Community Counselling & Resource Centre

Peterborough families of children with disabilities struggling with cost of home retrofits for accessibility

http://www.thepeterboroughexaminer.com/news/local/archives/2017/07/31

August 5th, 2017

Jenn and Mike Fulford of Havelock have two sons with disabilities, aged 5 and 7.

Parker, 5, has cerebral palsy and is legally blind and deaf. Ayden, 7, was adopted by the Fulfords when he was 18 months old; he has fetal alcohol syndrome.

Ayden was Jenn's nephew. At the time of the adoption, she'd spent a decade trying fertility treatments.

"Then, Ayden needed us," she said.

So they adopted him - and a month later, Jenn was pregnant with Parker.

Jenn, 34, used to work as an educational assistant. Now she looks after the boys at home during the day while Mike works for Havelock Metal.

There have been hard days; Jenn has found herself falling asleep at the wheel, driving Parker to medical appointments after sleepless nights looking after her sons.

Thankfully, she says, she qualified for provincial funding for a nighttime nurse.

But there's no similar funding to retrofit a home for accessibility, Jenn says, or to help a family buy an accessible vehicle. Yet it's expensive, and hard to manage on one income.

Jenn says an accessible van would make life more manageable: If she had one, she wouldn't have to carry her 40-pound Parker in her arms and strap him into her minivan like an infant.

The repeated strain from this daily task has taken its toll on Jenn. She has a painful frozen shoulder that won't get better until she stops carrying Parker around.

"But I can't do that," she says. "Parker needs me to lift him every single day."

Jenn's friend Karen Irvine couldn't stand by and watch - she had to help.

So she started a Go Fund Me page to collect money for an accessible van and a new ramp on the Fulfords' home.

Irvine thinks there ought to be more provincial funding for accessibility.

"We have a bigger issue," she said. "I don't think it's right, how Ontario treats its special needs families."

Peterborough MPP Jeff Leal wasn't available for comment Friday.

But the Ministry of Children and Youth Services website shows a wide range of services available for special needs children, such as funding for respite care, assistive devices and group homes.

Meanwhile, the Fulfords aren't the only family crowdsourcing to buy either an accessible van or to renovate a home for accessibility. There's a smattering of similar pages on Go Fund Me.

Dorothy Lavoie, a single mom of two autistic daughters (ages 8 and 12), launched one of those pages recently.

Lavoie lives in Peterborough, in a granny flat in her parents' west-end home. She looks after her children full time.

Lavoie set up her Go Fund Me page to recoup money her parents spent to install new, lockable windows to keep her eight-year-old daughter Becky from escaping.

Becky is autistic and non-verbal. When she was 6, she slipped out an open window.

"She ran down Lansdowne St. at 6 p.m. on a Friday, got in the middle of the road and curled herself into a ball," Lavoie said.

Somehow, she wasn't struck by a car.

"We were lucky," Lavoie said. "A fire truck was coming back from a call and saw all these cars were stopped."

The Becky-proof windows cost $12,000, and Lavoie wants to help her parents pay for them - except she cares for her daughters 24/7, and doesn't have a paying job.

She's also exhausted. Becky doesn't sleep well, and sometimes wakes her mother up at 3 a.m. - and then they stay up for the day.

People have told Lavoie she should put Becky into a group home.

"I say no," Lavoie says. "She's my daughter. How can I abandon her?"

Jenn Fulford doesn't want to send her son to a group home, either.

But she might have to consider it, she says, if they can't provide an accessible home and transportation.

She'll do whatever it takes to avoid placing Parker in someone else's care, she says. She's even considering a suggestion that she stand on a busy street corner with her family, asking for donations, with a sign that says Support for Parker.

If that's what it takes to keep Parker at home with her, she says she'll do it.

"He's completely dependent on me," she said. "And I'm completely dependent on the community, now, to help me help him. Or he'll have to go in a group home."

The Fulfords' Go Fund Me page is at www.gofundme.com/jenn-and-mike-fulford-renovations.

Dorothy Lavoie's page is at www.gofundme.com/beckysafe.

JKovach@postmedia.com