Over the last two months Louisa Spivack (pictured) has written to the prime minister, to the chancellor, to Iain Duncan Smith, secretary of state for work and pensions, to Maria Miller, minister for disabled people, and to equalities minister Lynne Featherstone, warning them that a planned cut to the benefits received by her severely disabled sons (pictured) will drastically reduce their quality of life, confining them permanently to their care home.
So far, she has received an impersonal, printed postcard from the prime minister's office, informing her that her concerns have been passed on to the relevant authorities, and an automated email telling her that ministers are too busy to deal with her comments in person. She is both furious and distraught.
"They are targeting a section of society who are unable to defend themselves in any way at all. That seems to me immoral and cowardly," she says.
A brief line on page 69 of the comprehensive spending review in October announced that the mobility component of the disability living allowance (DLA) would be removed from people living in residential care. The benefit reduction was not explained in George Osborne's speech to parliament, where he outlined the scope of the cuts, and subsequently has not attracted much attention amid the myriad of changes announced that day.
To anyone who has no professional or personal connection with caring for people with disabilities, it is an arcane benefit, apparently easy to snip, its title giving no hint of the devastating consequences that could accompany the cut.
But disability charities are so aghast at the decision that they have questioned whether ministers fully understood the significance of the change they were making. They are lobbying hard to educate MPs, explaining that, for the disabled people who receive it, the allowance represents the difference between being institutionalised, trapped inside their care home for the rest of their lives, or being able to travel to see friends and family, and to participate in society beyond the care home gates.
The DLA mobility component helps to meet some of the extra costs disabled people face when they travel. The government proposes to remove it for those who are living in residential care, affecting the independence of 60,000 to 80,000 people with disabilities.
"Before the election we were assured by David Cameron and George Osborne that the most vulnerable people in society would not be affected by the benefit cuts," Spivack says, adding that she had believed Cameron's own experience of parenting a severely disabled child would make him sensitive to the needs of others in a similar position.
"There was an idea, years ago, that people like my sons should not be seen or heard. This will take us back to a time when people like them were confined to homes," she says.
Her two sons, Daniel, 34, and Joel, 25, are both severely autistic, and live in a care home in Sussex catering specifically for people on the autistic spectrum. They are living far from their parents' home in north London (where they were cared for until they left school) because there were no good specialist homes with places for them any closer. Neither of them speak, but Danny is more severely disabled than his younger brother, diagnosed with epilepsy, curvature of the spine, and a prolapsed disc that leads to periods when he cannot move. Both sons receive the higher rate of the mobility allowance, £49.85 a week, a reflection of the seriousness of their disabilities.
Danny's behaviour disturbs other residents at the home, so he is unable to travel with them. The DLA mobility component has helped fund a car exclusively for his use, which his carers use to take him for daily walks in the nearby forests, regular swimming sessions and all his doctors' appointments.
Without his own car it would simply be impractical for him to leave the home, his mother says. If his routine is disrupted Danny can get anxious and a bit aggressive, she explains. He is unable to use public transport, and even if he could, the care home in Sussex is in a rural area, not close to a bus stop. When he has travelled by bus in the past, Spivack says, other passengers have been upset by him, and he is equally distressed by the noise of other people.
"The public is more accepting of young children with disabilities than they are of adults with disabilities. Since he got big and noisy, the public don't like it," she says. "It can be quite a painful experience to be in a noisy environment. The sound of a baby crying really upsets Danny. He can't be taken out with other people. He doesn't like the close proximity to others."
The car he uses at the moment has been fitted with a seat right at the back, with seatbelts designed both to support his back and to restrain him. "He has to sit at the back of the vehicle because he has a tendency to take his T-shirt off and flick it at the driver," Spivack says. "If he didn't have his car, he wouldn't be able to go walking or swimming, his health would deteriorate. He would be depressed. He would be stuck on site."
The government says the allowance will be removed in October 2012 because it duplicates money already allocated by local authorities to care homes to fund transport. Charities and opposition MPs say this does not take into account the funding shortages already being experienced by care homes and local authorities, and warn that there will not be enough money in local authority budgets to provide the required transport.
The money allocated to Spivack's younger son has gone towards financing the care home's shared vehicle, as he is better able to travel with other residents. "The government says local authorities should fund communal vehicles. But local authorities are so cash-strapped – how are they going to be able to finance it? Consequently there are going to be lots of people like Danny and Joel who are going to be housebound," Spivack says. "If [the benefit] is going to be withdrawn it will take away their only enjoyment in life."
