Meet 'the Therapist'
Amaze is a registered charity active in the Brighton and Hove area. Their mission is to inform, support and empower parents of children with disabilities and complex needs. The organisation is parent-led and works with parent carers of children with any complex need or disability aged 0—19 years. It runs a number of services and projects, including a DLA project, which tackles poverty and social exclusion. This project aims to maximise take-up of disability-related benefits amongst families with disabled children in Brighton and Hove, by providing a trained volunteer to support parent carers to complete successful DLA applications. This is particularly important since many of the approximately 7000 children in Brighton and Hove diagnosed as having complex needs live in the poorest parts of the city, and because over 50 % of disabled children live on the margins of poverty.
Typically, trained volunteers visit parents for between three hours and a whole day to work through the completion of the form. The project was set up to aid the many parents who were unsuccessful in their claims for child DLA support, not because their range of experiences didn’t merit it, but because they did not know how to complete the 41-page form in such a way that maximised their chances of a successful claim. In 2005 Banks and Lawrence suggested that 97 % of people found it a difficult form to complete and over 40 % of claims are incorrectly rejected due to the complexity of the form.10
So essentially the DLA project helps people to fill in a form. And this seemingly minor intervention, helps people to feel better. This ‘therapist’ was helping parents to unpick and disentangle their multiple challenges and overcome the various elements of their constellated disadvantage— not all, not by a long way, but some, and in so doing was making a huge difference to their daily lives.
And we just, we just went through it and I, I, well then I began to realize well actually, he teased it all out. He then gave it language, he was then able to link the things that I couldn’t do, he could make links that I just couldn’t see (Kathy, parent)
So what was it that our ‘therapist’ actually did that prompted every parent to locate it as having had not just a crucial impact on their mental distress, but for many, the most significant impact on their mental distress? Firstly, as we said, it helped parents to complete the DLA form successfully. All of the parents spoken to received an award after help from volunteers at the DLA project. Parents spoke of the importance of having someone else see through their ‘rose tinted glasses’ to provide a more accurate account of their carer experiences. These glasses are essential to help parents focus on the positive side of their child’s disability and to highlight their child’s strengths, and are a vital tool for getting through each day. They are, however, a complete hindrance when having to fill in a lengthy form that requires you to make a clear case for needing help and financial assistance.
Parents unanimously discussed the way in which the resulting award had contributed significantly to both their financial and mental health. Every parent suggested that their award had led to significant knock-on effects in terms of the well-being of their child and the rest of the family. For some, the award helped with the everyday essentials of living, providing reassurance that they would be able to meet the daily challenges that they faced. For others, it enabled them to reduce the unbearably long working hours that were necessary to support the family’s extra costs, and which had put a considerable strain on their relationships. For some, the effect was to provide the financial opportunity to reduce the debilitating isolation that they had experienced for so long, by giving them the means to go for a coffee or pay for appropriate childcare and transport.