Charities warn Government that families with disabled children are at breaking point
15 October 2012
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.
Leading charities including Scope, The National Autistic Society, Sense, 4Children and The Family and Parenting Institute have come together as the Government prepares for the biggest shake up of support for disabled children or those with Special Educational Needs (SEN) for 30 years.
Children and Families Bill
The organisations claim 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 frustrating shortage of local services, which leave many families at breaking point as they battle to get crucial services and support for their disabled child.
Keep Us Close campaign
The Education Select Committee has begun to scrutinise the draft bill, and Scope has published a new report, Keep Us Close that brings together the experiences of 600 parents of disabled children. It reveals 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 families 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. 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.
The draft Children and Families Bill published in September 2012 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.
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 Goldring, chief executive of Mencap, said:
“We welcome Scope’s report. 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.”
Katherine Rake, Chief Executive of the Family and Parenting Institute, said:
“Families continue to act as the shock absorbers to rises in prices, frozen wages, and cuts in spending and on children’s services. There is only so much families can take and future cuts will make it even tougher to ensure fair access to services.
“The Children and Families Bill presents a huge opportunity for the Government to realise its ambition of a family friendly UK but the Government needs to be bolder in its commitment to families if the Bill is to make a difference to struggling families.”
Gillian Morbey OBE, Chief Executive of Sense and Sense International, said:
"Parents of deafblind children tell us every day that they have to fight to get the right support for their child. Deafblind children are unique and their support needs have to be met to enable them live as fulfilling lives as possible.
“The draft Children and Families Bill must take the fight out of the system by ensuring equal and clear legal obligations on education, health and social care providers ensuring children get support, whether that be close to home or at a regional level.
“If this is not in the Bill, then there is no guarantee deafblind children and their families will be able to get the vital support they need."
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. Forty-eight percent 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."
A spokesperson for children’s charity 4Children, added:
“4Children welcomed much in the Children and Families Bill including its positive approach to adoption. However, we are concerned by the limited scope of this Bill – at a time when families are facing dwindling incomes against rising prices, growing unemployment and cuts to vital services, this Bill does little to address the real problems families are facing.”
Nicola Clark, disability campaigner and mum of two disabled girls, said:
“The challenges of raising disabled children cannot be underestimated. Every step of every day can be fraught with the harsh reality of not living in an accessible, inclusive or accepting society and not being able to get the support that you desperately need.
“Often this can be for the staple of life that non-disabled children access routinely like education but which often proves much more problematic when you happen to have been born with a disability.
“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.”
Notes to the Editor:
For more information, spokespeople or case studies, please contact the Scope press office on 020 7619 7200.
Scope surveyed more than 600 parents and carers of disabled children during August 2012. The findings include:
- Almost two thirds of families (62%) with disabled children do not get the support they need.
- 60% of families describe the process of getting support and services as a ‘battle'.
- Almost half (49%) said they had to wait a long time for any support.
- 42% said the people in the authorities they were dealing with didn’t understand their child’s needs.
Of the families who couldn’t get the support they needed locally (62%):
- 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.
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.
The Government’s pledge to support a family friendly society can be found in The Coalition: Our Programme for Government. Page 19, Section 14
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 thousands 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 which goes before parliament early next year 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.
- At the same time Scope is urging councils to work more closely with charities and disabled people when it comes to designing local services. The charity will be launching a report called Doing Services Differently at a summit for local authority Chief Executives on 16 October that argues that one way to generate greater innovation in services for families with disabled children and disabled adults is by charities, councils and disabled people’s organisations forging stronger partnerships.