Suzana and Jeff Pekrul, whose daughter Kaitlyn requires constant care, say they are desperate for a break. (CBC)

The parents of a severely disabled B.C. girl are accusing the provincial government of neglecting the needs of disabled children and their families.

"Our experience tells you what is important to this government. I mean, obviously children and families aren't important," said Suzana Pekrul.

Pekrul and her husband, Jeff Pekrul, care for their six-year-old daughter around the clock, but said they can't get the government to pay for the respite their doctors recommended. The family has been asking for $500 a month in extra support, to pay for a caregiver to come in one evening a week and give them a break.

In January, Crown corporation Community Living B.C. gave them that funding — then took it away two months later. Suzana Pekrul said she was told there isn't enough money in the respite budget and they have been put on a waiting list.

"It's passing the buck," said Suzana. "You know — 'We feel sorry for you and we understand you need the support, but we don't have any funding for you.'"

Exhausted parents 'burning out'

Kaitlyn Pekrul was born with severe microcephaly, resulting in an underdeveloped brain. She can't walk or talk and has constant trouble breathing. Her parents have been looking after her at home since her birth. Caring for her is a complex, 24-hour ordeal, they said, and they get very little sleep, leaving them exhausted.

Due to severe microcephaly, six-year-old Kaitlyn is unable to walk or talk. (CBC)

"We're burning out," said Jeff. "We can't do this."

Still, it's a burden they are happy to carry, the Pekruls said. They would never consider putting Kaitlyn into foster care or an institution, they said.

"We're trying to give her the best life, because she doesn't have a long life to live. We are trying to enjoy her as best we can," said Jeff. "There's nothing we wouldn't do to give her the best care she can have."

A government-funded caregiver comes in to help during the day, but the Pekruls are usually on their own at night. They also both hold down full-time jobs. Suzana works during the day, while Jeff works evenings.

"I work a 10-hour shift," said Jeff. "I come home at 1:30 a.m. I go to sleep at 2:00 — and I'm up every day at 6 so my wife can get ready to go to work.

"We pay taxes. Let's use some of our tax money and direct it to people like us who have children like this — because there are lots out there," he said.

The CEO of Community Living B.C. refused to talk specifically about the Pekrul case, but said his priority is to help families with the most urgent needs.

"Obviously we are not providing services to everyone," said Rick Mowles. "But you know, we like to think that we are dealing with all situations on an individual basis.

"Most parents — when it comes to health and safety issues and crisis issues — those families are all getting the respite they need," he said.

Many families at breaking point: advocacy group

Laney Bryenton, of the advocacy group B.C. Association for Community Living, disagreed. The association gets many calls from parents of disabled children who can't get provincial funding for respite, she said.

"Respite is the Number One issue," said Bryenton. "For a government that says it has the best system for people with disabilities, there is very little investment. It has forsaken these parents and their children."

'Because I choose to care for my child in my home, I am not given the same kind of respect that other people are given.'— Suzana Pekrul

Bryenton said some families are breaking down because the parents just can't cope. She pointed to a recent case in the B.C. Interior in which the parents gave up and put both of their disabled children in foster care.

Because there were very few services in their community, Bryenton said, the children had to be separated and placed in two different foster homes, several kilometres away from their parents.

"It's a horrifying, extreme example of not giving support to families," said Bryenton.

Suzana Pekrul said she doesn't understand why the government has enough money to pay foster parents thousands of dollars per child each month, but Community Living B.C. doesn't have enough for parents like her.

Rick Mowles of Community Living BC says Kaitlyn's case is now being reviewed. (CBC)

"Because I choose to care for my child in my home, I am not given the same kind of respect that other people are given," she said.

"If they have the money to give to people, then give it to them," said Jeff. "Don't sit there and fight and argue. The bureaucratic stuff that goes on makes me mad."

There is no way to tell how many parents are waiting for government help, because Community Living B.C. doesn't compile its waiting lists provincially.

"We don't have any of that information," said Mowles. "The waiting lists would be kept in a local office — or local contractors would keep that — so we don't track that information."

Request now being reviewed

Mowles did indicate that as a result of CBC News inquiries, the Pekruls may soon get more assistance.

"We are reviewing that situation again to determine whether we are at the appropriate level of funding," said Mowles. "They are getting respite already. The discussion is how much respite? How much of a break does the family need?"

"People out there who are doing this can understand," said Jeff. "We're not looking for charity.

"It's just $500 a month so that we can have a break — so that we can sleep and we can function and we can do our jobs," said Suzana.