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

A St. John's man who works as a paid caregiver says he's struggling to gethis sister the help she needsasEastern Health 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 abuseand spent her childhood in an institution that left herwith poorcommunication skills.

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

Until March 17, McCarthy said, he was receiving pay for 42 hours a week from Eastern Health. But 42 hours was not enough for the amount of care his sister requires, he said, 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, after Robyn was hospitalized, McCarthy said, hispaid 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 sisteris intelligent but unable to care for herself. He said Robyn often needs to be reminded to complete daily tasks, like showering or taking her medication, is unable to cook and has night terrors.

McCarthy said Robyn's condition means she needs a caregiver on site at all times. However, it can be challenging for people to communicate with her, andas 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 thatregular interpreters are unable to understand her and are unable toassist 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.

In recent months, McCarthy said, his sisterhas 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 supportin place. And the support is me being here with her."

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

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. "

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

"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 Healthto 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," she said.

"I was raped for many years. And then when I moved back home with my mom and my stepdad, he was molesting me."

Robyn said her stepdad 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."

After Robyn was interviewed, Trevor said she received a new assessment butthe results were inconclusive and EasternHealth is ordering another one.

"They told us that Robyn does not fit any ofthe 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 speaking to the media.

Whenever the assessment happens, he said, 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.

For the time being, Trevor said, he and Robynare 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 Healthknows that and that's why they're taking advantage of our situation."

CBC News has asked Eastern Health for comment but has not received a response.

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