Why are Education and Care Services Failing Disabled Children, and can the Law Help?
In the current climate of cuts to local authority and NHS budgets, we see mounting pressures on parents to plug the gaps in care for their disabled child.
Carers of children and young people with disabilities are entitled to an assessment of their own support needs as carers under the Children Act 1989 or the Care Act 2014. Local Authorities (LAs) must have regard to parent carers’ “wellbeing”, including supporting them to remain in work if they wish to. This can be particularly important when the support duty moves from children’s to adult social care. Parents who were able to stay in work while their child was at school can struggle to remain in employment once their child leaves education due to gaps in care provision.
The legislation emphasises a whole-family approach which takes account of the wellbeing of parents and siblings of disabled children. However, we are increasingly seeing NHS Clinical Commissioning Groups (CCGs) and Local Authorities relying on parents to plug significant gaps in care packages. This can be the case even where it is accepted that the child has a primary healthcare need and is eligible for NHS Children’s Continuing Care (NHS CCC).
It is not uncommon for parent carers to be told that one or both of them should leave work to provide the 24/7 care their disabled child needs. Some parent carers have been told that the working parent should carry out more of the household chores to free up the other parent to provide increased care.
Some parents have been asked to provide life-sustaining care which is a specialist healthcare function, and well beyond what they would be expected to provide to a non-disabled child of the same age. We are also aware of parents being told by CCGs that their child cannot be left with a carer without a parent present, preventing parents from carrying out tasks such as the school run for their other children.
This places immense pressure on parent carers, risks the sustainability of the care they are already providing due to the impact on their health and wellbeing, and puts a huge strain on family relationships and finances.
The recent Channel 4 Dispatches and Children’s Commissioner report on home education has exposed how many parents of children with Special Educational Needs have taken on the role of home-educating their child only as a last resort, for example after a school placement breakdown.
The report found that in 2017, 22% of children leaving schools to be home educated had Special Educational Needs, while 91% of Local Authorities said they were worried about schools “off rolling” students. The practice of “off-rolling” by schools often means parents have been effectively forced to ‘electively’ home-educate their child to avoid threatened permanent exclusion.
Where the child has an Education, Health and Care Plan (EHCP), this also has serious implications for the funding of the Special Educational Provision the child requires. The LA has no duty to fund the provision if the parent has ‘chosen’ to home educate. This is in contrast to when a child is ‘Educated other than at school’ because it would be inappropriate for them to attend school. In these cases, the LA must fully fund the special educational provision for them at home.
There is a lot that families can do to challenge CCGs, LAs and schools who are falling short of their statutory duties to disabled children, young people and their families. In addition to complaints to the Ombudsmen and Judicial Reviews of public body decisions, the SEND Tribunal offers a potential route of redress for disabled children and young people with EHCPs. Health and social care which ‘educates or trains’ a child can count as Special Educational Provision, which means it must be secured and funded by the LA.
Additionally, the National Trial process enables appeals to be brought against the Health and Social care sections of the EHCP, if there is a live education issue.
Although the Tribunal’s recommendations are non-binding, the scrutiny of the appeal process can facilitate negotiations and provide a further means to secure a comprehensive package.
Our team recently represented the parents of a severely disabled young girl in a SEND Tribunal appeal, resulting in an increased NHS CCC award, increased social care direct payments and more than tripling LA funding for her home education programme worth over £170,000 per year in total. This was delivered through an integrated Personal Budget and Direct Payments, giving the parents more flexibility and control.