Disability support in crisis

Mandy Slade competes in boccia. Picture / Greg Bowker

Shafts of soft south light puddle on the floor of the Papatoetoe Town Hall. The blue ball lands with a leathery thunk and rolls towards the jack amid varnished timber reflections.

It's a superb shot - all the more amazing because the thrower's arms don't work. Neither do her legs, and she can't talk. But that doesn't stop Mandy Slade - with ramp and helmet wand device - bowling with the utmost athletic concentration.

Slade, who has cerebral palsy and plays in the BC3 class of the paralympic sport boccia, is hoping to make the New Zealand team going to the world championships this year.

The South Auckland Boccia Club meets every Friday.

The disabled - arriving on their own or by taxi, some assisted by caregivers, and driving in all manner of electric wheelchairs - show spirit that belies their unco-operative bodies. Barry Te Wake can't talk either, but insists we take his photo too.

The Herald is here not just for the boccia but to find out about the standard of disabled care in the community, particularly by Focus 2000, a multimillion-dollar company owned by the Cerebral Palsy Society.

Almost immediately we hear that Focus doesn't like to send caregivers to boccia tournaments, apparently to avoid paying weekend rates.

The non-profit charitable society isn't short of money, in 2004 having a cash surplus of $3.96 million plus $5.2 million in term deposits and other investments.

Yet we are told that Focus' way of avoiding sending a caregiver to help a client go to the toilet during a weekend boccia tournament is to arrange to have him cathetered.

This is the first of a string of such tales the Herald hears over the course of a four-week investigation into Focus' standard of disabled care in Auckland.

Although some expressed satisfaction with the care that they were getting and others noted that the quality had improved, substandard care was still a common theme.

We're told of caregivers stealing from their clients, about clients being put to bed early against their wishes, of clients feeling unsafe with their caregivers, of a caregiver regularly calling a client "a stupid f***ing bitch" , of caregivers photographing a client naked on a changing bench, of clients being denied food and of dangerous mix-ups with medication.

To some people, the revelations won't be surprising. The Ministry of Health compiled a list of complaints about Focus' lack of care in 2002 - some alleging deaths that could have been prevented had there been proper caregivers.

The 2002 complaints were kept secret by the ministry until last month, when a draft report and memo were leaked to the media.

The story was vigorously pursued by Radio New Zealand's Linda Clark. Initially, Health Minister Pete Hodgson said the "quality of care at Focus is no better and no worse than anywhere else in the country". But within a few days Hodgson was telling a different story: "I can no longer express satisfaction with the care provided by Focus 2000."

Focus was also in the news a week earlier when it was forced to repay the ministry $2.5 million for overcharging for its services. The result is that the ministry has ordered two reviews of Focus - covering management and financial matters and quality of care issues - expected to be completed in six weeks.

This time, will the ministry act? Many are concerned there will be another whitewash. As a former ministry official put it: "Hodgson is allowing the same people who did nothing regarding Focus in 2002 to do nothing again - to investigate and assure him that everything is okay."

On the face of it, the official may well be right. Under the Official Information Act the Herald obtained copies of the "quality audits" carried out by the ministry since 2002. They document a litany of problems in Focus homes that are lost in a mire of auditspeak which ranks progress in resolving the issues with terms such as "partially attained" and "continued improvement".

Focus comments on the audits, frequently responding "We challenge the audit rating of ..."

Focus 2000 is one of the largest providers of physical disability services - made up of residential facilities and home-based support - in the Auckland region.

The company says it provides care to more than 3500 people and has about 1000 staff. It also provides conductive education for children with cerebral palsy.

The Ministry of Health is the largest funder of Focus, and provided more than $38 million between 2001 and 2004. Other funding comes from the Accident Compensation Corporation and the Ministry of Education.

Focus is also a joint venture partner with the Helensville District Health Trust in Focus Nor-West, and has a subsidiary property development company called Colye Developmentz.

Consolidated accounts for the group of Focus companies are not made public but 2004 accounts obtained by the Herald show operating revenue of $18.32 million and a net surplus of $3.23 million.

The central figure in this story, Focus chief executive Anne Murphy, declined to be interviewed. But she did tell Linda Clark: "I feel absolutely, totally okay with the service we provide."

Murphy described the leaked Ministry of Health documents as biased and containing incorrect information. "I believe it is a scurrilous report."

She also rejected allegations of abnormal profit-taking: "Absolute rubbish." And she responded with outrage to a question about whether she was lining her own pocket.

