My adult daughter has multiple, complex needs relating to illness, sensory impairment and cognitive understanding. She will never live independently and is reliant on loved ones for basic needs and daily functioning.
A letter arrived informing that her DLA (Disability Living Allowance) would be stopping and therefore a claim for PIP (Personal Independence Payment) would need to be submitted. This immediately instilled feelings of dread. Having gone through similar processes previously I had an evidence base for not only the challenges of the process but the emotional strain and impact on myself and my daughter.
This coincided with her annual report from her oncology department plopping through the letterbox. While this proved useful as evidence, to say it is not an easy read, doesn’t come close. The report not only lists her three episodes of cancer and subsequent treatment but also categorises every other condition and impairment she lives with. There is nothing remarkable or surprising in these reports and they have remained unchanged for several years. The difficulty, as a parent is seeing on paper a litany of illness and disabling conditions. When living alongside someone with chronic and enduring conditions, there is a desensitising to it. As a parent there is a propensity to focus on the ‘good.’ The ‘good’ being she is alive and a valuable, joyful part of our lives.
Many people complete similar benefit applications for elderly loved ones or partners’ but it is completely counter intuitive to engage in this process for your child, irrespective of their age.
For many years I did not access benefit payments, despite working and supporting others in the social sector. I held a misguided value or belief that my daughter was solely my financial responsibility. Growing up working class in Yorkshire, the emphasis being on ‘working,’ pride prevents people asking for “handouts” even when the option of earning money through ‘honest, hard graft’ is taken away.
I had also grown up with my mum as a single parent, following the premature death of my dad in an accident, who was uninsured and without a pension. My mum was a self employed, burler and mender throughout the 70’s and 80’s, the textile industry was on the wane, resulting in a feast or famine existence, mostly famine. She held a strong work ethic and often had other jobs to supplement her income. I have a vivid recollection of us going to ‘the social’ and the man telling her to sell her house. I remember my mum grabbing my hand, shouting, “Where do you suggest we live? A tent?” She hauled me out of the building, I didn’t feel I could voice my discomfort as there were tears streaming down her face.
I survived the initial PIP phone call, without tears, I was shaking but was able to remain calm and polite throughout, which was a small miracle given the indifference, hostility and apparent irritation from the person on the other end. In a sales environment this conduct would be flagged as a training issue. Complaining is an option but wrongly or rightly, the inner voice tells you that this may have a detrimental impact on your claim. I was less measured while completing the form, tears of indignation were running freely, I thank the heavens for friends bearing chocolate and comforting words.
The relief on posting the form bordered on elation. This has now been replaced by trepidation of the post arriving and the possibility of my daughter being subjected to a medical interview. Previous experiences resulted in distress not only on the day but for a prolonged period after.
Unfortunately, the people in dire need of these payments are being subjected to multiple, stressful hoop jumping. It is difficult to not consider that this could be a deliberate attempt to reduce the amount of claims. It is no surprise that people give up and don’t pursue claims that they are entitled to. I feel for people who do not have a loved one or an advocate to support and negotiate the maze that is the benefits system. If I were in a financially secure position, I would certainly swerve it.
My daughter has defied life shortening prognoses and is without doubt, ‘a marvel of modern medicine.’ The detailed report from specialist clinicians who have known her since childhood ought to be enough. The fact that she is unable to comprehend a claim form, let alone complete it, should be enough. It should be enough that she doesn’t have the cognitive ability to comprehend the meaning of “independent.”
I understand the need for procedures, systems and rules but not the disregard of individuals, their uniqueness and the absence of a dignified, respectful approach.
