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Dad And Me

June 17, 2012

I can honestly and proudly say that my dad has always been brilliant at dealing with both me and my disability. Sadly, however, I can also say I am not surprised by the very high percentage of men who admit in this new research to not being so brilliant.

The traditional breadwinning role of fathers in families with disabled children is putting severe pressure on their relationships and causing a third of men to lose confidence in their ability to care for their own child, according to new research.

A survey of fathers found that more than eight out of 10 (84%) feel financial pressure as a result of caring for a disabled child, forcing them to work long hours. Seven out of 10 (72%) say caring for a disabled son or daughter has severely affected their relationship with their partner, with many breaking down through stress, tiredness and lack of time with each other.

But it was also found that the drive to provide for their children often forces fathers to miss family appointments with health professionals – meaning that almost four in 10 say they do not fully understand their child’s condition. One in three say they are not fully confident that they know how to care for their child.

The survey of 500 fathers, entitled Dad and Me – produced by Scope, the charity for the disabled, and Netbuddy, a website that provides help to people dealing with disabilities – has been published on Father’s Day, to raise awareness of the issues.

Other findings in the survey reveal:

■ Nearly half of fathers (43%) keep the fact that they have a disabled child a secret from their boss.

■ Six out of 10 (61%) think mothers are treated differently from fathers, with 84% feeling excluded at coffee mornings, social clubs and support groups.

■ Four out of 10 feel sad or lonely as a result of caring for a disabled child.

■ Nearly two-thirds (63%) say they cannot easily talk to others when times are difficult.

Richard Hawkes, chief executive of Scope, said the challenges facing men in this position. He said: “Every day we hear from parents of disabled children as they struggle to juggle demands, from caring for their child to fighting to get the support they need. But we also hear heart-warming stories of parents overcoming challenges and starting to believe in the possibilities for their child.

“Too often it’s the mums at the centre of the story. That’s why we set up a dad’s support groups, which we’re looking to expand. This survey shows that everyone involved in supporting families’ needs [should] look long and hard at what can be done to support dads to play a part in caring for their children.

“If the government is to meet its aims of creating a family-friendly society, keeping people in work and improving support for families of disabled children, it needs to do more to promote the value of flexible working to support family relationships and family finances.”

Deborah Gundle, who, as a mother and carer, set up Netbuddy to bring families and professionals together, said: “We wanted to highlight the important role that dad carers have, but also to realise that the extent of the problems dads are facing has been overwhelming. Even I had not considered the extent of dads’ involvement – both emotionally and practically – and it is commonly the case that mothers are assumed to take all the responsibilities of caring on board.

“This survey is a real eye-opener and gives a truly inspirational account of how much dad carers do for their children. It is time that society opened its eyes and took action to give better support to fathers with disabled children. At the moment, they just aren’t getting the help they need.”

Gareth Sutton, who lives in north-east Hampshire, is a carer for his youngest daughter, Zoe, 2, who has Down’s syndrome and underwent major heart surgery at just three months. He believes that, when in their own homes, fathers are almost as confident as mums when it comes to caring, but “take them out of their comfort zone and put them with a group of mums and I’d say they definitely don’t feel as confident”.

He added that to instil more confidence in fathers who care for disabled children, support and understanding – “reassuring them that being a carer doesn’t detract from their masculinity, or role in a typical family hierarchy” – are vital.

“Peer acceptance and understanding of what they are doing as a carer by everyone they come into contact with could make a massive difference,” he said. “I just don’t think enough dads would be prepared to find out what support they could get – or even admit that they needed support.”

Scope and Netbuddy propose that appointments with health professionals should be more easily arranged outside of working hours, that fathers should be encouraged to be open with their employers about their children’s disability, and that greater information should be made available about flexible working.

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