How a woman came to be temporarily banned from visiting her disabled daughter

For the first time in her life, Sharon Langille didn't see her daughter on Christmas. She wasn't allowed to go to a family visitation day and she missed winter carnival.

For more than a year, Langille has faced restricted access to Sunset Community, the adult residential centre in Pugwash, N.S., where she voluntarily placed her intellectually disabled daughter more than a decade ago.

She's not allowed in Alicia's room, can only visit on weekdays between 9 a.m. and 3 p.m. and only if she books 24 hours in advance.

"They've made me feel like I'm guilty for trying to look out for her health and well-being," Langille said of her 37-year-old daughter.

What Langille views as advocacy for Alicia, however, Sunset Community sees as something else. It has accused Langille of bullying and threatening behaviour. Staff have called RCMP in the past.

Alicia caught in the middle

Experts say it's the kind of impasse that often happens when vulnerable people are in care.

It's a balance between families asserting their rights and when health-care workers can draw the line on what they see as inappropriate behaviour.

Caught in the middle of the dispute is Alicia who, by all accounts, loves her home. Though she doesn't know it, she could be at risk of being moved.

A CBC News investigation reveals months of discord and distrust between Langille and the administration at Sunset, leading at one point to a police order banning the Cumberland County woman from the premises and the intervention of a government-appointed mediator who unsuccessfully tried to broker a truce.

At one point Langillefiled a complaint under the Protection for Persons in Care Act tothe provincial body that investigates abuse cases in residential homes.

It determined there were no grounds for an investigation.

Langille is no longer permitted to discuss Alicia's health with anyone at the home. Instead, she has to speak with Department of Community Services staff.

Documents including emails provided by Langille of exchanges between her and the home's CEO show the problems at Sunset began at least two years ago when Langille began complaining about the care Alicia was receiving.

In those emails, she accused the home of not adequately addressing Alicia's medical problems including an open sore on her foot and a persistent rash.

She was upset when she learned the home had started Alicia on nightly sleeping pills.

And she was shocked when she learned that all of Alicia's teeth had been removed due to disease and risk of infection brought on, according to a dentist's report, by her "poor co-operation for oral hygiene" and a "steady diet of pop and chips."

Communication breakdown

As statutory decision-maker for her daughter, Langille is legally responsible for making health-care decisions on her behalf unless it's an emergency.

"They really don't know what to do with me, I don't think," she said. "I've always been involved with things with Alicia since she's been there."

As Langille's complaints increased, Sunset asked her to refrain from discussing Alicia's health care with staff. Instead, thehealth services manager would provide Langille with weekly updates on her daughter's health.

But that communication broke down.

In a May 2017 letter, Sunset CEO Julie Matheson wrote that Langille's behaviour was "inappropriate and verbally abusive," and that Langille had "publicly defamed Sunset on social media."

Matheson warned that if the behaviour continued, "you will need to find an alternative service provider to provide support to Alicia."

After another incident, in which Langille took photographs of a rash on Alicia's body and brought them to a doctor for advice, Sunset prohibited her from seeing her daughter unsupervised.

"What mother is not going to check out their child when they're complaining to them about having a problem?" Langille asked. "They've made me feel like I'm a criminal for trying to look out for her."

Conflict comes to a head

The conflict came to a head on June 14, 2017, when Langille arrived at the home and demanded to see health services manager Jill Peterson. Police were called and an order was issued under the Protection of Property Act, banning Langille from Sunset.

It had nothing to do with Alicia's care.

Langille's sister-in-law had been dismissed earlier that week from her job at a nearby nursing home, according to court documents. The Langilles allege that happened after Peterson complained that Shelley Langillehad shared confidential information about a patient.

Sharon Langille was angry and wanted to question Peterson. It's that "interpersonal conflict" unrelated to Alicia that mediator Mary Jane Hampton later found led to "the end of all productive communication between the family and the Home."

