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SEN Policy Research Forum Exeter

UK General Election: Can Relationships with Professionals in Mainstream Education Be Improved? Insights from Parent Carers of Children with Learning Disabilities


Can Relationships with Professionals in Mainstream Education Be Improved? Insights from Parent Carers of Children with Learning Disabilities

Emma Foley, BA, MA, MBACP.

 

Introduction

As debates about the inadequacies of SEND provision and funding continue, especially in the wake of a general election, this blog focuses on an important aspect: the relationships between parent carers of children with learning disabilities and professionals in mainstream education. Why are these relationships frequently strained, and what can be done to improve them? By exploring these questions, we can gain valuable insights and build mutual respect, with the potential to enhance collaboration to improve SEND provision.

Background

Research highlights a significant rise in SEND tribunals illustrating the battles parent carers face, and the toll on their mental health and well-being, particularly when tribunals progress to formal hearings that often feel more stressful than receiving their child’s diagnosis.

As part of a qualitative inquiry, I conducted a systematic review of learning disability research from the last thirty years. The findings revealed that parent carers of children with learning disabilities are consistently engaged in conflicts with education professionals, a result further supported by my study:

“It’s always a fight, I’ve fought with so many different scenarios … it’s just constantly a battle … the way that everything runs is really, really poor. …you do have to fight for a lot of things which is sad … but yes, it’s a constant fight for everything … and it shouldn’t be like that.”

“It’s the negativity, the constant negative comments that shouldn’t even be a negative comment because he’s got a disability.”

So why are parent carers of children with learning disabilities so often engaged in battles with education professionals?

Understanding the Struggles

Although my qualitative study included only three participants, it sought deeper meanings, finding that navigating life as a parent carer alongside relationships with education professionals was like putting together pieces of a puzzle. They described a shift in their perception of self and others suddenly finding themselves as part of a minority group in a society, which had once felt inclusive. They experienced a change in the narrative that often left them feeling marginalised, mis-understood, and ‘fearful.’

My study identified a ‘phenomenology of fear’ that directly correlates with the frequent battles. This fear caused by a mistrust of professionals, negatively impacting the mental health and well-being of parent carers. They experienced loneliness, isolation, anger, frustration, anxiety, and doubt, which led to a vicious cycle of negative thinking.

Participants’ Fears

Participants’ fears were identified as:

Despite these fears, they continue to trust the motives of those involved in disability research and remain open to participation, hoping it will benefit their children.

“My only sort of sadness sometimes is that it’s like whether you get listened to, you know, then you do all the hard work and that’s for, you know, multiple people, but it’s whether you then get listened to. Because you’re trying to make a difference and trying to make a change, so I’ve always been open to it [research]. I think it’s a really good thing. It’s just, you know, that part of, I hope that people listen, you know?”

Understanding these fears highlights the need for actionable and practical solutions to support and empower parent carers and foster a more supportive environment within mainstream education.

Improving Communication and Relationships

To address and improve communication with parent carers of children with SEND, mainstream education must acknowledge both their expertise and informational needs. This empowerment can increase collaboration with professionals. One fundamental element identified in the study to eliminate fears and improve relationships is to diminish the labelling of parent carers.

“I am labelled …’the parent from hell’.”

Changing the Narrative

This derogatory language is reminiscent of historical prejudice of the 1950’s, where mothers were blamed for their child’s autism. Fast forward to 2024, and mothers are still viewed negatively, being labelled as ‘problematic’, ‘difficult or challenging’,  ‘inappropriately controlling’, ‘neurotic’, and in the extreme ‘mad’; the mother who makes unreasonable demands on strapped education and health care systems in seeking support for her child. This perception leaves them feeling devalued and judged, making it difficult to improve their children’s lives. The narrative must change.

