A Quebec woman with cerebral palsy had her $900 a month in provincial assistance taken away, all because her elderly mom set up a modest trust fund to pay for her future care.

"Even though I am an adult, it feels like I am being treated as a child," says Sarah Davidson, 38, who speaks slowly but with conviction. Provincial officials cut her off more than a year ago and have denied her appeal.

"I hope they [provincial officials] never have to go through what I have been going through," she says.

Davidson is unable to work and has always lived in her parents' home. Her mother is her caregiver in their Beaconsfield home. For years, social assistance bought her a little freedom and independence.

Sarah's mother and sister have been battling the province to try to get her social assistance restored. (Leah Davidson)

The Quebec government now won't even buy her a bus pass. It cut Sarah off after her mother told workers the $70,000 "absolute discretionary" trust, also known as a Henson trust, had been set up.

"I am so sad for my daughter. Devastated," says Susanne Davidson, 76. She says Sarah now has to come to her for every penny.

'We worked hard'

"We worked hard — very, very hard — to put this money away for her. How is she supposed to live without any assistance?"

Davidson's father, a retired teacher, saved what he could for Sarah before he died 12 years ago. Her mother, a pensioner, had a lawyer set up the trust in 2012, because she fears what will happen to her daughter after she's gone.

The government's position is those funds should be drained before Sarah gets any more help from taxpayers.

"This money is in a trust. It's not just in a bank account. She has no access," says her mother.

Sarah says that what really upsets her is she now can't move to an assisted-living apartment. She's been on a wait list for years, but if a place comes open for her now, she'll have to turn it down.

"I need to have that money to move out on," she says. "I have no money. Not even to buy at Christmas time a Christmas gift for my mom."

Action called inhumane

Sarah's sister from Ontario has tried to get the benefits restored. She can't understand how Quebec can justify this, given a Superior Court ruling there, which said disabled people with this type of trust still have a right to full government support.

"It's inhumane to do this to somebody," says Leah Davidson. "I don't see other people on social assistance having to defend their right for this assistance anywhere close to where Sarah has to defend it."

Advocates for the disabled told Go Public others have gone through similar ordeals — despite court rulings and government policies upholding their rights — because the systems are meant to push people off government assistance.

Sarah wants to live independently in her own assisted-living apartment. Without social assistance, that is not possible. (Leah Davidson)

"This is just ridiculous, adding insult to injury," says Laurie Beachell, of the Council of Canadians with Disabilities, who adds that the rules and practices vary by province.

"We should be looking to help people build assets and resources so that they can live more dignified lives, rather than forcing them to spend their assets and resources to fight for basic income."

Beachell's organization has lobbied the federal government to support the permanently disabled — the way it does seniors — without clawing back benefits if they have modest assets.

"Disabled people have a lot of needs. And sometimes the needs far exceed what the government can pay anyway," says David Altro, a Quebec lawyer who has handled similar cases.

"Who is going to take care of the intellectually handicapped person after the parents have passed away? That is a big issue."

Others in similar quandary

Go Public also heard from a mother in Charlottetown who fears her 24-year-old son will lose $345 in monthly social assistance if she sets up a registered disability savings plan for him.

"Michael is legally blind, unable to speak, and requires mobility assistance. He is on a special diet due to being unable to chew," says Margaret Murphy, 62, who has $5,000 to put aside.

Margaret Murphy says the P.E.I. government told her that if she puts $5,000 in a registered disability savings plan for her son, Michael, he could lose some of his government assistance. (Margaret Murphy)

"When I pass, Michael will have to go into a group home or retirement home. My fear and concerns are for his well-being and safety in the care of others."

She says the province told her it doesn't allow recipients of social assistance to have RDSPs, even though Jim Flaherty, the late federal finance minister, insisted the disability savings plans do not affect social assistance when he set up the program in 2008.

"I respect him for his efforts. Now it is up to the provinces to honour his wishes. I am sure he would be rolling over in his grave right about now," says Murphy.

Minister now reconsidering

As a result of Go Public's inquiries, the Quebec minister responsible says the province may now make exceptions for Sarah Davidson and others like her.

"We are looking on it," says Sam Hamad, minister responsible for the province's Social Solidarity Program.

Quebec Labour Minister Sam Hamad, who is responsible for Sarah Davidson's file, says the province may make an exception in her case. (CBC)

"For me it's human and it's a special case. Because this money you receive is from your father from your mother. And so we are looking on this case now."

Her family is prepared to take the province to court, but Sarah's sister says they can't really afford the money or the time that would take.

"The lawyer is waiting for a trial date, which could take up to another year to two years. It's ridiculous," says Leah Davidson.

Submit your story ideas:

Go Public is an investigative news segment on CBC-TV, radio and the web.

We tell your stories and hold the powers that be accountable.

We want to hear from people across the country with stories they want to make public.

Submit your story ideas to Kathy Tomlinson at Go Public

Follow @CBCGoPublic on Twitter