I caught the second half of an ITV documentary last night about the cost of ‘invisible disabilities’ and it was fascinating but depressing at the same time. Adults who suddenly found themselves disabled, due to accidents or illness primarily, were having to apply for disability benefits for the first time as they were no longer able to work. They were talking about how depressing the application form for Personal Independence Payments (PIP) is as it focuses on all areas of life asking how much help you need and highlights how much they are no longer able to do for themselves. These were people who had been able bodied but no longer were and they had the capacity to complete the paperwork themselves, they felt humiliated by the process. Once completed, the form is allocated points to asses the level of disability and one lady , having gone through the ‘humiliation’ of completing the form, was then mortified to learn that she was not disabled enough to qualify!
When Joshua was born, both my husband and I were working full time, and so we had no experience of the benefits system. It was the Health Visitor who told me to apply for Disability Living Allowance (DLA) for Joshua. I told her that we were financially secure and did not need the money but she insisted that it was Joshua’s right and that I should make the application. She warned me that the application form was grim to complete and advised me to sit, with a glass of wine, complete it thinking of his worst ever day, seal it up in an envelope and never think about it again. Minus the glass of wine, that it what I did and it went against the grain; the emphasis of the form is all about what my son could not do for himself and my outlook has always been to celebrate the positives and achievements, but there was no room for that outlook on this form. We were granted DLA immediately and it went into his savings account to buy big items, like off-road wheelchairs over the years.
When Joshua turned 16, his DLA stopped and instead we had to complete an even more daunting form to apply for PIP in its place. The Department of Work & Pensions (DWP) insisted on writing to Joshua in his own name and were keen to speak to him on the telephone too and were suspicious when I explained that he could not read or talk on the telephone, but that I was acting as his Deputy. They insisted on meeting us both at school one morning to prove that Joshua did not have the capacity, as I had described it and that assessment process took one minute in school reception. I resented the assumption that I was making this up just to squeeze money out of DWP, but I guess fraud must be widespread.
The PIP form divides up his life into a wide range of categories, such as feeding, sleeping, hygiene, road safety etc, asking in detail for how many hours a day Joshua needs help with each aspect of his life. Like DLA, this is a sobering form to complete as it is lengthy and at the end of it, you are left feeling that Joshua has no independent value at all, despite striving all of his life to give him as much of it as possible. Once again, Joshua was allocated points for each area where he needs assistance and one Council employee who saw his assessment told my husband that he had never seen anyone with as many points as Joshua had! Consequently we were granted PIP, both the independent living and the mobility component – we have a Motability car now using the mobility part of the benefit to fund an estate car with a big enough boot for his wheelchair.
I was advised at school that as Joshua would never have the capacity to work, he should also be in receipt of Employment Support Allowance (ESA) which required written statements from school and his GP to state that he did not have the capacity for employment. Joshua clearly qualified for this benefit too, which helpfully gives him his monthly prescriptions free.
Since I retired last Autumn, I was able to apply for Carers Allowance too, which gives me £70 each week because I care for Joshua more than 35 hours per week. During the pandemic I was caring for him 24/7, but now we have daycare three days a week, there are some breaks in my caring role, but even so, it way exceeds the minimum of 35 hours. As an hourly rate of pay, Carers Allowance is an insult but I choose to consider to be a contribution towards my caring role rather than a salary.
My outlook towards benefits has changed over the years : as I said, we are financially secure and so do not rely upon the benefits, but I now I agree that they are something that Joshua is entitled to and so I am willing to fight to ensure that he receives everything that he deserves. We tend to use his benefits to buy ‘luxuries’ for him that we might otherwise think twice about; we are on the look out for a bike adaptation that would enable him to safely and comfortably come cycling with us. With years of practice, I am now able to complete the renewal paperwork without emotion when it comes, but I could relate to the humiliated disabled people that I saw on last night’s documentary. Thankfully Joshua does not have capacity to understand what I have written about him, or else he might consider me to be disloyal and pessimistic about his abilities, but so long as he has the funds to buy him pub lunches and pay for the dodgems on his holidays, that is all he cares about really.