June 23, 2018
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Hermon couple moves autistic son into new home after troubles with DHHS

By Jackie Farwell, BDN Staff

BANGOR, Maine — A Hermon couple who clashed with the state over moving their autistic son into an assisted-living facility finally has an empty nest.

Gary and Cindy Burke spent this week lugging boxes to The Getchell Agency in Bangor, their 24-year-old son Casey’s new home. The move marks the end of months of frustration in the couple’s dealings with the Department of Health and Human Services and the beginning of a home life free of Casey’s increasingly violent outbursts.

“Casey left home this morning and we were both pretty emotional because we know he’s not coming home tonight,” Gary said Wednesday. “We know it’s the right thing to do, we know it’s right for him and for us, but it’s hard to let go of 25 years of 24/7 care.”

The Burkes reluctantly decided last summer that Casey needed to move out after he punched through their garage window. Attacks on Cindy followed, as Casey, who’s nonverbal, struggled to express his feelings.

DHHS originally told the Burkes that Casey temporarily would be placed in a crisis facility before moving to an assisted-living facility. While The Getchell Agency had room for Casey, funding constraints prevented him from moving directly into a permanent home there.

The Burkes fought back, arguing their son was approved for residential services and would be traumatized unnecessarily by the two-step transition.

Last week, a DHHS employee called to say Casey had been given a green light to move into Getchell.

“It just all of a sudden came together,” Gary said.

He credited an April 6 newspaper article for shedding light on their plight, as well as state Sen. Nichi Farnham of Bangor and the staff at Getchell. Friends and even a few strangers also advocated for the family.

“We had so many beautiful supporters that came forth and were going and talking to their representatives for us,” Gary said.

Ricker Hamilton, acting director of DHHS’ Office of Adult Cognitive and Physical Disability Services, was on vacation Wednesday and could not be reached for comment. Earlier this month, he said the state works to maximize limited dollars for developmental services in light of intense demand.

Hundreds of people with developmental disabilities are on a waiting list for the same services Casey receives.

So far, Casey is excited and settling in well at his new home, Gary said. He set up his bedroom with his favorite model tractors and a John Deere rug.

“He’s making himself right at home,” Gary said.

Casey’s newfound independence brings with it a new dynamic for the family.

“Like somebody said to us the other day, ‘Now you can stop being caregivers and now you can be his parents,’” Gary said. “I thought that was kind of a nice way to put it.”

So how did the couple expect to spend their first night without Casey in nearly 25 years?

Cindy planned to bake cookies with a group of women from her son’s day program. “I think I could use the distraction for a few hours and kind of get my mind off of Casey,” she said.

Casey, meanwhile, had some plans of his own.

“He and his roommate are going to go watch a movie, so that’s what he’s got on his mind tonight,” Cindy said.

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