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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Parents Say Doctors Give Little Support After Down Syndrome Diagnoses
By Dave Reynolds, Inclusion Daily Express
June 6, 2006

BRADFORD, ENGLAND--Health professionals continue to have outdated and biased views about children that have Down syndrome, which lead them to encourage expectant parents to seek abortions and new parents to turn to adoption.

That's one of the conclusions of a study released late last month by the Down's Syndrome Association.

Those parents who decided to keep children diagnosed with Down syndrome said they received little in the way of support or important information from pediatricians and midwives. More than one-third said they were given no written information about the condition; forty percent said they received no information about such things as local parent support groups; and two-thirds said they were given their child's genetic screening results over the phone rather than in person.

"The phone rang and I was told that my baby had Down's syndrome. I was immediately offered a termination and 'genetic counseling,'" parent Johanne Walters said in a DSA press statement. "What I needed was balanced, thoughtful advice . . . All the information that doctors gave me was negative and seemed to question why anybody in their right mind would have a child with special needs."

The association is recommending that families be given information on Down syndrome before they decide whether or not to seek genetic testing; that all results be given in person; that healthcare professionals be trained and given up-to-date information about the disability; and that every maternity unit be linked with a parent of a child with Down syndrome for the new parents to contact.

"It is vital that parents are given the diagnosis in a sensitive and decent way, and provided with a balanced and informed view to enable them make a decision on the future that is right for them," said DSA Chief Executive Carol Boys.

Related:
"Health staff 'fail Down's parents'" (This is Bradford)

http://www.inclusiondaily.com/news/06/red/0606a.htm
Down's Syndrome Association
http://www.downs-syndrome.org.uk

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