Territory Families was unjustified in its decision to remove a four-year-old Indigenous boy from his family four months before he died, the Northern Territory coroner has found.

Key points: Lebron Martin was removed from his family by Territory Families on the assumption of "neglect"

Lebron Martin was removed from his family by Territory Families on the assumption of "neglect" His health and family responded well to community support

His health and family responded well to community support The coroner has recommended Territory Families train its staff better to help support children and families with disabilities

Lebron Martin died in the arms of his father Dwayne Roger on December 13, 2017, from complications related to a rare congenital and fatal condition, Niemen Pick Type C.

He was the second of his parents' children to suffer from the disease, with his older sister Leishana, passing away at four months old.

Lebron struggled with developmental delays and weight gain, but a coroner's report found Territory Families saw this as "neglect" and instead of providing support to Lebron's family, the Katherine boy was taken into foster care.

"When it was indicated by the Office of Disability that they could not fund or provide sufficient support, the Department of Territory Families considered the only option to be the removal of Lebron from his family," Coroner Greg Cavanagh wrote.

"In my view they were not justified in so doing," he said.

The coroner found Lebron's removal from his family was a breach of the Convention on the Rights of Persons with Disabilities.

Lebron Martin and his family were from Katherine. ( ABC News: Mitchell Woolnough )

Family 'struggled' after support withdrawn

Lebron was in the sole care of his parents and grandmother for the first three years of his life, through numerous hospital visits and surgery interstate.

He attended child care for about a year, where he had ongoing visits from an occupational therapist and was found to be making consistent weight gains.

However, as his function declined and feeding became more difficult, Lebron started losing weight and his parents failed to bring him to some clinic appointments.

The coroner found Territory Families saw his weight loss as "neglect", rather than a sign his family required ongoing support.

"Initially they were given support, but when support was withdrawn, they struggled," Mr Cavanagh said.

"Rather than being an indication that like services should be reinstated to support the family, it seems that the department believed it be a reason that Lebron needed to be taken into care," Mr Cavanagh said.

The department ultimately conceded it should have done more to support the family, but the inquest was initially told the support services required did not exist in Katherine.

"Had ongoing intensive case management and long-term respite care existed in the community, this case would have been unlikely to have required the intervention of Territory Families," a department representative said at the inquest.

The coroner found department staff sent emails on July 24, 2017, in an attempt to ask services for assistance, but they did not wait to receive a response.

A foster care placement for Lebron was found the next day.

Lebron Martin was admitted to Royal Darwin Hospital three times in one week. ( Supplied: Jack Bullen )

Mother not allowed to feed child

After an almost three-week stay in hospital, Lebron was released into the care of Territory Families on August 4, 2017.

Despite telling Lebron's mother, Kara Martin, she would have daily access to her son between 10:00am and 4:00pm while he was in care, Territory Families only facilitated three-hour visits on most weekdays.

The time was cut back because the department decided "the mother should not feed the child at all", despite hospital nursing notes reading: "Observed Kara to do the NGT feeds this morning. She did well, knows what to do."

"I acknowledge that allowing Ms Martin to feed Lebron … should have been supported by the family," Territory Families representative Karen Broadfoot later conceded.

While in care, Lebron was taken to Darwin for a week when his foster carer needed respite.

He was taken to hospital three times during that week and was admitted to Katherine District Hospital a few days after his return in early December 2017.

Lebron was in the sole care of his parents and grandmother for the first three years of his life, through numerous hospital visits and surgery interstate. ( Unsplash: Jafar Ahmed )

Lebron died in hospital nine days later.

The coroner made one recommendation after the inquest into Lebron's death found he should not have been removed from his family.