This post has been written by Carrick Brown, Senior Care Services Manager, Newlife the Charity for Disabled Children.
Last week Newlife issued a press release after new official figures were published showing the number of disabled children in the UK has increased by 15% on the previous year. Data from the Family Resources Survey, commissioned by the Department of Work and Pensions (DWP) states there are now 1.1 million children with disabilities across the UK.
While this is good news because it illustrates improvements in medical science increasing survival rates for babies born prematurely and with in-born conditions. It also has a knock-on effect for the families with disabled children, who are already struggling to access timely, practical support, including clinical and specialist disability equipment, financial grants, suitable housing and domestic help.
Over the last 25 years, Newlife has explored and significantly changed the landscape of support and equipment availability within the world of childhood disability.
We provide equipment to the value of circa £2.2m each year. And where an immediate response is needed, we can provide equipment through our emergency loan service anywhere in the UK within 72 hours.
We do this because children with disabilities are often at greater risk of significant injury without the right equipment – but also because children with a life-threatening or life-shortening condition shouldn’t have to wait for equipment.
Newlife shouldn’t have to do this. The fact is that local NHS and Social Care services have a legal responsibility aligned with their statutory obligations to meet these needs. This is why it is becoming increasingly important to understand statutory obligations and how they are enshrined in law, so that appropriate levels of support and care are provided to children with disabilities.
Specialist equipment such as wheelchairs, seating systems, beds and postural support systems play a vital role in protecting the health of a child with a disability – and for those who care for them. For instance with the correct assessments an appropriate 24 hour postural management plan can be implemented that protects body shape so that wholly avoidable deterioration is minimised and subsequently the longevity and quality of life can be improved.
Failure to provide equipment results in pain and suffering, health conditions worsening which in turn increases medical costs and can contribute to very complex circumstances within communities across the UK.
2 in 3 families state in feedback to Newlife that the statutory decisions that denied equipment to their child was detrimental to the child’s safety, health and/or wellbeing. And yet, supporting the health and wellbeing of children with disabilities has to be a priority for the health service and local authorities.
Clarification of the law will enable front-line professionals to re-establish themselves as advocates of children with disabilities, and for families will reinforce the important role of local health and social care professionals.
In the short-term, we will encourage families to register their child with the local authority. If local government understands a child’s needs, then it is reasonable to assume we are one step closer to having a local service that is planned effectively to meet their needs.
As an organisation, we will lobby government – not asking for more money, just better use of available funds to offer appropriate support for a greater number of children with disabilities.
Come along to hear Carrick Brown in Seminar Room 2, Thursday 17th May at 2.00pm at Kidz to Adultz South talking about ‘How to Use the Law to Improve Equipment Provision’.