"Stress and autism are words you can't define in Urdu or Punjabi"

Asian communities are being disproportionately affected by new rules on disability benefits and support.

Life is a never-ending struggle for Roxanna, who looks after disabled son Ahmed. Ahmed, 26, has been at home since his college course ended last year and he is not eligible for a day care centre.

"I have been left to care for my son, no one cares about him," says Roxanna, from Birmingham. "People think Ahmed is mad and that I am cursed. I am not able to work because I can’t leave Ahmed on his own. I only get carers' allowance, Ahmed’s DLA has been cut and he is now on the low rate.

“I am struggling to make ends meet."

This is the situation faced by many families in Britain. Campaign groups say the Asian community is being affected more by the controversial welfare cuts due to the language barrier, mainstream support services not reaching out to them, services not being culturally tailored, and the stigma that remains about disability.

And it could get worse. From October, thousands of disabled people who need to be reassessed for the new Personal Independence Payments (PIP) could have their benefits slashed.

Saghir Alam is a disabilities commissioner for the Equalities and Human Rights Commission. He says that many Asian families who look after a disabled child are suffering due to a lack of awareness about the help available: “Ethnic minority communities are disproportionately more affected by these cuts because they weren’t accessing these services before and some of these services don’t exist anymore. Sometimes they are not faith wise or culturally sensitive and don’t have the resources to do outreach work. A lot of organisations have got no funding as the budget from the local authority has gone down for project funding.

“I know of a parents group for disabled children in Yorkshire which started two years ago - it took nearly two years to get people on board. After one year they lost their funding.

“We need to sit down with community organisations, carers, parents, and ask them rather than [assume] that services are good.”

Other Asian groups that have lost their funding include EKTA Project, a group for the elderly in London that was created 26 years ago.

Alam’s role involves providing advice to councils and support services on how to engage with different communities. He believes that despite the success of last year’s Paralympic Games in London, it has not had a lasting legacy of changing attitudes towards disabilities: “In the mainstream, disabled people still face barriers. If you have multiple identities like race or faith, you face multiple disadvantages.

“There are still attitudes which are Victorian in the Asian community, so a social model has never been promoted. People don’t want to admit they have children with a disability because in society there is still a negative association with disability.”

Alam adds that some families are losing their benefits after going through assessments due to a language or cultural barrier.

The Work Capability Assessments sparked uproar last year as around 40 per cent of people successfully appealed the decision to deem them fit to work. The coalition government agreed for the Atos firm to carry out the assessments to cut £600 million in overpayments to people who no longer qualify for Employment Support Allowance.

Alam explains: “People may not come to town hall or council offices so you need to use community organisations. Families are too busy caring [for disabled relatives] to do that. I know one or two people who have mental health issues, and they lost their benefits and went to appeal. Stress and autism are words you can't define in Urdu or Punjabi. A lot of terms used in assessments sometimes do not translate.”

Another campaigner critical of mainstream services is Mandy Sanghera, a human rights activist and government adviser. "Many families are continuing to care for their family members because most services do not meet their child's needs, they are not specialised," she says. "Many carers are unaware of what services are out there for their child once they leave school we need better transition into adult services. Due to the cuts, we are pushing desperate families into crisis point. “ 

One disabled person that Sanghera has supported is Jeeta, who has multiple sclerosis and is in a wheelchair. Jeeta, 30, who lives with her parents in an area with no suitable ground floor housing, says: “I want my independence and I don’t want my mum to care for me, she is over protective because of my disability. [But] I don't know where to go for help.”

The extent of the crisis is echoed by Sabina Iqbal, chair and founder of Deaf Parenting UK:There is a higher prevalence of disability within the Asian Community due to inter-relational marriage within the family. Most of those families are unaware of the impact of the welfare changes due to [the] language barrier and do not have direct access to information through the media. Reaching out to those Asian families is not easy and is often [done] by the local worker who shares information via word of mouth.”

A spokesperson for the Department for Work and Pensions said Job Centre Plus and councils arrange to meet directly with people affected by going to their homes or arranging a meeting.

On PIP, he said messages are delivered via charities, councils and other stakeholders.

The 'Hardest Hit' march on May 11, 2011 in London, where thousands of disabled people marched against government cuts to benefits, disability living allowances and local services. Image: Getty
Photo: Getty
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The New Statesman 2016 local and devolved elections liveblog

Results and analysis from elections across the United Kingdom. 

Welcome to the New Statesman's elections liveblog. Results will be coming in from the devolved legislatures in Scotland and Wales, local elections in England, and the mayoral contests in London, Salford, Bristol and Liverpool. Hit refresh for updates!

23:04: Back to Wales - YouGov's poll "looks about right" according to my Plaid Cymru source. What does that mean? Labour could go it alone and do deals on a vote-by-vote basis - they govern alone now with just 30 seats. If the poll is even a little out - let's say either Labour or the Liberal Democrats get one more seat - they might do a deal if they can get a majority with the Welsh Liberal Democrats. 

23:01: Pallion Ward in Sunderland is the first to declare, and it's a Labour hold! More on percentages as I get them. 

22:58: Why isn't it an exit poll, I hear you ask? Well, an exit poll measures swing - not vote share, but the change from one election to the next. People are asked how they've voted as they leave polling stations. This is then projected to form a national picture. Tonight's two polls are just regular polls taken on the day of the election. 

