Matt Swan is a single parent living just north of Toronto with his daughter Leah, who will be 21 in October. Leah was born with spina bifida and hydrocephalus. She uses a wheelchair, is fed by a tube, and has a urinary catheter. At age 16 she was diagnosed with autism.
From day one, Swan knew that Leah would have a disability, so he spent a majority of his time creating and cultivating a support network for their small family unit.
“I’m a single parent, too, so for me a support network is very, very important. It’s doctors, it’s nurses, it’s a personal support worker to come into the house every once in a while. It’s respite care,” Swan says. “Then, the instant Leah turned 19, all of that’s gone.”
Swan likens the transition to “falling off a cliff.”
After Leah turned 19 in 2017, Swan booked her for respite in November and in January. She went for her November respite, but about two weeks prior to her January stay, Swan received a call saying that they wouldn’t accept her because she had aged out. Swan had put down a non-refundable deposit of about $500 on a gala with his girlfriend, a rare occasion for him and what he says was “my one time to be able to get out for a weekend.” Without warning, he had to scramble to find adult services and respite nearly one week beforehand.
The financial repercussions of a lack of respite for adults are substantial for families. Families are already paying between 2.5 to 20 times the amount of medical costs alone for their child — depending on individual needs — compared to able bodied children. Parents also experience far greater absenteeism from work, or lost employment altogether, to stay home and care for their child in the absence of respite. Despite this, access to respite is near impossible because of long waitlists.
A shortage of respite centres leads to a bottleneck effect, leaving adults with developmental and medical disabilities without access to community supports and services.
According to the Ombudsman’s report, a senior Ministry official said: “unlike other social service areas, residential and other support programs for adults with developmental disabilities evolved through grassroots efforts of parent groups and advocates in response to concerns with provincially-run institutional care.”
That’s what happened in rural Southwestern Ontario. Natalie Steenstra, respite coordinator for the Huron Respite Network, says that a lack of facilities has led to a “host family respite” model, whereby families in the community take in someone for one weekend a month paid by their network.
“We received a Trillium Grant last year in hopes to grow our program, to increase our host families, they have to do a full home study similar to what you would do for a foster family through Children’s Aid Society (CAS). So that costs money,” Steenstra says. “Hopefully in those tiny villages in Huron County, we can find a family in each one that would be willing [to be a host family], then families aren’t having to travel because obviously transportation is a big issue for people.”
Huron Respite Network is located in in the rural town of Clinton, Ont. with a population of about 3,200 people. A network of 13 different agencies came together 20 years ago, with varying specialized skills, to create one umbrella network meeting a variety of needs. It provides respite for transitional age youth and adults to give families a break.
“Then we sit down with them and create a respite plan specific to the needs of that family,” says Steenstra, explaining how the model functions to meet independent needs case by case.
In about 2008, the Southwest Region mobilized to create the “ideal model” for respite, which is tailored to the specific needs of each family, Steenstra explains. “It is consistent, periodic, and provides that time for them to be resilient, to get rest,” Steenstra says. However, she admits that as a small organization, this idealistic system can serve only a limited number of people.
“For the entire county, we serve about 120 families for respite, that’s all the capacity,” Steenstra says. They provide respite for anywhere between 25 to 35 adults throughout the year, and the waitlist from Developmental Service Ontario (DSO) is over 50 people.
“So unless somebody passes away or receives a huge amount of Passport Funding, or gets a residential spot in like a group home with community living, then we never get openings.” This is mainly because once an individual receives money from Huron Respite they receive it annually and become used to it. Steenstra says that if this regular funding were to be taken away and given to someone else, their life would “fall apart.”
However, Steenstra concedes that this community-focused solution probably wouldn’t work in a large urban centre, but only a small rural community, which has established trust and neighbourly relationships.
The Ontario government tried to grapple with solutions for respite gaps more than five years ago.
So, in October 2013, Ontario’s Legislative Assembly formed a Select Committee on Developmental Services to put forward recommendations to the House “with respect to the urgent need for a comprehensive developmental services strategy to address the needs of children, youth and adults in Ontario with an intellectual disability.” After hearing 140 presenters at 14 public hearings, and over 300 written submissions, The Committee released a report in 2014.
“Presenters described serious barriers to support across the province including long waitlists for many services,” the report says, listing: “repeated, onerous, and invasive assessments; the abrupt termination of children’s services at the age of 18 and school-based services at age 21; unmet health needs due to inadequate primary and dental health care; and a serious lack of services and supports in northern, remote, and First Nations communities” as leading concerns.
The most common concern was that individuals and families were able to access assistance only once they are in crisis. However, then someone else is pushed further down on the waitlist, a cyclical issue. So, the committee called on the government to eliminate existing waitlists providing the right to “appropriate and timely supports and services throughout their lives.”
According to Steenstra, while their agency does a lot of work trying to help children get respite and build relationships in the community because “the dollars are there for them,” once they transition into adulthood they become completely cut off and go into crisis. “All we can do is tell families to call their MPP, call the DSO, call the Ombudsman…there’s nothing we can do.” They have no authority over choosing who is allowed back through their doors into adult respite after aging out.
As if this isn’t enough, Steenstra says that the cost of professional respite continues to increase. “Because of gas, (getting from one part of the county to the other can be over an hour drive), respite providers are requesting a higher amount,” Steenstra says. “All we can do is decrease the hours families receive to increase the hourly rate.”