It has recently been reported in the media that 28000 low income families who care for a disabled child have been underpaid via tax credits since 2011. For the poorest and most challenged families this means a total loss in income of £20000. The money was not paid to families in part because of a breakdown in communication between the Department of Work and Pensions (DWP) and Her Majesty’s Revenue and Custom (HMRC). Even though this is acknowledged by the agencies, the Government has decided against paying all the monies that families were entitled to claim. HMRC argues that it was the responsibility of families to check that they received their full entitlement and to alert them to their right to claim and of any shortfall.
Many families of disabled children suffer severe financial hardship because at least one parent is compelled to give up work to become a full time carer. Life involves attending a relentless number of medical, social care and education appointments. Children can be off school frequently because of health complications. Caring becomes a full time job as parents are expected to be nurse, educator and advocate for their children. Any energy left is used up in trying to navigate the complexity of systems of disability support. There is a compelling argument to be made therefore that it is unreasonable and unrealistic to expect parents to keep a check on the Government agencies that are charged with supporting them and for parents always to have the energy to be on top of the system. Disabled families need us all to understand, to care and to take on the responsibility of ensuring they can access the support that they require.
Recently I was told the story of a mother who has been forced to give up jobs because school repeatedly calls her in to change her disabled child after a toileting accident. Burdened by the pressures of responding to ever changing curricula and the need constantly to raise attainment, attending to a soiled child clearly felt like a job too far for staff. Perhaps it was considered by that school a role of care and not education. This is not a single occurrence. I have heard this story before from other parents and carers. Having to leave jobs suddenly to get to the school to help their child can make working impossible for parents. However, in making these demands of parents, schools are putting themselves in breach of The Equality Act 2010 and the United Nations Convention on the Rights of Persons with Disabilities. Refusing to change a soiled child quickly and in a manner that maintains the child’s dignity is an act of discrimination.
Most importantly what these examples of Tax Credits and Toileting reveal to us is that schools like the Government often fail to notice and understand what it really means to be a parent of a disabled child. There is a disconnect between how Government departments and schools imagine the lives of disabled families to be and the reality of parents’ lived experience. Receiving the funds that they have missed out on would transform the lives this Christmas of disabled families on low incomes. Feeling that schools in 2017 were making time to come to know and understand what it means to parent a disabled child would be a gift for all.