Gabrielle has to wait for the help she needs 

If Gabrielle Jensen had been born closer to a major hospital, her disability may have been discovered earlier and treatment for her heart defect started sooner.

But Gabrielle was born on a farm outside Westport – too far away from the urgent support she needed. She is a young casualty of what we now call New Zealand’s ‘postcode lottery’ for health services.  

Gabrielle arrived early in the morning on 10 April 2013. “She was born at home. My husband had two minutes to wake up and catch her,” says Mum Sheena Jensen. 

She was taken to Westport Hospital and then, because she was struggling to breathe, on to Greymouth Hospital before finally being transferred to Christchurch Hospital that evening. The Jensens don’t know how many of Gabrielle’s health issues are due to the delay in receiving appropriate care or because she has Down syndrome. 

“There was no way of proving it because she already had delayed development,” Sheena says. “She was about a month on oxygen and had a feeding tube for 16 weeks.” 

Some of Gabrielle’s health problems are resolving. “The hole in her heart had closed by the time she was three,” Sheena says. But she struggles with language, has grommets in her ears to help her to hear, and she is on medication for thyroid problems. 

Gabrielle, 7, is the fourth of Ian and Sheena’s five children. The Jensens lived for 12 years in Westport before moving to Reefton two years ago, where Ian works for dairy farmers Stu and Jan Moir, who are long-standing donors to the IHC Calf & Rural Scheme. The fundraising scheme encourages people in rural areas to support people with intellectual disabillities, like Gabrielle.

If Gabrielle lived closer to a major centre she would have easier access to therapy, but in Reefton they are possibly even more isolated from the services they need. And so, Gabrielle has to wait.
“She didn’t have any speech therapy until she started school, and physiotherapy stopped at 18 months. It’s the same thing for anyone living on the Coast. The physio and occupational therapy is like a year’s waiting list.

The speech therapy could be more often,” Sheena says. Gabrielle has speech therapy once a month at school from a therapist who covers the whole of the West Coast.

Sheena says Gabrielle seems unable to say more than 10 words at any one time. When she learns a new word, others seem to disappear. 

She doesn’t speak in sentences but, since starting school, she is trying more often to make sounds.

“She has started signing without prompting. They get her to sign thank you at morning teatime,” she says. 

“Gabrielle started school full-time last year, but if the teacher aide is not there then they ring me up and tell me not to bring her.” Now Gabrielle’s teacher aide funding is about to be cut from full-time to 18 hours a week. 
Sheena says Gabrielle’s sister Desiree, 14, and brothers Bailey, 12, and Kane, 10, take good care of her. 

“She is the favourite. She gets all the hugs.” Desiree helps her on and off the school bus to Reefton Area School. “All the school kids look after her, especially all the little girls. They are like mother hens. The woodwork teacher made her her own little wooden chair.”

Sheena says she misses being around other families who have children with Down syndrome. “You can’t talk to other people about what supports they get. I never know what to expect.” But there are compensations in living in a small town. “I like the peace and quiet. If you need help they all help you,” she says. “In a big town you kind of get lost.” She is a young casualty of what we now call New Zealand’s ‘postcode lottery’ for health services.  

Sheena says she misses being around other families who have children with Down syndrome. “You can’t talk to other people about what supports they get. I never know what to expect.” But there are compensations in living in a small town. “I like the peace and quiet. If you need help they all help you,” she says. “In a big town you kind of get lost.” 

Photo caption: Gabrielle Jensen, with Bentley, 3, her youngest brother.

 

This story was published in Community Moves. The magazine is posted free to all IHC members.

Read the full issue of Community Moves online here.