"That is a shocking statement, absolutely shocking."

Murphy, who began her career as a nurse, joined the Cerebral Palsy Society in August 1989 after being made redundant as assistant general manager of the Auckland Hospital Board.

Her redundancy in 1988 followed an inquiry into mental health services which severely criticised Murphy and two other executives. Administrators had acted in "an ethically unacceptable manner" extracting "a huge human cost".

The report covered the closure of Carrington Hospital in the 1980s and a unit known as M3, which housed about 30 male psychiatric patients.

Murphy had brought in veteran Maori activist Titewhai Harawira to help. In turn, Harawira hired family members and other unqualified staff. There were many allegations of inappropriate behaviour, including staff beating patients.

The background is significant because Murphy maintains that what she did then was right.

Former colleagues say she felt deeply wronged by the redundancy and that it was a huge blow to her. Some say the experience is what has driven Murphy in her present iron-fisted rule of the society and the Focus 2000 offshoot she created in 1996.

One former board member said Murphy was on an ego trip and was affected by her emotional disappointment and a desire to prove she could run a healthcare organisation.

But Murphy also gets accolades, particularly for her work in conductive education and for her formidable organisational skills. As another board member put it: "Anne is a remarkable person. She is very, very astute and very, very domineering. I don't say she's dishonest at all. And I have no hesitation in saying that if you sent her to Iraq, Iraq's problems would be over in six months."

There are many who believe that in the process of achieving Murphy's grand plan, the society has lost sight of its original purpose - namely to help those with cerebral palsy.

Former society president Harvey Brunt is one who tried to get the organisation back to where he believes it should be, forming an action committee to look at ways to spend some of Focus' $9 million surplus.

For a time Brunt's wife, Jocelyn, was employed as a society field officer visiting cerebral palsy members to help them and report back on their problems and needs.

Her work put her at odds with Murphy who, as well as being chief executive of Focus, is also director of services for the society - allowing her voting rights on both boards.

It was a conflict of interest that had also gained the attention of the ministry, which was having trouble separating the governance functions of the society and its trading arm. Brunt proposed that the positions be properly separated and that Murphy be removed from her society role while continuing as chief executive of Focus.

"As far as I was concerned Anne wasn't doing her job as director of services at the CP society. Virtually all her time was spent on Focus."

Murphy was not impressed and told board members she would be visiting her lawyer if they proceeded.

The board members - relatively unsophisticated in the cut and thrust of boardroom politics - capitulated and Brunt had little choice but to resign.

The interaction was typical. Murphy, astute, highly organised, domineering - and always with just enough board members in her corner - would always win. Troublemakers were quickly isolated.

Another former society board member, Bob Atkinson, who runs a taxi business carrying disabled people, brought problems of care and abuse to Murphy and to the ministry - including an instance of a client left with a broken jaw for two days before getting treatment.

"I saw these things and became very indignant." He spoke out because after years of carrying disabled passengers he regarded many of them as his friends.

"To see your friend getting shit on - excuse the language - it was very hard to take."

It was not long before Atkinson found himself in a lonely position. "Every board meeting I went to was a war. You had to psych yourself up before you went in. The board sat at one end of the table and there was a space left for me at the other end."

Atkinson was not re-elected at the next board meeting.

That was shortly after a torrid meeting in 2002 between ministry and Auckland Health Board officials and the society and Focus boards.

Armed with a list of serious complaints, the ministry was on the verge of putting a statutory manager into Focus.

The ministry wrote in its draft report. "The material issue is that the complaints reflect a theme over time of ongoing issues relating to the quality of health care; inadequate staff cover, recruitment and training; an erosion of clients rights and issues of access and quality living."

One complainant wrote at the time. "We are becoming prisoners in our own home more and more now."

Of most concern were reports of deaths by choking in Focus houses - at least two of which, according to a former ministry employee, were preventable. But Murphy and the Focus board were ready and waiting for the ministry and came out all guns blazing at the meeting.

Former society board member Neil McCrorie recalls the occasion.

"The Focus chairman [Walt Beanland] blew his top [about what the department was inferring about the deaths].

"Walt jumped up and raved on about what a great insult this was to Focus and that unless they [the health officials] were prepared to withdraw it, there would be legal action."

The ministry backed down and chose the line of least resistance - quality audits of Focus houses. The audits show that many of the complaints about the insufficient and poor care, bad communication, lack of privacy and consumer rights abuses were genuine.

