Caring More Than Most: Nikki and Antonia

Wednesday February 7, 2018

This week parent carers have been giving evidence at the work and pensions select committee on their inquiry into support for carers.

Contact submitted evidence based on our Caring More Than Most report, which found that parent carers face significant disadvantage compared to other parents and carers.

One of the parents speaking in parliament was Nikki, who lives with her husband and two daughters - Heidi aged five and Antonia aged 15. In this blog Nikki explains the challenge of struggling to get the right support.

Antonia has an exceptionally rare chromosome deletion at 2Q24.2. She has lost a significant number of genes considered crucial for human development. As a result she has profound and multiple disabilities and will require 24/7 care for the rest of her life. 

Caring for Antonia has changed our lives beyond anything we imagined. I am a primary school teacher, a job that I feel passionate about, but because of the level of care that Antonia requires, I had no option but to give up teaching altogether for the first eight years of her life.

We had no idea who to turn to for advice and support other than our close family. I am now, like many other parent carers, only able to work part time because of the demands of having a profoundly disabled child. 

I am fortunate to be in a strong marriage with a very supportive husband and family. This has been essential because, put in its simplest terms, the help that is promised within all the laws and legislation is simply unobtainable from the local authority.  

Navigating our way through the minefield of CIN assessments, Carer's Assessments and eligibility criteria has been bewildering, confusing and exhausting. Our experience of social care has been soul destroying. As a result it is almost impossible to get help. There is no structure or support to get parents back on their feet, keep fit and healthy or get back into work.

It is wrong that parents like me are forced to seek legal advice and assistance from advocacy services in order to get the local authority to provide the support our family needs - the support that is so clearly and definitely set out in the laws surrounding disabled children and their families.  

I am involved in the local parent carer's forum where we continually strive to make things better for our children, despite the fact that our local authority "does not put children and families at the heart of their decisions" (Ofsted 2018) and they continue to make poor, ill informed and often legally questionable judgements in their assessments. 

Like all parent carers we want the very best for our children. We do not find our children a burden but we do find the shameful lack of support burdensome. If you listen to all the past ministers and you read all the legislation, so much has been promised. I for one will not settle until we have the very best care for Antonia and our family.  It is just very sad I have to fight so hard for it. 

Health and social care services provide a vital lifeline to families, helping them stay together and stay healthy. These services include short breaks, a range of therapies, personal care, home help, and the provision of equipment and adaptations. 

We want to see an end to funding cuts and reductions to already inadequate health and social care services - cuts that mean too often parents with disabled children are left caring more than most.

Find out more about our Caring More Than Most campaign.