Like too many young people on the autism spectrum, Nazarenus Rimando struggled with the transition from high school to adulthood.
After failing most of his college courses in computer repair maintenance, he retreated to the family’s Scarborough apartment, where he grew increasingly withdrawn and depressed.
Rimando’s mother Maria, who searched frantically for help between shifts at her factory job, says it “felt like watching a slow death. It was heartbreaking.”
The turning point came in the spring of 2016 when the provincial Developmental Services Office suggested the family try independent facilitation, a service that since 2015 has helped more than 1,700 young people like Rimando create a meaningful adult life.
Through independent facilitation, Rimando was able to re-enrol at Centennial College, start volunteering with Habitat for Humanity, join a local martial arts gym and even learn how to sail a tall ship.
But the Ford government decided late last year to axe the $3.1 million demonstration project March 31. And now the Rimandos and other families across the province are mobilizing to save it.
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As part of an online campaign launched this month, more than 40 individuals and family members have posted poignant videos and testimonials about how the program has changed their lives. Dozens more are contacting their MPPs for support.
Provincial NDP social services critic Lisa Gretsky (Windsor West), who met with families in her riding Thursday, said she is shocked Ford’s “government for the people” is abandoning such a vulnerable population.
“These families have been completely blindsided by this cut and don’t know where to go to pick up the pieces,” she said Friday.
“People with developmental disabilities want to be part of society just like everybody else,” she said in an interview. “And we need to make sure, as legislators, we are making decisions that are empowering them to be able to do that.”
Before the Rimandos met facilitator Joanne Wilson, Maria says her son was “just a shell.”
“Now, he has someone he can trust. And who I can trust too. I can really see the growth. He’s becoming a better person,” she says.
Rimando, 24, also feels the difference.
“I was stranded. I didn’t know where to go,” he says. “Joanne gave me the direction I needed … If the government is going to completely cut this fund, I will be left hanging on a ledge or worse. I may even topple down.”
A spokesperson for the Ministry of Children, Community and Social Services said the “time-limited project” has run its course and that an independent evaluation by the previous government concluded its benefits were not demonstrably different than services and supports offered by community agencies.
Those who want to continue using independent facilitation can use Passport funding, a provincial program that provides money to individuals with developmental disabilities and their families to pay for respite and personal support in the community, said Graeme Dempster.
But advocates say the government’s evaluation was seriously flawed. As for using Passport funding, they say it isn’t a viable option because more than 16,000 individuals, including the Rimandos, are on the wait list. And those who get Passport funding say it’s not enough to cover services as well as independent facilitation, advocates add.
Life is full of transitions, but the passage from adolescence to adulthood is arguably the most difficult, says Judith McGill, a Toronto social worker who has been helping individuals with developmental disabilities and their families navigate the journey for more than 20 years. With provincial funding, McGill’s organization, Families for a Secure Future, has been able to train and mentor eight facilitators who support the Rimandos and 220 others in Toronto, Guelph, Peel, Halton and Durham.
For young people with developmental disabilities such as autism or Down syndrome, becoming an adult too often means moving from high school to their parents’ basement, segregated day programs or group homes.
Admission to psychiatric wards, long term care and even homeless shelters are common — and costly — responses when things go wrong.
Independent facilitation was beginning to change that trajectory, McGill says.
“Individuals with developmental disabilities yearn to find places in the world where they belong and can make a contribution,” McGill says. “They have the right to take up their citizenship and be supported to fully participate in life alongside others in their community.”
Unlike other “person-directed planning models” for people with developmental disabilities, independent facilitation is truly independent, she says. It does not offer residential or day services, nor does it manage or oversee an individual’s provincial funding, assessment, eligibility or service provision.
Instead, facilitators are problem-solvers and “community connectors” who “walk alongside people as they begin envisioning and making changes in their lives,” she says.
“We help people find their voice after years of having parents, teachers and professionals speak for them,” McGill says. “We help them explore their gifts and talents. And then we help people put them into action.”
Parents unable to manage or co-ordinate their adult son or daughter’s daily life believe the only options are day programs, which cost as much as $35,000 a year, or residential care, that typically runs at $140,000 annually, McGill says.
Independent facilitators, however, work with individuals to discover their dreams, interests and goals and connect them with much less costly community resources.
Since Ontario began funding independent facilitation as a demonstration project in 2015, seven such organizations in Ottawa and southern Ontario have helped 458 people plan to move out of the family home into more independent living arrangements. They facilitated 879 transitions from high school to post-secondary education and other adult roles, and helped 266 establish community support networks.
Over three years, the demonstration project has helped young adults with developmental disabilities establish, enhance or sustain more than 2,100 jobs, volunteer positions or meaningful leisure roles in the community, according to the Ontario Independent Facilitation Network.
Independent facilitation also supports families as their children move through different life stages. And it helps parents prepare for their children to be supported when they are no longer around by helping them maintain relationships with extended family and friends, and develop meaningful connections to people in their neighbourhood and broader community.
“It keeps them out of crisis, which costs hundreds of thousands of dollars,” McGill says. “Walking away from 1,354 people we are currently working with is tantamount to throwing away millions and millions of dollars.”
For Rimando, “expressing things is sometimes a hill you have to climb.”
But he is determined to tell anyone who will listen how his life has changed with his facilitator’s help.
“I always wanted to achieve something … that recognizes me not as an autistic person who has this disability and drawbacks, but recognizes me as a person who can overcome these drawbacks.”
“If this funding is cut and the program shuts down, there is no way for me to move forward,” he says. “I won’t know what to do next.”
Laurie Monsebraaten is a Toronto-based reporter covering social justice.
https://www.thestar.com/news/gta/2019/01/18/provincial-cuts-leave-adults-with-disabilities-hanging-on-a-ledge.html
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