Amy has spoken in great detail about the current barriers to acquiring the quality of life she and her son deserve and I feel it is important to explore these. The main issue that is causing problems for this mother and son, at the present time, is lack of suitable housing. Amy describes their bathroom as being very small, and needing adaptations, to accommodate Jayden's needs, but being unable to carry them out. Amy needs a home in which her son can learn independence skills, in which Jayden can have the space to move freely in his wheelchair. In short, this family need to be provided with a wheelchair accessible home. She has become ill with the stress of trying to get her son the home he needs to thrive, as he grows into an adult. Often, becoming a homeowner is inaccessible to parent carers, due to the financial impact of not being able to work alongside caring duties. This is true for Amy and Jayden. Amy comments that "only a lottery win would enable me to purchase a property, with adaptations, so Jayden can have independence and I can care for him safely."
Amy feels that, in terms of getting her son the care he needs, she is not listened to. She feels that, as his mother, her opinions" don't matter". This is a theme that we see reflected in the lives of so many parent carers. It seems to be 'the norm'. Amy describes taking a year to get Jayden a very small care package and that accessing Direct Payments has been "extremely complex". With frustration, Amy describes meetings, upon meetings, where what needs to change is discussed, but nothing happens. This is devastating to hear.
Amy has never been on holiday, but despite needing respite from her caring role, she has not had a holiday in the 9 years she has been working as a carer. Currently, she is allowed 2 nights per month of respite care, which is "nowhere near enough". As a single parent, the physical aspect of Jayden's care falls solely to Amy and she needs regular rest, which she currently doesn't get. Amy would like to work part-time, but as Jayden has not been granted support for one afternoon a week, to enable her to commit to a job, she is not able to supplement her Carer's Allowance. Let me remind you that is approximately £67 per week.
When discussing what Amy feels carers need, from her lived experience of the role, she strongly points out "more financial security" which is a cry that is echoed by thousands of carers nationwide. Amy also feels that the role Local Authorities play needs to change. Attitudes towards facilitating good quality of life for disabled children, and their parent carers, need to be overhauled, with the family at the heart of the process.