Even before they are born, parents envision all the possibilities for their children. The milestone markers –first solid food, first words, first steps and the first finger painting to hang on the refrigerator. And then juggling grade school with dance lessons, sports, fishing or artistic pursuits, all leading to a valued station in the world –a university student, an employee, an entrepreneur, an artist, a traveler, a volunteer, a parent, a community member. And then we wish for our children the culmination of the very best of life –a loving circle of family and friends, happiness.
And none of those hopes or dreams should be lost when our children are born with an intellectual disability. But with a recent history of removing these children from family to be placed in institutions, exposing them to horrific abuse –yes in Canada, in Ontario; depriving them of milestones and valued roles; and hiding them away, the road ahead that leads to inclusive spaces for everyone is a long and hard one.
It is parents like Debbie Tonon who have begun paving the way for a better life for young adults who experience an intellectual disability. Debbie, who works full-time, is a single mother to an adult child who has an intellectual disability. Debbie’s daughter, Danielle, requires around the clock support from her mother or a caregiver, and enjoys a job, volunteer work and an active social life. Getting there wasn’t easy though and Debbie, with the support of some professionals and other parents, had to kick away many of the barriers that might have otherwise road-blocked a meaningful life for her daughter.
Raising a child with an intellectual disability is going to be met with challenges but many supports for parents of these children vanish when the child turns 21. Now too old to attend high school, many young adults are facing a directionless day and parents are bewildered about what happens next- as Debbie experienced.
The year before almost 21 year old Danielle was to graduate from high school, Debbie met with Community Living Algoma, a service provider in Sault Ste. Marie that offers various support to individuals with intellectual disabilities, hoping to establish some sort of transitional plan for Danielle. Danielle did not meet the criteria established for potential students with Sault College’s Community Integration through Continuing Education program, and unable to work independently, Danielle also did not qualify for job coaching offered through employment services.
“After high school there was nowhere for Danielle to go every day,” recalled Debbie. “Danielle was graduating in June with absolutely no future. I was devastated. I was just scared to death. I didn’t know what was going to happen.”
Debbie met with a former employee of CLA who was aware of the service delivery gaps and helped Debbie encapsulate what meaningful life would look like for Danielle.
“I wanted her to work, I wanted her to go to school, I wanted her to be out in the community and I wanted her to have friends,” Debbie told the manager. With a reinvigorated, determined focus Debbie set her sights on the future.
It would be through a serendipitous occasion that a person who worked with Danielle as her educational assistant in high school decided to take a leave from her job. This individual approached Debbie with very good news.
“I have a job for Danielle,” she told Debbie. “I’m going to work with her for a year.”
Debbie qualified for modest amount of respite funding through the Ministry of Community and Social Services which covered the cost of Danielle’s job support.
Once received by caregivers, the stipend can be directed towards various respite activities but Debbie knew how she wanted to utilize the resource to enrich her daughter’s day. “I didn’t want to pay someone to watch Danielle to sit around and watch T.V. while I was at work. I decided we’d use that to pay for her job support so that she could go to work and do something productive with her day- something that she would feel proud about.”
Twelve years later, Danielle is still employed by North 82 and loving it. Of the owner, Mike Tsokas and his staff, Debbie remarked, “Mike and his staff have been a huge support for her. Not only when she works but also when she goes in after work there isn’t one staff member that doesn’t come over and say ‘hi’ to her. That’s full inclusion as far as I’m concerned.”
As with most people who participate in the workforce, Danielle’s networks have extended beyond the workplace. “I am so proud of her. And I’m so proud that when we go into the mall or out for dinner she knows everybody,” shares her mother.
Danielle works two mornings a week and volunteers a third morning at North 82. One day a week is dedicated to banking and personal errands but even with all of that there was still a significant chunk of her week that was left unfilled. Debbie, recognized that her daughter required greater variety throughout the week.
Waiting lists for other day programs for adults were years long and their programing was not appealing to Debbie.
So Debbie, with some encouragement from other parents, struck out to create a more meaningful day for her daughter and other adults who slip through the cracks when they age out of the graces of the educational system.
And that’s where Breaking Away comes in.
Breaking Away is a charitable, non-profit organization that provides a compliment of physical, mental and social opportunities to about 10 individuals that experience an intellectual disability. As provided in their overview, “Breaking Away’s objective is to provide support and encouragement through a program focused on individual development and integration into the community. The name ‘Breaking Away’ reflects the wish that these young adults will have the opportunity to break away from other’s perceptions of their limitation and the limitation imposed due to lack of opportunity to maximize their independence.”
Back in 2005, Debbie took a lead in organizing other parents who wanted more influence over what opportunities could be available to their adult children.
“We considered that these individuals need to have 24 hour care wherever they are and we didn’t want our children just ‘watched’. We wanted them to have a full meaningful day. We wanted them to have a day that looked just like mine and yours. That’s how I felt, that’s how parents felt,” shared Debbie.
Over the period of one year, about 8 parents worked together to navigate the onerous and unfriendly processes required to establish a charitable non-profit entity and to organize an independent Board of Directors to oversee the policies and operations of such an entity.
Located in the former Mount St. Joseph high school, funding for Breaking Away comes from the province through the program Passport Initiatives. Passport support can be used in any way that provides community engagement opportunities for individuals with disabilities. This funding, as well as any respite resource, provided to caregivers can be applied to participation expenses at Breaking Away. Beyond those financial sources, Breaking Away relies on charitable contributions from community to maintain programming.
