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Jan Ansell has three disabled daughters whom she adopted with her husband Kevin because, as foster carers, they could not bear the pain of handing back children they had loved and cared for.
They cherish their daughters, but are struggling to cope. As well as dealing with the challenges of adoption, they are at the sharp end of a funding and provision crisis affecting thousands of families with children who have special educational needs and disabilities (Send).
In May the family moved from rural Pembrokeshire to Buckinghamshire to be closer to relatives who could offer support – they have two older children and five grandchildren – and to be in an area more accessible for wheelchair users.
Since moving, however, the girls have been unable to go to school because no places have been available; they have been unable to register for summer holiday activities, having missed the deadline; and they are even struggling to get around their rented bungalow while waiting for ramps to be fitted.
“This is anything but an inclusive society,” said Jan.
Sasha, 15, Kelly, 12, and nine-year-old Anna spent time in care before being adopted. Jan thought that, given their severe Send status, her daughters’ educational and other needs would be prioritised, and that she and Kevin would be properly supported.
The reality has been quite different. “Yes, we knew our girls had special needs – we didn’t know we would have to fight for everything they were deemed to be entitled to.”
Whereas they had felt well supported as foster carers, Jan discovered that – as adopters – they had all the parental responsibility and far less help.
She quoted a recent adoption survey which revealed that 70% of adoptive parents found it a “continual struggle” to get the help and support their child needed.
Sasha, who was three when she was adopted, has a rare birth defect that affects her brain, uses a wheelchair and is non-verbal. As she has grown older, she has increasingly suffered from temper tantrums – up to four or five a day – during which she screams and throws herself out of her chair.
The Ansells adopted Kelly when she was two. She has cerebral palsy, severe learning difficulties and also uses a wheelchair. Anna was 18 months when she joined the family. She also has cerebral palsy, but is mobile and has severe ADHD. “We have to factor in all three sets of needs, and they are very different,” said Jan.
Finding appropriate school places is the biggest problem, and it is one that is shared by thousands of parents of children with Send across the country, many of whom have been out of education for months or even years. The Local Government Association estimates that councils in England face a Send funding gap of more than £500m this year.
Parents denied appropriate support for their children are resorting to legal battles to secure their children’s entitlement. The government, which has been taken to court over its Send funding policies, recently announced a call for evidence on the issue after months of high-profile campaigning by parents and cash-strapped councils.
Jan said she had received excellent support from her contact at Buckinghamshire county council, but there just is not enough provision.
“Everyone keeps saying there are no school places. We have a special school just down our road but they’ve said we can’t come until at least 2020. We found a wonderful school in Milton Keynes – it would suit Anna down to the ground – but for every place there’s four waiting to get in. Three schools in Milton Keynes have turned us down at panel.
“[The girls] all have education health care plans [EHCPs – legal documents that entitle them to appropriate support]. They are ‘previously looked after’ children. All of these things are supposed to give them priority.”
Both Jan and Kevin are in their late 50s and are full-time carers. Kevin left his job with the AA six years ago because of the demands of home. Their day is an endless round of lifting, bathing, feeding and changing their daughters. “It’s wearing. Our eldest does not get to bed till 9.30pm. You just feel you are on the go 24/7.”
They have worked hard to ensure the girls have as normal an upbringing as possible, taking them them to Spain and Disneyland. But without a school place, they do not know how long they can continue. “There’s a limit,” said Jan.
Without the stimulation and separation that school provides, the girls are becoming irritable with each other. Buckinghamshire county council has said it will provide school places for all three girls in September, but where is yet to be confirmed. Any longer and Jan doubts she will be able to cope.
“We cannot give up on our children … and giving them over to people who do not feel this immense, special love is unthinkable.
“We just want ‘society’ to stop pretending they are inclusive, when we are fighting for school places and are excluded from activities.
“More schools for our children are needed but I can’t see a government giving priority to those who will never be taxpayers.”
Buckinghamshire county council said it had recorded a significant rise in the number of children and young people with EHCPs.
“Currently there is no [provision] within the funding stream to support placements for children with Send in Buckinghamshire. However, the growing demand is creating a challenge.
“We are also working with the specialist sector to meet the growing demand and investing in additional capacity for those groups where we are seeing high levels of increased need.”
The girls’ names have been changed to protect their identities.
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