The parents of intellectually disabled adults cared for by the country's largest disability services provider have slated the organisation in a damning submission to its national review.

The submission to IDEA Services by the Parents of Vision Impaired NZ listed disturbing experiences of intellectually disabled adults cared for by the subsidiary of IHC.

But IHC said it took its obligations seriously, striving to uphold the rights of those it cares for and took all complaints seriously.

The submission included allegations of dripping mould at an unkempt and unhygienic house, not enough staff, no quality of life, not being listened to, and concerns over funding of services.

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One parent said: "[Name] is cared for, but their life has not much more quality than that of a battery hen, to put it bluntly".

"Their emotional wellbeing is not taken care of and their [physical] health is deteriorating rather than improving."

There were concerns around the intellectually disabled being left to watch TV all day, sometimes not getting showered or a meal because a carer called in sick, that provision of basic services was haphazard and inconsistent, with parents having to step in to provide the care.

IDEA Services provides residential services and supported living for the intellectually disabled as well as vocational and day services such as swimming, arts and crafts, visiting friends or getting a job.

This year it received $284 million in funding from the Ministry of Health and Ministry of Social Development.

But in recent years the service was found to have a culture of non-compliance by the Health and Disability Commissioner after it breached the rights of a profoundly disabled boy in Napier.

Glenn and Fran Marshall, with disabled son Eamon Marshall, took complaints against IDEA Services to the Health and Disability Commissioner and the Human Rights Review Tribunal. Photo / Warren Buckland
Glenn and Fran Marshall, with disabled son Eamon Marshall, took complaints against IDEA Services to the Health and Disability Commissioner and the Human Rights Review Tribunal. Photo / Warren Buckland

IDEA Services were involved in another case with the Human Rights Review Tribunal taken by the parents of intellectually disabled man Richard Heather who had been "exited" from IDEA Services. The Ministry of Health apologised for its part in the failings, IDEA did not, instead seeking legal costs.

PVI national executive officer Dr Rebekah Graham, who compiled the submission, said IHC individualised what were systemic problems, leaving parents reluctant to speak out about their concerns because two people who did were expelled as members of the charity.

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"I think there's been a growing increase of parents of disabled older people saying, 'We're not really very happy about what's happening. This is a breach of our child's human rights'."

Another parent noted their adult child often could not attend swimming because of staff shortages.

"They don't have any activities or things they can do as there is not enough staff," the parent said in the submission.

"They are bored beyond belief ... outside activities are fewer and fewer now. Our hopes were that in the future, when we pass away, that [name] has a rich, fulfilled life, not one where they sit in a chair all day doing nothing."

Graham said where parents did attempt to talk to someone and seek change in a less formal manner, little traction was achieved.

"These experiences left parents feeling disheartened, dispirited, and that no one else cared about their disabled person."

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She said often parents chose IDEA Services because they had no other option but their experiences made them feel powerless and unheard, and that the disabled did not receive the level of care they were entitled to.

"The gradual erosion of care and services over the past decade, alongside the prioritisation of profit and money, left parents feeling vulnerable and anxious about the future for their disabled family member," Graham wrote.

"These feelings were exacerbated by a corporate culture of obfuscation and aggressive defence. IDEA Services need to change their culture, transparency and accountability if they service is to survive and improve."

IHC chief executive Ralph Jones said IHC had asked for more details about the concerns so that it can investigate, but said it had been unable to confirm where, what or when the matters may have occurred.

"This is very concerning to us as if there are any such issues for people who we currently support we would like to address them straight away.

"We take all complaints extremely seriously, investigate and have not hesitated to act when our high standards have not been met."

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Jones said IHC would address any individual concerns as a matter of priority and urgency.

"Whilst we accept that we don't always get things right in every individual case, we believe that we do have a robust high quality and safe support service framework, which we are constantly striving to review and improve."

He said there were processes in place to ensure adequate staffing.

"With regards to parents being required to step in when replacement staff cover is not available, whilst this may have occurred in exceptional one off situations in the past, this usually only occurs where the parent offers to do so and certainly should not occur at the instigation of IDEA Services.

"We, like all providers in the sector, are operating in a climate of chronic underfunding by government."

IDEA Services had recorded an operating deficit the past four years.

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Jones said the submission was one of 2000 pieces of feedback to the review, most of which were constructive and positive.

The review was about providing better services.

"The review asked people to consider the use of community hubs, more technology, more flexible transport and people doing more activities from home in our residential services (in line with what many people in our services and their families have suggested)."

No decisions had been made and IHC expected to release feedback from the consultation shortly.