Challenges Faced by Ethnic Minority Parents in Navigating the SEND System

In the second week of November 2022,  ESDEG organised a focus group at the Viking Community Centre, Northolt for ethnic minority parents of children with SEND needs. The purpose was to listen to the experiences of these parents in accessing services, obtaining diagnosis and understanding the referral process to Carmelita House in Ealing where NHS, social services and LA’s SEND team are based. For a Saturday afternoon it was a pretty busy meeting attended by ten mothers belonging to Pakistani, East European and Somali ethnic backgrounds.

Accessing the SEND system is no picnic. Google search throws up numerous reports and articles highlighting the roadblocks that parents face while trying to secure the help that their children deserve. According to the ‘Right Support, Right Place, Right Time’ SEND Green Paper report published in March 2022  “navigating the SEND system and alternative provision (AP) is not a positive experience for children, young people and their families.”

The report further elaborates “We have heard that for too many families their experience of the SEND system is bureaucratic and adversarial, rather than collaborative. Too many parents and carers do not feel confident that local mainstream schools can meet their child’s needs. Parents and carers are subsequently frustrated with the difficulties and delays they face in securing support for their child. The system relies on families engaging with multiple services and assessments, making it difficult to navigate, especially for the families of children and young people with the most complex needs. Some families with disabled children tell us they are put off seeking support from children’s social care because of fear they will be blamed for challenges their children face and treated as a safeguarding concern rather than receive the support they need. The difficulty faced in navigating children’s social care assessments, and the lack of consistency in the offer among local authorities, can mean that support is often only provided once families reach crisis point.” (Page 10)

For parents  belonging to ethnic minority backgrounds this struggle multiplies because of  their lack of English language skill, cultural differences and lack of knowledge about how the system works. Out of the ten mothers who attended the meeting only two have grown up in the UK and are educated in the English education system. The rest have immigrated to the UK in the last decade, some have very basic English language skills, are not assimilated in the mainstream and have no previous knowledge of the British education system, let alone how to navigate the SEND jungle.

For many of  these parents the realisation that their children have special needs is often a shock. A young mother reported that she received a handwritten note from her child’s nursery stating that the child may have SEND needs and a couple of bullet points on the child’s behavioural issues. This was the first time the mother got to know that her child was not keeping up with the rest of her cohort group and needed extra help. The school suggested that she pull her child out and referred her to ESDEG. The panicked mother spent the next few weeks trying to figure out what her child’s rights were in such a situation. It was with ESDEG’s help that a referral was submitted to the Carmelita House and the process of seeking help was initiated.

Another mother talked about how she approached her child’s school several times stating that the child was neither happy at school nor learning much. The teachers kept dismissing her concerns until an incident broke out and the parents were summoned. At the meeting the school suggested that the child has behavioural issues and was given a warning. The mother felt this was unfair since she had been flagging the issue but no one had paid attention. She spent the next months trying to figure out what steps she could take. In the meantime the child started having more incidents at school  till it reached a crisis point and ESDEG intervened and guided the mother on how to get the right help for her child.

Another mother joined in and shared how she had been fighting to get a referral since her child was in nursery. By the time the child got the help he was already ten years old and the mother felt that an early intervention would have helped her child more. Several mothers added that  they have had similar experiences. Some of them felt ignored by the schools, while others felt that using their lack of English as an excuse schools, health services and even translators try to impose their decisions on them. One mother shared her experiences with the translator who was not at all cooperative. The mother did not feel confident in the translator’s ability to represent her, hence she had to ask for another translator. In this process three months were wasted and diagnosis for her child took longer.

One mother pointed out that after the struggle to get the referral to the Carmelita House, when the process  starts that is also fraught with roadblocks. She has recently received an email about an appointment with a doctor at the Carmelita House but it does not specify the purpose of the appointment, what to expect, or any other detail. Hence she cannot prepare for this interview and feels out of control. Another mother added that when her child got the diagnosis all it stated was that her child was Autistic, there were no other details, no plan, the next steps were not mentioned. So she had to go home and start researching Autism and how to seek help for her child. She added that trying to cope with her emotions while figuring out the best help for her child was a very lonely and incredibly hard process. She felt isolated and it affected her mental health.

Only one mother had positive things to report about the support she had received for her two children with special needs. She stated that there was early intervention in both the cases, the health professionals and the school were supportive and she is happy with the services her children receive. But she also added that it helped that she was fluent in English, this gave her the confidence to communicate with the professionals dealing with her children, ask questions, keep up regular email communication, and chat with the service staff to find information. She attended various workshops to collect information about the options available to her children and pieced together various bits to get a holistic idea. She agreed that her local upbringing and knowledge of how the system and the people within it function have been a huge help. She added that her mother who is not very fluent in English, nor very confident about dealing with the professionals would have been lost.

Bajwa-Patel, Menu in her aptly  titled  article ‘Stories of tiger mothers struggling to survive in the SEND jungle’ (2015) says that parents facing school placement dilemmas described their situations in terms of conflict. Severe lack of funding has created an adversarial situation where parents, schools and local authorities are pitted against one another.  Post Covid the situation has further deteriorated, some mother’s complained that the waiting list in Carmelita House is about two years long and due to the slow process their children often lose out on support and help. This is really unfortunate since all three – the parents, the schools and the local authorities should be working together to achieve what is best for the children. In the next post we will talk about the four common SEND misconceptions that parents have and what  the Children and Families Act 2014 states for each of those.