Guides on breaking disability news

BREAKING life-changing news to parents that their child has a disability is no easy task, but giving the worst-case scenario is no longer considered the best way to go about it.

Today Equality, Disability and Mental Health Minister John Moloney will launch tools for implementing the best way to communicate the sensitive news of a child’s disability to families at University College Cork.

The national roll-out of the guidelines, developed by the National Federation of Voluntary Bodies, follows their successful implementation across hospital, community and voluntary disability services in Cork during the past two years.

The Informing Families Project developed a range of tools and materials for supporting best practice at the time of a child’s diagnosis with a disability.

As well as the guidelines a website, www.informingfamilies.ie has been developed for health professionals and families. The website contains an e-learning module for health professionals.

Those completing it will receive a certificate from the Health Service Executive and the National Federation of Voluntary Bodies, an umbrella group of intellectual disability service-providers in Ireland.

A special teaching programme has been prepared for the country’s national training bodies and that will get under way later this year.

Included on the website is a welcome note from Katherine O’Leary, a parent of two children with disabilities, who chaired the Cork project.

Her daughter Julie has a physical disability and her son Diarmuid has an intellectual disability. They are both now adults.

“I often wonder why I cried so much in those first few weeks. I now have many occasions to cry with happiness and pride in their achievements,” she said.

Project coordinator Alison Harnett said breaking news of a child’s disability caused a huge amount of distress for families, with some remembering 20 years later how they were first told.

Ms Harnett said doctors used to believe that giving the worst-case scenario was the best thing to do, instead of acknowledging any uncertainty of what the child was capable of doing and working with the family.

“We are discouraging professionals from using terms like ‘this Down Syndrome child’. Instead we are encouraging them to use the child’s name first, such as Ben, who has Down Syndrome. We want them to give positive, realistic messages with hope.

“We are not saying that they should give a sugar -coated message. We want the truth to be told but do not want professionals to feel they have to give the worst-case scenario,” she said.

“We want families to have a positive and realistic understanding that people with disabilities live very full lives.”

In Cork University Hospital there was no designated area where parents could be told about their child’s disability, so the social work department donated one of their offices, which is now a family room with tea and coffee-making facilities.

“The door can be closed and families can have a very private conversation. Parents can stay there absorbing their emotions before they go back out and face the world,” said Ms Harnett.