18 Jul 2019

The state house hurting a severely disabled teen

From Checkpoint, 5:09 pm on 18 July 2019

The parents of a severely disabled teenager, who say they've been waiting seven years for a fully accessible state house, say their son is suffering and he's unable to live with the dignity he deserves.

The 19-year-old is unable to speak, is blind and has spastic quadriplegia, which means he can't walk or go to the bathroom by himself. He is fed through a stomach tube and needs around-the-clock care.

The teenager, who Checkpoint will call 'Hami', uses a wheelchair and needs to be lifted by a hoist. But while his home should be his sanctuary, it's more like a trap.

His wheelchair is unable to manoeuvre its way through the Mangere Housing New Zealand (HNZ) house he and his family live in, and the hoist doesn't fit in all the rooms its needed in.

As a result, the family can't have meals together, and can't easily bath Hami - who is unable to clean himself.

Advocates say HNZ and Ministry of Social Development (MSD) - which manages the social housing register - are breaching his basic human rights, and urgent action is needed.

Hami's father - who gave up work to look after his son full time after his wife had major back surgery - said life was difficult, but it would be easier if their home accommodated their needs.

"We need a good house enough for my son. It is very hard to do everything to do inside here. It's hard for me, hard for my family, hard for the support workers."

HNZ said it widened some doors, but this house is still squeezing Hami out. The family wanted to be able to eat together around the kitchen table, but something which should be simple was impossible.

"It's so sad, because we want the family together, not half of the family and one's not there. It's not good for the family," Hami's dad said.

Born at just 25 weeks, Hami has spastic quadriplegia cerebral palsy, global developmental delay and severe curvature of the spine. He suffers seizures, and his hands and feet are permanently clenched and twisted.

He is utterly dependant on family and caregivers and they'd like to depend on his wheelchair and the hoist, but the house wasn't set up for that.

"It is my job to lift my son cause the hoist can't fit inside the room… it can't fit in the bathroom and not enough room in the bedroom."

The old-school, traditional state house has a long, slim hallway with rooms off either side. It bears the scars of an ongoing battle: wheelchair v house. Wound marks line the walls, just as bruises line Hami's legs and feet.

Latu, one of the South Auckland teen's caregivers, points out Hami's blackened, departing big toenail.

"We have to be aware how Hami will stretch his body, otherwise he can kick the wall, that is what caused the bruise on his toenails and bruise on his legs."

The family gets up to three hours a day carer support and struggles on a benefit. Checkpoint was there as Latu and another caregiver lifted Hami into a bath bed - a cross between an elevated mesh sun lounger and a hospital gurney.

He is covered with a towel as his carers manoeuvre him out of the bedroom and down the narrow hall to a very small bathroom, juggling the bed while gently tucking his feet in, protecting jutting elbows.

HNZ has converted the bathroom to a wet room, but it's still tiny, leaving no room for the hoist - which is supposed to do the heavy lifting. 

Once Hami is dried and dressed again his carers rub his limbs to warm him up - the house is cold, with just a small fitted heater in the lounge.

The bath bed, that is tinged with mould despite everyone's best efforts, is returned outside on the wheelchair ramp.

Latu breaks into tears as she explains how the home doesn't allow Hami to live with the dignity he deserves. 

"It upsets me… to see our people struggle, and that is the goal of our country to take care of the disabled, the elderly.

"We hope we can have a house, a place, have an open bathroom, so we can turn on a heater inside, leave his clothes there, dry his clothes, and for us - the support workers and the parents - to use a hoist, to bring him in, put him in a big bath, to shower, dry himself, do everything, before we go back to his bedroom."

Hami can keep going to his special school until he is 21 but after that he'll be spending a lot more time in this unsympathetic house. But Latu said life inside the home was an extremely limited one. 

"There is no place, no open place for Hami to look outside to the world and enjoy his life." 

Advocates plead for urgent action 

Social worker Alastair Russell, who is working with the family, said they urgently needed to be moved into a fully accessible home. 

"The potentials for infection from the equipment, which is left outdoors because of a lack of space, the basic safety issues in terms of lifting a young man of his size, doing that regularly, without the equipment.

"You can't use the equipment, because the house isn't big enough. It's a perpetuating circle of risk which needs to be addressed."

Both MSD and HNZ needed to "get their act together," Mr Russell said.

"This is absolutely appalling. It is completely unacceptable, it is not OK. It hasn't been OK since day one and seven years later it is still not okay.

"When do we as a society accept our responsibilities to actually provide for those people who have the highest levels of need."

Hami's occupational therapist has also pleaded for urgent action. They wrote to HNZ in May reminding the ministry that in 2012 Hami's house was identified as "no longer meeting Hami's needs" and that HNZ agreed at the time that the family needed be rehoused.

The same letter said care tasks were being carried out in a totally unacceptable and unsafe manner and the house didn't fit equipment vital to Hami's health, therapy and keeping him out of hospital.

MSD declined an interview, saying it's only been managing the social housing waiting list since 2014 and the family's case predates that.

It said in a statement the family's priority for a housing transfer has now been raised from A10 to A18 - just two spots from the top priority of A20. 

Checkpoint asked for the specific date MSD bumped this family up the priority list and the ministry confirmed it happened on 16 July - the day we started asking questions about this family's case.

But MSD later changed its original statement, saying it did another assessment in May and moved the family several steps up the priority list - and only jumped them one spot following our questions.

MSD figures show of the more than 11,000 people on the waiting or transfer list for state houses, 556 - or five percent - of those households need a modified or accessible house. It said it understood this was a difficult situation and along with HNZ it would continue to support the family. 

HNZ hasn't responded to Checkpoint's request for an interview. 

In written answers to questions, it said the family's restricted in where it can live because of school and health needs, and a lot of consideration was being given to finding a house that met their needs into the future.

It said it understood an occupational therapist visited the family yesterday, but the family says no such visit occurred.