22:57: The Sun's poll - again, not an exit poll, I'm not kidding around here - of Scotland has the SNP winning by a landslide. (I know, I'm as shocked as all of you) But more importantly, it shows the Conservatives beating Labour into second place. The Tories believe they may hold onto Ettrick as well. 

22:55: What news from Scotland? Labour looks to have been wiped out in Glasgow. Liberal Democrats think they might hold at least one of Orkney or Shetland, while the seats in Edinburgh are anyone's game. 

22:52: Hearing that turnout is low in Waltham Forest, Lewisham, Hackney and my birthplace of Tower Hamlets (the borough's best export unless you count Dizzie Rascal, Tinchy Stryder or Harry Redknapp, that's me). Bad news for Labour unless turnout is similarly low in the Tory-friendly outer boroughs. 

22:47: YouGov have done a poll (note: not an exit poll, it should not be taken as seriously as an exit poll and if you call it an exit poll I swear to god I will find you and kill you) of the Welsh Assembly. Scores on the door:

Labour 27

Plaid Cymru 12 

Conservatives 11

Ukip 8

Liberal Democrat 2

There are 60 seats in the Assembly, so you need 30 seats for a majority of one. 

22:40: In case you're wondering, how would closing a seven point deficit to say, six, compare to previous Labour oppositions, I've done some number-crunching. In 1984, Neil Kinnock's Labour turned a Tory lead of 15 per cent at the general election to a Conservative lead of just one per cent. In 1988, one of 12 per cent went down to one per cent. (He did, of course, go on to lose in both the 1987 and 1992 elections). In 1993, John Smith's Labour party turned a deficit of eight points at the general to a Labour lead of eight points in the local elections. William Hague turned a Labour lead of 13 points to one of just six in 1998, while Iain Duncan Smith got a Tory lead of just one point - from a Labour lead of nine. In 2006, new Tory leader David Cameron turned a 3 point Labour lead to a 13 point Tory one. Ed Miliband - remember him? - got from a Tory lead of seven points to a two point Labour one. 

22:35: John McDonnell is setting out what would be a good night as far as the party leadership is concerned - any improvement on the 2015 defeat, when the party trailed by close to seven points. Corbyn's critics say he needs to make around 400 gains.

I've written about what would be good at length before, but here's an extract:

"Instead of worrying overmuch about numbers, worry about places. Although winning seats and taking control of councils is not a guarantee of winning control of the parliamentary seat – look at Harlow, Nuneaton, and Ipswich, all of which have Labour representation at a local level but send a Conservative MP to Westminster – good performances, both in terms of increasing votes and seats, are a positive sign. So look at how Labour does in its own marginals and in places that are Conservative at a Westminster level, rather than worrying about an exact figure either way."

22:31: Oh god, the BBC's election night music is starting. Getting trauma flashbacks to the general election. 

22:22: A few of you have been in touch about our exit poll. Most of you have been wondering about that one vote for George Galloway but the rest are wondering what happens - under the rules of the London mayoral race (and indeed the contests in Salford, Bristol and Liverpool), 2 votes would not be enough for Sadiq. (He needs 2.5). However, all the other candidates are tied - which makes it through to the second round. What happens then is the second preferences are used as a tie-break. Of the tied candidates, Sian Berry has the most second preferences so she goes through to face Sadiq Khan in the final round. Final round is as follows:

Sadiq Khan: 3

Sian Berry: 2

3 votes is above the quota so he is duly elected. An early omen? 

22:19: Burnham latest. A spokesperson for Andy Burnham says:

"Approaches have been made to Andy Burnham to give consideration to this role. It is early days and no decision as been taken. Whatever the decision, he will continue to serve the leader of the party and stay in the shadow cabinet."

22:17: Anyway, exit poll of the office. We've got:

Sadiq Khan: 2

George Galloway: 1

Caroline Pidgeon: 1

Sian Berry: 1

22:15: Update on Andy Burnham. He has been asked to consider running. More as we get it. 

22:13: People are asking if there's an exit poll tonight. Afraid not (you can't really do an exit poll in elections without national swing). But there is a YouGov poll from Wales and I am conducting an exit poll of the four remaining members of staff in the NS building. 

22:11: It's true! Andy Burnham is considering running for Greater Manchester mayor. Right, that's it, I'm quitting the liveblog. Nothing I say tonight can top that. 

22:09: Rumours that professional Scouser Andy Burnham is considering a bid for Greater Manchester mayor according to Sky News. Not sure if this is a) a typo for Merseyside or b) a rumour or c) honestly I don't know. More as I find out. 

22:06: Conservatives are feeling good about Trafford, one of the few councils they run in the North West.

22:03: Polls have closed. Turnout looks to be low in London. What that means is anyone's guess to be honest. There isn't really a particular benefit to Labour if turnout is high although that is a well-worn myth. In the capital in particular, turnout isn't quite as simple a zero-sum game as all that. Labour are buoyant, but so are the Tories. In Scotland, well, the only questions are whether or not the SNP will win every single first past the post seat or just the overwhelming majority. Both Labour and Tory sources are downplaying their chances of prevailing in the battle for second place at Holyrood, so make of that what you will. And in Wales, Labour look certain to lose seats but remain in power in some kind of coalition deal. 

22:00: Good evening. I'm your host, Stephen Bush, and I'll be with you throughout the night as results come in from throughout the country. The TV screens are on, I've just eaten, and now it's time to get cracking. 

Stephen Bush is special correspondent at the New Statesman. He usually writes about politics.