The sister-in-law, Shelley Langille, filed a wrongful dismissal suit, which was settled out of court. She denied ever sharing confidential information and said the allegation by Peterson was based on something Sharon Langille had said. Both Shelley Langille and Peterson declined to speak to CBC News for this story.

This kind of conflict 'very, very common'

While it may seem extreme, an advocate for people with disabilities said this type of conflict between families and home administrators happens frequently.

"It's very, very common," said Ruth Strubank, executive director with the Nova Scotia Association for Community Living.

"Sometimes there are good systems in place for communication and sometimes there are not, but it begins with respecting that family voice."

Strubank said families are often afraid to speak up, because they fear their loved one will be moved.

"Going to media in a lot of cases is their last resort because they're absolutely ... they don't know where else to turn."

Profound decisions have profound effects

Dalhousie University law associate professor Sheila Wildeman saidit's important to remember that these facilities are a resident's home and the administrators must justify any restrictions they impose.

The decision to move a resident out of a home, she said, should never be made "simply for administrative convenience" or in retaliation toward family members "seen as troublemakers."

"It's absolutely not responsible to make such a profound decision with such a profound effect on a person's life, on [that] basis," Wildeman said.

Before the ban, Langillesaid she visited her daughter every second week. But during July and August 2017, Langille said she had only a single visit at the McDonald's restaurant in Amherst and Alicia was accompanied by a staff person.

Visits were reinstated that fall, but initially only with supervision in the common area and never in Alicia's room. At the same time, Hampton was hired by the Department of Community Services as a mediator to try to resolve the situation.

Communication breaks down once again

Both sides "agree that Alicia is happy" at Sunset and that she should remain there, Hampton wrote in her final assessment. But she said "the only real option" if Langille continued to express concern over her daughter's care at Sunset is to move Alicia.

Hampton described Langille as "a thoughtful, loving and concerned advocate for her daughter," and said the staff and management at Sunset are "compassionate competent professionals."

The mediation concluded in November with an agreement that Langille would be allowed to resume private visits on Sunset's premises, but only if she stuck to the terms laid out by Sunset. She agreed to communicate only with the executive director and only in writing. And she agreed not to be verbally or otherwise abusive toward staff.

She would also receive notice when there are changes to Alicia's care and copies of her medical reports.

But since then letters from Sunset's CEO say communications have become "unsustainable" and "the harassment and threats have continued."

Now, if Langille wants to comment on her daughter's health care or receive any information about her health, she must direct her concerns to a staff member at the Department of Community Services.

Crossing the line

In a Nov. 15 email, Hampton wrote to Langille: "If you want Alicia to stay at Sunset, you will need to assign someone else to be the substitute decision maker for her care." That was followed with a Dec. 4 email, where a frustrated Hampton wrote that Langille has broken all of the terms "some egregiously" and said Langille's demands cross "well over the line from advocacy to bullying."

She said Sunset "has no choice but to reinstate the original ban on visitation and to assess its options in Alicia's ongoing care."

Sunset's executive director declined an interview, but in a statement to CBC News Julie Matheson said the home "has developed ongoing and extraordinary communication measures in [an] effort to support Ms. Langille's role as Statutory Decision Maker."

Matheson said Sunset's priority is the "safety and wellness" of residents. And it said if supports and services aren't satisfactory to the resident or the statutory decision-maker, "they always have the right to request alternative placement and/or service provider."

Langille said the restrictions, along with the delays in getting information about Alicia's health care, are interfering with her ability to fulfil her duty as her daughter's statutory decision maker, a role which she has no intention of giving up.

She also said moving her daughter from the only home she's known for more than 10 years would be devastating for Alicia.

"Alicia loves the staff. To take her away from that, from those people would be detrimental to her," Langille said. "She just, she absolutely would not understand having to leave Sunset and go to a facility a long distance away where she wouldn't have access to the family visiting with her.

"It would just be horrible. I just, I absolutely don't want that for her."