PARENTS of children with disabilities are spending tens of thousands of pounds and/or going into debt fighting for, and funding, services that should be provided by government and local authorities.
A new survey commissioned by campaign group Let Us Learn Too and the Disabled Children’s Partnership reveals families are spending £14.6 million nationally on missing statutory support for their children.
Every child in England has a right to education. In reality, flaws in the special educational needs and disabilities (SEND) system result in parents having to fight for their child’s right to learn, and spending their own money plugging gaps in provision.
The survey reveals families are sacrificing savings and pensions, paying for essential therapies like speech and language, occupational therapy and physiotherapy – services children with disabilities should be able to access for free. Some are paying for education and therapy reports, to prove their child’s educational needs. Many parents are leaving jobs or reducing working hours to navigate the complex system and fight local authorities. Legal fees and lost work hours mean families are losing thousands of pounds challenging council decisions at tribunal court cases, 97 per cent of which are found in favour of the child.
The survey found:
Four in ten families with disabled children have seen their savings wiped out by the cost of fighting and paying for support services, which are a basic right.
One third of families (30.9%) have gone into debt paying for their child’s support
36% of parents had borrowed money from family or friends to bolster their child’s support
Six in ten families with disabled children sought mental health support for a family member due to the stress of fighting for basic services.
One third of families with disabled children said they needed essential therapies for their disabled child but could not afford to pay.
Parents Alan and Gillian Courtney, both 44, from North Cheam, London, have two disabled children. Nathaneal, eight, is autistic and Amelia, five, has a life-limiting neuro-muscular condition. The couple had to take Sutton Council to tribunal to receive a special needs assessment for their son. They also had to challenge the Department of Work and Pension, so that Amelia, a wheelchair user, received the full mobility allowance to which she was entitled. Alan an NHS scientist, said: “Everything is a battle for money with needless tribunals and court cases that just waste money and time. For Amelia, time is not on her side.
“Many nights I have gone to sleep thinking it would be better if I never woke up. My wife has also struggled mentally because she had to give up her job and be forced into the role of carer because we can’t have the help we need.
“We had to make a choice between an adapted car that would Amelia’s wheelchair and hydrotherapy for her.
“All we can do is try to save what little we can so that when Amelia’s needs increase we can pay for adaptation for the home.”
Hayley Harding, co-founder of Let Us Learn Too, said: “You shouldn’t have to sacrifice your entire savings or financial security because you have a disabled child and you want them to be educated. This amounts to a disability education tax. We’ve heard from families who have had to cash in their pensions early, take out personal loans they are struggling to repay and in some cases, sell their home. Often this is to pay for legal advice to force councils to provide the support their children were always entitled to at school.”
Stephen Kingdom, spokesperson for the Disabled Children’s Partnership, said: “These figures starkly show the cost to families of having to fight a system that should be there to help their children. Parents shouldn’t have to use their savings to fund gaps in services that they have a right to expect.”
The survey of 1,084 parents and carers was carried out between November 2021 and January in England.