In the opinion of the Ministry of Health, parents, who have a son or daughter with a disability, do not provide unpaid disability support but give care through “natural family support.”

A group of parents, alongside their dependent sons and daughters, are challenging this official opinion and have taken legal action against the ministry. They maintain that the ministry’s policy is flawed and discriminatory. Parents who act as caregivers simply want to know why they can’t be paid for the support they provide, as they carry out the same tasks as any official disability support service worker. In fact, they would argue, they do a superior job because they know, all too well, the wants, desires and needs of the family member.

Quite some time back Stuart Burnett made a decision to stay living in his home environment. The option of living in a residential environment was not for him. The quality of such places was too much of an unknown. He discussed the situation with his mother Jean Burnett who agreed that the home environment was the best option. They went through a period of trialling official caregivers with varied success. Like most people they found the biggest drawback, when using agency care, is the transient nature of its workers. The general feeling is as soon as everyone is feeling comfortable with one another the caregiver leaves and the whole process of personal care starts again. After many unsuccessful trials, Jean, once again became Stuart’s sole caregiver. However she was still up against the government policy, which states “We will pay your neighbours but won’t pay family members,” to provide support for your son.

Jean first approached the Ministry in 1996, requesting payment for the support she provided. She got knocked back. The rejection continued until she and Sue Atkinson approached the Human Rights commission four years ago. The commission saw similarities in several other registered complaints that had arrived at its doorstep, over the same period of time. The HRC agreed there was a strong and valid case to answer and supported its decision by paying for lawyers to represent the families, in court. As we all know the wheels of justice are slow to turn but finally on 3rd September seven parents, plus two dependent disabled adults have their days in court.

The days have turned into weeks, and there have been many interesting developments. The Disabled Persons Assembly have opposed parents as paid caregivers as it fears some disabled, cocooned in such a situation, will miss out on life experiences. During court proceedings parents have been asked if they would object to being monitored if they became paid caregivers.

“I would certainly have no objection of being monitored. In fact I would expect to be monitored,” said Peter Atkinson.

“Surely when taking care of disabled people who have high 24/7 needs, the choices need to be varied and flexible, said Jean.

The hearing is expected to last another two weeks.

Ross Flood- Editor
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Papatoetoe
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Phone/Fax (including answer phone) (09) 278-7106
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