Treat disabled child properly, judge orders GN

The Government of Nunavut suffered a serious embarrassment in court last week, after a judge found that officials in two departments — Health and Social Services, and Education — caused major damage to the well-being of a disabled child when in December of 2004 they cut off all funding for the child’s therapy and treatment, including a life-giving nutritional supplement.

Justice Earle Johnson of the Nunavut Court of Justice acknowledged this as fact in an “interlocutory injunction,” a type of temporary court order, issued Feb. 10 on behalf of the child and his family.

The injunction is the latest step in a legal battle that began this past November, when the family went to court to seek a permanent order granting their disabled son “protection from the Nunavut Government” and funding to have their child educated at a special school for the blind in Brantford, Ont.

On one side of the battle sits an embattled Iqaluit family of modest means. The child and his mother are Nunavut land claim beneficiaries, and the child’s father is a non-beneficiary. Until this past December, they could not afford a lawyer to pursue their case, and relied on the child’s father to represent the family in court.

On the other side sits the Nunavut government and its well-funded legal and bureaucratic machine.

In his temporary injunction, Johnson ordered the GN to pay for a treatment plan covering the child until July of 2006, when the case is likely to be decided, and to resume financial support payments that the GN cut off in December, 2004.

Johnson’s judgment is sprinkled with scathing assessments of actions taken by GN officials in their handling of the child’s special needs, using terms like “high-handed” and “highly questionable.”

He also advised the GN not to subject people to similar treatment in the future.

“I trust that the actions of the GN, of cutting off necessary funding to the Applicants, are not replicated in the future when making these difficult health care decisions. This type of approach causes extreme stress to the individuals involved and reflects poorly on the government,” Johnson said.

The child, known as “J.S.”, was born prematurely in 1997. Though his most serious disability is blindness, the child needs occupational therapy, speech therapy, physiotherapy, vision therapy, a five-day-a-week school program and a special needs educator to help his parents work with him at home.

He also needs a nutritional supplement called Pediasure, because of his difficulties in swallowing food. Without it, he becomes undernourished and loses weight rapidly.

Between 1997 and 2000, the child and his parents received a variety of services from the Montreal Association for the Blind, and saw medical specialists in Montreal. The territorial government paid these costs, and provided various financial supports to the parents.

The boy also attended a private clinic in Montreal called La Maison de liénfance, where, Johnson said, “J.S. blossomed.”

But in March of 2004, the child’s progress ground to a halt when the GN refused to renew their contract with La Maison. That’s because GN officials claimed that adequate services for the boy had finally been created in Iqaluit.

The boy’s parents say Iqaluit service providers meant well, but were not properly trained, and that their son did not get adequate treatment from inexperienced northern caregivers.

“The parents watched these ‘appropriate’ professionals lead [J.S.] into many obstacles, such as walls and doorframes or repeatedly tripping him over mats. We saw them change caregivers repeatedly, despite expert warnings not to do so by the southern professionals,” the parents said in their affidavit.

Frustrated with the poor quality of care in Iqaluit, and fearful of their son regressing further, the parents took him — in the summer of 2004 — to the Ross McDonald School in Brantford, Ont., which specializes in helping severely disabled blind and deaf children. The GN paid for this trip, calling it an “independent evaluation.”

Staff at the Ross McDonald School then said the child could benefit from their school’s programs, and accepted the child as a student.

But the GN refused to pay the cost of having J.S. attend the Brantford school. Johnson suggests in his judgment that GN officials likely made up their minds to do this even before sending him there.

Instead, the parents tried to maintain two residences, one in Iqaluit and one in Brantford, so that J.S. could attend the Ross McDonald School anyway.

But by December of 2004, they couldn’t afford to sustain this arrangement, and were forced to move back to Iqaluit. That was when the GN inflicted its nastiest surprise upon them.

They refused to help the family in any way, cutting them off from all funding, including money to pay for the child’s essential supplies of Pediasure.

That’s because they now deemed the family to be “residents of Ontario,” even though the family maintains a residence in Iqaluit and holds Nunavut health cards.

“The unilateral denial of basic support for [J.S.] can only be seen to be a malicious attempt to punish the family and coercively assert the GN’s position,” the parents said in their affidavit.

Without Pediasure, the boy’s health deteriorated and he lost weight rapidly. As well, all the developmental progress he had made in Montreal was wiped out, and he began to regress in all areas of his development, even his physical growth.

Despite the urgent advice of Dr. Eisenbarth at the Baffin Regional Hospital, it took 26 days for the GN’s health department to approve a trip to Montreal to see a specialist, in February of 2005.

And it was only after the family began preparing a human rights complaint that the GN reinstated funding to pay for Pediasure, in March of 2005.

In his judgment, Johnson said that because of all this, he isn’t surprised that the family now believes the GN can’t be trusted.

Meanwhile, the case will resume May 27 and May 28, in Iqaluit.