Name Lily
Hometown Tāmaki Makaurau Auckland
Age when entered care 3 years old
Year of birth 1983
Time in care 1986 to present
Type of care facility Schools – Belmont Primary School in Tāmaki Makaurau Auckland, Sunnybrae Normal School in Tāmaki Makaurau Auckland, Wilson Home School in Tāmaki Makaurau Auckland; respite care – Wilson Centre Radical Respite Unit; service providers – Creative Abilities, SILC, IDEA Services, Totara Farm Trust, Taikura Trust.
Ethnicity NZ European
Whānau background Lily has an older sister who is involved in her care. Her parents separated when Lily was a baby.
Currently Lily lives in Auckland and is supported by her mother, Mrs NS, and Vision West.

"Lily was overmedicated until I advocated for a reduction."

My daughter Lily has outlived her prognosis and is possibly the oldest person in New Zealand with Lennox Gastaut Syndrome – a severe childhood epilepsy syndrome characterised by multiple types of drug resistant seizures. She also has cognitive impairment and autistic traits.

From the 1980s until today, Lily has suffered psychological and physical abuse from education, health and support providers she should have been able to trust. Numerous attempts to correct her behaviour and make her more compliant have resulted in both physical injury and ongoing psychological harm and trauma.

As a child, Lily was overmedicated until I advocated for a reduction. When we finally got down to small doses of two drugs, this little person woke up. She later began to walk with a specially made walking frame, and she was taught to play and sign colours.

During the 1990s, Lily attended several special units in mainstream schools, but I never felt like she was part of the school, or appropriately supported. She experienced the use of aversive practices, for example, when a teacher at Belmont Primary School (Auckland) flicked water in her face and put ginger in her mouth because she had been spitting.

At Sunnybrae Normal School, they blamed lack of discipline for Lily’s behaviour and used two teacher aides to force her – aged 10 years old and weighing about 26 kilograms – into a purpose-built cupboard multiple times per day. This was despite Lily’s doctor explaining that she didn’t understand cause and effect.

Between 1997 and 2001, Lily attended the Wilson Home School. She continued to be very unwell at times. This was often because she was in a non-convulsive status, where her brain was constantly seizing but she wasn’t outwardly convulsing. At times like this, she would become increasingly comatose and unresponsive. Sadly, it seemed her teacher preferred this situation to the more highly mobile Lily, and usually failed to report it to me.

From 1998, she also attended the Radical Respite Unit at Wilson Centre. I felt one nurse took a dislike to Lily and I understand she wrote numerous incident reports about Lily’s behaviour. Despite Lily’s caregivers denying that many of these things had actually happened, in January 2001 I was told that they were going to potentially need to use more aversive punishments and restraints to manage Lily’s behaviour. I decided to collect Lily and she never returned to the school or respite unit.

I provided full time care for Lily at home until she began attending the day programme at Creative Abilities. I was told she was having a great time doing aerobics and “other things”. I ultimately found out that she wasn’t really being supported at Creative Abilities. After she arrived, a caregiver would take her to their house, where she would play with their dog before being returned for transport home.

After determining there weren’t any providers in Auckland with the skills to provide the support Lily needed, SILC decided to set up a service specifically for her. There was a skilled team leader who was intent on supporting Lily to live the life she chose. All Lily’s staff were valued, supported and provided with excellent training.

For the first year, Lily came home so happy, and it was wonderful to see her enjoying her time there. Unfortunately, things began to go downhill after staff changes in the organisation, and towards the end of 2006, SILC announced they were pulling out of Auckland and would no longer be able to support Lily.

Taikura Trust, an NGO who were contracted as our Needs Assessment Service Coordination service by the Ministry of Health, organised for IDEA Services to take over. I withdrew Lily from IDEA Services in December 2007 after her longstanding team leader was moved to a different position while I was overseas and replaced with agency staff who had no training or introduction to Lily.

In 2008, we set up the Circle of Friends’ Trust to manage the discretionary funding we received from Taikura Trust. We rented a house and had a lovely group of friends supporting Lily.

Sometime later, there were issues with a staff member obviously using Lily’s money for her own gain, and when some staff resigned at the end of 2010, we couldn’t replace them with people who had the necessary skills. This meant I had to provide a lot of time and input into the management of her service and, by the beginning of February 2011, I was becoming ill and exhausted.

