court. Workshops were delivered by parents with learning disabilities plus support. Members of CHANGE ‘Rainbow Group’ performed a play called Keeping the baby which stresses the importance of good support, ways to use You and your baby 0-1 year and how drama is a good way to get a message across.

The national gathering ended with the creation of a list of demands to be presented to government departments.

The provision of accessible information is a major factor in providing support to parents with learning disabilities and CHANGE continues to campaign for You and your baby 0-1 year to be distributed free of charge to all parents who need it as soon as they become pregnant.

At the moment, You and your baby 0-1 year is only free to parents with learning disabilities if it can be purchased for them by a health visitor or midwife. The book costs £30 (plus £6 p&p) and is also available on audiocassette, price £7. To obtain a copy of the book or find out more about issues surrounding parents with learning disabilities, please contact:

CHANGE,
Units 19/20, Unity Business Centre,

26 Roundhay Road,
Leeds LS7 1AB, UK.
Tel: 0113 243 0202
Fax: 0113 243 0220
Minicom: 0113 243 2225
E-mail: changepeople@btconnect.com

Sharon Kirkby


First published in Disability, Pregnancy & Parenthood international, Issue 49, Spring 2005.

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