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25 February 2013
New analysis by Scope shows parents increasingly having to fight tooth and nail for basic support including school placements, therapies and critical equipment.
Parents increasingly left at wits' end, struggling to hold onto jobs and pay bills as a result.
Scope believes Government's once in a generation opportunity could fail disabled children rather than improve their lives.
Disabled children are increasingly being denied places at school, vital therapy and crucial equipment, while their parents are left at their wits' end because of never-ending battles with local bodies, according to new analysis from the disability charity Scope.
The charity has written to the Secretary of State for Education, Michael Gove MP, warning him that Government's reforms risk squandering a once in a generation opportunity to improve the lives of disabled children.
Children and Families Bill
The warning comes as MPs meet to debate the Children and Families Bill for the first time, a new piece of legislation which outlines the biggest shake-up of support for disabled children and those with Special Education Needs in over 30 years.
The Government introduced the Bill promising that it would “prevent parents being forced to go from 'pillar to post' in a battle between different authorities and agencies”.
Scope, which supports thousands of disabled children and their families across the country, has brought together new insight from its staff on the ground, experiences of parents and polling that paints a bleak picture of what it's like to be a family with a disabled child in 2013.
Professionals across the charity cite hundreds of examples of disabled children having to wait months for time-sensitive therapy including speech and language, occupational therapy or having to fight for critical pieces of equipment such as wheelchairs and orthopaedic boots or for appropriate placements in schools.
Penny Dickinson, one of Scope's regional support workers for families with disabled children, said:“One family I met recently have a disabled baby who is currently being tube fed. They have been waiting nine months for a speech and language therapist. Another family have a child who cannot sit up properly. They are still waiting for an occupational therapist assessment.”
The charity is also increasingly hearing desperate stories from parents who see no end to the battle they are forced to fight with local councils, schools and health services in order to get basic support for their child.
The charity believes that the combination of 28% cuts to local authority budgets, NHS efficiency savings and the biggest reform to welfare support is creating the most challenging environment for families with disabled children in generations.
One mother from Hartlepool, who has four children including two who are disabled, said:“We spend a lot of time chasing up appointments as some people just don't get back to you even when things have been promised. My husband had to give up work as it was too much for myself alone to spit myself in a million pieces to be at hospitals, schools nurseries. We are both carers for the two children with the difficulties which gets frowned upon by others thinking we get an easy ride not having to work. It's not the case.”
Survey of parents of disabled children
The charity spoke to 600 parents last year. Findings revealed 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.
- 60% of the families describe the process of getting their child the right services they need as a “battle”.
- 80% said not getting the support they needed caused them stress and anxiety.
- 51% said it had a negative impact on their ability to work and 36% said it placed financial pressures on their families.
Support for disabled children
Richard Hawkes, Chief Executive of disability charity Scope, said:“The Government has a once in a generation opportunity to end the battle families are forced to fight in order to get basic support for their disabled children. Yet it is at a very real risk of squandering this opportunity. We need a bold decision by the Government to invest in better support for disabled children. Anything less will effectively fail a generation of disabled children, condemning to a future of unfulfilled potential.”
Carol Tozer, Executive Director of Services at Scope, added:“Our staff and volunteers hear desperate stories every day of families literally at breaking point because they are having to fight tooth and nail for basic support. Often the therapy they are fighting for is crucial to a child's development and there can be severe implications later in life if these children don't get the support they need in time. We know schools, councils and health agencies are under immense pressure and that professionals on the ground have their hands tied and are just as frustrated as the parents.”