A leading disability charity is calling on the government to increase funding for disabled children and their families in a bid to protect the rights of children against medical interventions aimed at halting physical development.
Scope launched the campaign this week in response to news that a nine-year-old American girl believed to have the mental age of baby, had undergone operations to remove her ovaries and breast buds and is receiving hormone treatment to stop her from growing up or becoming fertile.
Backed by an ethics committee, the parents of the girl – known as Ashley X – said the medical intervention was necessary to reduce Ashley’s future discomfort, reduce the risk of abuse, and allow her to be cared for at home for longer.
But Sandy Collington, Scope trustee and mother of a child who has cerebral palsy, described the idea of preventing disabled children from developing into adults as appalling.
“This is a very emotional issue and it is very sad that the parents of Ashley X felt they had to resort to these measures,” Collington said. “However, the rights of the child should not be sacrificed because the right level of support is lacking. Instead parents should be given more help so they are not put in a position like that in the first place.”
Hundred of people have already signed up to the charity’s campaign to protect the rights of children against similar treatment. Scope is also asking the Government to introduce safeguards to protect disabled children and a clear framework for dealing with ethical decisions of this complexity which takes the rights of disabled children into consideration.
Bob Benson, Scope’s executive director for community development, insisted it was up to society to change to meet the needs of the child, not for the child to be changed to fit society.
“If we are to prevent this abuse of human rights of disabled children in the future, the Government must face up to the pressure families are under and increase the money and support available to them,” he said.
The charity claims that thousands of families struggle to get financial support for a range of equipment for their children, particularly wheelchairs, hoists and communication aids. Many also have difficulties accessing respite services.
Contact the author: Lauren Revans