Lily had been under the Dual Disability Team since 2009 and they had prescribed an antipsychotic drug to try to stop her desire to leap out of the car when it was travelling. I later found out this was probably due to a staff member treating her badly, and her not wanting to be in the car with them.

The psychiatrist from the Dual Disability Team suggested Lily go away for three to six months to a “calm, skilled environment where she could learn to be independent from me”. Totara Farm Trust was recommended. Six months without seeing Lily wasn’t an option for us, but I gratefully accepted four weeks’ respite at one of their houses in Takanini.

Two significant events occurred during those four weeks. First, Lily managed to leave the property in the middle of the night while two staff members were asleep in the house and despite the doors being locked. She wandered down the road before the staff noticed she was missing. Some people she approached called the police, who transported her to Middlemore Hospital. When staff called the police and found out where she was, they collected her from the hospital.

Second, when Lily was picked up, she had significant bruising on her upper thighs, chest and neck. A staff member employed by the Circle of Friends’ Trust explained that a few days earlier it had been suggested to Lily’s staff to use physical restraint for behaviour management. When it didn’t work, they contacted the Totara Farm manager who sent two male staff members to take over.

The men took Lily to her bedroom and advised her staff to go the office. They were encouraged to stay there for about an hour. Over this time, they saw Lily leave the room continually and, on each occasion, be taken back by the men. They thought the men’s treatment of Lily was “very rough and scary” and felt that the Totara Farm staff appeared to be “fed up with Lily’s attitude”.

After this, Lily was afraid of men. She had always enjoyed the company of our male friends and to see her shy away from people she had been comfortable with was incredibly sad.

When we told the Dual Disability Team psychiatrist how appalled we were at what had happened, she became very defensive saying a number of her clients experienced bruising. We received a letter shortly after discharging Lily from the Dual Disability service.

Repeated texts, emails and phone calls requesting copies of the incident reports from Totara Farm failed to elicit any response. When a meeting was finally arranged by Taikura Trust seven weeks later, we were told their staff were well trained in restraint and the bruising had nothing to do with them. The Totara Farm manager delivered this information while leaning across the table and shaking her finger at us. This appeared to be totally acceptable to Taikura Trust. The meeting was incredibly stressful and I felt very unsupported and unsafe.

I reported the incident to the police but was told they wouldn’t be laying charges. An officer told me that Lily was an “unreliable witness” and couldn’t give evidence.

I also reported it to the Ministry of Health and the Health and Disability Commissioner, but they declined to investigate any further as the police had already determined there was insufficient evidence to show who caused the injuries. I’ve always been very upset that they thought this traumatic event for Lily wasn’t worth investigating further.

Since 2012, we have had seven failed providers. A clear pattern has emerged where providers believe they can provide the necessary support, but when they can’t meet their contractual requirements, I feel like we can’t continue with the service or they provide a totally unacceptable ultimatum.

After another period of supporting Lily ourselves, her seizures continued to worsen and, with very little support, I was exhausted. In 2018, I decided that Lily needed to be hospitalised. Due to my exhausted state, it was recommended I call an ambulance to transport Lily to Auckland City Hospital and go to bed.

My daughter and a friend travelled to the hospital and were told that they had to have eight security guards sitting on Lily to restrain her, and that she hadn’t received any of her medication since her arrival. They phoned me at 4am and told me I needed to come immediately, or they felt she would die.

The total lack of understanding or training to support someone in a very stressful situation who is cognitively impaired and non-verbal was appalling, and Lily was extremely traumatised by what happened. Between April and September, I stayed with her 24/7 so she wouldn’t end up with more security guards restraining her.

Vision West became Lily’s provider in 2020 and we became concerned early on when new staff were busy vacuuming and dusting but seemed anxious about interacting with Lily. We later found out that staff had responded to an ad for a home support worker. The manager seemed unable to understand the difference between supporting someone like Lily to live a meaningful life and doing a few hours housekeeping.

Since the beginning of 2022, Lily’s service has had serious gaps in the roster. All current staff are exhausted and burnt out. I am too, after 40 years of caring and advocating for Lily.

When I seriously considered finding another provider, I could see that history would only repeat itself – so I have also asked Vision West to accept an investigation into why it appears to be so incredibly difficult to support Lily successfully.

All disabled people must be able to enjoy the same human rights as every other citizen of Aotearoa. Abuse of these most vulnerable citizens must not be allowed to continue.[12]