In Biggar, Sask., Laurie Larson has two sons with disabilities, Ben, 24, with autism and Kevin, 20, with Down syndrome. For her, the ideal solution would be to have some form of individualized funding so she could hire the supports herself.
Under that method, she would use her own money for a down payment on a house, and then help hire caregivers for her sons. This, she believes, would actually save government money.
“The only option [right now]is to go to a service provider who runs a group home, assuming you can find one with an empty bed,” said Ms. Larson. “The big thing is to try and get changes but change happens slowly.”
“Slow,” is the way Maureen Smith would describe the length of time it took to arrange support for her 41-year-old daughter, who moved out of the house earlier this month to a duplex in Toronto. Her daughter, whom she did not want named, was on the wait list for about 20 years for the 24-hour care-giving services that make living away from home possible. Ms. Smith pays for the house but the care is funded through government.
“It’s very, very difficult to get housing and to get funding,” said Ms. Smith, whose daughter is developmentally delayed, aphasic and suffers from allergies and mental health issues. “What’s expensive is staffing. It has to be seven days a week.”
It may be a while before Graham MacKenzie can get out of the house. He was born missing the right side of his brain and the structure that divides the cerebrum into the left and right hemisphere – the corpus callosum. He also has cerebral palsy.
To compound matters, he’s had two brain bleeds due to arterial venous malformations in his brain. Before those bleeds, he could ski downhill and go out by himself; today he can only walk a few steps and must always be accompanied. Like his mother, he has an effervescent personality and is social. He swims, goes to dances and takes art classes.
His mother, Susan MacIsaac, 60, bids on management consultant contracts and works from home to care for him during the 113.8 hours a week that are not funded; he has funded caregivers for 54.2 hours a week.
“My nightmare,” she says, “is that something happens to me and there’s no option and he ends up in long-term care.”
She is currently exploring a program called LIGHTS, paid for through fundraising and families, with some money from Community Living Toronto and government.
If Ms. MacIsaac qualifies, she would pay at least 20 per cent of all costs, and her son matched with someone with whom he’s compatible. Because they are splitting living expenses and care-giving costs, plus receiving government funds, it’s more affordable.
LIGHTS founder Mary Pat Armstrong said she hopes that after five years of being in the program, each family has secured funding from government or other sources. So far, 46 families have a plan in the works for housing and services in Toronto.
That is the next best option for Graham, who hearing this talk, has just looked up from his breakfast plate, now empty. When asked what it would be like to live on his own, he described it as “awesome.
“I want to be close to Mom,” he said. “But not too close.”
Graham MacKenzie’s budget
Graham MacKenzie was born intellectually disabled with cerebral palsy. The brain bleeds he has suffered have reduced his ability to walk more than a few steps. He requires round-the-clock supervision.
Following is his annual budget if he were to live away from home with a roommate and a live-in caregiver.
Rent, including his portion for the live-in caregiver: $16,800
General insurance: $1,200
Program transportation (for Graham and his portion of the caregiver’s cost to accompany him) $2,268
Clothing and personal needs $4,680
Social recreation $3,240
Contracted labour, including caregiver $53,102
Cost of wheelchairs and making his apartment accessible: covered through the provincial and municipal governments. Graham gets a new wheelchair every five years.
Housekeeping supplies $480
One-time cost to set up Graham in apartment (dishes, small appliances, kitchen utensils, bedding and towels) $5,000
Central administration, which includes the cost to administer bills, oversee caregivers and have proposals done on his behalf $4,130
Revenue $45,165 in funding from various government sources
Total Budget first year: $97,520 less Graham's revenue of $45, 165, leaving a shortfall of $52,355.
Every year after that: $92,520 less Graham’s revenue of $45,165, leaving a shortfall of $47,355.
Source: Susan MacIsaac, mother of Graham MacKenzie