This article titled “Disability cuts: A mother’s cry for help, Mumsnet, and a media storm” was written by Amelia Gentleman, for The Guardian on Thursday 9th June 2011 19.22 Europe/London

A few months ago Riven Vincent was on the brink of collapse, so exhausted by the daily grind of looking after a profoundly disabled daughter with inadequate support from the state that she felt the only solution was to put her into care.

The trigger was a decision from the local council (which is under pressure to make cuts) to refuse her request for extra hours of professional assistance. She called her social worker to tell her she could no longer cope with the relentless burden of caring, and to ask her to start searching for a residential home for seven-year-old Celyn, who has severe quadriplegic cerebral palsy and epilepsy. This would not have attracted much attention had Riven not already been the subject of some mild press interest, when she had a private hour-long visit from David Cameron during the last weeks of the election campaign last year to talk about the experience of parenting a very disabled child.

During the visit, he gave her his personal assurance that if he became prime minister, he would not do anything that would detrimentally affect disabled children, financially or otherwise.

She posted her decision to hand over care of her child on the parenting website Mumsnet, and the episode prompted an instant explosion of anger and compassion from fellow parents, attracting more than a thousand messages of sympathy within a few hours.

That night on the news, the prime minister was forced to break off from talking about the Nordic Baltic summit he was hosting in London to answer questions about Riven. The following morning several newspapers had photographs of Celyn on their front pages and within hours the family had a visit from council officials promising them extra hours of respite care.

Four months later, Celyn is still at home with her parents and siblings, in their book-lined Bristol home, smiling as her brother breaks off from his A-level revision to play the piano for her. Riven says the family is surviving for the moment, the pressure somewhat eased by the council offering a little more help. She feels strongly that Celyn needs to remain at home, surrounded by family, but she remains dangerously close to the point of not coping. She is angry that it took a media storm to win them more support, and is anxious to make the point that her family’s difficulties are shared by thousands of families with disabled children around the country.

“Other people have it worse than we do and are right at the edge of not being able to cope any more. We just ended up in the media, but it could have been anyone. Carers of disabled people are in deep crap across the country,” she says.

“All families with disabled children are going through this and not getting enough help and support. Without support, these children end up in residential care that costs more. They should be with their families but it is unbelievably hard to care for a disabled child. Unless you are superhuman.”

Riven is not comfortable in the media spotlight, but is sufficiently concerned about the rising pressures on disabled people and their carers that she wants to vent her anger.

Partly this is directed against the prime minister. While Riven has a residual sense of solidarity with Cameron as someone who has experienced the difficulties involved with bringing up a disabled child, and is sensitive to his feelings as a father, she feels he opened himself up to criticism in this area – which might otherwise have been off-limits – by campaigning on the issue.

“I feel he has let down families with disabled children. He knows what we go through, and he was in a position to do something good. And not just for me. He shouldn’t be stepping in for an individual family. He could be making changes for families across the country. He could be making a massive difference. He hasn’t. I know if I became prime minister, things would be different,” she says.

When her predicament emerged, Downing Street officials stressed this was a “local council issue”, an argument Riven does not accept, instead tracing a direct link between budget cuts imposed by central government on local authorities and the squeezed resources available to families with disabled children. Across the country, councils have been reassessing individuals, with officials under unspoken pressure to revise downwards the eligibility for respite care (the number of allocated hours of professional, paid-for care).

“There is so much monetary pressure on councils with the cuts they have received from central government, that it’s tough for them to allocate money. It is easy to cut from disabled people because generally they are not as shouty as me,” she says.

“All the departments – both the adults and children’s services – have had to slash budgets and that means cutting respite care, because respite is expensive. The social workers aren’t bad people. They are stuck between a budget and a family, and not always able to carry out what should be their job because they’ve the higher-ups telling them to cut and they’ve got the families telling them they are in desperate need. This is happening countrywide.”

An afternoon with Celyn and her family reveals why, despite the unfaltering dedication of her parents, more support is vital, highlighting the pressures that can push parents to the edge of coping. Even a brief summary of the battles she has had with the council to get help shows how hard families need to work to ensure they get the support they are entitled to, and how fighting is easier if you are well-educated, understand how the system works and know how to get your voice heard.

Celyn’s father, Mark Williams, makes sure he is home from work every day at the same time she returns from school. Riven has had multiple sclerosis for 13 years, and three years ago began using a wheelchair outside the house, and a stick to get around inside, making her doubly sensitive to changes in government policy that affect disabled people. As a result her husband does more than 50% of the caring for Celyn. A research scientist, he works part-time, fitting his hours around Celyn’s school timetable. “He worked full time until she was two or three, and then it just became too hard,” Riven says. Riven, a psychologist, has not worked since she had children.

