When Hayden Pfeiffer was born, his parents thought they had a perfect little boy. One who would grow up, get a job and leave them with an empty nest. When he was two, mother Deborah Pfeiffer says, those dreams died.
Pfeiffer's son has a severe form of autism. He will never be able to feed himself, dress himself, or thank his mother for taking care of him, but that doesn't bother Pfeiffer.
"Hayden has brought many gifts into our lives," she says, but Pfeiffer wonders who will take care of him when she is no longer able.
A system in crisis
Deborah Pfeiffer didn't want her son Hayden to languish on a wait list for 20 more years before getting into a government-funded group home. (Melanie Ferrier/CBC)
Ontario's Ministry of Community and Social Services pays local organizations to build and staff special homes where adults with disabilities can live, but advocacy group Community Living Ontario says there are 12,000 people waiting to get into those group homes.
[Listen to the documentary "House of Dreams" about three mothers determined to secure a future for their disabled adult sons, airing on CBC radio's The Sunday Edition on June 8 starting at 9 a.m. EDT.]There's a drastic shortage of homes, says Deborah Pfeiffer, whose 20-year-old son Hayden has been on the list since he was born. Hayden's severe autism requires him to be supervised at all times.
"We don't know where our children are supposed to go," she says. "I don't know what the government's answer is. Is it putting them into nursing homes? I don't think that's the answer either."
Moira Hollingsworth and her husband, Roger, stand with her sons Dan, Graham and Ian. The couple don't feel safe retiring until son Ian has a permanent home. (Courtesy of Moira Hollingsworth)
A creative solution
Unsatisfied with the government's plans for her son, Pfeiffer began to look for an alternative.
She joined forces with Moira Hollingsworth, whose 30-year-old son Ian also has severe autism, and Susan Simpson, whose 25-year-old son Kevin has cerebral palsy and a profound mental disability. Together, the three mothers bought a house in Waterloo, Ont., with plans to turn it into a home for their dependent children.
Susan Simpson and her husband, Mike, stand with their sons Kevin and Greg. The Simpsons sold their family home in order to pay for the house they bought for Kevin. (Courtesy of Susan Simpson)
For the past two years, their sons have been spending one weekend a month at the house with staff from a local agency.
"Having the house gives me somewhat a feeling of security," says Hollingsworth, who is the oldest of the three women. "If something were to happen to us suddenly, I feel at least I have something in place for Ian."
Funding still an issue
The women would like their sons to be spending more time at the house, but the cost of round-the-clock support is high and the three families can't afford it.
"I think the budget would be about $350,000 a year," Hollingsworth says. "That's a huge commitment for you to pay the rest of your life."
They've met with politicians, written to government ministries and spoken out at public gatherings in an attempt to garner financial support and keep their project alive.
"We're not asking for it to be fully funded," Pfeiffer says. "We're asking for a contribution." She believes the government should support her son in his new house, since it would be supporting him if he lived in a traditional group home.
Moving forward without funding
Despite their best efforts, the women say they have not received any funding from the government and the cost of the house is becoming a burden.
"I think we're willing to hang on a little bit longer," says Simpson, who had to sell her family's home in order to finance her son's house. "We have invested a lot of emotions and finances into this, so I don't think any one of us wants to give up on it just yet."
Simpson says they will continue to meet with politicians and have even invited Ted McMeekin, minister of community and social services, to tour their house.
"Whatever happens, it's not a failure," says Hollingsworth. Even if the funding never arrives and they have to sell the house, the mothers know they've done what they can to give their sons a home of their own.
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