The Government calls it “welfare reform”. But to many disabled people it’s actually about benefit cuts. The impending switch from DLA to PIP hangs over people like the sword of Damocles. Emma Bowler has been talking to those from one already struggling group who feel particularly threatened

Deaf/blind mum Janice Tillet and her 5-year-old daughter

A disaster waiting to happen”, “Like starting an avalanche”, “Waiting for the car crash” – stark terms that have been used to refer to the biggest reform of the welfare system in over 60 years.  

One major change is that the Disability Living Allowance (DLA) is being reformed and a new benefit called Personal Independence Payment (PIP) is being introduced to replace it. People’s big fear is that the assessment criteria for PIP will be more rigorous, with easy black-and-white judgements being made on eligibility.  

The Government says it is  committed to supporting disabled people to exercise choice, and control and lead independent lives. They also say PIP will focus support on those who experience the greatest barriers to living independently. But disabled activists argue assessments will be more medically based, rather than concentrating on the social barriers which are what really disable people.    

And there are increasing fears that shifting the eligibility goalposts is more about meeting spending cuts targets than recognising disabled people’s need for extra financial support to cover the additional costs of living with a disability.  

Indeed the stated aim is to cut overall spend on DLA/PIP by £1.45 billion per year by 2014/15.  According to the Government’s own figures about half a million people will lose entitlement altogether while others will qualify for a lower rate than they currently receive.  

Disabled parents make up one group who are particularly worried about the impact these cuts will have on them. One disabled father of three young boys, two of whom are autistic, is so concerned about losing benefits he wants to remain anonymous. We’ll call him George.

“I am disabled by severe, progressive arthritis and I was retired from the civil service at 40 on health grounds.  My lack of functionality makes it impractical for my wife to work and benefits and tax credits are a critical part of our income. I am afraid that we will lose our adapted car because I can still walk very short distances and am not sure I will qualify under proposed PIP criteria, even though I use a powered wheelchair and have a hoist for it in the car.”   

George is struggling not to worry, particularly as stress aggravates his arthritis, but he says that if he loses his car he will effectively be housebound and the loss of benefits will impact on his role as a father. “Without my car I won’t be able to take part in any family activities outside the home. We will no longer be able to afford the activities the boys currently do such as Scouts, which is important for developing their social skills, and sports – activities I could do with them myself were I physically able.”  

Deaf/blind mum Janice Tillet, who has a 5-year-old daughter, is also concerned. “If I want to take my daughter out I use my personal budget to pay for the hourly rate of a nanny. Then the DLA helps with the extra costs. For example if we go out to the zoo I have to pay for an extra adult, I also have to pay for their food and mileage, these things all add up.”

Even though Janice works full time she is worried that proposed cuts to her benefits will have a severe impact on her role as a mum. “If I lose my DLA I’m worried I won’t be able to afford to take my daughter out, go swimming or go to the play area we go to – all the normal things that parents do. I just won’t be able to afford the extra costs that non-disabled parents don’t have.”

George and Janice are not alone, Disabled Parents Network Vice-Chair, Andrew Clarke, says: “At the moment welfare reform is the biggest cause of stress for disabled parents, particularly for disabled parents who rely on disability benefits to carry out their parenting role.

“There’s a whole group of disabled people who will just fall out of the benefit system,” Andrew adds. “One problem is that receiving benefits is a validation of being a disabled person.  So if you don’t get those benefits you’ll lose local authority things like council tax benefit, leisure discounts – which means increased costs as a parent; you’ll probably lose Access to Work, you will almost certainly lose protection under discrimination legislation. These are huge knock-on effects.”

Those with sensory impairments, variable conditions, mental health issues and even those who have adapted well to living with a disability are likely to be hit hard due to the proposed assessment criteria.  

Ironically, benefit cuts will just shift the financial burden elsewhere. “Cutting benefits will force disabled people to be dependent on local authority care services at a time when they are cutting those services; but they have an obligation to assess disabled people, they have an obligation to look after their children too,” Andrew says. “Also if you take away disabled people’s benefits they will become anxious and depressed; then they will go to their GP and that costs the NHS money. If they are also referred on to mental health services that costs more money. These changes are an avalanche in the making.”

For the moment disabled children will be unaffected by the DLA switch to PIP. However it is virtually impossible that such a radical overhaul of the benefit system will leave them unscathed.  

Contact a Family’s recent survey of over 2,300 families, Counting the Costs 2012, has found that families with disabled children are going without essentials and spiralling into debt, even before the full impact of planned benefit cuts is felt.

Moira Hookings, mum to Leon who has autism, says: “I’ve axed my weekly shop and regularly go without meals to make sure Leon has enough. He gets upset when I don’t eat but I just tell him not to worry as I’m not hungry. I’ve borrowed money from family to pay for food, gas and electric and I took out a credit card for Leon’s school uniform and footwear which I am now paying off at £20 a month.”

Srabani Sen, CEO at Contact A Family says: “It costs three times more to raise a disabled child due to additional costs such as transport, heating, special food and clothing. This means families with disabled children are more likely to be living in poverty than others. Welfare reform is just adding to the stress levels already experienced by parents of disabled children. We found 58% of families fear their financial situation will worsen in the next year and the majority, 73%, cited welfare reforms as the main reason for their fear.”  

A recent report published by Demos and funded by Scope, Destination Unknown, does nothing to alleviate this fear. It predicts that disabled families face a drop in income that will place many of them in a “struggle for survival”.  

The study is tracking the lives of six disabled families through the austerity measures and welfare reforms and reveals alarming truths about the deteriorating quality of life disabled people in Britain are experiencing.  

Since the Emergency Budget two years ago, disabled people and their carers have seen a drop in income of £500million. But with the overall cuts to disability support predicted to come in at £9bn by 2015, Demos and Scope warn that the struggle has only just begun.

“Times are tough for everyone at the moment,” explains Richard Hawkes, Chief Executive of Scope, “but disabled people are facing spiralling living costs at the same time as their financial support and local social services are falling away. Yet this is just the tip of the iceberg.” 

He adds: “We recognise the need for deficit reduction but decisions are being made without any real understanding of the cumulative impact cuts to welfare support and local services are having on people’s lives. We urge the Government to take action now, before the majority of its reforms come into effect, and to ensure disabled people do not bear the brunt of its austerity measures.”

Disability Now