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Parents With Disabled Children Need to Think Ahead

Editor's Note: This article is reprinted from the Daily Gleaner (Fredericton), May 24, 2006.

Lorraine Silliphant never wants to leave her son, but she knows someday she and her husband won't have a choice. Her 38-year-old son has Down syndrome. While he can do a lot for himself, he needs to live with his parents. That's fine, Silliphant said, until she and her husband pass on.

"Where's he going to live? How's he going to be financially secure? How's he going to have the things that he's used to?" she said. "How can he continue to live the life he's living without us being here?"

The New Brunswick Association for Community Living (NBACL) wants to help parents such as Silliphant find the answers. It will offer a program to help them plan for the futures of their children with disabilities.

Krista Carr, NBACL executive director, said leaving money and estates to children with disabilities is different for parents who have children with disabilities who receive government funds.

"It's much more complex than it is for the average family," she said. "[The children] are only allowed to have a certain amount of money and it has to be protected in certain ways in order for it not to be taken back by government."

Carr said families don't know how to best leave money for their children so they can continue to receive government support. Professionals such as lawyers and financial planners don't know either, she said. The new program will inform families about financial planning, but it will focus on educating professionals on how to deal with parents who have children with disabilities.

"We will be able to give families people they can turn to, who have the expertise to do what needs to be done," said Carr.

The families will still have to pay for the professionals' service. As for low income families who don't have a lot to leave to their children to begin with, Carr said the program can still help them plan for where their child will live, and help them find the funding for it.

Silliphant said this will help relieve the anxiety she feels when thinking about her son's future without her.

"It gets scarier as you get older," she said.