"HIDDEN ARMY" of Grandparents

18th January 2011 from Family Fund

Grandparents who raise disabled grandchildren have spoken for the first time of the enormous financial hardship, health problems, isolation and lack of support in a new report launched today by the Family Fund.

The report, ‘I Wish I Could Just be Grandma’, reveals the plight of this ‘hidden army’ of grandparent carers, who are thought to represent nearly half of all grandparent carers in England and Wales. It comes as the charity urges more grandparents caring for disabled children to come forward to access help.

Drawing on in-depth surveys of 324 grandparents caring for disabled children, and extensive research and studies of grandparent carers, the report reveals:

99% of respondents were bringing up a disabled child full time

More than 60% have a disability or chronic health condition themselves

4 out of 5 said they needed more financial help

Over 50% gave up work or reduced hours to take care of their grandchild

A third say they need a break from caring

Helen Collett from Birmingham has been full time carer to her grandson Shane, now 17, for the past 10 years. Shane’s dad, Brian, died in 2008 following a fight against drug addiction. Shane has behavioural difficulties, hearing and speech impairments. Helen said:

“I feel it is my responsibility to care for Shane, with or without support, since I owe it to Shane’s father who was a good dad. I wouldn’t let him down for the world. I’ve had particularly grueling fights for help from Social Services who I’ve found to be cold and largely unhelpful. When Shane was approaching 16, they knew he had special needs, but offered no help and support and said that none would be available.

“As well as financial worries, being a grandparent carer I’ve got specific concerns – my own health, loss of friends and peers, my ability to cope with a teenager. Grandparents and families such as ourselves are given little or nothing. Having to support our grandchildren on our pensions – alongside rising living and heating bills – is virtually impossible and we get no respite.

“We know how much the Family Fund supports disabled children and their families to help make them happy. My son Brian was always so grateful as it allowed him to buy things like a washing machine, fridge and laptop for Shane. He was especially grateful for the seaside holidays the Fund gave him. I know my son couldn’t have given his children any of that without their help.”

‘I Wish I Could Just be Grandma’ is part of the Family Fund’s work to raise awareness of the needs of families with disabled children. The Fund is also urging national and local politicians, officials and health service professionals to take action, calling for:

A review of the benefits and allowances which grandparents raising disabled grandchildren are entitled to receive, to ensure they get the support they are entitled to

Greater recognition by social services of grandparents who are their disabled grandchildren’s primary carers

• Recognition of the particular needs of grandparents bringing up their disabled grandchildren when planning local short breaks provision.

Clare Kassa, the Family Fund’s Network Development Manager, said :

“Our research shows the extent to which grandparents with disabled children are struggling – many don’t get Carer’s Allowance, some are disabled themselves, others have had to give up work or reduce working hours – and many feel isolated. However, they are clearly a gutsy group; determined to do the best for their grandchildren.

“These grandparents are not alone – there is help out there for them. The Family Fund is available to help bridge some of the financial shortfall these families face, but it’s crucial that there is greater recognition at local and national levels of the vital caring role they play. Without this, these carers will continue to fall beneath the radar and disabled children risk losing the vital care they provide.”

Sam Smethers, Chief Executive of Grandparents Plus, added:

“This is an important report. Grandparents raising a disabled child save the taxpayer billions of pounds a year in care costs, and for many that caring role won’t end when the child reaches 18. We are worried about the impact of welfare reform and spending cuts on this group.

“The Family Fund is a lifeline for families in this situation. We urge grandparent carers to contact them for help.”