Families of disabled children wait months for respite care due to council cuts

Parents have told i they are worried the lack of adequate support for their disabled children is further isolating them from society and undoing the progress they have made in living life more independently.

It comes as social care leaders have warned more care homes could be forced to close or reduce the services they provide as councils that are on the brink of bankruptcy cut back on funding.

Local authority spending is set to fall to 4.7 per cent of GDP in 2028-29, down from 5.1 per cent in 2022-23 and from 7.4 per cent in 2010-11, the year when austerity began, according to analysis by the Office for Budget Responsibility.

Jen is mum to Betty, seven, who has complex needs after brain tumour surgery when she was a baby.

Betty is diagnosed multi-sensory impaired, profoundly deaf and has cerebral vision impairment. She is also non-verbal, a wheelchair user and has gastric issues and involuntary movements.

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The family receive direct payments instead of a care package from Bournemouth, Christchurch and Poole Council (BCP), which enables them to fund a limited number of hours of support within the home.

Direct payments are paid to disabled people over 16, the carers of disabled adults, or the parents or carers of disabled children. They allow people to arrange care and services themselves instead of receiving them directly from the local authority.

But Jen, an arts coordinator, from Poole, said she is unable to access any overnight or daytime respite care for Betty, except for one two-hour session, available only weekly in school holidays.

Betty is also on the council’s waiting list for a deaf-blind assessment, which once completed will determine what additional support she is entitled to.

During school breaks, the family find it difficult to get out of the house with their two young daughters, as Betty requires a minimum of two carers and they have to spread the limited direct payment funded care throughout the week alongside juggling their work.

“In the holidays, we have to use our direct payments hours, and we have to spread them out as much as we can to get through the week and to be able to juggle our work, which means that we will often spend most of the time in the house,” Jen told i.

“I think as a result, what it means for Betty is that she’s already very isolated because of her multi-sensory impairment. She’s profoundly deaf and she’s visually impaired. And because of the lack of provision for us – with respite – she’s getting less opportunities to socialise with other children.”

BCP Council is among local authorities facing particular funding challenges around its special educational needs and disabilities (SEND) services. In January, it emerged the council could effectively go bust this year because of a £60m blackhole in SEND funding.

In a statement at the time, the council said: “The Dedicated Schools Grant (DSG) deficit has grown rapidly from £3.6m in April 2019 to £35.8m by March 2023, with £63m estimated for March 2024.

“We estimate that it would take 15 years to balance the budget without a detriment to the support needed for our children and young people.”

The DSG is a ring-fenced grant from the Government that provides each local authority with an allocation of funding for schools and services for pupils.

Betty, seven, pictured here with her parents, Jen and Joe, and younger sister has complex needs after brain tumour surgery when she was a baby

The current social care support from the council that Jen and her husband Joe receive for Betty does not afford them the opportunity to take time out to exercise, which they find particularly vital for their mental health.

Jen said: “We’re just very tired all and we have to juggle that with our work commitments, which generally means taking, like lots of parents have to do, time off in the school holidays. But with Betty, it’s very different because she can’t go to any old holiday club. She can only go to places where they have trained specialists.

“It does take a toll on both of us, myself and my husband, and it limits what we can do as a family.”

When they first moved to the area they were told by a local authority panel they can only have either respite care or direct payments, Jen said. She believes Betty is entitled to further support she is not currently receiving but is only one month into a six-month wait for a care needs assessment.

The family expects that once a decision is made there will be a further wait for the care package to be implemented.

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It has already taken two years for adjustments to be made to the family’s bathroom that will see it fitted with a hoist so Jen and Joe no longer have to lift Betty in and out of the shower.

Jen said the lack of a appropriate facilities had an effect on her and her husband Joe’s physical health. “Me and my husband both have back problems. My husband’s got a hip problem as a result of all the lifting, which affects our wellbeing, because it affects his ability to exercise.”

Another mother based in Tyne and Wear, who wanted to remain anonymous, told i her adult daughter who has learning difficulties had been without a support worker for eight weeks. She said despite money being allocated for the assistance, she had not be able to secure a support worker because of the low wages being offered.

The mother, blamed the low value placed on carers by local authorities and uncompetitive wages for the challenge in recruiting social care workers.

She said: “The national living wage is so low, and people can actually go and work in Aldi or somewhere and get more money with no responsibility.

“The value of the support worker is so low that they’re not prepared to pay for them.”

Without a support worker, the mother is caring for her daughter full-time and worries it will undo the progress she has made to live more independently.

She said: “The repercussions of this is when we do get someone, she’s then going to have to get used to being out without me again because she’s attached.”

The Disabled Children’s Partnership, an umbrella group of 120 children’s and disability charities including Mencap, Sense, Scope, Ambitious About Autism, Family Fund and WellChild, has warned there is an immediate need for increased funding for support for these families and have called for more sustained investment, alongside stronger accountability so that parents do not have to fight for the support their children need.

Anna Bird, chair of the Disabled Children’s Partnership, said: “We hear time and again from families with disabled children who cannot access the help they need from education, health and social care or with the cost of living, leaving them isolated and unable to enjoy the family life others take for granted, and preventing their children from thriving.”

Helen Wildbore, director of Care Rights UK, said older and disabled people and their families continue to be let down.

She said: “Their dignity and safety is put at risk with care providers and local authorities so stretched – struggling to get access to care services, facing care packages which don’t meet their basic needs, battling to get serious concerns about care resolved. How much worse does it have to get before the Government make social care a priority?”

BCP Council has been contacted for comment.