Participation of BME families in government
It is essential that all parents and carers of disabled children can participate in decision making, including those of minority ethnicities and cultures. Over 50% of children with disabilities in Greenwich are in BME families (figures provided by the local authority) and yet these ethnic groups are the least likely to engage with service providers such as health, education and social care.
Non-acceptance of disability in BME communities
Parents tell us that there are problems with accepting disability in some BME communities. Disabled children can be a source of shame, a sign of insufficient faith or a curse. Parents are told that their children can be 'cured' through prayer. Disabled children are not always welcome at their church services. Parents are fearful of taking their children to church services if the child presents challenging behaviour, is noisy or just appears to be different. They are shunned by their communities.
The church is at the centre of the community so from this comes a general feeling of rejection and stigma which causes the family to withdraw. Isolation creates further problems including stress, poor health and family breakdown.
Head teachers report that parents will not engage with the school and may not accept a diagnosis. This obstructs support for the child at a time when budgets already under pressure from funding cuts and increasing numbers of students with SEND in the classroom. Without the parent-school partnership in place, the outcomes for children are bleak.
Young people who with the right support could have gone on to find rewarding jobs or enter further education and be happy, valued members of society end up excluded, isolated, with metal health problems or even in prison. This is a tragic waste of potential and life.
The GPV ‘Embracing Disability’ project
Greenwich Parent Voice is working on a project to promote a positive message about disability specifically in BME communities. We hope to engage and inform parents, bring them together in their communities and put them back in control of getting the best support for their children and families.
Step 1: A safe space for parents and carers to come together
The first step has been to identify a school in Thamesmead, Bishop John Robinson Primary School, with a largely BME cohort and a welcoming SENCO. Josephine Tontoh is our Parent Leader in this school and holds a termly coffee morning for parents in the area. For some parents this is their first contact with other carers of children with special needs. Parents are able to talk freely and without judgment about all the issues facing them such as challenging behaviour, sleep difficulties, getting respite, and securing the right support in school for their children.
We are consulting and speaking with Anne Christopher who is a Parent Leader for GPV and also runs the highly valued 'We Listen' support group for BME carers of children with autism in Greenwich. Anne provides insight from her work talking to and supporting parents. Also involved is Joyce Brako-Amoafo who is a friend of GPV, a member of Lewisham Parent Carer Forum and on the committee of the National Network of Parent Carer Forums. Joyce is committed to changing perceptions of disability in BME communities.
Step 2: Getting the support of church leaders across all faiths
GPV has approached the Diocese of Southwark for help in reaching members of the faith community in Greenwich. We are working with Hugh Ridsdill-Smith, Consultant working for Diocese of Southwark: Children and Young People’s Mission and Ministry in developing a message and communicating this to church leaders in the area.
The idea for a special church service, especially for families of children with SEND was suggested by a parent as a way of countering the negative perceptions of disability. It would enable local church leaders to communicate a message of unconditional love and acceptance, bring families that are otherwise isolated and disengaged all together into a supportive network.
Step 3: Accepting Disability event
In 2018 we will be organising a special church service targeted at BME families of disabled children, primarily from the Greenwich area. At this event, local church leaders can speak directly to families and their children. The focus will be on celebrating our children and their lives, the message of love and acceptance: 'All God's People'. We want to talk about the value our children bring to their communities. This will be a powerful statement of acceptance and inclusion.
Step 4: Making a film to share widely
We are planning a short film, based on the special event, and with testimony from parents and from community leaders, to share the message more widely online and on social media.
We think this pioneering initiative could help families not just in Greenwich but in any community where this problem exists.
For this project to work, we need your help! If you are a journalist, charity, politician, teacher, community leader or an interested parent/carer, please get in touch.
Vivien Davies and Joanne Delap
An NAS report into the challenges for families affected by autism in Black, Asian and Ethnic Minority families.