A Tauranga mother who cares for her two disabled adult children is questioning the Government's decision to make severely disabled people an employer of their parents or a family member.

The Funded Family Care scheme, announced on October 1, sees high-needs disabled people having to employ their parents or other close family members, as well as oversee compliance tasks, such as ACC levies and Kiwisaver contributions.

Sarah Noble, left, her mother Jenny, and brother Hayden Noble. Photo: Bruce Barnard.

Jenny Noble thinks the scheme adds insult to injury for families caring for severely disabled adult family members.

'I have to question why the Government would make severely disabled people the employers of their parents or a family member.

'How on earth are these disabled people going to manage PAYE, KiwiSaver, annual leave, health and safety; and all other employer responsibilities. It is extremely irresponsible of the Government to put the scheme together in this manner.” Jenny is the field officer for the Lysosomal Storage Disease group in the Bay of Plenty.

Her children Hayden, 31, and Sarah, 28, were born with mucopolysaccharidoses – a form of Lysosomal Storage Disease family, which is a group of more than 40 genetic disorders that result when a specific organelle in a body's cells (the lysosome) malfunction.

'It's very rare; they are the only two in New Zealand with this [particular] disease. We have care workers come in the morning and help them out with housework, or [with] taking them out into the community.

'When the care workers go home, my husband and I take over their care.”

Jenny says making a disabled person responsible for their caregiver is a 'crazy decision”.

'They have totally ignored the feedback from the carer alliance and other rare disease support groups on this matter. A more workable situation would have been that carers could have been paid directly by the Government as independent contractors.”