St. John's man struggling with Eastern Health to get deaf sister care he says she needs

·5 min read
Trevor McCarthy says he and his sister Robyn are inseparable and he knows how to best communicate with her.  (Submitted by Trevor McCarthy - image credit)
Trevor McCarthy says he and his sister Robyn are inseparable and he knows how to best communicate with her. (Submitted by Trevor McCarthy - image credit)
Submitted by Trevor McCarthy
Submitted by Trevor McCarthy

A St. John's man who works as a paid caregiver says he's struggling to get his sister the help she needs, as Eastern Health has cut back his paid hours after he requested an increase.

"I'm frustrated and disappointed and disgusted at the same time with Eastern Health," said Trevor McCarthy.

McCarthy said his sister, Robyn, is deaf, has post-traumatic stress following years of sexual abuse and spent her childhood in an institution that left her with poor communication skills.

"She has a lot of deficiencies because of the way she was raised and the abuse she suffered," he said.

McCarthy said until March 17, he was receiving pay for 42 hours a week from Eastern Health. But, he said 42 hours was not enough for the amount of care his sister requires, and the level of care he provides interferes with his ability to work elsewhere.

"I approached them requesting 60 hours a week, because I'm having to be here almost 24/7 around the clock with her," he said.

However, following a hospitalization for Robyn, McCarthy said his paid hours were reduced to 32.

"I'm not trying to get any more than anybody else, I'm not claiming to be any different or any better than anyone else. But because of my sister, the level of her needs, I'm not able to maintain a job anywhere else to pay my bills," he said.

McCarthy said his sister is intelligent but is unable to care for herself. He said Robyn often needs to be reminded to complete daily tasks, like showering or taking her medication. As well, Robyn is unable to cook and has night terrors.

Submitted by Trevor McCarthy
Submitted by Trevor McCarthy

McCarthy said Robyn's condition means that she needs a caregiver on site at all times. However, it can be challenging for people to communicate with her, and as her brother, he knows how best to communicate with her.

"We grew up together. She's my sister. Nobody else knows Robyn's communication, knows her language as good as I do."

Although Robyn's lack of communication skills mean that regular interpreters are unable to understand her and are unable to assist her in understanding others, Trevor said Robyn does have a special interpreter who works with her on a daily basis.

"She is able to break things down to Robyn if Robyn doesn't understand," he said.

Trevor said in recent months, his sister has been making good progress. He said she's been seeing two specialized therapists to guide her through her trauma, and she's just completed some Discovery Centre and Stella's Circle programs to increase her education level.

But, McCarthy fears all that progress will be lost now that his hours as her caregiver have been reduced.

"Robyn is progressing forward, but she's only progressing because she has support in place. And the support ... is me being here with her."

He said without a caregiver who can understand her, she will regress, and a typical home care worker's schedule is not appropriate for her.

Submitted by Trevor McCarthy
Submitted by Trevor McCarthy

While speaking through her interpreter, Robyn agreed with her brother.

"I really do need a lot of help because I was isolated for so long," she said. "Mentally, some days I just can't take care of myself. "

As a result, she said Eastern Health is not giving her and her brother the support they need.

"My brother is spending a lot of his own money on me, and then he doesn't even have any money left over for himself to pay his bills."

Robyn said she would like Eastern Health to have a new assessment done on her condition to reset her care.

"I want a fresh start with Eastern Health. They don't understand my story."

"I was raped for many years," she said. " And then when I moved back home with my mom and my step-dad, he was molesting me."

Robyn said her step-dad was eventually charged and spent time in jail. She said the abuse is part of why she needs more support in her life.

"I just feel like it's not fair, what Eastern Health is doing to me and my brother. Like, my brother is doing so much. He's helping me all day, every day, and he's spending his own money on me. And it's just not fair. I feel like they're taking advantage of him."

Submitted by Trevor McCarthy
Submitted by Trevor McCarthy

In the time since Robyn's interview, Trevor said she has received a new assessment. However, the results were inconclusive and Eastern Health is ordering another assessment.

"They told us that Robin does not fit any of the criteria, unfortunately, and that they're requesting an occupational therapist to come for a visit, which is not going to be for another couple of weeks," he said.

Trevor said they don't have a date for the occupational therapist's assessment yet. He said Eastern Health stopped communicating with him after they found out he was telling his story to the media.

He said whenever the assessment happens, he hopes they watch Robyn for long enough to have a better sense of how she operates.

"She's a very wonderful young girl, very bright, cheery, happy. You wouldn't think anything was wrong. But if you give her enough time to watch her going around the home, you start seeing her deficiencies. She cannot be left alone all the time," he said.

Trevor said, for the time being, he and Robyn are doing the best they can.

"We're very, very close siblings," he said. "We're inseparable. And that's the only thing I think that we got going for us, because I'm never going to walk away from her. And Eastern Health knows that and that's why they're taking advantage of our situation."

CBC News has asked Eastern Health for comment but has yet to receive a response.

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