Intellectually disabled woman suffers mental breakdown after activity centres closed

The closure of many activity centres where the intellectually disabled can learn instruments, do arts and craft, work and socialise with friends, has caused distress. Photo / Paul Taylor

An intellectually disabled woman suffered a nervous breakdown following the closure of an activity centre she attended, because of the sudden and severe disruption to her routine.

The woman, who the Herald has agreed not to name, moved home to be with her parents because the mental distress was affecting her physical health.

And she is not alone.

The IHC community says many other intellectually disabled adults are struggling to adjust to the situation, after IDEA Services closed 114 of the vocational service centres it operated across the country before the level 4 lockdown.

Under alert level 1, only 55 reopened.

IDEA Services, part of the IHC group, is conducting a national review of its services including provision of vocational services, saying after lockdown that many day activities were moved into people's homes and users were enjoying the new arrangement.

Vocational services provide the intellectually disabled with access to stimulating activities, jobs, friends and the community while also providing a lifeline to their families who sometimes get no other respite from caring for their loved one.

The IHC community objected to the way the changes were implemented saying members were not consulted, and that many users were not enjoying having the activities in their homes.

Failing to reopen 59 of the day bases had "inflicted a great deal of stress on many people, some of whom suffered mental breakdowns and needed psychiatric care" one advocate said.

A sibling of the woman who suffered a breakdown said the impact on her sister had been "horrific".

"It's basically turned her life completely and utterly upside down."

She said her sister had gone from spending five days a week doing activities all day in a designated centre with skilled carers and tutors, where she socialised with friends and familiar faces, to one activity per morning and afternoon for about an hour each in her home.

The change had disrupted the middle-aged woman's routine and security so much she began having major problems functioning, the sister said.

"To see her as she was [before she moved home] it was horrific, completely bizarre. She was saying all sorts of strange things. She was tearful and it was horrible.

"I remember thinking 'Who is this person?' She was not really there. Her whole world was turned upside down and I just think it's not right."

Her sister was usually funny with a dry sense of humour, sharp wit and highly intelligent despite her intellectual disability.

The stress of the situation resulted in odd behaviour, the sister said.

"She's forever changing things around now. She just keeps sorting out her room. She's taking all the videos from one place to put them in another place. She's very anxious.

"All the things that she loved have just been taken away, with no discussion - completely under the rug."

The woman said she wanted IHC to recognise and rectify the harm that had been caused to many in the community, not just her sister, by the closure of the day bases.

In another case told to the Herald by an IHC association chair, one of two intellectually disabled siblings living at home suffered extreme anxiety following the closure of the day service he attended.

The man was now undergoing psychiatric treatment, and his mother needed help.

"He does not understand why he can no longer take part in his 'normal' day programme," the chairperson said. "The worst part is there is no end in sight."

Other concerns included that the closures risked perpetuating an institutional model of care.

"They are together 24/7 and there is no difference between their week days and weekend days," one association member wrote.

"They have no opportunity to see their friends and work buddies from before lockdown."

IHC chief executive Ralph Jones says 83 per cent of vocational service users are happy doing activities in their home following Covid-19, but some families dispute that. Photo / Andrew Warner

Several closed day bases that were replaced with one centre, in a different location, had presented transport and logistical problems for other users.

"Due to the location it is now not possible for people to travel there independently as it is in the middle of an industrial area, quite some distance from the train and buses. They also have to cross a main road with traffic going 80km/h."

An IHC Member Council report of the concerns, seen by the Herald, said the failure to specifically engage associations to communicate with and gauge member views around the National Services Review was a mistake.

The report, which contained feedback from 18 of IHC's 33 member associations, stated there was a loss of trust in the IHC Board that had been "bubbling for some time" and had come to a head following the review.

"This can be linked to a lack of communication between the board and members and a sense that the board has little interest in informing and engaging members around matters of importance to them.

"Associations, as active members, have described feeling undervalued and unheard."

The Herald sent a number of questions to IDEA Services last week but they went unanswered.

IHC chief executive Ralph Jones previously said IDEA Services had followed government direction to reduce large gatherings of people under Covid-19 restrictions.

"Vocational services are continuing to be provided from people's homes or from day bases operating in each area to ensure people are continuing to receive services whether they live in an IDEA Services home, with family or others."

Jones said consultation on the National Services Review into provision of vocational services was completed and 83 per cent of respondents said they liked doing activities at home or from home, though this was disputed by IHC families.

The consultation report was due to be heard by the IHC Board yesterday.

The origins of IHC

The Intellectually Handicapped Children's Parents' Association was formed in 1949 by parents of children with intellectual disabilities who did not want to send their children to live in institutions.

Branches formed in 1950, and by 1953 there were 1000 members across the country. As the association grew it underwent several name changes and by 1994 it was the IHC New Zealand Inc with branches that had specific powers such as voting rights.

The branches morphed into associations of which there are now 33 around the country.

In 2005 the service section of IHC became a subsidiary called Intellectual Disabilities Empowerment in Action [IDEA] Services and in 2010 another subsidiary, Accessible Properties, was set up to continue the management of housing for people with disabilities.

IHC chief executive Ralph Jones has been in his role since 2002, and is an IHC Board member and a director of IHC's subsidiary companies IDEA Services and Accessible Properties. He was also an appointed trustee to the IHC Foundation.

In 1998 a 52-member New Zealand Council was replaced with an 11-member board.

In 2015 IHC set up a Member Council, at the same time reducing the board from 11 to eight members - who would no longer be elected but selected by an appointments committee.