Study finds minority ethnic families with disabled children 'living on the edge'

Families from ethnic minority groups experience even greater disadvantage and difficulties in caring for a severely disabled child than their white counterparts, according to research funded by the Joseph Rowntree Foundation.

The groundbreaking study, based on interviews with 600 ethnic minority parents of severely disabled children, was carried out jointly by researchers at the University of Bradford and the University of York. It found that needs and circumstances varied across different groups. But a range of measures - including household income, support from members of the extended family and unmet care needs - revealed many more problems than a previous national survey of family carers who were mostly white.

• Most families had net incomes below £200 a week. Those experiencing the greatest economic disadvantage were lone parent families – a group that included two out of three Black African / Caribbean families. Pakistani and Bangladeshi two-parent families had lower incomes than Black African / Caribbean and Indian two-parent families.
• Levels of employment were low, including three out of four mothers who had no work. Black African / Caribbean and Indian mothers were more likely to be in work or say they wanted employment than Pakistani or Bangladeshi mothers.
• Fewer parents were receiving Disability Living Allowance or Invalid Care Allowance compared with white families previously surveyed. Although all the ethnic minority parents interviewed were caring for a child with severe disabilities, they were less
  likely to have been awarded benefit at the higher rates.
• Parents who understood English well had much higher levels of benefit take-up than those with a limited understanding. Among one in three Asian parents who said they needed translation help when talking to health and social care professionals, a large minority had not been provided with an interpreter.
• There was little evidence to support stereotypes suggesting that ethnic minority families generally benefit from extended family support. Fewer mothers received practical and emotional support from partners than white counterparts.
• Black African / Caribbean and Indian families were especially vulnerable to low levels of extended family support. The most cited reason was that no relatives lived nearby.
• Ethnic minority parents reported that their disabled children had many more unmet needs than white families in the earlier survey. Half identified seven or more areas where they needed more support than currently provided. This included help with their child’s learning, communication and physical abilities, access to leisure opportunities and learning about culture and religion.
• Twice as many ethnic minority parents reported ten or more unmet needs of their own compared with white parents. These included lack of guidance about services and opportunities to acquire skills that could help their child. Over two thirds of parents said they did not get a break from looking after their child as often as they needed, yet only one in four had access to short breaks.

Professor Waqar Ahmad, now at the University of Leeds, co-author of the report, said: “We know from the previous national survey that financial difficulties, unmet needs and inadequate support networks are common problems among families who care for severely disabled children.

“But this research reveals that there is an added depth and intensity to the problems faced by ethnic minority families which policy makers must take on board as a matter of urgency. Poor communication with professional care services, lack of recognition of parents’ needs, as well as lack of support and high levels of economic disadvantage, have left too many of these families living ‘on the edge’”.