Leading advocates for children with disabilities have warned the government that the proposed Children and Families Bill could fail to improve the lives of families that have disabled children.
It will not address the shortage of local services, which leave many families "at breaking point as they battle to get crucial services and support for their disabled child”.
Scope, The
National Autistic Society, Sense, 4Children and The Family and Parenting Institute said in a joint statement:
"Just days after the Prime Minister evoked the memory of his disabled son and father and stated that "family comes first", charities, parenting groups and disability campaigners will warn that families with disabled children are at breaking point due to a chronic shortage of support and services in their local area.”
A
new reportfrom
Scopeon the experiences of 600 parents of disabled children found 62% are not getting critical support such as childcare or nursery places, appropriate schools, essential therapies or even healthcare in their local area.
60% of families said 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. Over 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 of disability charity
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 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 Lever, Chief Executive of the
National Autistic Society, said:
"The Government has a real 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.
"48% 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."
Nicola Clark, disability campaigner and mum of two disabled girls, said:
"Just recently we had to take the heartbreakingly difficult decision of sending our youngest daughter to a residential school because she has spent the last 18 months refusing to leave the house and losing out on vital experiences reducing her life chances.
"Appropriate local services would make an inconceivable difference to the lives of thousands of families like mine but only if politicians grab this opportunity and make it happen.
"Anything less would effectively send a message that they are turning their backs on families that desperately need their help, precisely at the time when we need their help most.
"We were lucky we found the strength to fight this is not true of everyone. It's frankly obscene that in a civilised society, disabled people and their families, being forced to battle for the most basic aspects of life is just another fact of life.”
The draft Children and Families Bill published in September proposes to replace statements with a new joint education, health and care plans and to force councils to list what services are available for disabled children in the local area.
But the charities and family and parenting groups argue that this doesn't go far enough.