Families with disabled children have the same hopes and dreams as other families but often face bureaucracy and prejudice trying to achieve them.

That’s the finding of a new Contact a Family report Our family, our future which features the stories of 30 UK families whose children are affected by a range of disabilities and rare conditions.

Srabani Sen, Chief Executive of Contact a Family, said: “Families with disabled children are just like other families; they want the best for their children. But frustratingly they face a barrage of bureaucracy and numerous battles to get the best for their children, which prevent them from enjoying family life.”

All families show strength, determination and creativity in overcoming the challenges and pressures they face and there is a real sense of overwhelming love and pride for their children:

“Our greatest achievement was being able to bring our little girl home from hospital. We learnt all the procedures to care for Sienna. It’s the most amazing feeling waking up in the morning with all the family home together.” Natalie Pearson

But there are those at breaking point because of the constant battle to get support and help for their children and themselves, which is preventing them from enjoying family life:

“Our biggest frustrations are the multiple battles with social services…. Alex has a progressive, degenerative condition and yet, every year the council tries to reduce his care.” Sara Hunt

Many are worried about the future and what will happen when they are no longer able to care for their child. There is great uncertainty about the support available to those who reach adulthood and this is adding to the pressures that families are under:

“It is absolutely terrifying thinking about the future. As long as we are here it is fine, but who will look after her when we’re gone? Will she be put in some kind of home?” Julie Ryan

Others have to live with the heartbreaking knowledge that their children have life threatening conditions:

“Every day is a bonus and we must live day to day. Our future is today and each hour is very precious. We can’t worry about next year, we just have to think about the here and now.” Clare Lally

And most worry about how society accepts people with disabilities and wish for increased understanding and tolerance:

“Before Max was born, I was unaware of disability and the impact it has on a family. I hope those people whose lives Max touches will become more tolerant and understanding.” Nicola Reid

Contact a Family would like to see families with disabled children given the same opportunities as others and is calling for:

• Government to invest in a campaign to raise awareness of the needs of families with disabled children
• Stronger focus on disability awareness taught in early years and schools
• People working in a public facing role to be given disability and equality training – so that they can recognise the unique talents that children bring – because of their disability.

The Our family, our future report is accompanied by an exhibition of photographs which will be touring the UK.

Our family, our future