Parents of children with learning disabilities are not receiving adequate support, says the Foundation for People with Learning Disabilities

Many parents raising a child born with a learning disability do not get the support they need, according to new research by the Foundation for People with Learning Disabilities. This research has informed First Impressions: Emotional and Practical Support for Families - a booklet for families of children with learning disabilities - that will be launched on Saturday 19 March.

The research aimed to address the emotional needs of families from the time of diagnosis until the child is five years old and explored four main areas:

•         How the diagnosis was delivered

•         Information given immediately following the diagnosis and during the following years

•         The emotional and practical support required at this time

•         The impact on family life, including the effects on other children, extended family and lifestyle
 

It found that while around half of all parents interviewed received adequate help, most described how they were left in the dark, forced to fight for a diagnosis, received poor information and were left to cope on their own.

One mother's tale of her child's diagnosis of Down's Syndrome was particularly negative.  Whilst recovering from an emergency Caesarean operation, she asked the midwife how her child was and was told, "you'll know when you see it".

The research also found that what happens to families in the early stages following a diagnosis is crucial - even relationships between parents can deteriorate because of the strain.

The Foundation's First Impressions: Emotional and Practical Support for Families booklet offers practical advice on topics such as coping with an initial diagnosis, pre-school education, getting help, family support and financial advice.

Hazel Morgan, Co-Director of the Foundation for People with Learning Disabilities, says:

"The emotional well-being and mental health of these families must be paramount: they are the life long supporters and advocates for their sons and daughters with learning disabilities.  We must empower families with a range of resources that address their needs, not only those of the child with a disability.  'First Impressions' will make a valuable contribution in this way."

First Impressions: Emotional and Practical Support for Families, written by Alison Cowan is available from 19 March from the Foundation for People with Learning Disabilities. 

Copies are free unless buying in bulk and can be obtained by calling 020 7803 1100 or visiting www.learningdisabilities.org.uk

For more information or media review copies of the publication, contact:
Laura Williams or Fran Gorman on 020 7803 1130 / 020 7803 1128 or email lwilliams@fpld.org.uk / fgorman@fpld.org.uk