Disabled children’s basic needs are not being met, according to a new report by Newlife, which reveals that three in five families are unable to access the specialist equipment they desperately need.
The report highlights that waiting times for specialist equipment are rising, with almost one in four local authorities having waiting lists of at least a year long, with some exceeding three years.
Newlife says the Fight For Our Future report exposes the ‘bleak’ reality facing hundreds of families in the UK and how the government are failing to make disabled children’s needs ‘a priority’.
Newlife say it has “never been more challenging” for the 1.6 million disabled children in the UK to have their needs met by health and social care services – a number which has doubled in the past decade.
While families are rightly concerned about the lack of provision for disabled children, so are professionals, with 75% concerned by the unmet equipment needs in their area. The majority of professionals (seven in 10) blame equipment shortages on a lack of funding, while the same amount attribute the long assessment waits on a lack of staff.
The Northwest of England has some of the longest waiting times, with some children waiting more than three years for an assessment. This is closely followed by Northern Ireland and Wales where waits are nearly three years, and London where children are waiting more than two years.
Specialist equipment (such as buggies, wheelchairs, hoists and beds) protect children and give them the freedom to have a dignified and fulfilling life. The impact this equipment has on families can therefore be life-changing.
Fifteen-year-old Rhys Porter from Uxbridge, who has cerebral palsy, was left without basic equipment including a hoist and home adaptions for two years. This left his parents having to help him use a commode seat and bucket in his bedroom and drag him into their small family bathroom on a towel once a week for a shower, risking injury to all of them.
“I was left feeling exhausted. We do all the right things but feel constantly failed. Everything is a massive battle. No one should have to fight just for their basic human rights,” Kelly said.
Facing the cancellation of vital surgery due to the lack of equipment at home, Kelly self-referred to social services. Newlife were then able to provide a foldable hoist within days.
“I phoned my husband and cried. That was massive for us. We needed help, we couldn’t do it ourselves and I don’t know what we would have done if we didn’t get that help,” Kelly said.
The report identifies four key barriers facing disabled children and their families, including increasing waiting times for assessments, insufficient equipment budgets, lack of leadership at a government level and a shortage of suitable professionals.
To tackle these barriers, Newlife is calling on the government to commit to establishing a dedicated Minister for Disabled Children, who will ACT:
The charity is also urging policy makers to issue clear guidance defining the responsibilities of local services regarding equipment provision, expand the paediatric apprenticeship programme, improve staff retention and equipment training, implement a maximum wait time for assessments, and create a ringfenced budget for specialist children’s equipment that is sufficient to meet all needs.
Stephen Morgan, Newlife’s Director of Charitable Services, said: “This report and its findings are clear; disabled children and their families do not feel they are a priority and as such they have to fight for every bit of support they can get. The current system is failing disabled children and their families with unacceptable waiting times for vital assessments and the equipment that is so desperately needed.
“It’s time for change, and we call on all party leaders and decision makers to establish a dedicated Minister for Disabled Children, provide clear guidance on equipment provision and allocate sufficient funding to meet the needs of every disabled child. It’s time to prioritise the wellbeing and potential of disabled children and ensure they receive the support they deserve.”