When relationships with professionals are problematic, it hinders knowledge sharing. Parent carers, as the true experts in their children’s lives, can make professionals feel threatened, leading to a mistrust that forms a phenomenology of fear. This fear, stemming from not feeling listened to and judged, perpetuates a cycle of conflict and mistrust. As a consequence, they conclude that if others were not listening or acting in their child’s best interest then the reverse must be true; they are fighting against them. Armed with this knowledge parent carers perception of the world becomes a place where people can’t always be trusted.

“…they say one thing but do another.”

A deeper internal battle affecting parent carers emotional wellbeing is a fear of making the wrong choice or saying the wrong thing, a fear of not saying enough, or not saying it loudly enough, ultimately a ‘fear of failing to be heard’ when advocating for their child.

“You always question, do you do enough, is that enough?”

“You wanna ask yourself, am I coping, am I not coping?”

Positive Aspects and Solutions

Despite the challenges, parent carers find ways to raise awareness and remain hopeful that research will impact services. The study found that collaboration through co-production and storytelling can give parent carers a voice, breaking down barriers and reducing mistrust. For instance, parent carers can take advisory roles in school boards or participate in ‘life story’ workshops to share their experiences. Open, honest conversations can offer a sense of community and belonging, reducing a sense of marginalisation and the symptoms of loneliness and isolation to support wellbeing. The sharing of stories can be a cathartic experience with therapeutic potential, and offers an opportunity to understand someone’s identity rather than them living with the one imposed on them by society. Professionals need only to listen actively to gain insight, understanding, and mutual respect.

Implementing Change

To effectively improve relationships and communication, the education system can implement several key strategies:

  1. Eliminate negative labels: create a more inclusive and supportive environment dispelling the perception that parent carers are purposefully being difficult when making demands on strapped education and health care systems in seeking support for their child.
  1. Active Listening and Empathy: actively listen to parent carers, showing empathy and understanding toward their experiences and concerns. This can help build trust and reduce the fear that parent carers often feel.
  2. Inclusive Policies: develop policies that promote inclusivity and actively involve parent carers in decision-making processes, providing training for staff on how to engage with and support families effectively.
  3. Regular Communication: establish regular, open lines of communication between schools and parent carers to help address issues before they escalate through meetings, newsletters, and dedicated points of contact within the school.
  4. Co-production and Collaboration: encourage collaborative projects where parent carers and professionals work together to develop and implement strategies that benefit children with SEND. This approach can help ensure that the needs of the children are met more effectively.
  5. Recognition of Expertise: Acknowledge and value the expertise that parent carers bring to the table. Their intimate knowledge of their children’s needs and strengths can provide invaluable insights that enhance educational practices.

Conclusion

In conclusion, this blog aimed to shed light on the persistent challenges faced by parent carers of children with learning disabilities in their interactions with education professionals. Through my qualitative enquiry, it became evident that these relationships are often strained, leading to feelings of mistrust, isolation, and frustration among parent carers. The concept of a ‘phenomenology of fear’ emerged, highlighting the deep-seated anxieties parent carers experience when advocating for their children’s needs. These fears can be addressed by recognising and valuing their expertise, eliminating negative labels, fostering open communication, and promoting collaborative approaches to create a more inclusive and supportive environment.

Final thought

With a deeper understanding of the challenges that parent carers face in interactions with professionals in mainstream education, how is it possible to collectively ensure that their voices are heard so that the fostering of these relationships contribute to more effective use of SEND provision?

 

Author Biography

Emma Foley is an alumna of the University of South Wales, having recently completed a Masters by Research. She spent many years supporting teaching and learning in schools, working with children with SEND and providing emotional literacy support. Now a qualified psychotherapist in private practice she specialises in supporting clients with learning disabilities. Passionate about promoting diversity and advocating for mental health across all stages of life, she links academic knowledge with practical therapeutic interventions in her clinical practice. She also has a particular interest in supporting parent carers of individuals with learning disabilities, drawing on both professional expertise and personal experience as a sibling to an adult with SEND.

https://www.linkedin.com/in/emma-foley-840032172/

www.talkingheadscounselling.co.uk




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