Wednesday, December 30, 2009

Canadian mom launches "medical daycare" for disabled children who need extra care

From the Regina Leader-Post:

REGINA, Canada — The whole idea started with Hope — a little girl who spent her entire life, from birth to early death, in a hospital ward.

Hope was one of Jacque Tisher's foster daughters, born with spina bifida, a dangerous birth defect of the spine. She was 10 months old when she died.

Her death led her grieving mother to wonder — why does society do such a splendid job of caring for very ill children, then cut their families loose with few supports when they're released from hospital? Wondering led Tisher, a nurse and mom to a 16-year-old special needs child, to launch Hope's Home in Regina, the first medical daycare in Canada.

"This little girl who only lived 10 months really is changing how we care for medically fragile children in our province and in our country," said Tisher.

Hope's Home was started out of Tisher's home in November 2005. Tisher wanted to fill the gap in community care for families with medically fragile children, who are dependent upon medical technology to survive.

These children no longer live in hospitals and often require 24-hour care.

Their families are not only under great financial strain, but they might not be able to go to work or school or even get a break from the round-the-clock pressure of caring for a sick child.

Hope's Home offers respite and a licenced daycare — which also cares for the siblings of medically fragile children — through the Saskatchewan Ministry of Education. A few months ago, the home increased its available spaces from 30 to 41. Today it's full, with a waiting list.

Parents of medically fragile children pay a regular daycare fee, said Tisher.

"I don't believe a parent should be punished because they have a child that has high needs," she said. "Being a mom of a child with special needs, I don't think it's fair to expect parents to pay more."

The response to Hope's Home has been tremendous, Tisher modestly said. But it's been tough getting to this point. As Hope's Home is the first of its kind, it's been a struggle to find money.

The provincial government provides funding, but the facility still relies on fundraising efforts and community support.

"We've had to do a lot of fundraising to prove the need and pay for the staff at the same time," said Tisher. "Again, being the first, there's no model that you fit into for funding."

In addition to donations from Ronald McDonald House Charities of Canada, Affinity Credit Union, Tim Hortons and Maxwell House — which recently donated $10,000 to Hope's Home — a local non-profit organization, the Fraternal Order of Eagles 4126, decided to take up the cause.

Led by Tami Running, the group raffled off Saskatchewan Roughrider gear throughout the season and donated the proceeds to Hope's Home. By Grey Cup, they had raised about $6,200 for the home.

"I just cried," said Tisher. "This little group . . . just really took it on themselves, and Tami especially, to recognize a community cause and look at them — they raised over $6,000!"

"It's such a fantastic organization," said Running. "And I believe that it's something that definitely needs everyone's help to keep going."

Asked where she gets her stamina from, Tisher immediately responded: "the kids."

"It's just like no matter how tired you are, you walk in the front door and they're like, 'Hi, Auntie Jacque!' and they run and give you hugs," she said.

"I really believe each child is — and each person that is born — is a gift from God and that we all have a passion and a purpose, even if a child only lived 10 months."