Nine in 10 parents of a disabled child have so little faith in the health and social care system that they believe their child’s disability care needs would not be met if they were no longer able to do it themselves, new research fromfinds.
At the root of the issue is the overwhelming lack of health and social care support families receive, with two-thirds worrying daily about being able to meet their disabled child’s needs and four in five parents having issues accessing the care services they need.
As a result, nearly three-quarters of those surveyed have experienced some form of mental health issue as a result of the continued strain, far higher than the one in six in the general population. This is compounded by a feeling amongst the surveyed parents that the general public simply do not understand the challenges families face when caring for their disabled child.
Sam, mum to 14-year-old son Henry said:
When you have a disabled child, you find out who your true friends are. Many of the people in our life simply don’t understand the challenges that we face caring for Henry, whose behaviour can be difficult at times. Day-to-day activities become an event in themselves. We no longer get invited to birthday parties and heading to the shop is a negotiation to rival the UN or Brexit. You truly start to question whether you need milk in your tea after all.
Health and social care services are integral to Henry and our family’s life, but most parents caring for a disabled child struggle every day getting access to the most basic of services they are entitled to. Once they do get past that hurdle, many are then faced with the prospect of spending hours on the phone, only to be told that there is no funding left, or to be placed on a waiting list.
It makes a tough situation harder when families already facing challenges much greater than others, simply cannot access any heath or social services to help guarantee the level of care their child is entitled to.
The Disabled Children’s Partnership has launched a new campaign,, which will highlight the day-to-day lives of disabled children, young people and their families. The similarities they share with everyone in the things they love and enjoy, but importantly, the unacceptable struggles they face on a daily basis, in living a life that we all take for granted.
With 43 per cent of people in the UK not knowing someone with a disability, The Disabled Children’s Partnership says it believes that with increased awareness and public support a real difference can be made to the lives of disabled children, young people and their families.
Amanda Batten, Chair of the Disabled Children Partnership, said:
The gap in health and social care services in England today means that families face enormous difficulties in accessing even the most basic support. There simply isn’t awareness of the challenges faced by disabled children, young people and their families.
This is even when completing what many would consider to be the simplest of tasks, with three in four of those surveyed naming shopping as the most challenging task in their day, closely followed by using public transport.
This is why we formed the Disabled Children’s Partnership, a growing coalition of 40 charities, to give us an amplified voice to campaign for social change and to bring to life the realities of the challenges disabled children, young people and their family’s face when living a life many of us take for granted.
We are launching the Secret Life of Us campaign because without awareness and understanding among the general public of the issues families face, we cannot effect real change. With the help of the public, we will fight for a country where disabled children and young people have the support and access to the same services and opportunities that most of us take for granted.
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