The Cost of Disability

I heard the end of a fascinating discussion programme on Radio 4 yesterday on my drive to pick Joshua up from daycare. It made both thought provoking and depressing listening. It was the Money Programme but this episode was focused on the poverty and desperation that some disabled families were suffering, particularly in the light of the cost of living crisis:

As I turned it on, a single mother with a terminally-ill child was talking about her heartbreaking choices as she was trying to make her daughter’s precious remaining years memorable, but that if she spent her money on petrol for a day out together, it meant going into debt or not being able to afford her rising gas bill. Then a father was interviewed and his daughter has spina bifida and he was her full time carer. She has life saving equipment that is plugged into the power all of the time and so he had turned their central heating off to make a saving ; as a result, he was warming her cold feet up before bed with a hairdryer! He was no longer using the electrical hoists to move her around the house, but he was lifting her manually to save on the electricity bill. I wept to hear of their suffering and the terrible quandries that they find themselves in.

Now our family is very fortunate, my husband and I both worked in well paid jobs for over 30 years and so we are lucky enough to have had savings so have been able to afford to take early retirement. I can recall my first social worker telling me off when I complained that it was practical help that I needed from the council and not financial assistance. He explained that disability was usually closely linked to poverty and that the main part of his role was to find funding for his families. Often the care needs of the family mean that the parents are not both able to work as they need to transport their child to and from hospital appointments or school and few jobs offer the flexibility to cover the long and frequent school holidays. In addition, the pressure of having a child with disabilities destroys many marriages and so often these are single parent families struggling to balance the books.

This radio discussion went on to talk about the cost of disability and how having a disabled person in the family had serious cost implications. Research from Scope showed that on average, a family with a disabled child would have to pay £581 a month to have the same standard of living as a family with a non-disabled child. I found this finding shocking but they then went on to say that for 1 in 5 of these families, these extra costs come to more than £1000 a month more. Given these statistics, it makes the Government’s one off bonus to all recipients of PIP and DLA ( disability benefits) of £150 which has recently been announced, sound rather paltry and definitely insufficient.

So I started to ponder as I drove what the additional costs that we have incurred might be : Certainly our electricity bill will be higher than most due to the constant washing of clothes and bedding and the fact that we have a DVD player playing constantly when Joshua is home, often with music blasting out in another room. I will find out how much we rely on electricity to entertain Joshua today as our power will be switched off between 9am and 4pm today for planned maintenance, but I suspect we will be having a day out as I will not be able to meet his repeated demands for Nemo or Dido as he points hopefully at the blank screen of the TV.

Over the years we have bought equipment for Joshua, such as an off road wheelchair so that he can access country dog walks with us, and an adapted bicycle that attaches to the back of my husband’s bike so that he could enjoy bike rides with us. Both of these pieces of wheeled equipment cost several thousand pounds to buy new, and the trike was much more expensive than a standard child’s bike. We certainly get our money’s worth from the wheelchair, it came into its own in lockdown particularly, but we walked into town with it on Tuesday and Joshua looks so comfortable, it is as though he is travelling in an armchair. He has outgrown the Tiger Trike now and is too heavy to ride it safely, so we have agreed to donate it to the park in our nearest city ,where they offer accessible bikes for disabled children to ride , and Joshua has benefitted from these bikes both with school and respite in the past, so we would rather donate Joshua’s bike to them, rather than trying to sell it.

We looked at lightweight wheelchairs yesterday to have something that is easy to maneouvre and store, ready for our rail trip to Scotland next month. So we went to a mobility shop after dropping Joshua off at daycare. I had looked online and was expecting them to cost around £200, but the most suitable one for our needs cost double that. So disability equipment seems to be priced at a premium, even though it is not something that anyone wants to buy really, we would all prefer not to need a wheelchair in an ideal world. But given that they are necessary, you would like to think that they would be subsidised in someway, rather than being charged at a premium.

There are certainly many families with a disabled child who were already struggling to make ends meet, before the increases in fuel prices, and so it is hard to see how they are going to manage this Autumn/Winter as more price hikes are threatened. The radio programme ending chillingly by adding that worrying about household bills was impacting parents mental health and that the Government were working on a suicide prevention scheme, as they expect the burden of debt to be too much for many parents. We cannot allow these families whose lives are challenging enough in meeting the care needs of their disabled children, to suffer like this and certainly £150 bonus is simply a sticking plaster for a much much more serious problem.

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