A new survey of UK dad carers provides a dramatic insight into their experiences of looking after disabled children.
It illustrates that fathers often aren't getting the support they need and are left feeling marginalised. 15% of those interviewed even admits to keeping their child a secret from their employers.
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.
The study questioned 500 father carers during April 2012 and asked what they thought 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 study found the 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
- Are unaware of their right to request flexible working – four in ten do not know this is an option
- Often do not fully understand their child's condition or are not confident in caring for their child
- Want more support – eight in ten feel alone but only about four in ten get help from support groups or professionals
Deborah Gundle, from Netbuddy says the results make 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. "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."
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.
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."
At present, parents of disabled children have a statutory right to ask their employers for convenient hours. Under the law the employer must seriously consider an application you make for flexible working, and only reject it if there are good business reasons for doing so.
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.
"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.
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.
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.
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.
Netbuddy and Scope
Netbuddy is an award-winning online community for parents, carers and learning disability professionals. It is a space to find practical ideas, swap tips and access information on all aspects of supporting people with learning disabilities and autism. Information on the site is submitted by people with first-hand experience of learning disabilities.
Scope works with disabled people, of all ages, and their families, across England and Wales. We offer practical, everyday support and deliver campaigns that can change lives.
Scope provides support for Dads through its helpline, its network of regional support workers and Face 2 Face – the one-to-one befriending service for parents of disabled children.
What do you think of these results? Do you have any experience of the issues outlined in this survey? Let us know by leaving a comment below.