Shelley Budd, pictured Monday in front of the former Huronia Regional Centre with her 28-year-old son, Kevin Williams, wants to know he will one day be able to live independently in the community. Budd has had trouble accessing supports for Williams, who suffers from pervasive developmental disorder, through Developmental Services Ontario.
Like most parents, Shelley Budd wants to know her child will be taken care of if anything happens to her.
As it stands, she doesn’t have that assurance.
Her son, Kevin Williams, who suffers from pervasive developmental disorder, is 28.
Since Williams left Patrick Fogarty Catholic Secondary School at 21 in 2005 — without a diploma since he was part of the special-needs program — Budd, a single mother with a full-time job, has been struggling to access the services he needs to move out of her basement and into the community.
“I’d like him to live independently or semi-independently in a safe and secure environment where he has the appropriate supports in place,” she said.
Right now, that’s not an option.
Williams, along with 12,000 other adults with intellectual disabilities across the province, is on the Developmental Services Ontario (DSO) wait list for accommodation and supports and has been for some time.
While he’s been set up with someone to help him with social skills and someone to help him with life skills like cooking and cleaning, he’s about 600th on the wait list for semi-independent living.
“I don’t want to be 60 years old and having my 40-year-old son live with me,” she said. “That’s not good for him.”
For the 300 provincially funded developmental services agencies to pick up the people, like Williams, on the wait lists and meet pay equity and contract obligations with staff, David Barber, president of the Simcoe Community Services (SCS) board of directors, estimates the shortfall would be about $1 billion.
The yearly cost of providing respite and programming for an individual — and each individual presents different challenges — is in the neighbourhood of $55,000 to $75,000, Barber said, noting the Ministry of Community and Social Services isn’t providing adequate financial support to agencies like SCS looking to address the wait lists.
In an email to The Packet & Times, ministry spokesperson Charlotte Wilkinson said $1.7 billion has been allocated for developmental services. According to Barber, it’s not enough.
The government expects the incomes of frontline workers in the developmental services sector to be on par with frontline workers in the health sector, he said.
“A nurse makes 10 times the amount of money ... We can’t afford to bring our people up to that level.”
In 2008, SCS received written commitment from the ministry to provide a 2% wage increase. Instead, the government implemented a two-year wage freeze in 2010.
When SCS began negotiating contracts again last year, Barber said, it got “an indication from the ministry if the increases were reasonable, they would likely be met.”
While the government came up with the resources to meet the first year of two- and three-year contracts, he said, it’s now telling the agency it’s going to have to make internal cutbacks to keep with the obligations.
“How do we cut back? We’ve already been through two years of no increases where we’ve had to struggle along.”
The Ontario Transformation of Developmental Services began in 2004.
In 2008, the government then introduced the Services and Supports to Promote Social Inclusion of Persons with Developmental Disabilities Act.
“The bill was a rough outline of where the government wanted to go,” Barber said.
“It’s always the devil in the detail.”
SCS is having trouble working with DSO — which came into existence after the closure of the three provincially run institutions for those with intellectual disabilities, including the Huronia Regional Centre (HRC) in Orillia, in 2009 — to serve local families.
While the agency “never liked the institutions because they didn’t allow the people to be part of the community,” now that they’re closed, “there’s no emergency capacity within the system,” Barber said.
Wilkinson said the government invested more than $276 million to close the three facilities (the other two were in Chatham and Smiths Falls) and help the nearly 1,000 former residents move into group homes in the communities.
“As part of this investment, the ministry provided one-time capital funding of over $70 million to help create new homes in the community for former facility residents,” she said.
Of the 1,200 to 1,300 individuals SCS currently serves, less than 5% are former HRC residents.
Given there’s 10 times the number of people waiting for respite provincewide, new accommodations are needed, Barber said.
To provide accommodation, money is needed for both the facility and to pay the at least two full-time staff required to look after residents 24/7.
All potential clients looking for respite, no matter where they live in the province, have to go through DSO.
Spaces are assigned on a priority (not first-come, first-served) basis.
“Often, they will call us directly and ask what assistance we can give and we have to refer them Developmental Services Ontario. We can’t be of a great deal of assistance,” Barber told The Packet & Times.
While the agency used to work closely with families to determine their needs and offer respite and supports where it could, Barber said its flexibility has been robbed.
“We end up being presented with a fait accompli; here’s a family and here’s a family that both need a space. Pick one,” he said.
“Why are we not being more included in this process?” Barber asked.
Budd and Williams said they don’t have time to wait for the wrinkles to be ironed out.
“He’s getting older. I’m getting older. Something could happen,” she said.
“I want to know he’s taken care of. I want to know the supports are in their place. I want to know he’s living in a safe environment. I want to know he knows how to cook and clean and stuff like that.
“I want to know he can take care of himself.”