19/02/2017 12:10 GMT | Updated 20/02/2018 05:12 GMT

As An Unpaid Carer For My Disabled Husband, I Fear 'Just Managing' Is A Cliff Edge From Poverty


In a time of intensifying global uncertainty, it seems more important than ever that we are able to achieve financial security for our loved ones.

And yet, this week's Joseph Rowntree Foundation findings, highlight in no uncertain terms that more and more people in the UK are unable to earn enough to achieve a socially acceptable standard of living.

For 19 million people, poverty is an ever-present shadow. "Just about managing" can easily become "no longer coping" - all it takes is an unexpected bill or small financial shock to create a family crisis.

It's almost a year since I left a well-paid job to care full time for my disabled husband. Almost overnight, our income dropped by more than half. In my own right, my income is now made up of £63.10 per week in Carers' Allowance, and more recently, a very part-time job of just a few hours per month.

Whilst we are coping financially, this doesn't stop us worrying about money. Not ever. Our joint income will not rise with the cost of living. Any increase will not match the percentage rise in Council Tax in April. Our substantial utility bills - over £2000 each year - continue to increase and we do not have the option of turning off the heating. My husband's disabilities mean that he cannot control his temperature.

Paying for crucial equipment such as a person lift made a significant dent in our savings and our financial resilience. Last year, the transfer from DLA to PIP (ultimately successful but incredibly stressful) left us in fear of losing our adapted car and a significant proportion of our income.

We know and appreciate that we are luckier than most, but as is the case for many of my friends, the additional costs arising from disability are significant and hidden. They do not feature in the Minimum Income Standard analysis.

Think for a second about what this means. On top of the items we need to achieve an acceptable standard of living, imagine you suddenly have to find money to cover a 600% increase (yes, 600%) in social care charges. This is the shock being processed by families in the south of Scotland.

Imagine having to use your own DLA or Carers Allowance to pay for travel and care costs to allow your disabled child or spouse to take part in activities, which other families take for granted.

These services and items are not "nice to haves"; they are utterly essential for day-to-day life. Buying food for special diets; paying for rubber gloves and pads; having your washing machine on constantly to deal with soiled clothes - these additional costs stretch already taut family budgets to breaking point.

Energy price hikes announced last week might well be the final straw. For so many of our fellow citizens, the unpaid care penalty and the additional costs associated with disability combine to create a more precarious, "cliff edge" existence.

For the sake of the many families I know, I hope that this crucial and heart-breaking report from JRF shocks politicians into action. No government - national or local - can claim the moral or policy high ground. Inaction is not an option - yet for those families struggling with the costs described above, hope is in short supply.

I wish I could be more positive.