Review disabled children's support, says commissioner
Ministers are being urged to review care provided for children with disabilities following research into the adequacy of support for families.
Children's commissioner for England Maggie Atkinson called the findings "heart-rending" and "disturbing".
The report suggested some families were unable to afford basic necessities for "a dignified life".
The Department for Work and Pensions said the report contained "a small sample, presenting a partial picture".
The study, carried out by the University of Central Lancashire (UCLan) for the children's commissioner, found evidence that poverty meant some disabled children were not living lives that met international human rights standards.
Ms Atkinson said the research findings were "not an easy read".
"This is about voicelessness and powerlessness, as well as about making ends meet," she said. "It's very poignant and very difficult to hear the stories.
"Money issues are very real and very challenging, but parents are equally saying they have little or no say in the ways services are planned and provided, from transport to access to youth, or play or leisure which is properly adapted for one's disability."'World leader'
End Quote Maggie Atkinson Children's commissioner for England
I would like the DWP to come and meet some of the young people, who will tell the very true story of living with a disability on a very low income.”
The research was based on interviews and group discussions with 78 disabled children and young people and 17 parents.
It was co-led by a team of 11 disabled children and young people working with the university.
A spokesman for the Department of Work and Pensions rejected some of the conclusions.
"In fact, independent reports show how we are world leaders in support for disabled people with the UK's spending on disability-related benefits a fifth higher than the EU average.
"The UK is also acknowledged as a world leader in supporting independent living for disabled people, having the best overall rating of 55 countries.
"We continue to spend around £50bn a year on disabled people and their services and our reforms will make sure the billions spent give more targeted support to those who need it most."
Ms Atkinson acknowledged the government's response, but stressed some of the "personal stories" she had heard painted a different picture.
She said: "I would like some of the officials who have no doubt written that statement to come and meet some of the young people, who will tell the very true story of living with a disability on a very low income, and then I would ask them to say that again.'Not human rights'
"There is a mum quoted in the survey, who because her child needs an adapted home, including a multi-sensory environment... was persuaded to make sure that was available.
There were accounts of some disabled children, young people and their parents not being able to heat their homes properly, afford adequate clothing and or food”
"She will be paying for it until November 2022.
"There is also a young woman going through everything that adolescence brings with it, who needs incontinence pads.
"The benefits pay for four-a-day, she needs 10. That is not human dignity and it is not human rights either."
Despite the criticism, researchers found "many examples" of disabled children receiving good care and services which they said "demonstrate how low income does not have to be a barrier".
But evidence was also found of inadequate services, compounding the problems of some low income families.
The authors said that although families with disabled children often have rights to welfare payments and practical support, their basic incomes often do not cover the extra costs of raising and caring for a disabled child.
The team analysed three United Nations treaty documents: the Convention on the Rights of the Child, the Convention on Persons with Disabilities and the International Covenant on Economic and Social Rights.
Between them these treaties specify individuals' rights to food, clothes and heating, to live independently, to be able to decide where to live, to live in their local communities and to the support and services they need to be able to do that.
The researchers found the lives lived by some disabled children and young people did not meet these basic rights.
"There were accounts of some disabled children, young people and their parents not being able to heat their homes properly or afford adequate clothing and food," said the paper.
"Some were not informed or involved in decisions about changes to where they lived.
"Some experienced delays in adaptations being made to their homes and some did not have enough space nor support for independent living."