Autistic teens fall through health care 'service gap'

Amy Jacobsen worries grandson Marsdan will not get the help he needs. Picture / Greg Bowker

A 15-year-old autistic boy with behaviour problems is being passed around Auckland's healthcare system because the Starship Children's Hospital says he has outgrown it.

Marsdan Jacobsen, of Glenfield, has needed frequent hospital care for epilepsy and for heart and lung problems since he was born 14 weeks premature in 1989.

During his last stay at Starship in August, Marsdan bit a nurse.

Last year he went through a glass door at the Arohanui Special School he attends in Te Atatu after a new teacher aide took him to the pool.

His turbulent behaviour led to Starship fitting out a room with safety glass windows for his visits.

His paediatrician, Dr Rosie Marks, said that no one in New Zealand offered the type of outpatient service to people with intellectual disabilities that her service provides to children.

Dr Marks said she continued to see patients with intellectual disabilities until they are 18 because of a "a service gap".

"It would be harsh to say that these children are being banned from Starship. I don't think that is the case," she said.

"But there is a conflict of interest between a behaviourally challenged teenager who weighs as much as the nursing staff, and the three-month-old baby in the next room who maybe has just had a delicate neurological procedure."

She has agreed to "explore options" for Marsdan to be treated at North Shore Hospital from now on because of his "challenging" behaviour.

Marsdan's grandmother and primary carer, Amy Jacobsen, says she needs to know where she can take him next time he has a crisis.

"At New Year he was quite badly ill. I didn't have any hospital to take him to," she said. "He needs to be at Starship, but not where he's unwelcome."

Marsdan, who has a mental age of 18 months, bites his grandmother at least once a year. He also bites himself when he is anxious or in pain.

His grandmother's home has been fitted with plate-glass windows and steel railings to protect electric appliances, but Mrs Jacobsen says Marsdan's hitting and biting don't mean he is angry.

"He's good here. He's gorgeous. I love him to bits," she said.

Young people with intellectual disabilities used to be cared for in a dedicated hospital at Mangere, but the hospital closed in the early 1990s because of a philosophy that people should be cared for by their families. Carers NZ chairwoman Jan Moss, whose daughter Becky also has high needs, says the parents need help.

"The idea of inclusion is great, but it's going to need quite a bit to make sustainable services available to kids like Marsdan and Becky," she said.

Deputy director-general of health Geraldine Woods said the Ministry of Health was creating respite services for people with high needs, although she did not offer changes in acute hospital services.

"To address the immediate needs, two facilities in central Auckland and North Shore will specifically target young people (aged 16 and over) with physical disabilities and high and complex needs, as well as those with Autistic Spectrum Disorder. "These two facilities will provide both emergency and planned respite care and are due to be open by the end of the month."

Another pilot service will provide support for young people diagnosed with ASD between last month and next January.

* The Ministry of Health plans to open two centres offering respite care for teenagers with physical disabilities and high and complex needs by the end of the month.

* The ministry is also launching a project next month to provide "early communication support" to prevent children with Autistic Spectrum Disorder from developing behaviour problems.