Newlife reveals major failings surrounding the provision of specialist equipment to disabled children
After revealing “unlawful” failings regarding the provision of specialist equipment, Newlife the Charity for Disabled Children is urgently calling on the UK Government to help children whose lives are at risk because they don’t have the specialist equipment they need.
In its report, ‘Equipment Crisis for Disabled Children,’ launched on the 26th of November at the House of Commons, the charity highlights why children are being deprived of specialist equipment such as walking frames, specialist car seats and beds, and has published a practical four-point-plan to fix it.
Sheila Brown OBE, CEO of Newlife and a mum to two disabled children herself, commented: “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.
“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.”
One of the main points Newlife is calling for action on is the use of blanket bans by local statutory services.
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, says the charity, 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 percent of local authorities applying such a ban.
In addition, eight percent of children in the UK have a disability, equating to around 1.1 million children in total.
The Children’s Act 1989 requires all local authorities in England to ‘establish and maintain’ a register of children with a disability in their area. However, data obtained by Newlife shows less than 11 percent of children are included on local disability registers.
Sheila said: “Knowing the true number of disabled children in need is crucial. 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.”
Additionally, despite demand for equipment reaching critical levels, a quarter of local statutory services cut spending during 2016/17.
Sheila added: “There’s lots of complex reasons why children are being failed. The law protects their rights to live safely, to have the opportunity to learn and to reach their potential, whatever that may be.
“This matters to every family, cancers, accidents, birth defects and infections. These risks are with us every day. No-one thinks it will happen to them. I didn’t, but that’s the reality.
“We believe that if the government ‘fixes’ the four big issues highlighted here, then hundreds of thousands of our children will benefit.”
In response to this, Newlife is calling on national and individual local statutory services to work with it to put in place our four-point-plan, which the charity says will change hundreds of thousands of children’s lives.
Its four-point plan is outlined here:
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.
Two: Establish an 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.
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. They simply can’t wait.
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.