Carers have told of their despair trying to access home care packages for elderly people and then seeing their taxpayer subsidy eroded by administration fees.

Raelene Ellis, a Queensland lawyer based on the Sunshine Coast, gave evidence at the aged care royal commission at a hearing in Adelaide on Monday.

She cared for her mother Terri for more than two years after her dementia diagnosis but struggled

to obtain a higher level of home care support.

“Someone shouldn’t have to be told ‘when the next person dies you can get help, but until then tough bickies you can’t’,” Ellis told the hearing.

When her mother was finally given a level-four package, it only amounted to nine hours of care a week after the provider charged 38% in administrative fees.

“Where’s the money going? $50,000 should not translate to nine hours of care,” Ellis said, estimating that $20,000 of her mother’s package was being eaten up by fees.

“It’s being wasted away,” she said.

Ellis cited examples of alleged rorts including the care provider’s $25 handling fee to book outsourced gardening and podiatry services for her mother.

She also called for a legislative change to allow elderly people receiving respite care to be able to go to hospital without losing their temporary place at a nursing home.

Lynda Henderson, who has been caring for her friend Veda Meneghetti, leaves the aged care royal commission. Photograph: Kelly Barnes/AAP

Earlier the commission heard from Lynda Henderson who has been caring for her friend, the rock musician Veda Meneghetti, in regional NSW.

Meneghetti, 68, was diagnosed with early onset dementia six years ago.

Henderson said people with that diagnosis go through the “deepest and darkest depression”.

Meneghetti’s home care provider was initially taking 34% of the package in management fees, although that had now fallen to 14%.

Henderson criticised the quality and training of staff who the home care provider sent saying they had inadequate knowledge of manual handling and other occupational health and safety practices.

“Veda resented that, and I did too. What are you doing sending us in people who know nothing at all?” she said.

The hearing was told there was no registration and no regulation of the home carer workforce.

According to the federal government’s latest data, the waiting list for home care support has reached 128,000 people.

The hearing was told people can be waiting up to 24 months to access home care packages.

The government has announced an extra 20,000 packages since last December.

About 175 packages are released a week.

There was an average underspend of $6,000 a year and the taxpayer money “effectively lays idle” with the care provider.

Among the most common complaints about home care were excessive fees.

The hearing was told 99/100 of the biggest aged care providers had submitted requested information to the royal commission about abuse incidents and substandard care.

The hearings in Adelaide continue all this week.