Health & Science

The Laura Fergusson Trust provided a safe haven for young disabled people – until last year when it abruptly shut up shop in Auckland. Now, members of the community are rallying for the Government to intervene in the centre’s impending sale. Matthew Scott reports. 

Sophia Malthus was just glad she didn’t have to go into a rest home at the age of 19.

Paralysed from her shoulders down after falling off a bolting racehorse, she couldn’t go home until her parents’ house was made wheelchair accessible.

Many disabled people are placed in aged-care facilities, where they may be the youngest resident by decades – often with totally different social and medical needs.

“Coming out of breaking my neck and becoming 87 percent impaired, going into a rest home was a scary thought,” she said.

But after three months in the hospital spinal unit, Malthus was able to move into a facility in Epsom specialising in housing young disabled people.

Here she was able to learn how to be disabled, keep relationships with friends in the same position, and ultimately, start to regain her independence.

“Everything I needed was there,” she said.

There were separate flats with accessible kitchenettes so the residents could maintain a sense of independence.

Ramps and automatic doors were everywhere to make life accessible again.

A special needs gym and a hydrotherapy pool heated to 37 degrees – a must for people with spinal cord injuries, who often can’t regulate body temperature.

“There were even weird gadgets to help you open milk bottles and that sort of thing,” recalls Malthus.

But since March of last year, the residents of Laura Fergusson Rehabilitation have had to find these things elsewhere, with Malthus saying half of her friends from there are now in rest homes before their time.

Members of the public affected by the closure say the Laura Fergusson Trust, which administers the facility, sprung the decision to close on residents after hiding the poor management of their publicly raised funds and now are refusing to discuss the situation.

The people versus the board

With her aunt, prominent Auckland business leader Victoria Carter, Malthus has launched a campaign to raise awareness over the fight to reinstate the centre.

This involves a petition asking for the Government to step in on the issue and a rally set for this Sunday at the trust’s semi-abandoned Epsom property.

“I want to bring attention to this issue, and I want clarity on what the trust intends to do,” Malthus said.

Families of inpatients were invited to an afternoon tea in December 2019, where the news the centre would be closing doors was dropped on them.

Carter says families were told to keep the news confidential and did so out of fear of being the first to be moved out into an unknown future.

And the trust wasn’t keeping just clients and their families in the dark.

Documents retrieved under the Official Information Act show the Ministry of Health was surprised to learn of the trust’s funding issues after it had already made the decision to close the facility and leave their government contract.

Ministry notes on a phone call between the trust and the ministry in November of 2019 say “there has been no formal approach from LFT about financial sustainability… we would have been willing to work with LFT on this. We have worked with others in the past”.

The Laura Fergusson Trust refused to comment on the situation, although remarks made at its AGM earlier this year contradicted some of the Ministry’s claims.

“We have vigorously communicated the inadequacy of funding to successive governments and various agencies over an extended period,” board chair Tim O’Brien said in his report from the meeting.

He also said the trust sought independent analysis of its financial situation and found there was no possible way forward.

However, advocates like Victoria Carter say the board has left its beneficiaries in the lurch.

“Some intellectually handicapped clients lived at the facility for more than 20 years and have now been placed in rest homes with an incomparable living experience,” she said.

She spoke specifically of a resident who went from a self-contained unit to a room in a dementia ward with heavy restrictions, a shared toilet and no fridge or kitchen – let alone the gym and pool she had access to previously.

A friend of Malthus who was moved from the facility into a rest home said people were “dying around them”.

Before it was shut down, there were 24 residents, 50 clients who would come for short-term respite care, and eight clients who received rehabilitation at the facility.

Malthus doesn’t want this to be another example of the needs of disabled people being forgotten.

“The disabled community is one of the most overlooked groups in New Zealand,” she said. “It’s an uphill battle.”

The board that doesn’t want members

When the news of the closure came out, Carter had a plan. She would join the board as a member in order to have her say and find out what was really going on.

“I lobbied people and said we should be members,” she said. These people included Sophia Malthus.

Malthus said the board ignored her application for several months despite her trying to get in touch three or four times.

It then quietly accepted the invitation but didn’t include her in any communication from the board.

“They just put me to the side,” she said. “It’s like they were entertaining me but not giving me anything.”

She wonders why the board of a charity dedicated to providing care for young disabled people would show such disinterest in her participation.

“I’m offering a unique perspective as a young disabled person who has lived there,” she said. “They should use me.”

Only two of the 22 members at the board’s 2019 AGM were disabled, notes Carter, who also voiced concern at the length of the terms of people on the board.

Board applicants organised by Carter were met with questions regarding their motives.

Carter said she paid the application fee into a bank account found on the trust’s website, only to be met with a series of questions from the board secretary asking why the payment was made and where the bank account number was found.

“Some of my friends received a legal letter questioning what other charities they were part of,” Carter said. “These are the lengths they are going to in order to block membership.

“By refusing some people as members, it means people can’t speak at the AGM and express a differing point of view,” she said.

The responsibility of charities

The controversy raises questions of the responsibilities charities have towards the people they help.

“LFT seems to have stopped acting in the beneficiaries’ best interest,” Carter said. “There are so many charities sitting on a lot of money. Who monitors them if they control who can be members?”

Charities Services general manager Natasha Weight says its oversight over charities is limited.

“We provide guidance and advice to charities on how to comply with the requirements of the Act,” she said. “Otherwise, [they] are independent, self-governing entities.”

She said two people had complained about the actions of the LFT, and the governmental body was looking into it.

“We have had helpful engagements with the Trust. However, we won’t be in a position to make any further comment until we have completed this work.”

But Carter sees the trust’s actions as an abdication of their moral duty.

“The current trustees may have a legal right to permanently sell this facility out from under those who need it,” she said. “But they do not have a moral right.”

Taking action

The Laura Fergusson Trust’s namesake was a governor-general’s wife appalled by the fact young disabled people had nowhere to go but geriatric wards back in the 1960s.

The trust was established in her name to safeguard their future.

Now the trust’s Auckland holdings are expected to be put up for sale, and Carter wants it stopped.

“The Trust may not have asked the Government to help, but we are,” she said. “None of us know when a work injury, car accident or stroke could leave us or a loved one needing the wonderful rehab that Laura Fergusson offered.”

Carter and Malthus approached local MP David Seymour, whose site was used to host the petition.

As of Monday night, 1400 people had signed the petition. 

Carter is planning a rally at 2.30pm on Sunday afternoon at Laura Fergusson Rehabilitation, saying the only way to get the Government and the trust back to the table is a show of support from the community.

“And by our community, we mean all those people who’ve benefited from Laura Fergusson, their friends, their families,” she said. “We mean all those who’ve worked at LFT and don’t want to see it gone. We mean all those who’ve fundraised to make the trust possible.”

After decades of publicly raised money and government contracts, Carter says the property is not the board’s asset – it’s Auckland’s.