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.
Written by
Contact
at 17:11