Newlife, the Charity for Disabled Children, has published a four-point plan off the back of a damning report that has exposed major failings around the provision of specialist equipment to vulnerable children.

The charity is calling on the government to help those children whose lives are at risk because they don’t have the specialist apparatus they need, and has put together a four-point plan, which it hopes will improve access to much-needed equipment.

The report, titled Equipment Crisis for Disabled Children, highlights why children are being deprived of specialist equipment like walking frames, specialist car seats and beds.

“All children have the right to be safe and free from pain, they have a right to learn and a right to reach their potential regardless of diagnosis or disability,” explains Mrs Sheila Brown, OBE, Newlife CEO, and mum to two disabled children herself.

“But every single day severely disabled and terminally ill children are denied their fundamental rights because existing policies preclude them, or decisions are made based on frugality rather than health and necessity. The result is children are left to suffer in pain, their safety compromised, isolated from the world.”

The report highlights a couple of key findings:

  • 83% of local authorities apply unlawful ‘blanket bans’ that restrict equipment
  • 89% of children missing from disability registers

The use of blanket bans by local statutory services is widespread and challengeable in law. This is one of the points Newlife is calling for action on. Often used as a way to ration shrinking budgets, a blanket ban means local authorities refuse to provide a particular piece of equipment ‘under any circumstances’. Each authority has its own criteria for applying these bans for example; no wheelchair assessments for under threes and no walking frames for a child who will never walk independently. However, by far the most common is the blanket refusal to fund specialist, protective car seats for disabled children, irrespective of whether there is a medical need for one with 83% of local authorities applying such a ban.

Meanwhile, 8% of children in the UK have a disability - or just over 1.1 million children in all. The Children’s Act 1989 requires all local authorities in England ‘establish and maintain’ a register of children with a disability in their area. However, data exclusively obtained by Newlife shows less than 11% of children are included on local disability registers.

“Knowing the true number of disabled children in need is crucial,” said Mrs Brown. “If only 11% are visible to public authorities, it’s impossible to budget and plan resources and services effectively in order to meet the need. This also explains why local health and social care services are drastically failing to provide the care, support and equipment they need.”
Despite demand for equipment reaching critical levels, a quarter of local statutory services cut spending during 2016/17.

Newlife’s four point plan

In response to these challenges, Newlife has devised a four-point plan, calling on national and individual local statutory services to work together and alongside the charity to implement the proposals and change hundreds of thousands of children’s lives:

  • Fix one: Cease the use of blanket bans for rationing equipment. Blanket bans are commonly used as a way to manage budget constraints. Essential equipment is denied ‘under any circumstances’, this is arbitrary and fails to respond to their assessed needs
  • Fix two: Establish and emergency equipment response service. Children in crisis cannot get equipment quickly enough. Local statutory services don’t have an effective emergency equipment response service for children in urgent need. This needs fixing to prevent injury, to allow hospital discharge and to relieve pain
  • Fix three: Introduce maximum waiting times for equipment assessments across health and social care. Waiting times for assessments for essential equipment are not capped, and there are widespread lengthy delays – families can wait months, sometimes years before their child is prescribed the equipment they need. This leaves disabled children living in pain or at risk of injury and their families in constant anxiety
  • Fix four: Ensure every disabled child is counted. Disability registers are failing. Without an accurate measure, health and social care services cannot budget to meet the need. Local authorities must put in place an accurate way to measure the number of disabled children to ensure that no child is invisible.