The Importance of the Amaze DLA Therapist: Validation, Finance and Mental Well-being

What was also important was the way in which this ‘therapist’ worked. Parents were able to provide an account of their child that, while providing the necessary information on the difficulties and deficits experienced by the family, also allowed parents to balance these with positive accounts of strength and the joy of parenting their child. This ‘therapist’ could skilfully extract the relevant information without the parent being forced into a hideous negative information extraction process, which left him or her feeling despair.

For most of these families, deeply challenging and exhausting care regimes have simply become part of their everyday lives and as such, have come to be constituted as ‘normal’ by the parents. This can be a problem when completing the form, since such an interpretation of their activities would impact negatively on the likelihood of their receiving an award. Through carefully teasing out and helping parents to reflect on the nature of what is and is not considered ‘normal’, our ‘therapist’ was able to help parents to understand that what had become normal for them may not be understood as ‘normal’ in terms of typical parenting practices. In addition, our ‘therapist’ was able to help provide parents with the language they needed when they struggled to articulate the nature of their difficulties.

Many parents talked about the importance of their award in terms of validating their understanding of the child’s difficulties, when very often they had felt minimised or pathologised by other agencies. For a number of parents, their suffering, trauma and difficulties were understood and upheld by their receipt of the award. It confirmed the sense that their child had complex needs and it endorsed their approach as parents in the various battles to help their child receive the support that he or she needed. Moreover, a successful claim acknowledged the extra and previously invisible work they had been doing, often in the face of accusations and suggestions of overbearing and/or poor parental practice. A successful award had genuine symbolic significance above and beyond the financial reward.

Many parents of children with complex needs benefit from extra support to cope with their difficulties,11 and the strengthening of the financial and social resources of parents can be incredibly important. Through our ‘therapist’, parents were also able to receive information on, and access to, a range of relevant activities, services, support groups and financial offers that had a significant impact on their lives. For some it opened up a wealth of opportunities that they had been unaware of. Many parents initially contacted our ‘therapist’ for help filling in the form, but ended up receiving substantial support and advocacy in the problematic experiences that they had been having with their child’s school and/or medical professionals. Indeed some schools were thought to dislike our ‘therapist’ because they failed to understand why these parents’ voices should be heard, advocated for and supported in organisational decision-making. For some parents, the extra information and understanding they had gained had increased their confidence such that they now felt able to challenge some of the problematic practices that had made their lives so difficult. For many parents their contact with the DLA service had helped to open up a range of activities that they and their children could be part of. For parents who had felt excluded, the benefit of this should not be underestimated.7

I can’t really, to be honest, remember what it was like, I’ve always remembered living on a shoestring, we always have. And now because of the DLA and all the other stuff I get, I don’t have to stress about, like I do about my phone bill and stuff like that, I still stress about bills, it’s not as stressful (Lucy, parent)

So this ‘therapist’ does a whole range of things. It supports people in real, structurally mediated financial strain and works with them to try to alleviate it. It does this by helping them to complete a form where the complexity of its technical challenge is matched only by the brutality of its emotional challenge. It guides people through it with patience and care and saves them from demonising their child along the way. It supports people who are isolated, lonely and excluded and finds ways for them to build links with other people who understand and empathise and share their experiences. It welcomes people who have been marginalised, condescended and excluded from the care of their child and listens to them, supports them and validates their experiences. It appreciates that these parents have valuable expertise essential to the well-being of their children and it takes them seriously.

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