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Caring for a child with additional needs - seminar discussion
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November 2006
One Parent Families' Disabled Child Project, providing a specialist support and advice service for lone parents
One Parent Families' Disabled Child Project was recently evaluated (see our Evaluation Report summary). We wanted to learn from others experiences in this field, and held a seminar with policy experts on 21 November 2006 to discuss the findings.
The first topic raised was the experience for lone parents caring alone. The evaluation of our specialised service had found that lone parents were battling to receive services, and had really appreciated having an advice line that catered to their specific needs. Discussion focused around the emotional toll that could be exacted on parents by not only having a disabled child but also experiencing poor services. And caring alone could bring additional problems, for example around contact arrangements with the child's other parent. As one participant commented, rather than seeing the problem as one of 'hard to reach' families, we should concentrate on the fact that services are often hard to find. One positive model to emerge was the network of face-to-face support services run by Contact a Family - although these cannot reach all parents.
Benefit complexity was an inevitable further cause for concern, with seminar participants backing up the finding from the evaluation that parents often face problems both with their awareness of and in claiming disability benefits. There are particular problems with Disability Living Allowance (DLA). Schools are often asked to provide evidence to back up a claim, and, as they are used to seeing children in terms of their abilities rather than disabilities, this may not always be appropriate. The claim form is also notoriously complicated. The DWP representative who attended the seminar gave us some hope on the claim form; a new simplified form for adults is being trialled, and, if successful, one for children will follow.
However, decisions on whether to talk to schools about claims for children's DLA are made by individual decision-makers, and there did not seem to be much current scope for movement here, nor in the area of decision-makers routinely making short-term awards for children, which, again, One Parent Families found was a particular problem for those using our service. These may be areas where further campaigning is necessary.
The final point to come up in the discussion of benefits was the current problems of Jobcentre Plus in processing new claims - all participants had witnessed this, and although this is an issue that goes wider than disability, it is very clearly causing problems for parents of disabled children as well as other groups. Urgent Government action to remedy the situation was agreed to be needed here.
The seminar then moved on to consider the barriers to employment for those caring for disabled children. Issues raised here included the lack of availability of childcare - a particular problem for disabled children - and the fact that, after paying for specialised care, parents may often find themselves no better off in work. Motivations for working are not always financial - many parents of disabled children want to work, and when family support is in place they often manage to do so. But it was warned that paid work must not be seen as a panacea for the poverty faced by this group - looking after a disabled child, for many parents, is a job in itself.
Finally the seminar touched on access to local services, and particularly respite care - these issues had been raised in the evaluation report. Lack of knowledge about entitlement and refusal of services is a particular problem, and local advice and advocacy services have an important role to play here. Children's Information Services may also be able to contribute here, as following the Childcare Act they will have a duty to provide local information and support in this area to parents of disabled children. Increasing the supply of good quality affordable childcare available to parents caring for a disabled child would reduce the need for respite care, but the latter still remains, and will remain, vitally important to give parents a break. Contact a Family is campaigning to introduce a right for parents of disabled children to have short breaks, and a private members bill on this issue will be introduced to parliament.
There was much consensus in the seminar that lone parents caring for a disabled child still face a range of difficult and specific issues. One Parent Families will be looking at how we can work with other organisations to ask Government to make life easier for lone parents caring for a disabled child; meanwhile, we have secured funding to continue our specialist service in the short term for this group.
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