Bureaucratic hurdles mean few parents get paid to care for disabled children

Lynda Stoneham, who cares for her daughter Kelly, made the original complaint. Photo / Christine Cornege.

A 13-year legal battle by parents seeking the right to be paid caregivers for their disabled adult children has ended in bitterness, with only a handful of parents being paid.

The Ministry of Health says only 121 people had qualified for the new "funded family care" by April 14 and only 97 families were actually receiving it - a fraction of the 1600 who were estimated to be eligible when the scheme was announced last year.

The scheme pays parents or other family members the minimum wage of $14.25 an hour for the number of hours that their adult disabled family members are assessed as needing paid care, up to 40 hours a week for each caregiver.

But many families have been put off by the system, which requires the disabled people to become their parents' employers, responsible for paying tax, ACC levies, KiwiSaver, annual leave and sick leave.

The disabled people are required to set up bank accounts, which some banks do not allow for people who are not intellectually competent.

Some families have been told they need internet access to operate a payroll program.

Moreover, some parents who have joined the scheme have ended up hardly any better off because their welfare benefits have been cut, and any paid caregivers who were coming into the house have had their hours cut when the parents started getting paid.

Unlike a benefit, funded family care also stops when the disabled person goes into hospital - a frequent event for many families.

Paeroa mother Lynda Stoneham, 64, who made the original complaint to the Human Rights Commission in 2001 that started the parents' legal battle, said the payment was "absolutely ridiculous".

"We got it for my daughter Kelly, who is seriously intellectually disabled. She doesn't know what a pay is, but she's my boss," she said.

The Health Ministry now pays Mrs Stoneham for 40 hours a week, but it has cut outside caregivers' hours for Kelly from 50 hours a week to 20.

Mrs Stoneham has also been forced to give up a small job looking after an elderly man next door for two hours a week because any parent receiving funded family care is not allowed to work more than 40 hours a week in total.

"I still do a bit of work for him because he's damn near 80," she said. "They said, 'You can do it for nothing, you're not getting paid for it'."

Only one other of the original seven complainants, Thames pensioner Cliff Robinson, 77, is receiving the new payment.

Two other complainants have died since the legal case started.

Another is going through the application process, one has been told she is not eligible, and the seventh, North Shore pensioner Jean Burnett, 79, has not applied.

"We have gone through all this and I think we have come out absolutely burnt and very unhappy," said Mrs Burnett.

"Although we won it all through, we still didn't get what we were after, which was the same payment that the Ministry of Health pays those who come into the home."

Hamilton family support worker Lillian Jarrett, 66, has applied for the new payment but finds it "degrading" to get the minimum wage when the paid caregiver who has been coming in to help her son Nathan, 24, gets $18.50 an hour.

The Health Ministry said 41 family carers are being paid for 40 hours a week, 21 for between 30 and 39 hours, 19 for between 20 and 29 hours and 16 for fewer than 20 hours.

Regionally, the biggest takeup has been in Canterbury (19) and Auckland (18), followed by Waikato (11), Hawkes Bay (9) and Bay of Plenty (7).

The lowest takeup is in Taranaki, where only one person is being paid.