{"id":20899,"date":"2023-02-15T09:35:23","date_gmt":"2023-02-15T09:35:23","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=20899"},"modified":"2023-04-20T09:48:52","modified_gmt":"2023-04-20T08:48:52","slug":"familes-with-disabled-children-cost-of-living","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/familes-with-disabled-children-cost-of-living\/","title":{"rendered":"When something is labelled as being for disabled children, the price doubles"},"content":{"rendered":"\n

Lowri lives in Hampshire with her partner Jack and their daughter Mia, who is three. Mia has Rett syndrome. She can\u2019t move by herself, speak or eat \u2013 she gets her food through a feeding tube called a PEG. As well as the PEG tube, Mia needs other specialist equipment and 24-hour care.<\/p>\n\n\n\n

Lowri spoke to Sense about what it\u2019s like to face extra costs when you\u2019re raising a child with complex needs. <\/p>\n\n\n\n

\"Lowri<\/figure>\n\n\n\n

Mia is a really happy and bubbly little girl. She\u2019s obsessed with Peppa Pig, and she loves the outdoors. <\/p>\n\n\n\n

Since having her, I\u2019ve learned a lot. There\u2019s so much that other families might not realise about what it\u2019s like to raise a disabled child. <\/p>\n\n\n\n

There\u2019s a lot of things we can\u2019t do with Mia, like taking her to soft play or the park. We have to find other activities that are suitable for her, like sensory rooms. <\/p>\n\n\n\n

And we have a lot of equipment and lights at home that Mia needs, which cost a lot, and which means our electricity costs are high. <\/p>\n\n\n\n

We use lots of energy to make sure Mia is safe, clean and happy<\/strong><\/h2>\n\n\n\n

People don\u2019t realise that having a disabled child can mean your energy bills are higher. <\/p>\n\n\n\n

Electricity companies treat all customers equally, but we\u2019re not all equal. We don\u2019t all have feeding pumps and electric beds. We aren\u2019t all the same. <\/p>\n\n\n\n

\"Mia,<\/figure>\n\n\n\n

Mia has a lot of equipment that needs to be charged. Her feeding pump has to be charged, and her suction tube \u2013 this helps clear her airways so that she doesn\u2019t choke.<\/p>\n\n\n\n

She also has an electric hoist, stair climber, chair and bed, because she can\u2019t move herself. <\/p>\n\n\n\n

The bed has to be switched on all night, so we can tilt Mia up if she needs to be moved because she\u2019s coughing or being sick. <\/p>\n\n\n\n

I\u2019ve tried turning the bed off overnight to save money on our electricity bills, but I end up having to go into her room and turn it back on in the early hours of the morning.<\/p>\n\n\n\n

We also have to use the washing machine and dryer a lot, because Mia is incontinent. We wash her bedding every day. I\u2019ve probably washed my sofa covers more than 200 times.  <\/p>\n\n\n\n

Mia also has a lot of lights. Again, other families might not understand why this is a necessity. But for Mia, lights are her toys. <\/p>\n\n\n\n

She can\u2019t control her movements, she can\u2019t reach out to hold or touch regular toys. So she gets her stimulation and enjoyment from lights. <\/p>\n\n\n\n

We have a galaxy light in her bedroom that calms her down when she\u2019s anxious. And a disco ball that helps when she is having a meltdown. <\/p>\n\n\n\n

I also have some fibre optic lights for her. They came from a website for sensory toys. <\/p>\n\n\n\n

The problem is, whenever something has the word \u201csensory\u201d or \u201cdisability\u201d in front of it, it\u2019s more expensive. <\/p>\n\n\n\n

Everything marketed to disabled children is expensive<\/strong><\/h2>\n\n\n\n

We\u2019ve been lucky that we haven\u2019t had to pay for all of Mia\u2019s equipment, but everything for disabled children is so expensive. <\/p>\n\n\n\n

We recently had to pay about \u00a3360 for a portable seat for her. I got a wheelchair poncho to keep her dry in her wheelchair when it\u2019s raining \u2013 that was about \u00a335. It all adds up.<\/p>\n\n\n\n

“Our energy bills are going up. I think there should be some kind of allowance for people who need to run equipment like Mia\u2019s.”<\/p><\/blockquote><\/figure>\n\n\n\n

Then there are Mia\u2019s nappies. Those won\u2019t be provided on the NHS until she\u2019s five years old, and even then, they only give you an allowance of three per day. But Mia needs changing about five times a day.<\/p>\n\n\n\n

We\u2019ve tried using regular baby nappies, but she needs pads with better absorption. They\u2019re not cheap. <\/p>\n\n\n\n

There are trial and error things, too. For example, I recently bought some eczema gloves for Mia because she was licking her hands and making them sore. <\/p>\n\n\n\n

The gloves didn\u2019t work, so that was wasted money, and it was about \u00a310 a glove. <\/p>\n\n\n\n

It\u2019s just so unfair that these items can be so expensive. <\/p>\n\n\n\n

We need a benefits system that meets our needs<\/strong><\/h2>\n\n\n\n

We are getting \u00a366 a month from the government for support during the cost of living crisis, but that ends in March. <\/p>\n\n\n\n

Our energy company told us to claim the Winter Fuel Payment, but we were told we can\u2019t get it because our house is a new-build. <\/p>\n\n\n\n

In the meantime, our energy bills are going up. I think there should be some kind of allowance for people who need to run equipment like Mia\u2019s.<\/p>\n\n\n\n

Looking to the future, we really need a benefits system that actually reflects our situation. <\/p>\n\n\n\n

I can\u2019t work because I care for Mia. I get Carer\u2019s Allowance, but that amounts to \u00a3270 a month, which is far less than I would get if I could work. It comes to less than \u00a32 an hour, and that\u2019s if I was only caring for Mia for 35 hours a week. But I care for her 24\/7.<\/p>\n\n\n\n

I would work to earn more money to cope with rising costs if I could, but I don\u2019t have a choice. <\/p>\n\n\n\n

I wouldn\u2019t change Mia for the world, but people with disabled children don\u2019t choose this. We shouldn\u2019t have to put up with all these costs.<\/p>\n","protected":false},"excerpt":{"rendered":"

Lowri’s daughter Mia has Rett syndrome. She spoke to Sense about what it\u2019s like to face extra costs when you\u2019re raising a disabled child. <\/p>\n","protected":false},"author":14,"featured_media":20906,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[488],"class_list":["post-20899","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","display_author-lowri-james"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/20899","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=20899"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/20899\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/20906"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=20899"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=20899"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=20899"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=20899"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}