Government "failing a generation of disabled children"
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.”
Notes to the Editor:
For more information, spokespeople or case studies, please contact the Scope press office on 020 7619 7200.
There are more than half a million families in the UK with a disabled child (Buckner L and Yeandle S (2006) Managing more than most: A statistical analysis of families with sick or disabled children, Leeds: University of Leeds, based on analysis of the 2001 census, updated and combined with Office of National Statistics 2010 estimates of families with dependent children in the UK estimates there are 540,000 families with disabled children).
Survey methodology
Scope surveyed more than 600 parents and carers of disabled children during August 2012.
The findings include:
- Of the families who couldn’t get the support they needed locally (62%)
- 60% of families described the process of trying to access local services as feeling like a battle
- 80% said not being able to get services and support locally caused them stress and anxiety
- over half (51%) said it had a negative impact on their ability to work
- over half (51%) said it meant they missed out on everyday family activities together
Children and Families Bill
The Government published the draft Children and Families Bill in September 2012. Amongst the changes proposed were: Plans to introduce joint Education, Health and Care (EHC); plans to better co-ordinate the support that children and young people with Special Educational Needs require; plans to introduce a ‘Local Offer’, a requirement on local authorities to publish a directory of services it expects to be available to families with disabled children in the local area.
However, Scope is concerned that whilst a step in the right direction, the changes will make little difference to 87% of families whose children are not eligible for an EHC Plan and will be reliant on the ‘Local Offer’. Scope believes that the local offer will be meaningless for thousands of families if the services aren’t available in the first place and if there is no compulsion placed on councils to change or commission new services that will ensure families with disabled children receive the help they need.
Scope is calling on the Government to include a 'Provide Local Principle' in the Children and Families Bill, to compel local authorities and agencies to genuinely consider how they can change existing services or plan and commission new services that better support disabled children in their local communities. It hopes the introduction of the principle in the Bill will:
- Ensure services in a local area are inclusive and accessible.
- Put a duty on local agencies to introduce new inclusive and accessible services if they don't exist in a local area.
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