Most of the afternoon Mark sits with Celyn on his knee, feeding her and reading to her. They have recently finished Enid Blyton’s Magic Faraway Tree and Roald Dahl’s The Twits. Although Celyn is unable to speak and has very limited vision, staff at her school say she is bright. She is learning to communicate using a machine operated by a head switch, similar to the one used by the physicist Stephen Hawking. Conversation is still slow and basic, but when he reads to her, Mark knows she is enjoying and understanding it. “She laughs and gets excited at the right places,” he says.

Being clever makes Celyn harder to care for, her mother says, because she needs constant stimulation. She can’t be left while her parents do other things because she will scream, and screaming can bring on seizures that can cause permanent brain damage. “You can’t leave her to make a cup of tea. She’s not able to entertain herself – she’ll be miserable and she’ll scream her head off. She sounds like a nuclear siren,” Mark says. “You can never go off and let her play alone because she can’t move.”

They have a few toys that can be used with a head switch that Celyn is able to operate, but these are expensive, and she is fast growing out of them. Riven would like to buy her daughter a CD player. “Anyone else would go to Tesco’s and buy a CD player for a tenner. But the switch-adapted ones cost £400, so we have to save up because that’s quite a lot of money. She’d use the switch to turn it on and off – it’s important to be able to do that when you’re seven,” she says.

Mark prepares his daughter a special ketogenic snack (a diet designed to help manage epilepsy) made of ground almonds, cream and bananas, and spoons the food into her mouth. It’s a time-consuming process. “She sneezes as she eats; I call it pebble-dashing. It goes in your hair,” he says, gesturing towards the flecks of food around his face, as he continues to feed her. “If she coughs a little bit she has a very light vomit trigger. The big meal can take a while, depending on how co-operative she is.” He pours a cup of water into a plastic container attached to a tube that is screwed into her tummy button, unflicks a clip, and watches the liquid slip slowly into her stomach.

At bedtime, Riven sleeps in a ground-floor room, sharing a double bed with her daughter, listening to her breathing, watching her oxygen monitor. Celyn suffers from sleep apnoea and stops breathing in the night. “A lot of children with cerebral palsy are found dead in the morning – I think that’s why,” she says. “She can’t move in her sleep so she needs turning about five times a night. I tend to have a bit of insomnia if I’m woken. She likes to listen to football, that calms her, she feels that other people are with her. But I have very broken sleep … for seven years. When you think about how people complain because they have a newborn and the lack of sleep – I’ve had seven years of that.”

Last November, during a routine review of the services the family receives, Riven asked social services if the family could get occasional overnight care, to allow her to have uninterrupted sleep from time to time.

“We have a review of our support package every three months. Each time they go over everything just to make sure she hasn’t been magically cured. It’s very wearing on everyone having to redo this constantly when her disability is permanent, and severe. We asked for more help, because she is getting bigger, life is getting harder and we are getting older,” she says.

They also asked for an extra six hours of respite care (which comes in the form of a regular lump sum so the family can pay carers to come in and help out) and requested that they be allocated a link family, similar to a foster family, who would gradually get to know Celyn, and be able to help out from time to time. When all of these requests were rejected in January, Riven decided her daughter would be better cared for in a residential home.

Sleep deprived, and at the end of her tether, she logged on to the internet under her online alias Riven, and typed: “Have asked social services to take dear daughter into care … They have refused extra respite. I can’t cope.” (She has asked that her real name should not be used, and preferred not to be photographed, to protect Celyn’s siblings from attention.)

In the wake of the media storm, South Gloucestershire council gave her an extra three hours of respite care a week, promised two nights a month of overnight care, and said it would find a link family. It is still searching, but since this is not a paid role, it is not easy to find people who will volunteer to care for a disabled child on a regular basis.

“Finding a family who will look after a quadriplegic child is extremely hard. They’re still looking,” she says. “Can I have a rant about the ‘big society’ now? Does David Cameron think volunteers are going to be able to look after children like this? Are they going to be queuing up at my door? They’re not.

“And even if they were, would you trust them? Untrained volunteers with children with profound disabilities? This is why we need the support from the council and why we need the money.”

The extra costs of caring for a disabled child are considerable, and stretch far beyond the price of specialist toys. There’s extra heating costs in the winter, because Celyn (since she can’t move) gets cold very easily, the cost of specialist clothes, the cost of transport, the cost of paying for care (with the actual cost of paying carers currently exceeding the amount allocated by the council to families, so that families have subsidise the payments, or settle for fewer hours) and the extra cost of holidays. They have not been on one since Celyn was born, because the cost of travelling with her would be prohibitive, and the risks involved too great.

