Parents fight for disability rights

THE Government must change the law to allow parents of children with intellectual disabilities make decisions on their behalf, the National Association for People with Intellectual Disability (NAMHI) has said.

Under existing law parents have no legal entitlements to make any decisions on behalf of intellectually disabled children over the age of 18.

Speaking at the launch of a discussion document on the issue yesterday, NAMHI president Jean Spain said parents were left in an unfair position.

“Parents and service providers have no legal authority to make such decisions. They are left in the totally unsatisfactory situation where decisions have to be made but there is nobody with authority to make them.

“A person with an intellectual disability may be denied medical treatment which would be beneficial but is not absolutely essential because there is nobody with authority to make a decision,” she said.

According to NAMHI, legal problems frequently arise in everyday life including the management of finances and property, problems with medical consent and sexual relationships.

Ms Spain said many parents of intellectually disabled children remained unaware of the legal implications of their situations.

“It came to me as a great shock that I had no right to make decisions on behalf of my daughter she said.

Ms Spain said the law failed to take into account the many practical difficulties encountered by parents of children with intellectual disabilities.

“This creates major practical difficulties for parents and service providers. In general in Ireland, an adult is a person who is aged over 18 years. Adults have the right to make decisions about their lives.

“People with intellectual disabilities have the same rights to self-determination as everyone else. However, they may not have the capacity to make certain decisions,” she said.

Addressing yesterday’s launch, solicitor John Costello criticised the Government for not reassuring parents of disabled children that in the event of their death the state would look after their children.

“It would not be difficult for the Government to make a public statement to tell parents of children with intellectual disability that if the parents become ill or die, the state will step in and look after their children.”

Mr Costello suggested one avenue for legislation would be to nominate a guardian for disabled children with responsibility even after the age of 18.

“You have guardianship of a child under the age of 18 but there is no legislation for guardians after 18 even if they have an intellectual disability,” he said.

Frieda Finlay, author of the NAMHI discussion document, said not enough Government time was being dedicated to legislation aimed at improving the rights of the disabled.

“Saying you don’t have time for something is the same as saying you don’t care enough,” she said.

Junior Disability Minister Tim O’Malley, who represented the Government at yesterday’s launch, said he would refer the document to his colleagues in the Department of Justice.