Campaign launched as confidence in disabled children’s health and social care services at all-time low in south east England

A campaign to highlight the challenges faced by parents with disabled children has been launched after research found confidence in health and social care services are at an all-time low.

In south east England, more than 90 per cent of parents of disabled children have so little confidence in the social care system they believe their kids would be abandoned if they could no longer look after them.

The findings, published by Disabled Children’s Partnership, found the root of the problem was the “overwhelming” lack of support families with disabled children receive.

Four in five parents have experienced problems accessing the care services they need while two-thirds worry daily about being able to meet their disabled child’s needs.

Nearly three quarters of those surveyed have experienced some form of mental health problems as a result of the continued strain compared to one in four in the general population.

‘Almost no help on a day to day basis’

Croydon resident Emma’s 12-year-old daughter Millie was diagnosed with a rare tumour when she was ten.

She is now paralysed on one side and uses a wheelchair; she has a tracheostomy and requires ventilation at night to give her enough oxygen.

Millie is unable to talk and uses an iPad to communicate. However, Emma receives almost no help on a day to day basis to support Millie with her health and social care needs.

Emma said: “It’s not until your child becomes unwell and has severe disabilities that you realise there’s nothing there, support for disabled children is almost non-existent.

“Everything becomes a battle – endless meetings, hours of phone calls, only to be told that there is no funding or you’re on a waiting list.

“It makes everything ten times harder.”

The Disabled Children’s Partnership’s new campaign, The Secret Life of Us, will highlight the day-to-day lives of disabled children, young people and their families.

With 43 per cent of people in the UK not knowing someone with a disability, The Disabled Children’s Partnership believe that with increased awareness and public support a “real difference can be made to the lives of disabled children, young people and their families”.

Dalton Leong, chief executive of The Children’s Trust, member of Disabled Children’s Partnership, said: “The gap in health and social care services in England today means that families face enormous difficulties in accessing even the most basic support.

“Even when completing what many would consider to be the simplest of tasks, with three in four of those surveyed naming shopping as the most challenging task in their day, closely followed by using public transport.

“With the help of the public, we will fight for a country where disabled children and young people have the support and access to the same services and opportunities that most of us take for granted.”

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