June 6-12 is the annual celebration of Carers Week, highlighting a “campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK.” But what asks Jane Renton if you have to fight even to get recognition as a carer in the first place?
Anyone who saw last year’s heartbreaking BBC 3 film, Don’t Take My Baby, will realise the particular pressure that disabled parents of disabled children feel to prove themselves good enough parents.
As somebody with high-functioning Asperger’s, I wear my disability lightly. As a parent and carer of children, it is a heavier burden to carry vicariously.
Essentially, this is because those who help care for disabled people are disproportionately family members. There is a definite grey area where the natural love and support we give to relatives segues into a deeper caring role. It is because of this that people too often do not look for help and support, as the very act of acknowledging their loved one is an added burden seems to suggest a lack of care somehow.
When we do look for support – usually suggested by a helpline – the first suggestion tends to be applying for Carer’s Allowance of £62.10 per week. For people over 65-years-old, it is possible to apply for Attendance Allowance at £55.10 – £82.30 per week.
These are the soft-entry ways into the carer community, alongside the various charitable organisations and carer support groups and helplines. But what if the carer – as they really should do – asks for more support?
In my case, only two of my children meet the threshold for the Disabled Children’s Team. Asperger’s syndrome has the tendency to get tidied away in many local authorities, only to resurface later in a Child and adolescent mental health services (CAMHS) referral. The cynic in me says that this may well be because the funding brackets mean that pastoral Asperger support comes under the local authority budget, whereas mental health is within the larger, clinical NHS one. I may be wrong. I hope I am wrong.
As with adults, children can access direct payments to help support them in any aspect of their disability. This is in addition to Disability Living Allowance, which turns into PIP at age 16. As well as assessing the extra care needs of disabled children, there is also a responsibility on local authorities to assess the needs of parents or carers. And this is where it goes into that murky grey area again.
Unlike carers of adult family members, parent carers are not automatically entitled to their own discrete and independent assessment. The Children and Families Act 2014 amended the Children Act 1989. This required local councils to assess parent carers on the appearance of need or where an assessment was requested.
Called a parent carer’s needs assessment, it could be combined with the disabled child’s assessment, at the same time. But anyone who has ever attended the protracted Child-In-Need assessments will know that in reality, there is very scant attention paid to the needs of carers – especially parent carers. This is partially because there is always a lot of ground to cover in relation to the child’s needs, and partially because nobody wants to admit they are struggling to cope with raising their own child.
Carers UK summarises the assessment of needs criteria as being whether a parent carer has needs for support and what those needs are and whether it is appropriate for the parent to provide, or continue to provide, care for the disabled child, in the light of the parent’s needs for support, other needs and wishes.
Parent carers’ needs assessment must also consider the well-being of the parent carer, the need to safeguard and promote the welfare of the child cared for, and any other child for whom the parent carer has parental responsibility.
The inclusion in this list of “whether it is appropriate for the parent to continue to provide care, in the light of the parent’s needs for support” is chilling. This encourages us to put on a brave face, perhaps more than the average parent. In my case, it triggers an intense and unrelenting perfectionism that is a feature of my Asperger’s syndrome. It is exhausting and it is unnecessary.
The devil is in detail – and the lack of it. Just why there is no clear and defined guideline for a carer’s assessment is mystifying. Just why there seems to be an inbuilt disincentive for disabled carers to be honest about their needs is worrying. And just how this is all supposed to change anything for the better is anyone’s guess. But, maybe that’s the point.