“We could probably afford to go camping, but we’d need a ceiling hoist in the tent, and that would be a problem because they don’t make tents with ceiling hoists in them. And a wheelchair in a field would be quite tricky; muddy. Plus we need electricity for the oxygen monitor. So no … Camping we could afford, but we couldn’t actually do it,” Riven says.

She worries the three older children have been deprived of attention and experiences because of the overwhelming demands of caring for Celyn.

Finally, there is the cost of nappies, the issue that sparked her dialogue with Cameron. During a pre-election question and answer session on Mumsnet, Riven asked Cameron why nappies for disabled children were rationed to four a day. Cameron admitted he did not know there was a daily limit or how many his son Ivan (who also had cerebral palsy and epilepsy) received or used.

“So I said, ‘Well, that’s because you’ve got lots of money.’ I said: ‘Why don’t you come to my house and see what it’s like?’ I didn’t think he would,” she says. A few months later he stopped by for an hour-long visit.

“He gave the impression of being sincere and caring … He said that his government wouldn’t do anything that would detrimentally affect families with disabled children, financially or otherwise. He accepted he didn’t really understand what it was like for families without money.

“I actually said to him: ‘David, you had two nannies, you don’t know what it’s like to be fighting social services to get support.’ He said: ‘No I don’t.’ Some things he understood. Others he admitted he didn’t because he wasn’t in that situation. But on the other hand, he’s the parent of a disabled child, he understood the worry, the seizures, all that sort of stuff.” It might seem a minor point, but since the nappies cost £1 each, and children like Celyn use up to eight a day, it is a substantial extra cost for the family to bear. “It’s a medical need. It’s not so they don’t smell of wee. You’re looking at skin breakdown, infections, which cost a lot more, than just making sure people have the continence products that they need. It’s a dignity thing too; you don’t want to be sat in your own wee just because there aren’t enough nappies. It’s such a simple, single issue, which they could change tomorrow if they wanted to, because no disabled person, or their family, are going to ask for more than they need. It’s not like we flog them on the black market. They take up lots of room.”

After the coalition government came to power, she continued to lobby Cameron about nappies, and last August, she says, “he wrote to [primary care trusts], saying don’t put a cap on them, but he didn’t make a law, and he didn’t give them extra funding. He did it as a sort of suggestion, and nothing has changed”.

In the wake of her January crisis, Riven received a letter from Cameron. It read: “I was worried to hear what an incredibly time you are having at the moment. I know how hard it is for you to care for Celyn and the rest of your family, let alone yourself and you have my every sympathy … I well remember how hard caring for a disabled child can be. Also I know things can feel very different at a local level and despite everyone’s efforts, provision can too often fall short.”

Finally, he reminds her that “in making decisions since I arrived at No 10, I have been determined to look out for the needs of disabled children and their families. That is why I have increased the funding for short breaks for disabled children to £800m allocated over 2011-12 to 2014-15 and why we have introduced a statutory duty on local authorities to provide short break services.”

Riven is not very reassured by this response. “Because it’s not ring-fenced, the local authorities could use it on pot-holes,” she says.

A spokesperson for South Gloucestershire said: “We recognise children with disabilities can have complex needs that require bespoke support arrangements and we try to meet these needs to the best of our ability. Decisions about care depend on the individual’s circumstances but these are assessed by a social worker working closely with the family and other agencies involved. As far as investment goes, we have increased our spending on providing suitable short break activities for children and carers to £1.8m this year.”

Despite Cameron’s sympathy, Riven feels the consistent message coming from the government is that less money should be allocated to disabled people. Reform to Disability Living Allowance payments were announced last year, along with a promise that £1bn would be cut from the budget by 2014. She worries constantly about Celyn’s future, wondering how they will care for her when she is an adult, pointing out that “some of the residential care homes are not somewhere where you would wish to put your child” (the Panorama exposé of abuse in a nearby care home serves only to heighten her fears).

Local authority cuts mean other services for disabled people are being sliced away. Celyn will no longer be eligible for a more modern speech machine, operated by eye movements, because the council is no longer funding them. Then there is the abolition of the Independent Living Fund, which would have helped Celyn’s transition to an independent future. “Parents of disabled children are just watching these cuts with absolute horror. A lot of us are losing money now but we are also losing potential futures for our children,” Riven says.

Her appetite for campaigning is waning. “I don’t like publicity. I would rather not have to go to the media to fight for them, and make people aware of the problems. I’d rather the awareness was there. I don’t have the time for all this stuff. I just want to get on with living life with Celyn while she is still here.”

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