It used to take Valerie Thompson two hours to drive her daughter Rhianna to Selkirk, Man., for hearing therapy. But thanks to an innovative program, Rhianna now gets therapy in her home community of Pinaymootang, Man., about 220 kilometres northwest of Winnipeg.
"When she was about two years old [doctors] diagnosed her with hearing loss… and at 10 she was diagnosed with chromosome 12 [deletion syndrome]," said Thompson.
The syndrome is the cause of Rhianna's hearing loss, and it has also stunted her growth.
"When she turned six years old … I was told that if I wanted my child to benefit from any kind of program, that I should send her to a school off the reserve," said Thompson.
But now, through a program called My Child, My Heart, Rhianna receives the therapy she needs in Pinaymootang, a First Nation of 2,812 people.
Pinaymootang created the program in 2015 to ensure that children living with complex medical needs can receive care without having to leave the community.
Before the program, Valerie would drive Rhianna once a week to her sign language class in Ashern, Man. — which is about 50 kilometres away from Pinaymootang. But now the classes are held in the Thompson family home, which means her whole family can take part.
Thompson says the benefit of having the whole family involved in the classes is that Rhianna's siblings are now able to communicate with her.
Aside from improvements in her speech and hearing, Thompson says the program has boosted Rhianna's social skills and self-confidence, an improvement she attributes to Rhianna's respite workers.
"She used to be terrified of everything. Even when we went to the store, she would have anxiety attacks," said Thompson.
"Since we've been in the program, my child is not as shy anymore, she's learning how to be sociable … the workers helped develop her self-esteem."
The My Child, My Heart program also extends beyond the household — Rhianna receives help at school, which Thompson says has helped her excel in her classes.
Community steps up to create program
Currently there are 27 children enrolled in the program with a variety of complex medical needs, including attention deficit hyperactivity disorder, autism and speech delays, to name a few. Some of the services that the program provides include respite care, physiotherapy and sign language courses.
Pinaymootang Health Centre executive director Gwen Traverse says the program was created to ensure that the community's children receive the same level of care as children living in urban settings.
"People have assumptions that First Nations get all this free money, when in fact we're struggling," said Traverse. "Enough is enough, we need to have equitable [services] in our [First Nation] communities."
The program was given the Ojibway name Niniigaanis Nide, which translates to My Child, My Heart. The name was chosen because families in the community didn't want their children labelled as having special — or complex — needs.
Traverse says that over the years many families have come to her and asked, "Did I do something during my pregnancy for my child to be born this way?"
"I would tell them … 'You were gifted that child, and the Creator gave you the strength to raise a child with a disability.'"
Prior to the launch of the program, there were limited services for children with complex needs available in Pinaymootang. Like the Thompsons, families were stuck having to travel long distances to receive medical care for their children.
The program runs with four staff — one case manager, who is a licensed practical nurse, and three child development workers who are from the community, says Traverse. Additional workers are brought into the community when a specialized health service is needed for a child.
Currently, the program is funded through the federal government's Health Services Integration Fund, which was launched to support community projects aimed at meeting the health care needs of First Nations.
Starting in April, the program will be funded through the federal government's Jordan's Principle fund.
In 2016, the federal government promised $382.5 million over three years to implement Jordan's Principle, a rule adopted by the House of Commons in 2007 that promises equal access to health care and social services for First Nations children.
In most cases, the federal money is available on a case-by-case basis, meaning requests are submitted by health professionals working in communities to address one child's health needs. Often, those children still have to leave their communities to receive medical services.
On top of providing money to cover health-care costs for specific cases, money from the Jordan's Principle fund will go toward community-directed programs — like the one in Pinaymootang.
Despite successes, future of program unclear
Since launching, Traverse says other First Nations have approached Pinaymootang to learn how to create their own program similar to My Child, My Heart.
In fact, Traverse recently met with Indigenous and Northern Affairs Minister Carolyn Bennett to discuss the program and how it can serve as a model for other communities.
Despite the program's successes, Traverse is worried that funding could dry up at any time.
Even under the program's new Jordan's Principle funding, the community must apply annually to the federal government for continued support.
"I have to work year by year, because I'm not guaranteed funding for next year," said Traverse.
"I'm hoping [the program] is going to continue, because why do all this work if nothing's going to come out of it?"