Disabled teenager Jakob Tindle, from Taupō, has a rare genetic condition called distal 5q deletion syndrome and needs help with "everything". Photo / Supplied
A disabled teenager with the developmental age of a 13-month-old has been living in Rotorua Hospital for more than five months after his mother had “nowhere else to turn” for help.
Taupō mother Melissa Humphrey told the Rotorua Daily Post she admitted her 17-year-old son Jakob Tindle to Rotorua Hospital on September 12 after his behaviour became “very unpredictable” and endangered the family.
Jakob was diagnosed with distal 5q deletion syndrome, a “very rare” genetic condition, shortly after being born.
He was non-verbal and needed “everything” done for him.
Humphrey said he had always been a “happy boy” before his behaviour started changing last year.
She lived with her husband Ryan, Jakob’s stepfather, and their 9-year-old daughter Luuka.
“We can’t control him at home, he’s too aggressive with us.”
Jakob began “attacking” her and would also hurt himself.
Luuka became scared and was “locking herself in her room all the time”.
Before admitting him to hospital, Humphrey contacted “every agency” she could think of.
She was told “he was too young for adult disability services and too old for child-based ones”.
With “nowhere else to turn”, she admitted Jakob to hospital.
“I had to ... make a choice which was really, really hard.”
Humphrey said Jakob had been living in an adult medical ward, which was a “completely inappropriate environment”.
He had “limited movement” outside his room, no peers, a broken TV, and “constant exposure” to death and sickness.
“He’s almost imprisoned”.
She said a healthcare assistant was always with Jakob and she was thankful the health system had helped.
The family visited Jakob every two to three days.
“You’ve got a little boy sitting on a hospital bed that doesn’t really understand why he’s there – he’s not sick. And he’s looking at the door to see if someone he knows ... will walk through the door ... it’s really, really sad.”
Humphrey emailed the disability issues, health, and children ministers on February 4, pleading for “immediate, cross-ministry action” to secure a safe, residential home for Jakob in Taupō.
She wrote Jakob had “fallen into a gap” between the three ministries and the consequences had become “unbearable” for Jakob and his family.
Humphrey did not believe it was an option for Jakob to return home with more support because of his unpredictable behaviour.
“I’d love him to be in Taupō, maybe in his own house with carers where we can still obviously have daily involvement.”
Humphrey said Oranga Tamariki connected her with a service provider on February 16 that could look at Rotorua housing options for Jakob.
However, this was likely still “months” away if funding was approved, caregivers were recruited for, and an accessible home was found.
She said Jakob would become eligible for Government-funded residential housing upon turning 18 in June but she wanted a solution faster.
Health New Zealand Te Whatu Ora Lakes District operations group director Alan Wilson said it was committed to providing safe, ongoing care to all inpatients.
He said public hospitals were “often an interim safe option” for complex patients requiring specialised residential care placement in the community.
Wilson said Oranga Tamariki was responsible for placement of people younger than 18 in community-based care.
The Ministry of Social Development’s Disability Support Services (DSS) was responsible for commissioning and funding of residential support services for disabled people older than 18.
He said it remained committed to working with whānau, Oranga Tamariki and DSS to secure safe, community-based placements for young patients “as soon as an appropriate option” was arranged.
Wilson said ward placement decisions were made case‑by‑case, accounting for the safety and wellbeing of the patient and other inpatients. Children under 15 were generally admitted to the Children’s Unit.
“However, there are times when it is safer to accommodate older children (16-18) in other wards, especially if they display unpredictable behaviours.”
Wilson said it knew social support agencies often faced challenges in finding suitable accommodation for high-needs people.
“We also recognise that hospital environments cannot fully replicate the developmental, social and emotional supports provided in a specialist community setting.”
Oranga Tamariki north tamariki and whānau services national commissioner Alison Cronin said it worked with health and disability services to support disabled children.
For Jakob, care options required a service provider that was Oranga Tamariki and DSS provider-approved to ensure he did not need to move homes when he turned 18.
Cronin said it was working with whānau and meeting weekly with DSS and fortnightly with Health NZ to ensure “a joined-up approach”.
“We appreciate the current situation is not an appropriate long-term solution, but at the forefront of all decision making is ensuring [the immediate safety of] this young person and their whānau ... with the resources we have available.”
Cronin said people under 18 with complex needs and not yet eligible for adult residential services could either remain at home with support provided or have “a range of care options offered to them”.
If the young person required specialised out-of-home care, Oranga Tamariki worked with whānau and other government agencies..
DSS commissioning and funding general manager Catherine Poutasi said it knew this was a difficult time for Jakob and his family.
“It should not have taken this long, and we acknowledge both their frustration and the impact this is having on them.
“We are working together with Oranga Tamariki to find a provider that supports his needs.”
Poutasi said the Needs Assessment Service Co-ordination agency (Nasc) advised it was working with Oranga Tamariki and potential providers to confirm a suitable residential option for Jakob.
She said DSS was funding in-home care support for the teenager before his admission.
Jakob would become eligible for adult residential support services at age 18, at which time DSS would become the lead agency for residential support.
“We will continue to work with Oranga Tamariki and the Nasc to support him, and to ensure continuity of support through his transition to adult services.”
Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.