Human Rights Decision Raises Issues for Families
By Robyn Hunt
A New Zealand Human Rights Complaints Review Tribunal decision Has established the rights of parents to be considered as paid caregivers of their adult intellectually disabled sons and daughters.
A couple had formally applied for the position of caregivers of their adult intellectually disabled son who lives semi-independently in the community. They were refused the position because they were the man's parents
They subsequently took the case to the Human Rights Commission, claiming discrimination on the grounds of family status. They won their case against IHC, the national service provider for people with intellectual disabilities. The decision acknowledged their right to be considered as caregivers for their son.
The government Health Funding Authority was also cited in the case, but because of a section in the Human Rights Act, allowing the Government to discriminate on some grounds, including family status it was not included in the proceedings. IHC argued that it had been carrying out HFA policy.
Case reveals tensions between various rights and roles
This case has raised issues which disabled people and their families, service providers, and policynakers have continued to wrestle with.
There are very real tensions between the rights of families and those of adult service users, and there are tensions between the role of providing support and care, and the role of parenting.
Families provide their sons and daughters and siblings with a context, and with love. They have knowledge about disability and the disabled family member. But there are still gray areas surrounding responsibility for decisions concerning disabled adults, and where that responsibility lies. The decisions are often about everyday things. Choice or lack of choice for the disabled person is often central.
While some families choose to support adult members with disabilities, there are a variety of views on whether or not they should be paid for doing so.
Discussions surrounding the human rights and responsibilities of disabled people often center on issues of power and control.
This issue has arisen as IHC is reviewing its philosophy and policy. The review has involved talking to service users and their families. 'We are definitely looking at rights' said a spokesperson for IHC.
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