Describing the decision as "callous", Richard Hawkes, the chief executive of the disability charity Scope, questioned its fairness. "Disabled people and their families do not have 'broad shoulders', so why are they bearing the brunt of these cuts?" he asked.
In a statement, the Department for Work and Pensions said: "Currently some people in residential care receive support for their mobility needs through disability living allowance and mobility support funded by their local authority. We want to remove that duplication and make sure that the system is fair. These changes won't come into effect until October 2012 and we will continue to work with disabled people and organisations to ensure benefits meet the needs of disabled people. The government expects that the cut will save £135m a year by 2014-15."
But Tom Madders, head of campaigns at the National Autistic Society, says: "For a relatively small saving to the Treasury the removal of this benefit will greatly reduce the quality of life and autonomy of a significant group of people who are already marginalised in society."
For the moment, this is a cut that the disability charities are very worried about, but one that has not yet become a source of more widespread outrage. But campaigners warn that this issue, coupled with the broader cuts to disability benefits, is likely to trigger visible and noisy protests this year.
The decision to reassess claimants' eligibility for DLA more generally is likely to mean that more than half a million disabled people will lose some or all of the benefit, says Neil Coyle, director of policy with the Disability Alliance. "Coalition cuts to welfare are not well targeted and will affect even people with severe health conditions and disabled people with multiple impairments, leaving the disproportionately worst off now to suffer further as the cuts take effect."
Campaigners are concerned that, as well as disrupting daily routines, the removal of the benefit will prevent care home residents from spending time at home with their families.
Tahira Khan-Sindhu's son Hamzah was born at 27 weeks. Now 22, he has cerebral palsy, epilepsy, learning disabilities, no speech and is doubly incontinent. She and her husband cared for him at home until he was 18, when, reluctantly, they moved him into a care home about an hour's bus ride away from their home on the outskirts of Manchester.
Since the move she has been anxious that he should not feel he has been consigned there permanently, forgotten by his relatives. She has used the mobility allowance to help finance a van that can accommodate a wheelchair, so she can take him home for regular visits.
"I don't want him to think that he's there and that's it. He is very excited when he comes home. He meets the extended family, he meets up with my parents, he has cousins, nephews, nieces, and they all shower so much love over him," she says. Without the allowance, the care home would not be able to spare the communal vehicle to ferry him home. He would not be able to travel by public transport and the cost of a taxi would be prohibitive.
"The place where he lives does not have enough vehicles. Six people live there, all reliant on one vehicle. The care home doesn't have the funds. They are being cut," she says.
Kate Green, Khan-Sindhu's Labour MP for Stretford and Urmston, says it is unrealistic to expect these costs to be met by stretched local authorities. "People in residential care are more likely to have highly specialised, costly transport needs," she says.
"If this benefit is withdrawn it will become impossible for many of them to get out when they want to, visit family and friends, or even make trips to the shops. They'll be prisoners in their own homes."
The charity Mencap was so surprised by the decision to remove the benefit that it suggests that the government has failed to appreciate how important it is. "We believe that the government has made a mistake and has misunderstood how people use this important benefit. Without this vital lifeline, people in care will lose their independence, be unable to take part in activities that they enjoy and be cut off from their friends and family," the charity says.
"We are very concerned that, as an unintended consequence of this proposal, many people with a learning disability will be denied opportunities to meet with friends and families, participate in external social activities and engage with their local communities."
A group of charities published a report yesterday, Don't Limit Mobility, setting out their concerns about the cut, arguing that local authorities are in no position to meet the shortfall, and warning that the impact on those who receive the allowance will be "massive", "with many left unable to afford to leave their home, and denied the independence most people take for granted".
At her home in Old Trafford, Khan-Sindhu gives vent to a rush of fury. "I know that the government faces hard decisions, but what about the children? Where is their quality of life? My son can't say 'I want to go and see my mum and dad – I'll take the train or I'll walk.'
"He is being penalised for being disabled. Where are his human rights? Where is his dignity?"
Thursday, January 13, 2011
In Britain, disability living allowance cuts could mean disabled people are stuck at home with few services
The Guardian in the UK:
Posted by BA Haller at 5:24 PM