For some families, funding an isolating experience
Organization dedicated to helping families discover options
By Beth Jarrell
PUBLISHED OCTOBER 7, 2014
For parents who have a child with a disability, the hardest part can be something no one expects; the difficulty receiving funding and the isolation that can come with it.
For Jane Aweay and her son Ethan, this is something she faces every day.
“There are times you are denied, there are times you are approved,” she said. “So you sit there hoping and praying you will get funding to help you do what you need to do. It’s a very isolating experience.”
Aweay, whose son needs 24 hour care, has struggled to find time to balance her needs and the needs of her child. For her, it’s a constant battle between what is best for her child and what is best for her own health, both mental and physical.
“If I get sick, he will have no one to take care of him,” she said. “I’m so tired sometimes I cannot fight anymore, which takes a toll on me emotionally. It’s not easy. It’s never easy, and no one really understands that.”
Aweay cannot work because her son needs 24 hour care. Her only option, if she needs to work, is to place him in a group home, something she was highly hesitant to do, as the amount of say she has in Ethan’s care is very small.
“It’s difficult for me as a parent. (Ethan’s) needs mean I cannot go to work, because he needs me all day,” she said. “ I have another child to take care of too, and if health wise I’m not doing too great, it’s going to be extremely difficult for me to look after them both. I’m stuck between a rock and a hard place.”
There are organizations in Ontario that are dedicated to helping families try to navigate their limited options. Partners for Planning is one. Spokesperson Susan Beayni says that most families don’t realize there are other options available to them other than the traditional group home.
“(We) believe congregating people who have similar needs isn’t necessarily what’s good for the individual,” Beayni said. “It takes away from the community being able to welcome and enjoy the wonderful individuals who have lots of things to share”
Partners for Planning believes that the option to not put a child in a group home is something that can be managed, and with an element of socialization, too. They have invented an online community for families to gather to socialize and meet other people. Throughout the year, webcasts are aired about issues families want to know more about. They encourage people to meet up and watch these together to help ease the social isolation.
“Families are exhausted, stressed and totally burned out,” she says. “There’s an isolation that can come with this, because if they want to go out they need to find someone to look after their son or daughter. We try to get them to talk about this, even if it’s online only.”
For most of these families, it’s an added complexity due to the level of their child’s care. The higher the number assigned to the child, the more care they need, and therefor the most social isolation there is for families.
“The numbers go from levels one to level five,” she said. “ The cutoff for group home funding comes at level three. That means 24 hour care.”
According to Scott, the process to decide the levels is not easy. Applicants for funding must go through a process to prove their disability, including an IQ test, a diagnosis, and a visit from social services.
“Social services has to do a study on the individual,” Scott said. “They fill out a sheet based on the person’s ability to do things, how independent they are and how much help they need.”
Scott adds that levels four and five are considered ‘complex’ and as such the funding pattern changes- although they receive more funding than the other levels, it still doesn’t cover full expenses.
Ethan, Aweay’s son, is considered to be a level five. She has recently placed Ethan in a group home, as the financial strain of trying to care for her child 24 hours a day while also caring for her able-bodied child was too much.
“I have no other option,” she said. “ I wish I did, but with this system, there is always a road block. You just have to hope that someone will finally listen to you.”
A chart outlining the different levels that are used to classify individuals with special needs to determine the funding they can recieve in Ontario
CHART BY BETH JARRELL