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The chaos for families caught in care cuts

Over the next few weeks, False Economy will interview families who are dealing first-hand with council cuts and welfare reform changes.

This first story is from Lancashire. There is a list of cuts and changes affecting this family at the end of the post.

Image by @skinnyvoice

Jen and Colin

The first thing Jen Dalley does when I arrive at her home in Chorley is to hand me a copy of her most recent communication from Lancashire county council. I can have it, she says. She's had enough.

She gives me a pamphlet about the council's latest idea for raising cash – it's a proposal to start charging for school transport for children and young people over the age of 16 with special educational needs (SEN).

Jen and her husband Colin have three young daughters – E, 18, L, 16, and K, 12.* All three have learning disabilities. K often needs two-to-one care – she is confined to a wheelchair and is unable to talk, walk, or feed herself. She also suffers from severe epilepsy. She's not 16, so her transport to school won't cost for now, but the older two girls will be affected if the council makes the change. The council puts its transport bill for students with SEN and disabilities at more than £15m and plans to cut this by a fifth over three years. It states that it “faces enormous financial challenges and must look to make savings across the board”.

Which is all very well, say Colin and Jen, except that they won't be able to afford a charged-for service. As a family on benefits, they'll be charged £600 for each child for transport, even though they have nothing. The family rarely has money to spare. “Our account gets overdrawn all the time now, because of the tax and bank charges!” Jen says.

They doubt that they'll be able to replicate the transport service themselves.

Each weekday morning, the three girls are picked up from their home and driven to their schools in different parts of Lancashire. E and L go to a school that is a half-hour drive away in rush-hour Preston. K attends a school for younger children that is about ten minutes' drive from her home. On the nights she stays in the Maplewood short-break unit for children with disabilities, she's picked up for school straight from there.

Getting everybody to school on time is a strategic challenge for most parents. At the Dalley house, the exercise is strained. A carer comes in each morning to dress and feed K and to stay with her (K can't be left alone, because she has regular seizures and can injure herself, or choke) while Colin and Jen help their two older girls wash and dress. The couple also has an eight-year-old son to organise. Even at their best, things are tense.

Things will not be at their best if the Dalleys must also drive their children to schools in different parts of the county.

“We haven't got a cats' chance in hell of getting everybody to school on time if it ends up we have to take them,” Jen says, fuming. “If we don't get them all to the right places for the right time, then Education [services] will get onto us.”

That's the problem for families like the Dalleys. They feel that everyone is onto them while also abandoning them. That's the reality of austerity for people who must live it.

“It's all right for people in power,” Colin says. “They don't know what it's like living with this for 24/7.”

Both Colin and Jen have been called scroungers by strangers and even family.

“Yeah, you do worry when you go out,” Jen says, “because you know what people think and you have got disabled children.”

All three of the Dalley girls are on disability living allowance and the family receives housing benefit and income support. About a year ago, when I first met them, Colin and Jen were struggling with E (she has violent, angry outbursts). They were also trying to fight council plans to close Maplewood, where K stays several nights a week, or another short-break unit. A year on, the council still hasn't made a decision about unit closures.

K's nights in Maplewood give Colin and Jen a chance to sleep through the night without worrying about her seizures and breathing. Yesterday, for example, K had a bad seizure at school. Colin and Jen were in Preston with E and L when the school rang Colin and asked him to come in and collect K. (That's one of the reasons Colin finds landing employment difficult. He needs to be on call for K. He says often that he'd like a job outside the house.)

“K was knocked out after the seizure, she was,” says Colin. “She slept for six hours straight.” When she woke up, he had to sit with her until 2.30am. She was unwell and unable to settle.

It's the relentlessness of it, says Jen. She and Colin must always drop everything to deal with the curveballs. There's no way to prepare, or plan. Every day, someone lobs in another grenade. “I always say to them – you come and live in my house for a full week and then we'll see,“ Jen says. “It's when we were having all that problem with her (she points to E). I'd say – come to my house and then tell me we don't need some help.” Jen has been treated for severe depression and talks about suicide.

A month ago, Jen noticed that K's DLA money hadn't been paid into her account. That led to another week of fuss and fear: “They just stopped it just like that.” It turned out that K's DLA renewal form had been misread: “I put on the form that she went to respite care several nights a week. Somebody thought that meant she lived in a carehome and the next minute, there is no DLA money in the account... I said “why didn't you tell me [you were going to suspend it]? He said “if we had to ring everybody up and write to everyone [when we're going to suspend their payments] then we'd be here forever.”

There's a challenge, too, with 18-year-old E still living in the house – she's old enough to want to leave home and move into supported living, but must wait while she is assessed. Up until recently, Colin and Jen struggled to deal with E's mental health difficulties and rage.

“We ended up getting in contact with adult mental health services. They were like – Right. Now, she's waiting to see the learning disabilities psychiatrist. Disability and the social worker are really good at this level... they have picked up that she can't manage things like filling in forms and checking on DLA and money.”

They say they've been told it may be a year before E can move to supported living, but the family is hopeful. The problem is that a year is a long time in social care. In a year, everything might have changed.

*Names withheld.

Key Lancashire county council cuts, new service charges and welfare reform changes affecting this family:

  1. Proposed introduction of means-testing (charging) for school transport for children and young people with special educational needs (£1000 or £1200 per child, depending on distance from school. A charge of £500 or £600 per child is proposed for children from families on benefits. The council says it is aware that concern about affordability “is an emerging issue from early responses to the consultation”). The council expects to raise between £300,000 and £475,300 from charging. About 3000 children and young people use the service. The council insists that no decisions have been made.
  2. Proposed closure of a short-break unit for children with disabilities. No decision has been made. The council says that it is "modernising" provision.
  3. Tightened eligibility criteria under fair access to care bands. Adults are eligible for paid-for care services in Lancashire if they are assessed as having substantial or critical needs. Before 2011, adults with moderate needs were also eligible.
  4. Disability living allowance reassessment.

Kate Belgrave blogs on the experience of public service users facing cuts.

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