Fathers with disabled children feel marginalised

New study of carer dads reveals shock findings

• Two-thirds have relationship problems
• 15% keep their child a secret from their employers

An eye-opening new survey of UK dad carers provides a dramatic insight into their experiences of looking after disabled children.

It illustrates the shocking truth that fathers aren't getting the support they need and are left feeling marginalised.

Dads are battling against many misconceptions and challenges when trying to juggle work and caring. The survey shows that they are doing all they can to be involved but face hurdles every step of the way.

In short, they want their voices to be heard, to be given more consideration in terms of support and to be acknowledged as having an important role as a parent, on a par with their female counterparts.

New report shows that dads:

• Feel greater financial pressure as carers – the vast majority worry about money and many feel they are seen only as the breadwinner
• Do not get support from colleagues or bosses
• 15% say their workplace does not even know they have a disabled child
• Are unaware of their right to request flexible working – four in ten do not know this is an option
• Do not fully understand their child's condition – four in ten do not fully understand their child's disability and a third are not confident in caring for their child
• Suffer relationship problems – two-thirds say their relationship is suffering
• Want more support – eight in ten feel alone but only about four in ten get help from support groups or professionals

Netbuddy and Scope

Netbuddy and Scope, two vital national charities working to give carers and families the support they need for looking after disabled sons and daughters, joined forces on the research project.

Entitled Dad and Me, the aim is to raise awareness of the issues facing dads who are looking after disabled children and show that much of what they are doing is hidden from view.

They questioned 500 father carers during April 2012 and asked what they think about the support systems in place for them and how they are coping. They talked to dads with children of all ages, from young fathers with babies to older dads with grown-up children.

The remarkable findings suggest that thousands of dads in the UK are not getting the help they and their children need.

Caring for a disabled child

One dad gave his heartbreaking account of what caring for a disabled child means.

"I feel utterly isolated and condemned to a life of futility and hopelessness," he says. "My friends have abandoned me because they don't understand why I have to care for my child so much. And I know she won't ever get better. I'm likely to die early due to chronic stress and lack of sleep. My career, once promising to put me at number one in the world at my specialist area, is now going nowhere as permanent exhaustion means that talking intelligibly is a major achievement. But I love and care for my child. It isn't her fault."

Many of the dads involved in the study had similar comments and stories, and all of them just want to do their best for their child.

Deborah Gundle, who set up Netbuddy as a mum carer to bring families and professionals together to share help and advice, says the results makes for difficult reading.

"We wanted to highlight the important role that dad carers have, but to realise the extent of the problems dads are facing has been overwhelming," she comments. "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."

Richard Hawkes, Chief Executive of the disability charity Scope, added:

"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 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*."

Improving the situation for dads with disabled children

The survey also asked dads about how the situation could be improved and what could be changed to ensure they have the support they need.

• Appointments outside working hours
• Meetings, medical appointments, courses and support sessions are often held during the working week and dads in employment find it difficult to get time off. If more of these could be held at evenings and weekends, dads could have more involvement. This also applies to things such as coffee mornings, social clubs or play sessions to allow dads to interact with other families.
• Forums for dads
• Help and advice on day-to-day issues targeted at dads, perhaps in a forum or one-to-one basis. In particular, dads want suggestions that are based on their situation, not hard and fast rules that might not work for them.

"Sometimes having someone to look at your situation in a pragmatic way and offer advice could be really helpful especially when your head is not in a place to be thinking rationally," one dad points out.

Respite care

Children, mums and dads all need a break, but many fathers simply cannot find respite care services to give them some valuable time to themselves.

In many situations, lack of funding has been cited as the reason behind lower levels of respite care.

Employer awareness

Many dads are afraid to tell employers about having a disabled child or asking for time off for fear of jeopardising job security and being overlooked for promotion.

Greater or better integration

Dads realise the need to balance their child's specialist care with quality time within the wider community. They want more opportunities for their sons and daughters to integrate with others in their age group in 'everyday' social situations.

"Mainstream clubs and activity groups could do more to welcome children with special needs. I feel this can sometimes hold my son back," one dad explains.

• Read Richard's story
• Read James' story