{"id":9840,"date":"2022-06-22T09:29:04","date_gmt":"2022-06-22T08:29:04","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=9840"},"modified":"2023-04-20T09:51:44","modified_gmt":"2023-04-20T08:51:44","slug":"disabled-children-families-debt-cost-of-living","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/disabled-children-families-debt-cost-of-living\/","title":{"rendered":"We were already underwater in debt \u2013 now, we’re drowning"},"content":{"rendered":"\n

Rhia is 13 years old and lives in Bristol. Rhia is deafblind and has a life-limiting metabolic condition called PDH. Rhia\u2019s father, Nick, shares how the family\u2019s debt has been getting worse as a result of the cost of living crisis<\/a><\/strong>.<\/p>\n\n\n\n

\"Nick<\/figure>\n\n\n\n

Our family was about \u00a330,000 in debt before the cost of living even started to go up. This was mainly from a loan we had to take out to convert Rhia\u2019s room to be accessible. <\/p>\n\n\n\n

The way things are going, the rising prices are now going to push us even further into debt.  <\/p>\n\n\n\n

Families with disabled children face extra costs and challenges<\/strong><\/h2>\n\n\n\n

Our joint income fell by 75% in the first years of supporting Rhia. This was because she\u2019d be in hospital, and we\u2019d need time off. Having a disabled child means you get fired, or you lose contracts because you\u2019re not available at times people need. You get made redundant. It\u2019s just the way it happens. <\/p>\n\n\n\n

You borrow to keep going, and hope for better days. We\u2019ve been hoping for better days for a decade, but Rhia is life-limited, so we know we don\u2019t have long. For us, it\u2019s about quality of life. We want to spend quality days with her, because we know our time is limited.  <\/p>\n\n\n\n

“Benefits haven\u2019t kept up with the cost of living. Our support has basically been slashed in real terms over the last decade.”<\/p><\/blockquote><\/figure>\n\n\n\n

Because I work, we don\u2019t get many benefits. There\u2019s child benefit, disability living allowance (DLA) and carers\u2019 allowance. But benefits haven\u2019t kept up with the cost of living. Our support has basically been slashed in real terms over the last decade. <\/p>\n\n\n\n

As a family with a disabled child, we face a lot of additional costs. In the current crisis, the rise in energy bills has affected us the most. Rhia\u2019s condition means she is double incontinent, so we have to do several washes a day, which takes up energy and costs money.  <\/p>\n\n\n\n

Rhia has to use a ventilator and nebuliser to help her breathe. Both of these cost money to keep running, and they have to run through the night. It\u2019s the same as having a washing machine on all night. <\/p>\n\n\n\n

We also have night time carers for Rhia, so we have to keep the lights and heating on for carers too.<\/p>\n\n\n\n

We\u2019ll have to sell our house to pay our debts<\/strong><\/h2>\n\n\n\n

“I\u2019d like to see increased, targeted support from the Government specifically for disabled children and their families.”<\/p><\/blockquote><\/figure>\n\n\n\n

We\u2019re cutting costs everywhere we can, but we already live pretty frugally. We\u2019ve cut back on food. Finding holiday accommodation that is disabled-friendly was really expensive pre-pandemic, and now it\u2019s even worse. So we struggle to go on holiday. <\/p>\n\n\n\n

There\u2019s not much else we can cut back on. At the moment, borrowing more money is the way we can keep eating. But our debt is continuing to build.  <\/p>\n\n\n\n

Right now, we\u2019re looking at selling our house to pay off our debt, because we can\u2019t rely on financial support in the coming years. <\/p>\n\n\n\n

I constantly worry about our finances but my worries pale into insignificance when the alternative is your child dying. We just don\u2019t have a choice. <\/p>\n\n\n\n

Families like ours need targeted support from the Government<\/strong><\/h2>\n\n\n\n

The financial support announced by the Government in May was great, but it\u2019s tiny compared to the thousands of pounds in energy costs we\u2019re facing on top of the debt we\u2019re already in.   <\/p>\n\n\n\n

Disabled people and their families were disregarded and not supported during the pandemic. This situation is exactly the same. The effect of the crisis on disabled people and their families just hasn’t been considered.<\/p>\n\n\n\n

The current system and situation is not supporting the most vulnerable in our society. There\u2019s not enough people, carers or funding to support those who need it most. <\/p>\n\n\n\n

I\u2019d like to see increased, targeted support from the Government specifically for disabled children and their families. These are the people with higher needs.   <\/p>\n\n\n\n

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Demand more support for disabled people<\/strong><\/h2>\n\n\n\n

During the cost of living crisis, we\u2019re calling on the Government for:<\/p>\n\n\n\n