‘We’re forgotten’: Families call on the government to enforce home-care rules

Under the Family Managed Home Care program, parents can choose their children’s caregivers. But some say that the province is limiting their options — and that their children are paying the price
By Meagan Gillmore - Published on Jul 06, 2020
As of April 1, 2019, 150 clients were enrolled in the Family Managed Home Care program. (iStock/mustafagull)

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Candice Rogerson has spent the entire COVID-19 pandemic asking her local health network to enforce a policy that would allow her to care for her medically fragile son and provide his older brother, an unemployed college student, with a job.

She’s now been asking for more than 100 days.

Rogerson’s youngest son, Tyson, 12, has limited use of his left arm and hand due to quadriplegic cerebral palsy. Legally blind, he has frequent epileptic seizures, some of which are strong enough to topple him from his wheelchair.

The Rogersons use the Family Managed Home Care program to hire, train, and schedule personal-support workers who help Tyson in the mornings and evenings. Under the FMHC program, which is administered by Local Health Integration Networks and funded by the Ministry of Health, parents choose their children’s caregivers and their schedules. This differs from traditional care, which involves a nursing agency hiring and scheduling nurses and PSWs.

“I jumped through all the hoops to get into this program,” says Rogerson. “It’s not an easy program to manage. It’s a lot of work on behalf of the family. But the reason I do it is to have the flexibility and the peace of mind.”

The Ministry of Health tells TVO.org via email that, as of April 1, 2019, 150 clients were enrolled in the program (reporting deadlines for this past year were extended because of the pandemic).

The Rogersons usually hire PSWs who work in various places, including long-term-care homes. But, to protect Tyson, they haven’t been doing so during the pandemic. Rogerson’s 18-year-old son, Liam, often helps his mother with his brother’s care. He’s strong and knows Tyson’s needs. Since his college year ended, he hadn’t been able to find a summer job — while he looks, he helps his mom care for Tyson, whom it often takes two adults to bathe. Rogerson would like to pay him for the work he’s doing. The LHIN refuses to allow it.

FMHC rules say that family members who aren’t managing program funds can be hired only in specific circumstances. A family must show that no qualified workers can be found and that all options, including traditional care, have been explored. It must also meet one of the specific criteria outlined in the FMHC program rules. Some of these criteria are: living in a rural area and having unique scheduling needs or cultural, linguistic, or religious considerations that affect whom they can hire.

The program’s rules also say that LHINs have the discretion to allow families to use program funding to hire certain family members. The Ministry of Health confirmed this in an email to TVO.org, writing in a statement: “Family and/or household members are able to provide care paid under the program under exceptional circumstances based on outlined criteria, at the sole discretion of the LHIN.” The LHIN, it says, must approve all requests for hiring family members.

The government recently waived the requirement that qualified family members must have proper insurance, a vulnerable-sector police-record check, and CPR certification before they can be hired. The exemption will last from June 8, 2020, to June 8, 2021.

The recent amendments “require updated legal agreements to allow family and/or household members of the program client to provide care to the client,” a Ministry of Health spokesperson told TVO.org in an emailed statement on June 25. On June 30, the ministry confirmed with TVO.org that the required legal documents had been sent to LHINs.

Rogerson says that she should have been allowed to hire family members before COVID-19 because she lives in a rural area. The family lives on a dirt road outside Hanover, about an hour’s drive from Owen Sound. Even before the pandemic, she says, it was difficult to find PSWs who could come to their home.

Her LHIN, Rogerson says, has directed her to consider returning to traditional care for Tyson. Under that model, Tyson would receive two hours of care a week, instead of the 15 he currently has. 

Currently, PSWs can’t work in both long-term-care homes and in private homes. This means that there are fewer PSWs available to care for medically fragile people who live at home.

“If the LHIN itself cannot fill my hours, how am I supposed to hire people right now? I can’t find anybody if the LHIN can’t find anybody,” she says, adding, “I don’t want any more money. I don’t want any more hours. I’m just asking for there to be an exception for the time that the new document has been changed.”

The LHIN, Rogerson says, has told it will review her situation and respond by July 22. “If he was a clone of himself living down the road, I would pick someone like him to give care,” she says of her older son.

Other families face similar challenges.

In Elora, Shannon Reaume and her husband have been told they can’t pay her parents to watch their four-year-old son. Lucas has congenital central hypoventilation syndrome, a neurological condition that causes him to stop breathing at night. He requires a ventilator when he sleeps. The ventilator can detach if he moves while he’s sleeping, and he could drown if water were to enter the circuit. Reaume has the same disability and required the same care at home as a child.

The Reaumes have used FMHC since 2018. Lucas has good relationships with the nine nurses on the family’s roster. “We were thriving,” Reaume says. Then the pandemic came, and the family  scaled back their nursing care. “If we were to bring COVID-19 into this house,” she says, “there’s a good chance that Lucas would not survive.”

Now, one nurse comes one night a week. Lucas stays at his grandparents’ house across the street once a week, as well. On the other nights, Reaume and her husband take turns sleeping next to their son. They keep the bedroom doors open so that at least one parent will hear if an alarm sounds to signal that Lucas’s ventilator has detached or that water has entered the circuit.

“So far, neither of us have slept through an alarm,” Reaume says, adding, though, that the risk grows each day. “That level of sleep deprivation without nursing poses a huge risk.”

Reaume, a PhD student in public health at the University of Waterloo and a member of the patient-advisory committee for the Waterloo-Wellington LHIN, has asked her LHIN repeatedly whether they can pay her parents for the care they’re providing. The LHIN has refused. On June 29, the ministry told her directly that the changes to requirements for insurance, CPR, and police-record checks apply only to PSWs, not to nurses, and that nursing hours cannot be exchanged for PSW hours.

According to its guidelines, one of the goals of FMHC is to “enable more flexible service delivery arrangements.” But, Reaume told TVO.org via email on June 30, “even though we have the highest level of need possible, there is no support or flexibility within the FMHC program.”

The recent changes apply only to PSWs or to people providing homemaking support, the Ministry of Health confirmed in an email to TVO.org. “For other types of home care providers such as nurses, many of these requirements would likely be necessary, thus already in place, for health care professionals as members of professional regulatory colleges. As a result, the ministry did not determine that an exception was required at this time,” the statement reads. “Families currently unable to find care providers through the FMHC program can contact their care coordinator and arrange to use traditional home care services.”

Families say the government has ignored their concerns for too long.

“We feel neglected by the government,” says Oula Alaoui, a single mother in North York who has used FMHC for four years to hire nurses and PSWs for her 14-year-old son, Yussuf, who has quadriplegic cerebral palsy. He can’t sit or stand independently; he has no fine motor skills. He’s fed via a G-Tube, which requires suctioning throughout the day and night. Non-verbal, he understands four languages and enjoys listening to opera, which one of his regular nurses introduced him to. He hasn’t seen his regular workers since the pandemic began.

Typically, Alaoui receives 66 hours from a nurse and 21 hours from a PSW each week. The government has refused to allow her to hire a nearby family member to help. “They have cared for hospitals. They have cared for long-term care. But we’re forgotten,” Alaoui says. “It’s as if our kids’ lives don’t matter.”

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