In the UK there are approximately 1 million disabled children, the levels of disability ranging from neurodiverse conditions (such as PDA, ADHD, autism) to physical disabilities (Cerebral Palsy, deafness, blindness, and others) and genetic disorders (Downs, Retts, Hunter Syndrome, and others). Of all these children 99.1% are cared for at home by their parents. 

For disabled adults, the Coronavirus Act 2020 is a diminution of hard-fought rights. For disabled children, it ignores the complexities of their lives and serves only to increase the level of poverty and inequality inherent in raising a disabled child.

Ten years ago, Warwick University conducted a study that looked at poverty and disability; it found that raising a disabled child increased a family’s outgoings by as much as £50 per week (today this figure is closer to £65 per week). Parents of disabled children have limited options for paid employment. Now these costs have escalated again suddenly. 

Families are relying on supermarkets to deliver food, which in some instances has increased costs. Dietary requirements for some children are either very specific due to intolerances or, especially with autistic children, they may only eat a certain brand. Some essential medicines are being collected by taxi drivers and delivered, again with an added cost. Medically complex children require regular medical supplies that come direct from local hospital paediatric departments, again these must be collected and delivered and are often essential items.

These might seem like small costs, but they build up quickly. When families seek help, they often find institutional responses lacking. Local government response, for instance, has been uneven and in many case not understanding of the complexities involved. Families are often recommended to get friends to help – but families with disabled children often have friends who have disabled children too, which makes this advice next to useless.

Some families receive direct payments, a small pot of money they can use to fund more support at home; this can be used to pay a family member, as long as that family member is not at the same address as the child receiving care. With a lot of medically complex children now isolating at home, families have found that they are no longer able to access this support.

Social care obligations have also changed, specifically when it comes to short breaks. These are when the child is taken away to a hospice or respite setting to allow the family much needed time to recover. But again, the government has overlooked systemic problems for families with disabled children.

Respite care is provided and funded through social care, but in-home care of a disabled child is often funded through the NHS as part of continuing healthcare – with staffing organised through charities or small local organisations. Many have stopped providing in home support because they lack proper PPE or because the charities have had to close to reduce expenditure. 

Some more physically disabled children receive physical therapy in a school setting, often covered as part of their Education and Health Care Plan (EHCP). These children are now part of the shielding group and are unable to access these therapies, which has long term implications on their physical wellbeing. A lot of children with physical disabilities are now in the third month of isolation and have not had access to proper physiotherapy. This is reducing the physical health and wellbeing of these children and in some instances the child might not be able to recover.

Thousands of families with disabled children have had their lives made dramatically more difficult during this crisis, but few seem to have noticed. But this is not a new experience – these are families who have been, in many cases, pushed into isolation and poverty because society does not adapt to the needs of disabled children, let alone disabled adults. The solutions are not necessarily radical, but never seem to be forthcoming. 

For direct payments it could be as simple as changing the current system to allow payments to the same address as the child. This would give families a small cash injection. If a parent had been furloughed or made redundant, it would mean that they could continue to pay bills. 

There is also a call for the current Carer’s Allowance to be replaced with a form of Universal Basic Income. CA is £67.25 a week and payable to one parent in the household who assumes care responsibility for a disabled child for at least 35 hours a week. It is an allowance, so if you claim it the other benefits might be affected. Instead of this complex and punitive system, surely it’s time that a liveable income stream was established as a basic right for all families with disabled children.

The Coronavirus Act has only made these circumstances worse. The ability for local authorities to opt out of social care duties has already been rejected by parliament three times in the past five years but now it is part of law and the concern is that these exemptions will be extended beyond September 2020. 

Last year, Labour was praised for launching a Neurodiversity Manifesto. Some advocates were critical of its content but broadly it was accepted that it was a step in the right direction for neurodiverse rights and inclusion. However, there was no matching manifesto for disabled children in general. In all areas of society, it tends to be assumed that disabled people appear at 18 as if they never had a childhood; and, in most cases in Britain, they didn’t.