The audits then outline bureaucratic steps for remedying the situation - such as staff training and better reporting procedures.

The 2002 audits do not, however, address the complaints about deaths in Focus houses, particular those at Segar Ave in Pt Chevalier.

Ministry of Health deputy director-general of disability services Geraldine Woods says the present audit will investigate. "I have asked they [the auditors] identify who those people were and what were the circumstances around their death."

Death certificates obtained by the Herald for two people who lived in the Segar Ave houses show choking may have been involved. In one case the cause of death was said to be aspiration pneumonitis, and in the other case it was advanced airways obstruction.

But as McCrorie - whose daughter, Judith, was transferred from a Focus home and died in hospital (in different circumstances) - points out, it's hard to prove that deaths in such instances were caused by careless supervision, particularly if they are of people who have difficulty in chewing and swallowing because of a disability.

But he has no doubt that the level of care for his daughter and other cerebral palsy clients at Segar Ave and Kitchener Rd in Sandringham "was inadequate to cover the danger that was in existence. They needed proper specialist care, which they didn't get". So concerned were the parents of those in the Segar and Kitchener houses that they formed a committee to voice their concerns to the ministry.

June McCrorie, Neil's wife, says the care was shocking and her daughter's house was often filthy.

A major worry was the lack of sufficient skill to administer medication. It wasn't long before their worst fears were realised.

On an earlier occasion their daughter was taken to hospital.

"She had been given three heart pills instead of a sleeping pill and ended up with a very bad ear infection that wasn't properly treated."


Financial management questioned

The question that has to be asked is why Focus isn't spending some of its more than $9 million stockpile on improving its standard of care.

And that begs another question: How did Focus, which gets the bulk of its revenue from the Ministry of Health, manage to stash away so much cash?

The leaked report provides a possible answer - by "extracting a level of overhead from the service fee that could be construed as abnormal profit-taking".

The 2004 Ministry of Health financial audit raised the same issue, suggesting Focus was taking "high needs" ministry funds of $20 an hour but providing caregivers at $10 an hour.

Other examples in the leaked report include: "a budget-holding arrangement" resulting in a direct payment to the client of only $8 out of a total service fee of $15.45; and at times providing just one caregiver to cover nine clients in three houses, for which Focus was getting $1044 a day.

There are also allegations from clients that the rent charged by Focus of as much as $160 a week was exorbitant - especially as many were living in leased Housing NZ homes.

The large cash surplus was also noted in the ministry's financial audit: "Focus generates significant operating surpluses."

Also queried was why Focus would be lending "in excess of $1.5 million" to a subsidiary property development company, and why another subsidiary, Focus Nor West was paying out $100,000 dividends.

Geraldine Woods says that while it is prudent for provider organisations to maintain surpluses and reserves in order to manage unexpected financial shocks, the ministry is concerned at the amount Focus has put aside.

"It's a very high buffer - I don't know if they've misused my funds or not, which is really the point that we're having looked at in the financial review. I'm not sure why they want such a buffer."

Woods says the ministry's contract with Focus does allow it to put in a statutory manager, but that's a last resort.

"We wouldn't be putting in a statutory manager prior to them being able to fix the issues.

"But really if the quality of care and support is not good enough then we do need to look at other options."

The society board, recently replenished after a run of resignations, is preparing to call a special general meeting to modify its constitution.

That is in order to effect some changes in governance and to look at how its $9 million stockpile might be spent.

"The issues that the Cerebral Palsy Society faced (and continues to face) were key reasons why many of the newly appointed board members volunteered their time to address and make happen,"says society president Karl Sangster.

"We share the concerns of the members and have a very strong intent to make that difference."

Sangster says the society board has been working behind the scenes "to address some of the foundation documents and structures that have created the concerns we now face".

Many society members, especially those with cerebral palsy, are watching with sceptical interest - still hurting from how they were treated at last year's annual meeting.

Former president Brunt arrived at that meeting with a large number of proxy votes.

About 20 members with cerebral palsy, or who had family members with the condition, were also present.

Once again Anne Murphy saw them coming. Shortly before the meeting she produced a legal opinion criticising the way the proxy votes had been sought, forcing the board to declare them invalid.

Also at the meeting were new members - Focus employees Murphy had quietly been introducing into the society over several months. Unsurprisingly most of Brunt's resolutions were defeated.

In a heartfelt letter to those who had given him their proxies, Brunt wrote that what had happened was immoral.