AMPLIFYING CARERS' VOICES
Creating a space for carers to share their voice.
Elaine and Rosie
After noticing Elaine's consistent campaigning on social media, raising awareness about issues surrounding equality for children with disabilities we asked Elaine for a snapshot of her life and were pleased when she agreed to talk to us. Written by Rachel Mewes.
Elaine, 42, lives with her partner, her two sons, who are 18 and 6, and her daughter, Rosie, 3, in South Lincolnshire. Elaine is a full-time unpaid carer for Rosie, who has Myelomeningocele Spina bifida. Rosie requires personal care, intermittent catheterisation, and an overnight one, all of which Elaine is responsible for carrying out. Elaine describes that Rosie requires moving and positioning, as she's unable to walk yet, and that she has regular physiotherapy. Rosie is described with great pride, talking about how she plays and is trying to dress herself. Rosie has hit her milestones and is doing extremely well with her cognitive development. Elaine describes her daughter as 'a cheeky, clever little girl who takes it all in her stride.'

Talking about her daughter's condition, Elaine states that 'I've learnt so much, medically.' This will strike a chord with many parent carers. We often become the expert in our child's condition and enter a whole new world of medical terms and procedures we didn't even know existed. Parents of children with disabilities have our own community. We support each other when the rest of society lets us down. Elaine has a positive outlook and is definitely a glass half-full person. She chats about about the disabled community and how she loves meeting like-minded people'. It is so very true that, nationwide we do support each other, guide and advise other parents in similar situations.

Highlighting some of the challenges that Elaine faces, in trying to ensure Rosie gets the care, intervention and treatment she needs to thrive a 'lack of support' comes straight to the forefront. Rosie is now waiting to be provided with her third Occupational Therapist, a service that is vital to assist her in developing motor skills and assessing any adaptations she may need to access education. Elaine also cites a 'lack of communication' and 'waiting time for referrals' are becoming an issue in Rosie's care. These kind of problems in multi-disciplinary care of disabled children are widespread and Elaine is one of thousands experiencing the battle to get her child the level of treatment she needs.

When we asked Elaine, from her lived experience of operating as an unpaid carer to her daughter, what she felt needs to change in order to make life better for children with disabilities, like Rosie, she gave quite a list.








We are actually penalised for caring for our disabled child. Carer's Allowance is meant to be a financial boost to cover the extra costs of being a carer, yet the government punish us for having to claim it by reducing our Universal Credit income. This pushes families into poverty and impacts directly on the child.
Elaine
@Elaine_Lanie78

Firstly, Elaine believes 'disabilities need to be recognised more'. This is key to understanding what children need to succeed. It is all too often that we hear of EHCP's being refused or services not being provided. Our society needs to be addressing every aspect of a child's disability and removing each and every barrier they are faced with.

Secondly, Elaine states that she feels 'training needs to be provided all round. From midwives, to health visitors'. I think this is something that so many of us have raised time and again. More up to date knowledge of conditions is required and also the lack of knowledge of lived experience of disabilities means it is often only a medical model that is presented by healthcare staff. This is an unfair representation that does not come from people who actually have disabilities.

Thirdly, and an issue that so many of us are campaigning to change is 'better pay for carers'. For those of us who have given up a career in order to care for our child, often due to the battle we have to get our child's human rights respected, we have had to apply for Carer's Allowance. This is then topped up by Universal Credit. The current system means that if you receive Carer's Allowance, this is then deducted from your Universal Credit. We are actually penalised for caring for our disabled child. Carer's Allowance is meant to be a financial boost to cover the extra costs of being a carer, yet the government punish us for having to claim it by reducing our Universal Credit income. This pushes families into poverty and impacts directly on the child.

On a final note, Elaine states that 'more recognition is needed for carers and disabled children alike. Better funding. Better care.' We couldn't agree more. See us. Hear us.

Thank you so much for taking the time to talk to us Elaine. Your lived experience is vital to raising awareness of the issues that need to change in our society to make life better for disabled children and their carers.










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