“Sarah was producing a lot of mucus, but they gave her three tests which all came out negative,” says Kay.
“They regarded her as an anomaly and couldn’t work out why she wasn’t growing.”
That was in contrast to her growing file of records at Auckland’s Starship Hospital. Sarah’s situation worsened at age three when she began having violent seizures. Various tests, including MRIs and CT scans, couldn’t initially determine why.
Eventually they deemed Sarah had idiopathic epilepsy. Kay is certain that the seizures, and the medication to manage her condition, changed her forever.
“Prior to the seizures, Sarah was very bright,” she recalls.
“I used to give her puzzles with 24 or more pieces and she could put them together very quickly. After that, she’d struggle to put a basic four-piece puzzle together. The seizures did the damage.”
Medical specialists deemed Sarah had Floating-Harbor syndrome, a disorder involving short stature, short fingers and toes, slow bone development, distinct facial features and a delay in speech development. Her eye-sight and hearing were also significantly impaired.
School was Sarah’s next challenge, and the Neale family were thankful for the support she was provided throughout. Sarah eventually achieved NCEA Level 2, but life after school was always going to be a greater challenge.
“Sarah has a lot of autistic tendencies. She can be quite reclusive, she won’t start a conversation and doesn’t really go out with anyone unless it’s with the family or to work,” she says.
“She also struggles to hear, and wears permanent hearing aids. Her poor hearing has an effect on her comprehension as well, which can be a challenge when she interacts with people.
“But then she’ll surprise us sometimes too by really opening up, like offering to take a photo of a family she doesn’t know with their camera. Sarah loves photography.”
When Sarah reached 20, Kay and the family were deeply concerned. Sarah had enrolled in a photography course through distance learning, but struggled to keep up and found it too stressful to continue.
“We struggled to find anything suitable for her, so she’d stay in her bedroom day after day. Getting her out of her pyjamas to get dressed was a challenge.”
Kay approached Anne Logan at Oceania Media. With Sarah’s interest in photography and her activity on Facebook, Anne believed a media and communications organisation would be as suitable as any.
Sarah began work experience at Oceania in mid-2014, as part of the Geneva Elevator Programme, which supports people with disabilities into employment opportunities.
Sarah’s main job tasks involve loading stories online to the websites Oceania Media manages, helping with basic photography tasks such as taking still product shots and editing and resizing. She helps to package online book orders and takes the Logan’s office dogs for regular walks.
She travels to work and back each day by bus and Kay says it suits her daughter perfectly.
“Sarah is very regimented. Her alarm goes off and she’s out the door to catch the bus. She has a routine to and from work that’s exactly the same. If there is a deviation, there’s often a problem. Thankfully there haven’t been any problems with work. She just loves it.”
Anne says that although having Sarah in the office has been a challenge at times, it’s been a learning experience for the whole team and hugely valuable.
Sarah Neale is one of approximately 120 people in New Zealand with severe hearing difficulties which Geneva Elevator supports in employment.
General Manager Sarah Halliday says the programme’s success is not only based on getting people into a job, but sustaining their employment.
“Having a productive role and being part of society by being employed is what most people want to do,” says Sarah.
“For that to be successful we need to work closely with and support both the person seeking employment and the employer.”
Sarah has worked in the industry for eight years. Elevator was an Auckland-only based organisation before it officially merged with Geneva Healthcare earlier this year.
She says the range of people eligible for support has broadened over the years.
“It’s every disability you can think of, and includes mental health. A better descriptive these days would be disadvantaged. That includes young people who have had little education, a solo parent who wants to get into the workforce,” she says.
“There’s a genuine fear just going to a job interview. It’s about confidence-building and helping them prepare.”
Sarah Halliday says sometimes problems don’t emerge until after employment is secured. It can stem from fellow employees who aren’t familiar with working alongside Geneva Elevator clients.
“Our programme is based on working with the employer and employee for a minimum of six months and not just leaving them on their own to manage.
“Geneva Elevator enables people with injury, disability or health concerns to enter the workforce and gain independence by matching them with the right job; offering ongoing support to both the client and employer to ensure successful ongoing employment.”
“Having Sarah as a member of our team has sometimes been a challenge, especially with her hearing and comprehension. It’s a case of our whole team supporting her in different ways, and we’ve had to adapt how we communicate to accommodate her,” says Anne.
“But it’s also been really valuable and good for all of us. It has been awesome seeing Sarah slowly come out of her shell and we’ve all benefited from her presence – she’s always smiling and happy to be at work.”
Kay is eternally grateful for the programme Geneva Elevator provides enabling her daughter to find genuine purpose and satisfaction to her days.
“It’s been a Godsend. I know the programme can’t go on for ever, but it’ll hopefully create opportunities. My Sarah’s a special case, but a real good kid.”
About Geneva Elevator
Featured in Pacific Peoples Health
Through the Geneva Elevator programme, Sarah Neale has been an employee of Oceania Media, publisher of SPASIFIK/Pacific Peoples Health. She has endured a lifetime of challenges and for her mother Kay, seeing her daughter eagerly heading to work each day has exceeded her expectations.
As Junior Web Content Manager and Admin Support for Oceania Media Ltd, Sarah Neale has a smile and a bounce in her step around our office.
Her mother Kay can barely believe the transformation of her 21-year-old daughter who has faced life-threatening challenges from the day she was born.
Sarah, of Maori descent (Nga Puhi) was so tiny medical staff were convinced she had cystic fibrosis, a life-threatening genetic disorder which causes the production of abnormally thick mucus. It causes blockages of the pancreatic ducts and intestines, resulting in respiratory infections.