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Ahead of the annual international celebration of the achievements of disabled people, a report reveals how disabled families are left baffled by 18 months of constant benefit changes. In some cases the cuts and ensuing confusion are pushing people over the edge and deeper in to poverty.

Destination Unknown: Autumn 2011, the second report in a two-year longitudinal study by the think tank Demos, finds that the Government’s failure to adequately explain and communicate changes to recent to welfare benefits and administrative mistakes have left disabled people in a ‘no man’s land’ between the current system and the new Universal Credit that is due to come into effect in 2013. The report comes ahead of International day of Persons with Disabilities on 3rd December

As benefit cuts bite, local services close and the cost of living rises, disabled people have reported that they are struggling to make ends meet, cannot make sense of the situation and are very uncertain about their future.

One of the people featured in the tracker study, funded by the disability charity Scope, disposed of their savings because they wrongly believed that if they had any they would not be eligible for state-funded social care. Another did not know that Employment and Support Allowance (ESA) had been introduced, let alone about the changes limiting receipt of some elements of the benefit to 12 months. 

Scope is calling on the Government to take control of the situation, outline the rationale for its changes and make sure people who are affected understand what is happening.

The Government’s welfare reforms, which will result in one of the case studies in the report evicted from their home of 10 years, raises wider questions about the future of the welfare state as the ‘safety net’ that disabled people rely on to live their lives begins to unravel.

The report found that, as the state pulls back its support, disabled people are looking elsewhere – to charities, emergency grants, employers support schemes and community – for financial support. Yet these alternatives are disappearing or unable to cope with the increase in demand.

One of the disabled families in the study has already been refused support after the charity they had relied on has been “inundated” with demand. Another has found her local advice service is under the threat of closure.

Claudia Wood, Head of Public Services and Welfare at Demos said:

“Last spring, we described welfare reform going through a period of calm before the storm. Now, six months on, the storm has well and truly arrived. As well as a reduction in benefits – some totaling as much as £800 – the human cost of austerity is becoming ever more clear. Disabled people are being left in the dark regarding their entitlements, facing escalating debt, repossession and mental health problems as a result of the stress and uncertainty of constantly battling to secure the support they are entitled to. This is not a smooth transition to a new system and not without victims.

“Worse still, these families are trying to look for alternatives to state support, but are finding community and third sector services are struggling with cuts themselves and can provide one-off help at best. Many of the families in the study really have come to the end of the line financially.”

Richard Hawkes, Chief Executive of disability charity Scope, said:

 “This alarming report shows just how hard the Government’s welfare reforms have hit disabled people.

“Times are tough are for everyone, but the daily battle that disabled people face to get the support they need in the face of cuts to welfare benefits and services and misinformation could push many into poverty.

“Disabled people and their families have been left in a no man’s land between the current welfare system, which itself is in a state of flux, and the introduction of the new-style Universal Credit system in over three years’ time.  The Government urgently needs to take control of the situation and develop and implement a clear strategy to tell disabled people what they are doing and why.

“It’s also becoming clear that these welfare reforms raise very important questions about the future of the welfare state and what will happen to disabled people as they are separated from the support they need to live their lives.”

The next in the series of ‘Destination Unknown’ tracker studies of six disabled households, researchers found that some disabled households have lost as much as £800 since April (over £100 per month) due to changes to welfare provision.

Impact on families:

The report follows six typical disabled households, finding them all increasingly financially vulnerable to unexpected costs and administrative errors with benefits and social support.

The families surveyed include: 

• A disabled man (Albert) and his wife who cares for him, who also has moderate disabilities
• A young disabled child (Aisha), cared for by her mother and father
• A middle-aged, disabled man (Steve) who is a social care service user 

Albert had a stroke in 2006. This left him with a weakness in his left hand, his leg often locks and he has two heart defects. He also experiences regular memory loss.

Since April Albert and his wife have lost £781.55 – largely because they have been penalised for drawing their pension, a move which costs them £30 per week in lost benefits income.

Since the government’s cuts to Support for Mortgage Interest, Albert and his wife have fallen into arrears. Then, due to an administrative mistake, between June and October Albert and his wife had their SMI suspended. Although this was eventually paid back to their lender, this delay exacerbated an already tense situation: their mortgage arrears climbed steeply by £6000, to £13,000 in the last six months. Their mortgage lender had threatened to repossess their home, and they had received daily letters and phone calls; Albert said: “They got very heavy. Bully boy tactics. They were really, really ferocious. It got to a point where it was madness.” Eventually, in November 2011 they were told they would be evicted from their home of 10 years in early 2012.

Aisha was born with Cerebral Palsy and has quadriplegia and epilepsy.

Since April Aisha’s family have lost nearly £200 – due to the change from RPI to CPI in how benefit increases are calculated. The family have had to cancel hospital appointments as they are unable to afford taxis.

Due to constant battles to access the support Aisha is entitled to – the family have been waiting six months for a vital piece of equipment and have had a yearlong fight to have a bedroom adapted – Aisha’s mother’s mental health has deteriorated. In spring she felt “less in control” over her anxiety and depression; by autumn we find that she now has weekly counselling and needs antidepressants three times a day – which costs £100 a year.

Steve is a middle-aged man with secondary progressive MS, who is a social care user.

Steve has Multiple Sclerosis and worked until 2005, when his condition deteriorated. He receives three hours of home care a day. Since April Steve has lost £101.12 in income due to the change from RPI to CPI in how benefit increases are calculated, but has also had to contribute  £517.65 of his DLA towards his care due to a tightening in his local authority care contribution rules. This means Steve is £618.77 worse off in just six months.

The research found that between April and October 2011, Steve needlessly disposed of his small amount of savings as he was under the impression that he was not allowed to have any in order to be eligible for his social care package. 

Steve said: “They have to cut the deficit somehow but I don’t see why they have to take it out on disabled people.”

The report recommends:

• The Government develops a clear communication strategy, clarifies what changes it is making how disabled people will be affected. Of the six families studied, three of them were under false impressions regarding changes to their benefits.
• An urgent public debate on the future of the welfare state – as both government and opposition increasingly talk about “something for something”, greater clarity is needed on what this actually means in terms of contribution to and participation in society.

This new research underlines the importance of the recommendations outlined 6 months ago, in Destination Unknown: Spring 2011 (presented below). The new report argues that these policy changes are even more pressing today.

Notes to Editors

Destination Unknown: Spring 2011 outlined these recommendations:

1.     Scrap the proposal to limit Employment and Support Allowance (ESA) Work Related Activity Group (WRAG) claims to one year

2.     Maintain the local authority duty to provide Community Care Grants and Crisis Loans and ringfence this funding

3.     End the inclusion of DLA as a contribution to social care funding

4.     Review the single rate of SMI and consider claims on a case by case basis

5.     Ensure assessment for the new Personal Independent Payment reflects costs, not just a determinant of ‘need’

6.     Carry out a proper review of local level cuts

Destination Unknown: Autumn 2011 is available to download from:
www.demos.co.uk/publications/destinationunknownautumn2011

Destination Unknown: Spring 2011 is available to download from:
 www.demos.co.uk/publications/destinationunknownspring2011

The original report Destination Unknown (Oct 2010) forecast £9bn worth of cuts to disability welfare alone.

Find out more about the families and the tracker study: 
http://www.demos.co.uk/projects/disabilityausterity

Case studies are available.

Contact

Demos

Beatrice Karol Burks

beatrice.burks@demos.co.uk

020 7367 6325

079 2947 4938

Scope

Warren Kirwan

warren.kirwan@scope.org.uk

020 7619 7702

07843 467 948