Full of hope, Donna and Don Taylor adopted two infants with developmental disabilities. Today, as their kids near adulthood, they fear for their future.
Glenn Lowson for the Toronto Star
Donna Taylor gives her 16-year-old daughter, Naomi, 16, an after-school snack in their Mount Hope home. The Taylor kids, Joshua, 18 and Naomi, both of whom have developmental and physical disabilities, attend regular high school in the Hamilton. As they grow older getting funding for their special care is going to be more difficult.
By: Andrea Gordon Feature Writer, Published on Sun Mar 03 2013
When Donna and Don Taylor adopted two infants with special needs, they dreamed of helping them build active lives at school and in their neighbourhood.
The Taylors believe their children, who have Down syndrome and other developmental disabilities, deserve the same opportunities as every other kid. And they worked doggedly to put the supports in place.
Today the teenagers are “making connections and they’re building relationships,” says Donna. “It gives them a sense of purpose.”
Joshua, 18, and Naomi, 16, love classes at their Catholic high school in Ancaster, and attend a weekly youth group and Saturday gym and swim program. Naomi goes to a dance and drama group. Joshua takes therapeutic horseback riding and volunteers at an early morning Out of the Cold program with his mother. All of it requires constant supervision and support.
But now, as her children approach adulthood, Donna Taylor fears the foundation they’ve built is at risk of collapsing.
Last year, the province changed the funding system, leaving teens like Joshua and Naomi at risk of losing financial support their families had counted on.
Special Services at Home (SSAH) Special Services at Home (SSAH) , a program that provides up to $10,000 a year to cover costs of support workers, recreation programs and respite care, is no longer available to anyone over 18.
Instead, families must apply for funds through the Passport program for adults — but recipients don’t qualify until they finish school.
Funding crucial for developmentally disabled to live ordinary lives
For disabled adolescents who stay in school until 21, it means no money for additional support outside school hours.
Meantime, young adults applying for Passport can wait years to receive a cent. Last fall, 3,700 adults were on the wait list, according to statistics from the Ministry of Community and Social Services.
For youths like Joshua and Naomi, it’s the difference between a fulfilling life and a potential disaster. It puts them at risk of isolation and days with nothing to do.
Without that money, “it’s like they’ll fall off a cliff,” says Donna, 63, who left her career as a nurse to care for them and co-ordinate the many services they need.
Don, 69, works long hours at his own restoration business with no plan to retire. The couple fear what will happen if adequate support isn’t in place as they age and are less able to cope with the physical demands of their children.
The $4,000 a year Joshua receives through SSAH has made a profound difference, says Donna. Because he turned 18 last year, her son was grandfathered in the program and still receives those funds. But she doesn’t know how they will cope once he’s out of school and needs 30 hours of one-on-one support to volunteer or attend activities.
“We have no sense of hope he will receive the funding he needs.”
An 18th birthday is usually a time to celebrate. But Donna worries about what will happen when Naomi reaches that age and loses her SSAH if there is nothing to replace it.
The anxiety leaves the couple feeling “crushed under a load that seems more than we can bear,” Donna wrote in a three-page letter last month to Ontario Ombudsman André Marin, whose office is investigating the lack of services for young adults.
The cracks in the system have become so worrisome that Conservative MPP Christine Elliott launched an all-party committee at Queen’s Park last fall, hoping to propose solutions within a year. The move received unanimous support.
It was dissolved when the legislature was later prorogued, but Elliott said in an interview she plans to meet with Community and Social Services Minister Ted McMeekin and ask him to resurrect it.
After the school bus arrives at the Taylors’ suburban home south of Hamilton on a weekday afternoon, the atmosphere is exuberant, as Joshua and Naomi peel off their uniforms and dash to the kitchen for snacks. Josh scrolls through his iPad photos, naming his friends and pointing out his favourite Mr. Bean movies.
Naomi darts around the kitchen, loading the dishwasher and putting leftovers in the fridge as her favourite music blares from the laptop.
Their daily lives are full of routines and hobbies, but they will always need constant care. Joshua also has fetal alcohol syndrome and Naomi has autism. They have limited verbal skills and require help to communicate.
Uncertainty about the future leaves Donna Taylor feeling let down by her province. She is frustrated by the millions of dollars wasted through cancelled gas plants and scandals like ORNGE, when a fraction of that money would be enough to take everyone off wait lists.
Continued financial support makes “a world of difference” to so many families who are struggling, she says. “There has to be a better way.”