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By: Abiola Lawal
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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.

A study, based on interviews with 600 ethnic minority parents of severely disabled children, carried out jointly by researchers at the University of Bradford and the University of York revealed that ethnic minority parents of severely disabled children faced more problems than their white counterparts. DivaScribe explores the findings of this ground breaking study.

  • 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.
  • Fewer parents were receiving Disability Living Allowance or Invalid Care Allowance compared with white families previously surveyed.
  • 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.
  • 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.

Such shocking state of affairs led me to do some research into charities that were tackling this problem for BME disabled children in the UK. I wanted to raise awareness and support for an otherwise unheard voice, and on my journey encountered one of the most ground breaking charities growing in the UK at the moment.

Based in Wolverhampton, Include Me Too is a national charity supporting disabled children of Black and Minority ethnic backgrounds. I went up for a visit to find out more about some of the wonderful work they are doing for an otherwise marginalised section of our society here in the UK.

 

Beginnings

 

 

It all began back in 2002 when Parmi Dheensa, the Founder and Executive Director decided to make a positive difference for her youngest son, who has severe learning difficulties, vision impairment and other physical difficulties. Her son was born premature and was supported in the premature unit for several months.

Parmi had an extensive background in health and social care through her previous career path and equipped with this knowledge she was inspired to do something for her son and other families with disabled children to make sure they got the best out of life. A woman with a mission she got the ball rolling on this project and with the support of other parents and carers and professionals from the community, including trustee Janet Smith, they started meeting other families from Black and Minority ethnic backgrounds who also had children with a wide range of disabilities. They all connected with each other on the basis that they were under exposed and did not have a voice in the mainstream; services and provisions did not meet their needs and they felt excluded.

In 2008 they became a registered national charity, with their own National Charter of Rights for Disabled Children and Young People which has been endorsed by several government departments including the Prime Minister. Over 700 families are now involved with the charity and their programmes; which include day trips and holistic therapies. Through strength and commitment the families have helped this charity to work and grow.

 

Family Experience

“She was our baby. She was our first. To us, whether there was something wrong or not, she was still a baby. She still needed us, and so we just got on with it.”* Pete”

 

 

 

One of the families that I spoke to *Pete and *Stacey had their first child, a daughter in 2006 with no health issues and by all means a healthy, normal baby girl. She later developed cerebral palsy and now has the mental age of 2 after significant breathing and heart irregularities occurred 52 hours after birth. Alleged medical negligence led to her current condition. The lack of support they received led to a breakdown of trust with the NHS and other medical authorities. They are currently in a legal battle with the hospital where their daughter was born. This family are now stretched in a variety of ways on a day to day basis, but somehow manage to pull through every day. Their work with Include Me Too has helped them to find ways to deal with a situation that no parent(s) should ever envisage.

Due to traditional cultural differences they have found themselves alienated from Pete's family, who blame Stacey for their daughter’s current condition and have not provided any support. This is a situation in which many BME parents with disabled children share. Ostracised, blamed, shame and traditional superstitions leave them feeling further outcast in a world where they are already a minority.

 

Faith

 

 

On the bright side is the positivity I encountered on my visit with the charity. The spirit and ethos of the charity: faith, hope and patience resonates. They work with the families to inspire change and give strength when things seem difficult. One of the ways they practice this ethos is through faith. Faith and religion is an integral aspect of this charity, and is what binds the majority of the families together. Many of the families come from very religious backgrounds and use their faith to get them through what many can never really comprehend. Spiritual practice, prayers and holy gatherings are encouraged and practised within the community. I believe this is what gives it something even more special and significant, that most can identify with.

Include Me Too is an amazing charity with a lot to offer the Black and ethnic minority community around the UK. Please show them your support and get in touch.

 

http://www.includemetoo.org.uk/

 *names have been changed to protect identities.

 

 


 

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