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.