Children able to access essential equipment after Newlife Plea to councils

Published: 3 December 2019

The number of UK councils with potentially unlawful restrictions on the provision of essential equipment to disabled children has dropped by more than a third in just one year thanks to a campaign by Newlife the Charity for Disabled Children.

New data released today reveals the number of local authorities refusing to provide disabled children with specialist car seats ‘under any circumstance’, has dropped from 83% to 50% since Newlife started directly challenging authorities a year ago.

Over the last 12 months, Newlife has actively challenged the councils that said they would not fund the equipment in a Freedom of Information request submitted by the charity. Today, 105 councils say they will be able to provide specialist car seats if a need is identified including Birmingham City Council, Coventry City Council, Herefordshire Council, Stoke-on-Trent City Council, Telford & Wrekin Council, City of Wolverhampton Council in the West Midlands; and Derby City Council, Leicester City Council, Leicestershire County Council, Lincolnshire County Council and Rutland County Council in the East Midlands.

Clare Dangerfield, Campaigning and Public Affairs Manager at Newlife, said:

We applaud those local authorities that have listened to our concerns and worked with us to adapt their policies to allow frontline staff to arrange for specialist car seats to be provided to children where it is essential for their safety. It’s simply not acceptable for councils to use blanket ban policies to push costs back onto parents. While a standard car-seat costs just £100, the kind of adapted seat required by disabled and terminally ill children can cost up to 35 times as much. Forcing parents to cover the cost of equipment denied by their council due to austerity measures drives families into poverty. Policies like these also cause incredible amounts of unnecessary suffering. Recently, a mum told us she had to sedate her son to get him into his car seat for journeys to the doctor due to the extreme pain he faced otherwise. Another child who had severe autism was denied a ‘safespace’ high-sided bed, and so banged his head so hard that his retinas detached. All because of restrictive, unnecessary blanket bans. This is just not acceptable. Although there has been a clear improvement in the number of children now affected by blanket bans on equipment, the fact is that children continue to be left facing unnecessary risk because of a postcode lottery and we will continue to put pressure on those councils that refuse to help keep disabled children safe by not providing the equipment they need.

Newlife believes rigid policies that refuse to provide a specialist car seat to any child regardless of their circumstances constitute a ‘blanket ban’ and commissioned barristers’ advice which said they would be challengeable in law. The charity believes such bans are likely to be contrary to the rights of disabled children outlined in the Chronically Sick and Disabled Persons Act (1970) and Children’s Act (1989), putting vulnerable children at risk of serious injury or even death.

Newlife’s research revealed blanket bans are being used by councils across the country in relation to providing other equipment including walking frames, specialised buggies, arm supports and high-sided safety beds.

As a result, Newlife the Charity for Disabled Children has provided equipment to more than 1200 families in crisis in the past year alone, granting equipment with a total value of over £1,100,000 to ensure vulnerable children are not left at risk of catastrophic injury or even death.

But the most prevalent use of a blanket ban was the widespread refusal of councils to fund specialist car seats to children who have a clear medical or safety need identified by a qualified professional. These specialised seats are required to keep children with musculoskeletal disorders, seizure disorders or a compromised airway safe, which is why Newlife made car seats the number one blanket ban it set out to tackle when it launched its ‘Fix the Four’ report outlining the hidden disability equipment crisis last November.

The report exposed the impact blanket bans on disability equipment was having on children and their families across the UK, potentially affecting more than 560,000 disabled children.

Ruby Hale, from Burton-Upon-Trent, Staffordshire, is among the children provided with a specialist car seat by Newlife the Charity for Disabled Children. Ruby, aged 11, was born with a rare genetic disorder called Kleefstra syndrome. As a result she has a mental age of six months and can’t walk, talk or sit up, as well as suffering daily seizures lasting up to half an hour each.

Ruby’s mum Debbie Hale said:

It’s not an option for us to not travel in the car. Ruby shouldn’t miss out on vital appointments or school because she doesn’t have the right seat, she is entitled to those things like any other child. Without a new seat she would have been forced to use her old one which was small and unsafe, as she can’t use a standard car seat. The new seat has been a lifesaver. It has padding to keep Ruby safe and keep her head in place. It fits perfectly beside her little sister’s car seats, so I know all my girls are safe. You don’t get a pot of money to buy everything your child needs. Turning to Newlife was our only option.

Sheila Brown OBE, Co-Founder and CEO at Newlife, said:

For as long as local authorities and health services continue to use ‘blanket ban’ policies, Newlife will continue to challenge these potentially unlawful practices; support families through our services, cut through local authority red tape and provide emergency equipment to keep children safe. The goal of all our work is to ensure that every single one of the UK’s 1.1 million disabled and terminally ill children are able to live a life without unnecessary pain or suffering – a basic right that every single child deserves. Newlife exists because if it was your child, you would want the best for them and that’s what we are working for every day.

As part of its investigation into the disability crisis, Newlife has also identified that there is no national legal maximum waiting time, with many areas failing to meet their own best practice guideline, or an effective emergency equipment response, leaving disabled children in pain or at risk while they wait for prescribed equipment.

Fix The Four identifies four key aims that Newlife has committed to achieving in order to tackle the disability crisis:

1. Cease use of blanket bans
2. Establish emergency equipment response
3. Introduce maximum waiting time for assessment
4. Ensure every child is counted through accurate disability register.

For more information visit the Newlife website.

Children, Community, Health