Foster family fights for pay to raise child who needs 24/7 care

She's sweet like honey and fierce like a badger, they say. That's why Trevor and Erin McLellan nicknamed their six-year-old foster daughter "Honey Badger."

The girl has had thousands of epileptic seizures in her short lifetime and is mentally and physically disabled.

"She fights every day just to stay alive. She is the fiercest,most determined little girl," Erin said. "I am humbled to be her mother."

CBC has chosen not to identify the foster girl. She will be referred to asLeah, which is not her real name.

The McLellansdecided to go public after a dispute with Saskatchewan's Ministry of Social Services (MSS) over how much they are compensated to look after Leah.The parents say the government is exploiting their love for their foster daughter, while the ministry says it wouldn't be fair to other foster parents if they were to receive exceptional payments.

Quit his full-time job

An existing policy already allows the ministry to approve discretionary pay for foster parents, in order to keep their foster children out of institutions.

"Exceptional payments should not exceed half of the cost for comparable institutional care," states Section 6.4 of the Children's Services manual.

Institutional care can cost up to$21,000 amonth, according to MSS. The McLellansare not seekinghalf of that.

The couple says theywant only enough compensation to allow them to provide for Leah's specialized care without seeking outside employment, which they say isnearly impossible for them to maintain.

She doesn't know anybody's name, except for us. Except for Mommy and Daddy.- Trevor McLellan, foster parent

Leah's medical emergencies forced Trevor to miss so much work that he quit his full-time job, giving up his benefits, and moved to two part-time jobs.

Social services had providedthe foster parents with$1,900 a month for nearly six years. After their application for more compensation, ministry officials granted the couple an additional $522 a month.

The couple says they aren'table to pay the bills or support their family on that.

"The ministry counts on you keeping quiet and doing what you need to do, and struggling, and saving them money," Trevor said.

Two days old

Trevor and Erin have always dreamed of a full house and today their home in rural Saskatchewan is a bustling hub for seven children a mix of biological, adopted and foster ranging from ages three to 14.

The McLellans brought Leah home from the hospital when she was just two days old. Shehad her first epileptic seizure five months later and was diagnosed with a rare, life-limiting disease.

"We know this disease will kill her. We don't know when. She could live 10 years. She could live 10 hours," Erin said.

The couple pursued adoption for awhile, but had to abandon the idea when they realized Leah needed to remain a ward of the province to cover her expensive care needs.

Leah is now six years old, but has the cognitive abilities of a toddler. She is fed liquids through a tube in her stomach.

On a good day, she giggles, plays with puzzles and watches Dora The Explorer. She can even go to school under the supervision of a continuing care aide.

Buton a bad dayshe is unable to walk,and cries constantly. She bangs her head against the wall, eats her hairand repeatedly suffers violent seizures.

Someone must watch overLeah at all times, even monitoring her oxygen levels and heart rate when she's sleeping.

At one point, Erin was so sleep-deprived that she dozed off and missed one of Leah's seizures. She later broke down sobbing in her doctor's office. From that point on, a provincial home-care nurse has providedthe McLellanswith some relief between 10 p.m. and 6 a.m.

'She is our world'

Recorded meetings with social services case workers and directors verify that MSS has said that the McLellans do an"amazing" job.

"We couldn't turn our backs on her anymore than we could our other children," Erin said. "She is our world."

Erin admits caring for Leah canbe "scary", but both she and Trevor want to be the primary caregivers, rather than outsourcingto support staff paid by the ministry.

"We feel that shipping her off to other homes and other places of respite just so we can struggle to make ends meet with other jobs, it's hard on her," Trevor said. "She doesn't know anybody's name, except for us. Except for Mommy and Daddy.

"We've often felt that if she were to be removed from our home and just put in an institution ... she wouldn't survive."

Application denied

Erin applied for the exceptional payments in February.

CBC Newsreviewed three hours of audio recordings from several meetings between ministry staff and the McLellans.

Initially, case workers told the McLellans that they would likely qualify for more money using a formula for exceptional payments. But in June,a manager informed the McLellans that those workers made a mistake, that a formula wouldn't be usedand that their application was denied.

The executive director of Child and Family Programs,Tobie Eberhardt, stated in a letter to the McLellans that policy 6.4 is "not clear in intent and will be reviewed."

In a statement to CBC News, Eberhardt said fewer than 10 families in the province receive exceptional pay, and it's only provided when supports such as babysitting,meal preparation andhouse cleaning arenot available in the community.

Fostering isn't a job

Ministry officials said thegovernment doesn't pay foster parents enough to support a family, and that exceptional payments aren't fair to other foster parents. They also said the government won't compensate foster parents for work that would be performed by others.

It's frustrating, says Trevor, that the ministry will pay a house cleanerand nanny but refuses to pay him, as a foster parent, to do the same tasks.

The executive director of the Saskatchewan Foster FamiliesAssociation, Deb Davies, wouldn't comment on this case specifically. Davies says the group advocates for "fair and consistent" rates, and she echoes the government's insistence that foster parents are not expected to give up outside employment.

"We have many families across the province that care for medically fragile children and the ministry supports them with different services," Davies said. "If the needs are so great, then we have other community partners that do care for children with medical needs."

'It's deplorable'

A former high-ranking official in the Social Services Ministry disagrees.

Tim Korol served as the assistant deputy minister of social services in Saskatchewan in 2009. He said thatif the provincial government is truly committed to keeping children out of institutions, then that demands exceptional payments to foster parents in some cases.

"The ministry is taking ...huge advantage of this family. It's deplorable. We shouldn't stand for that,"Korol said.

Korolsays there's precedentfor exceptional payments for foster parents.

"They need to put a roof over their head. And when the care becomes such that it is interfering with them earning a living out of the home, then it's time to compensate them for the service they provide to our province in the home," Korol said. "There's a long history of doing that....The system allows for it, but the bureaucrats are blocking it."

Human rights complaint

The McLellans have filed a complaint to the Saskatchewan Human Rights Commission alleging that MSS is discriminating on the basis of disability. They argue that the province refused their application because it didn't want to pay them more to care for a disabled child.

The McLellans received a letter from SaskatchewanPremier Scott Moe. In it, he said the government takes "complaints of this nature very seriously." He assured the McLellans that officials will meet with them to try to resolve the matter.

The McLellans have limited options. They won't stop fostering Leah, even if it means they have to sell their house.

"They're banking on our love for her," Trevor said. "They're calling our bluff. They're saying we won't walk away from her. And it's true. We won't. We love her. But they count on that. That's how they exploit foster parents."