Chesley mother Sara-Lynne Leask with her 21-year-old son Kelly Margetts.
By Mary Golem
Thursday, August 29, 2013 10:31:14 EDT AM
CHESLEY – Like any other mother, Sara-Lynne Leask of Chesley wants only the best for her son.
But ever since her son 21-year-old Kelly Margetts “aged out” after six years at the W. Ross MacDonald School for the Blind in Brantford in June, his future has been uncertain.
“The reality is there is nothing for him,” a frustrated Leask said. “There’s no money, there are no group homes, there is nothing for him.”
As a result, Leask, who works as a merchandising rep, may be forced to quit her job to provide full-time care for Kelly.
“It’s not that I don’t want to stay home with him … it’s just that Kelly needs something better than that. And financially, our family is dependent on me working. Kelly needs the interaction with other people, he needs to be with his peers and the activities and stimulation that provides. He’s a very social person, it’s not fair for him to be stuck with his mother all day. He’s 21 years old. He needs more than I can give him,” Leask said, her voice breaking with emotion.
Kelly was born a healthy baby boy, however, at the age of three months he developed meningitis. The bacterial virus resulted in a stroke and put Kelly into a coma for three days. Kelly, and his 17-year-old mother, were air-lifted to a London Hospital where they spent almost a month wondering what each day would bring. The infection and resulting stroke caused damage to the nerve which runs between the eyes and the brain, Leask explained, leaving Kelly with a condition known as cortical visual impairment or CVI.
“As a result, it requires a huge effort for him to use his vision,” she continued. “To see anything, he really has to concentrate. Just for him to focus takes a huge amount of energy. But because of the brain damage and its garbled messages, or if he is simply too tired or doesn’t want to, sometimes he will just refuse to see, while at other times he physically cannot see. The brain damage,” she added, “affected his ability to learn and so there are common instincts and everyday skills that Kelly just doesn’t have. Some things, if he is repeatedly reminded, he can do. Other things, he just can’t do. As a result, it makes it unsafe to leave him unattended.”
Since he was a toddler, Leask has listened and has done what “they” – social workers involved with government programs – told her to do for her son “to work as best we can towards eventual independence.” So Leask put Kelly into therapy as a pre-schooler, then nursery school, and elementary school, receiving help along the way to do so. “Family and friends have been wonderful, but I can’t ask them to look after him all the time either.”
When he was ready for secondary school, Leask was encouraged to put him into the W. Ross MacDonald School for the Blind in Brantford. It meant Kelly lived away from Leask, her husband Sean and their two other children, Jadzia, 10, and Kiernan, 7, during the week, but confident she was doing “the best thing we could for him, we did it.” The separation, she added, “allowed Kelly to grow up” and now that he is back living at home “that little bit of independence he had achieved is being taken away from him.”
“We were assured, all along the way, that if he just did what we were told for Kelly, there’d be something for him. Well, reality is, we did do what we were told but now that he has aged out at the School for the Blind, there’s nothing. No group home, nothing,” Leask said, her frustration clearly showing.
“There is no money to provide care for him all year long, and no group home placements available. And who knows when there will be one? There are lengthy waiting lists,” she explained, saying while her family’s social worker “has been really good” about helping them, there is little more she can do to help.
Attempts to contact the family’s social worker for comment were unsuccessful.
“What is so frustrating,” Leask added, “is that we did everything we were told to do. We believed them. We believed it when they said there would be something for Kelly. But there’s nothing.”
Leask, who has had help during the summer months to help her with Kelly, says that help ends when school resumes “so unless something magical happens between now and then”, she will be forced to quit her job to care for Kelly.
While her job involves flexible hours and she could work evenings when her husband is home to care for Kelly, “it’s still not enough”, she said, adding she still needs time for her other two children, her husband and to sleep.
“I’m burning myself out,” she tearfully admitted, “trying to do it all. Quitting my job will mean a significant reduction in our family’s income. We won’t be able to have what we have now without my income. I’d gladly at home if we could afford for me to do so, but that’s just not the reality.”
Leask acknowledges she “made some mistakes in life” including getting pregnant at 17. “But I worked myself out of that. I have a job, two other children, a husband, a house and two cars. I’ve worked my butt off and I honestly feel like all that’s been taken away from me. The whole time we’ve been told there’d be something for Kelly but we get here and there’s nothing. We were told “it’ll be fine” but it’s not fine,” she said, her frustration clearly showing. “It’s not fair to us, and it’s certainly not fair to Kelly. He needs to have as good a life as anyone else his age.”
Running out of options and desperate to get help for her son, Leask approached MPP Bill Walker in the spring to seek help.
“I had exhausted all other possibilities,” she said, adding she had investigated government programs, grants and other sources of help to no avail.
After a couple of months, she again reminded Walker of her plight and a week ago, received a letter from Walker saying he had forwarded her concerns to the Minister of Community and Social Services Ted McMeekin. She has heard nothing since.
“I’m doing whatever I can to be resourceful,” Leask said, adding she even asked her employer if there was some way she could take Kelly to work with her. “If anyone has a job for both of us, that would be great,” she said, adding without help “coming soon to our family, we’ll be facing a poverty situation. We’re worked hard to have a house, jobs, and vehicles. The reality is soon we may have nothing. What’s better, the government supporting our whole family, or finding just one place for Kelly?”
Leask says the waiting list for group home placements for people like Kelly “is miles long. Basically, you have to wait until some other person dies – it could be days, weeks or years.”
“Our family isn’t the only one in this situation,” Leask says, stressing again the need for more group homes in the province. “There are lots of people in a similarly bad situation.”
Nursing homes were often used in the past, but that option no longer exists, she said. “But knowing the desperate situation we are in, I now know why families turned to that option.”
In the meantime, Leask remains doubtful – yet hopeful – something will work out, for Kelly, for her, and for her family.
She says she will continue to pressure MPP Walker and the Ministry for their help and urges others to join her in making the concern known.
“They say the squeaky wheel gets the grease. People need to speak up – to speak up for themselves and for those who can’t – and let the government know this is not all right.”