Loss of funding disables the disabled

Selena's small body was covered in vomit. She must have thrown up a while ago, because when her mom found her, the eight-year-old was fast asleep in her wheelchair in the children's wing at Copper Ridge Place.

Selena’s small body was covered in vomit.

She must have thrown up a while ago, because when her mom found her, the eight-year-old was fast asleep in her wheelchair in the children’s wing at Copper Ridge Place.

Georgette Aisaican didn’t want to leave her daughter at the palliative care facility.

But, with few other respite options available, Aisaican’s social worker convinced her to give it a try.

Selena has Rett Syndrome, a neurodevelopmental disorder that doesn’t show up until the child is 16 to 18 months old.

“She was saying things like ‘cookie,’ and ‘Mommy,’” said Aisaican.

But then, Selena started to regress.

“As soon as I read the diagnosis, I began to see all these changes,” she said.

By the time she was four and a half, Selena was eating through a feeding tube, using a wheelchair and waking up regularly with “night terrors.

“For one or two hours she wouldn’t know who I was, or where she was,” said Aisaican.

“It was just horrifying for her.”

Aisaican slept with “one eye open,” frequently checking on her daughter to make sure she was sleeping on her side and wasn’t struggling with nightmares.

Then, at 5 a.m., Aisaican would wake up to prep for Selena’s first tube feed. Each feed takes 45 minutes, and Selena needs five a day.

Aisaican is a single mom with two kids.

On Thursday, the wheelchair bus had just brought Selena back from school, and she was watching TV with her 11-year-old brother Samual and the family’s bouncy pug, Sophia.

Every now and then the little girl coughed and Aisaican would gently rub her back.

“I can only work when they’re at school,” she said.

And a family outing to the Canada Games Centre is out of the question.

Aisaican needs help.

And for a while, Health and Social Service’s family supports for children with disabilities branch was providing it.

From 2004 until spring 2009, Aisaican got $5,600 a year for respite care.

She used the money to pay her mom to watch Selena for seven days each month.

“It gave me time to do stuff with Samual,” she said.

“And catch up on sleep – which was the main thing.”

But Selena was getting bigger, and Aisaican’s mom was having more and more trouble lifting her and caring for her.

That’s when the family support’s social worker suggested Copper Ridge.

The plan was to leave Selena there every other Friday and Saturday, a total of four days each month.

But Copper Ridge takes patients on Wednesdays, not Fridays.

So Selena ended up in the facility for almost five days at a time.

And staff had trouble administering her medicine, said Aisaican.

To manage Selena’s seizure activity, her medication is always changing. And Copper Ridge requires a faxed prescription change at least 96 hours before the patient arrives.

“But I’d get a call the night before she was to go in saying the fax from the doctor didn’t go through, and now it was too late,” said Aisaican.

So suddenly, Aisaican would have to back out of the extra hours she’d committed to work, because Selena couldn’t go to Copper Ridge that week.

“It got to the point where I almost needed respite just trying to arrange respite,” she said.

Those glitches were frustrating.

And Aisaican was still trying to iron them out when she began to noticed a much more disturbing trend.

One day, when she came to pick up Selena at Copper Ridge, Aisaican found her sitting alone in a big common room with the TV blaring.

There was no one around.

“I know it is a facility, and the kind of care she was getting there wasn’t me – it wasn’t as one-on-one, and I tried to accept that,” said Aisaican.

A few weeks later, Aisaican went to get Selena and again no one was around. She waited 15 minutes, then went looking for staff, but couldn’t find anyone.

“And I had to meet my son, who was getting off the school bus,” she said.

So she took Selena and left.

Five hours later, Copper Ridge called and asked if she had Selena.

“I began to wonder who watches over her, who goes in her room at night … it was hard to have peace of mind,” she said.

Then came the day when she found her daughter covered in vomit and fast asleep.

The nurses were apologetic and said they didn’t realize she might get sick, said Aisaican.

“And I went over with them that she may, or may not, get sick – but she just needs some sort of supervision.”

Aisaican was never comfortable having her up there in the first place. “And that just justified my reasons for having her at home,” she said.

“And with the quality of care she’s receiving at home – we want to give her the best quality of life she can possibly have – it just didn’t seem worthwhile putting her at Copper Ridge and compromising that.”

So Aisaican met with her social worker and asked to have the funding reinstated to hire a respite worker for a few days each month.

But after several meetings that included the manager of family support, Inge Semanick, Aisaican was denied funding.

She was told if she wanted respite, Selena could go to Copper Ridge.

Aisaican had also requested funding for sibling care.

“So when I go to specialists in Vancouver with Selena, I can hire someone to take care of my son,” she said.

And she hoped to access an inclusion worker, to help her take Selena and her son to community events, or go swimming at the Canada Games Centre.

But family supports for children with disabilities denied all Aisaican’s requests.

“They said I need to exhaust all the other service providers first, that they are a last resort,” she said.

“But in our situation, our needs are pretty clear – and if we can’t tap into those services, who can?”

Family supports for children with disabilities was Julie Robinson’s brainchild.

For years the executive director of Autism Yukon wrote draft policy and lobbied government to get support for families struggling with disabilities in the Yukon.

And finally, in 2006, her draft policy took effect.

The policy allowed families to access funding to hire service providers to meet their specialized needs.

“The idea of family-directed services is best practice worldwide,” said Robinson.

No two disabilities are the same, and this policy gives families the ability to hire support workers who best suit their needs, she said.

Robinson hired a behavioral therapist to work with her autistic son, Cole, who’s 20.

He also had a support worker who went with him to his job at Staples and the Yukon Wildlife Preserve.

Cole has been working at Staples three evenings a week for the past three years.

But he wants to be a zookeeper, said Robinson.

So last season, he worked as the summer student at the Yukon Wildlife Preserve. It went so well he got to keep working every Saturday throughout the year, and was invited back again this summer.

But the funding for Cole’s support staff will be cut on April 1.

In the last month, family supports for children with disabilities has started cutting services to meet higher demand, said Robinson.

“They said, ‘We’re all going to have to divide up the pie,’” she said.

That means Cole will lose his job at Staples and he won’t be able to work at the game farm.

He will also lose his behavioural therapist.

And the only reason Cole will be able to continue his biology and First Nation studies at Yukon College is because his parents are taking time off work to attend classes with him.

“We rely on people like Health and Social Services to help us because we can’t do it alone,” said Robinson.

“Cole’s a member of the community.

“In past generations, families kept the child in the basement, or the attic and no one talked about the person who was flapping in their bedroom, or banging their head against the wall.

“And that’s the kind of life Cole would have had at another time,” she said.

It’s 24-hour care for someone with autism, said Robinson.

“We’re working on independence and we’re farther down the road, but we’re nowhere close to him living independently or having an independent life yet.

“And I see the day now, with the kind of support he was getting, where Cole will be at Staples by himself and will be at the game farm by himself and go to school by himself – it’s just not yet.”

And now, with no jobs and no therapy, Cole will regress, said Robinson.

“He’ll be happy in the short term because he will just be downstairs playing video games,” she said.

“But for the rest of his life he’ll do what?”

Families struggling with disabilities are already living with such a challenge, said Aisaican.

It shouldn’t be so difficult to get support from the government, she said.

“All we want to do is provide the best quality of life for our children – it’s that simple.”

Calls to Health and Social Services and family supports for children with disabilities were not returned.

Contact Genesee Keevil at

gkeevil@yukon-news.com