Families with disabled children are at breaking point due to a chronic shortage of support and services in their local area, charities, parenting groups and disability campaigners have warned.
Disability charities including Scope, The National Autistic Society (NAS), Sense, 4Children and The Family and Parenting Institute came together to make this claim as the Government prepares for the biggest shake up of support for disabled children or those with special educational needs (SEN) for 30 years.
The organisations are also concerned that changes in the Children and Families Bill could fail to improve the lives of families that have disabled children.
Scope warns that the Bill won’t plug the shortage of local services, which it says leave many families at breaking point as they battle to get crucial support for their disabled child.
A new report by Scope, Keep Us Close, found that almost two thirds (62%) of families with disabled children are not getting critical support such as childcare or nursery places, appropriate schools, essential therapies or even healthcare in their local area.
Some 60% of the more than 600 parents of disabled children Scope spoke to describe the process of getting their child the right services they need as a “battle”. Of the families who couldn’t access services locally, 80% said it caused them stress and anxiety. More than half (51%) said it had a negative impact on their ability to work and meant they missed out on family activities like birthdays and playing together.
Richard Hawkes, chief executive Scope, said: “The Government has a once-in-a-generation opportunity to end the daily struggle parents of disabled children face.
“More than 500,000 families have a disabled child. Life is tough for all families at the moment but the pressures and struggles placed on families with disabled children are pushing them to breaking point.
“The Government has recognised the issue and the appointment of a new Minister [Esther McVey] presents a huge opportunity to truly make this Bill work for all families. But at the moment, it doesn’t go far enough and won’t plug the gaps in local services that families with disabled children desperately need.
“For Scope it raises the question of whether the Government’s pledge ‘to make society more family friendly’ actually extends to those families with disabled children.
“The Government must be bolder if it wants to include families with disabled children in its pledge for a more ‘family friendly society’ and go further if it wants to genuinely relieve some of the immense pressure placed on these families.”
Mark Goldring, chief executive of Mencap, added: “We know from our work with people with learning disabilities, and their families, up and down the country that many are struggling to get the right support and specialist services, and that they have real fears about their finances in the future.
“Mencap hopes that the Children and Families Bill will transform the way local authorities work to deliver the services that families, children and young people need and are entitled to.”
Mark Lever, chief executive of the NAS, believes the Government has an opportunity to shape the future for a generation of children with autism in England.
“Our research shows that too many parents of children with autism have to battle to get their needs recognised, understood and met,” he said. “Forty-eight per cent of parents of children with autism surveyed said they have had to wait over a year to get appropriate educational support, and over a quarter have waited for more than two years.
“In order to fully meet the aspirations of these reforms, it is important that the Government listens to parents and ensures that children are able to get local support at an early stage to reach their full potential.”