{"id":16442,"date":"2022-11-29T12:04:35","date_gmt":"2022-11-29T12:04:35","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=16442"},"modified":"2023-04-20T09:50:17","modified_gmt":"2023-04-20T08:50:17","slug":"disabled-people-like-me-who-cant-work-more-hours-are-being-left-behind","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/disabled-people-like-me-who-cant-work-more-hours-are-being-left-behind\/","title":{"rendered":"Disabled people like me who can’t work more hours are being left behind"},"content":{"rendered":"\n

Emma works and volunteers for Sense in Bristol, running activities for disabled and non-disabled children. Emma is 34 and is deafblind<\/a>, as a result of congenital rubella syndrome<\/a>. She also has epilepsy. She lives with her wife Natalie, who is a support worker and also Emma\u2019s carer. They both work part-time, and rely on benefits to make ends meet. <\/p>\n\n\n\n

Emma told us all about how the cost of living crisis is impacting her and her partner.<\/p>\n\n\n\n

\"A<\/figure>\n\n\n\n

All the costs going up are worrying me. Rent and bills are going up constantly. It\u2019s worrying and challenging.<\/p>\n\n\n\n

I\u2019m having to be careful what I\u2019m spending, and rely on others to help me through the month. I\u2019ve been borrowing money from my mum. <\/p>\n\n\n\n

We\u2019ve had to make choices and sacrifices. It\u2019s hard to get out of the cycle of living week-by-week. It\u2019s becoming a major issue and needs to be addressed.<\/p>\n\n\n\n

I\u2019d work more hours if I could, but it\u2019s not an option<\/strong><\/h2>\n\n\n\n

I work four hours a week for Sense, and I receive Personal Independence Payment (PIP) and Employment and Support Allowance (ESA)<\/a>. This tops up my wages.<\/p>\n\n\n\n

If I could work more I would, but I’m not in a situation where I can, due to my health. I can\u2019t physically work more. <\/p>\n\n\n\n

I get support from Access to Work, which helps me do the hours I can. I have to get taxis to and from work, and I have a support worker with me during my shift.<\/p>\n\n\n\n

My wife Natalie has also gone down to part-time hours now, because she\u2019s also a carer for me. She has to help me with stuff if I\u2019m struggling, for example if I\u2019ve had a bad day with seizures. For her mental health, she had to cut her working hours.<\/p>\n\n\n\n

We face extra costs because of disability<\/strong><\/h2>\n\n\n\n

The rise in energy bills is the cost that\u2019s affected us the most. It\u2019s taken a massive leap. It\u2019s hard because we\u2019ve got medical equipment that has to keep running through the day and night.<\/p>\n\n\n\n

“We can\u2019t go out and about and do things like we used to. We haven\u2019t had a holiday this year. We just can\u2019t afford it.”<\/p><\/blockquote><\/figure>\n\n\n\n

I have an emergency buzzer alarm that I have to wear when my wife is out, so that if I fell or had a seizure, it would ring an ambulance. Also, under my pillow at night, I have a fire alarm that would vibrate if there was a fire, because without my hearing aid in when I\u2019m asleep, I wouldn\u2019t hear the fire alarm.<\/p>\n\n\n\n

Natalie also has a sleep apnea machine, which has to be on during the night. She needs that, or she could die in her sleep. <\/p>\n\n\n\n

We\u2019re struggling to put the heating on. This has a big impact on me, because I have arthritis. I feel physical pain when I\u2019m cold. <\/p>\n\n\n\n

We\u2019re lucky to have a Motability car, which Natalie is able to use to go to work. But the cost of petrol has gone up so much that we can\u2019t really use it to go anywhere else. <\/p>\n\n\n\n

We can\u2019t go out and about and do things like we used to. We haven\u2019t had a holiday this year. We just can\u2019t afford it. <\/p>\n\n\n\n

\"A<\/figure>\n\n\n\n

We need more support, financially and emotionally<\/strong><\/h2>\n\n\n\n

The sad thing is a lot of people assume that people who have disabilities get a lot of money. They think we don\u2019t want to work, we just sit back and claim off the government, and we\u2019re made of money. But it doesn\u2019t work like that. <\/p>\n\n\n\n

We still have bills to pay, we still pay full rent and council tax, like everyone else. That takes pretty much all of our wages and benefits.<\/p>\n\n\n\n

Everyone\u2019s situation is different. Please don\u2019t judge. When we ask for support, sometimes it\u2019s not even money we need \u2013 it\u2019s understanding. Disabled people are really struggling. <\/p>\n\n\n\n

The support we have received so far isn\u2019t enough to get us through this crisis. I got a \u00a3150 cost of living payment<\/a> earlier this year, because I receive disability benefits.<\/p>\n\n\n\n

I thought that I was going to get the \u00a3650 payment too, because I receive ESA, but it turned out I wasn\u2019t entitled to it. We were waiting on that money, only to realise we couldn\u2019t get it. The system is so confusing, that\u2019s part of the problem. <\/p>\n\n\n\n

For me personally, the one-off \u00a3150 payment was gone in a day. The bills swallowed it up. It\u2019s literally a very short-term, 24-hour situation. We need long-term plans, and these need to help everyone.<\/p>\n\n\n\n

We\u2019re still people, we have a right to be able to live an independent life. A lot of people, like me, can\u2019t physically work full time. If we can\u2019t keep up with putting food on the table, it\u2019s really not fair.<\/p>\n\n\n\n

Money is not the answer to everything, but at the moment it\u2019s something quite significant. <\/p>\n\n\n\n

The government really needs to listen to our stories. They need to really, really listen to how this is affecting us, not just financially, but physically and mentally, too.
<\/p>\n","protected":false},"excerpt":{"rendered":"

“A lot of people, like me, can\u2019t physically work full time. If we can\u2019t keep up with putting food on the table, it\u2019s really not fair.”<\/p>\n","protected":false},"author":14,"featured_media":16443,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[84],"class_list":["post-16442","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","display_author-emma"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/16442","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=16442"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/16442\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/16443"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=16442"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=16442"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=16442"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=16442"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}