When Parmi Dheensa’s son Callum kissed a classmate on the cheek not long after starting at a special needs primary school, a teacher asked his mother if this was “culturally appropriate”. Dheensa said that as long as the classmate was happy, nothing in her son’s Punjabi heritage forbade such displays of affection.

It is just one example over many years of professionals leaping to incorrect conclusions based on the ethnicity of her severely learning disabled son, who is now 19, says Dheensa. They also assume she does not work and is supported by an extended family when in fact she is a lone parent who works full-time. Dheensa, 43, was once told that her son’s support – he lives at home and is at a special school – was “better than it would be in India”. Fair point maybe, she says, but irrelevant to a British-born, Midlands-based family.

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This does not constitute blatant discrimination but instead reflects the insidious “bias culture” facing black, Asian and minority ethnic people (BAME) with learning disabilities and their families, says Dheensa. They face double discrimination – the disadvantages experienced by all learning disabled people (including health inequalities or austerity), plus a lack of cultural awareness and language barriers. There is often stigma about learning disability in their own communities, too.

Dheensa’s experiences led her to found BAME support charity Include Me Too 15 years ago, after working for the voluntary sector and council in Wolverhampton in various BAME and disability support roles. “Parents aren’t aware of what their rights and entitlements are, they don’t have the confidence to challenge,” she says.

Include Me Too works with 1,500 families a year, and has launched a campaign for the government to review its equality duties in relation to special needs education and support for BAME communities. The charity wants a review of BAME representation in government decision-making (existing involvement is, says Dheensa, “tokenistic”) and a new disability and equality strategy to ensure families get better support. The criticism is that professionals do not fully involve parents in reviews of the support they require, or in drawing up education, health and care plans, and parents or carer forums are predominately white British.

The campaign is timely given that support for the BAME charity and community sector is being decimated by funding cuts and the Equality and Human Rights Commission (EHRC) has warned of the UK’s “deep-rooted inequalities”. There is no firm figure for the BAME learning disabled population. Race Equality Foundation research refers to 60,000 people, but this is based on a 2007 figure. More recent research from the Equalities National Council and Scope suggests the number of disabled (but not specifically learning disabled) BAME people totals one million. According to Lancaster University’s Centre for Disability Research, between 2011 and 2030, 25% of new entrants to adult social care with learning disabilities will belong to minority ethnic communities.

When I complained I wasn’t happy with my daughter’s support, one teacher said to me: ‘this is not Africa’

Assumptions persist that first-cousin marriage in South Asian communities causes disabilities, or communities do not want external help. Jabir Butt, deputy chief executive of the Race Equality Foundation, acknowledges that the “very toxic debate about inter-cousin marriages still plays a part in many people’s perceptions of these issues, and says “until we break away from that, we’re not going to get progress.”

Aniisa Farah, originally from Somalia, is a single parent from the south of England, with an autistic daughter, 10, and son, six, both at a special school. Farah launched a group, Somali Autism Awareness, after noticing a gap in support. She says her determination is interpreted as confrontation: “Because I wear a hijab, they assume I’m uneducated. One teacher told me, when I complained I wasn’t happy with my daughter’s support or didn’t feel involved, ‘this is not Africa’.” Farah adds: “The professionals see anger and a stereotype. I’ve been told I’m ‘very aggressive’ and ‘abusive’, but what they don’t understand is that I’m not attacking them personally – I am standing up for my children. The attitude is ‘you should be grateful for what you’re getting’.”

BAME families also experience a lack of awareness within their communities, as Farah explains: “I didn’t know about autism before my daughter was diagnosed aged six; there’s no word for autism in Somali. Some people – including family and friends in the community – would call her ‘crazy girl’ … I have had to isolate myself from some people so my kids do not get labelled.”

Dheensa, who was once told by a member of her community that perhaps her son’s learning disability had something to do with “karma”, adds: “We don’t even have the language for disabilities. When we’re trying to explain to families certain conditions in many of our Asian community languages, we haven’t got the words that describe cerebral palsy, autism, or epilepsy, for example.”

Butt says that aside from tackling professional attitudes, more work needs to take place at community grassroots level: “It has to start at the beginning when people are first involved [with health and social care support], we’ve got to have support available that explains to parents and carers what that diagnosis actually means”.

Organisations such as Dheensa’s and Farah’s are proof that successful specialist support is possible. Include Me Too recently worked with the Asian mother of a 10-year-old with physical and learning disabilities to secure grants for waterproof bedding and play-therapy equipment. The charity also runs Callum’s Promise, a scheme to increase disabled children and young people’s access to activities and sports. Last week it helped launch an adaptable surfboard with Wales-based community interest company Surfability.

The National Autistic Society’s Tower Hamlets Autism Support has specialist interpreters, for example, and the work of Midland Mencap has encouraged people, particularly from diverse communities, to use services. But Dheensa is also concerned about the precarious situation of asylum seekers with support needs who are not eligible for statutory help: “Include Me Too saw a family with a disabled young person without any specialist equipment or resources – literally a bowl to use as a lavatory,” she says.

Successful initiatives, says Professor Chris Hatton, “are designed to be driven more by people than being imposed by systems: good support means establishing a relationship of trust and listening to people … There will be some patches of the country where it’s great, and bigger patches where it’s not. It’s much harder to get funding for such work. Statutory services are looking for ways to spend less.” Dheensa adds that small community-based charities struggle to compete for funding to run services because the special educational needs and disability support sector (SEND) is monopolised by big organisations: “It’s a closed shop … The government say ‘go for tenders’ [apply to run local services with government money], but it’s difficult to put in a tender with limited resources against big players who put in competitive bids.”

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The Department for Education, which oversees special needs policies, did not respond to requests for a comment. A spokeswoman for the EHRC says: “We have called for government to review England’s code of practice for children with special educational needs and disabilities [guidance issued in 2014] within five years of it being implemented to evaluate whether it is effective – and we are looking at how we can use our legal powers to greater effect to support those who feel discriminated against by the education system.”

But Dheensa warns of “a huge crisis” as young people transition from children’s social services into adult social care where she says cultural support is totally inadequateIf residential care is offered miles away from family and the community, for example, it deprives adults of familiar places of worship and the support networks around it. Says Farah: “We need to educate parents about autism, we need more funding in our communities. We need to build up the confidence of parents and have better relationships between communities and social workers and local authorities”.