The cost per individual to attend the program is only $10 per hour. “You can’t think of getting care like that anywhere else,” remarked Debbie.
And Breaking Away participants get a lot of bang for their buck.
Amanda Gilbraith is a coordinator with the Breaking Away program. Amanda has contributed to the development of a program that incorporates a holistic approach, emphasizing the development of social capacity, mental well-being and physical activity throughout the week.
Amanda expressed that consistency was important to Breaking Away participants. “We try to keep it as structured as possible. They need routine and they’ve come to know the routine better than me,” laughs Amanda. “They’re telling me what’s next.”
During ‘down time’ participants are refining their life skills, doing the things all of us have to do like it or not –making meals, doing the laundry, picking up groceries, a bit of ‘housecleaning’. And they spend time with their morning coffee talking about the weather and the latest gaffe from the new POTUS.
But participants keep an active schedule for the most part and are zipping around the city to attend Zumba and yoga classes which hits all the important marks in a person life- it’s fun, it’s physical and it is an opportunity to make connections in the community.
“We just started doing Zumba. They love to dance and sing,” remarked Amanda. “And when they first started yoga they were unsure but now they get into the poses before the instructor asks them to. They have amazing potential.”
Breaking Away participants are frequent patrons at the library, the local swimming hole and they attend the gymnastics club to get in a bit of fun exercise throughout the week. The group also heads out for lunch twice a week.
Community activities are not important to Breaking Away participants only. These activities are also important for communities that strive to be inclusive. Today, when we talk about inclusive communities, people with intellectual disabilities are often overlooked in that discussion. Breaking Away, by design or not, does much more than ensure that participants have a meaningful day. To become an inclusive community we need people of different abilities to participate in the community. We often recognize that a person with an intellectual disability needs to be ‘integrated’ into regular classroom settings to model the behaviour of students that don’t have disabilities. But the larger public requires exposure to individuals, like Debbie and Amanda, who model inclusive behaviour and attitudes towards everyone regardless of ability.
And the entire importance of Breaking Away, and that Breaking Away is a program worth supporting, has not gone unrecognized in the community.
And that’s where 100 Women Who Care comes in.
100 Women Who Care Sault Ste. Marie is composed of a group of philanthropic women who pool their ability to financially help 4 charities a year. Their combined effort makes a significant difference for the grassroots and charity that receives the generous donation – a minimum of $10,000.
Breaking Away was recently selected by 100 Women who contributed $14,000 to the program. This amount will be applied to two more years of Zumba and Yoga classes, swimming lessons, art therapy, electronics and equipment upgrades.
Cathy Shunock, who is a member of 100 Women, hadn’t any difficulty recognizing Breaking Away’s need for support and that they were a charity deserving of support. Cathy is not only a Breaking Away Board member, but she is also the parent of an adult who experiences an intellectual disability. She knows from firsthand experience that agencies and educational institutions tasked with providing service for those with disabilities often fall short of reasonable expectations, and that the Ministries involved often underperform in holding these entities accountable in regards to quality of service.
Cathy articulated that Breaking Away, does a fine job of providing personal and social development opportunities for 10 individuals in the community but is concerned about the many other individuals over 21 years old that have nowhere to go.
“I think the bigger picture is alarming,” remarked Cathy. “There are many young people that are coming out of high school and we don’t know what is happening to them. As a community we need greater awareness about this issue. And this should be a concern for parents that have adults coming out of high school or have their adult children sitting at home not doing the things that are happening at Breaking Away. And why isn’t the Ministry of Community and Social Services and why isn’t Community Living Algoma, addressing these issues?”
Cathy encourages parents to set high expectations for the adult children with disabilities. “Be aware that there is more out there for your children that is working. You don’t have to be afraid to come forward and say you want more for your adult child. There’s a lot of people that aren’t happy with what is provided but there are options.”
Of the Ministry of Education, Ministry of Community Social Services and Sault Ste. Marie service providers Cathy calls them to the task. “Maybe it’s time we got together to address these concerns. There are students that will be 21 years of age graduating and coming into the community that need to have some kind of programming continuing on after their schooling. So how do they address it? It’s their responsibility as well as the parents.”
Her son’s intellectual disability did not prevent Cathy from holding her son to a high level of expectation. Noting that everyone has different abilities and success is different for each person, Cathy speaks proudly of her son who completed high school, has a driver’s license, married and has held the same job for years. These accomplishments were hard earned milestones and as an advocate for her son, Cathy pushed against mainstream attitudes for decades.
“I hope that the community can open their arms to the fact that some of these adults can be of assistance to their businesses. If they are given the opportunity to be there, in the workplace, you might be surprised that they are the most loyal, most dependable and most grateful staff person you could ever want. And they are not expecting a lot in return,” shared Cathy.
Debbie’s first exposure to 100 Women Who Care happened when she attended a meeting to pitch support for Breaking Away. Debbie has since become a member of that group. “What I’ve learned is that I’ve been living with blinders on. I had only been thinking about Breaking Away for so long. There are so many other programs in the community that are needed and need help. This opened my eyes to the needs of all people in the community. That’s a great thing about 100 Women for me.”
To that Cathy added, “And I think a lot of women have felt that way. It’s creating an awareness, it’s expanding knowledge about who lives in our community and it’s a way of broadening our concerns. We are so fortunate to live in a place that cares about the people that live here and their needs.”
Want to learn more about Breaking Away? Click here.
Want to get involved with 100 Women Who Care? Click here.
(feature image left to right: Cathy Schunock, Debbie Tonon, Amanda Gilbraith)