Family struggles to find home for son with autism

HERMON, Maine — Gary and Cindy Burke remember the moment last summer when they realized it no longer was safe to live with their son.

Casey Burke, diagnosed with autism as a young boy, had grown into a 200-pound man who increasingly erupted into violent outbursts. Last July, he returned to the Burkes’ Hermon home from a day program, went out to the backyard and attacked his mother.

“I went out to try to intervene,” Gary said. “He got very, very upset then, more so, and next thing I know he took off on the run. We were behind him as best we could, but he got into the garage and he put his hand and arm through the glass window.”

The family wound up in the emergency room “with blood everywhere,” Gary remembers. Casey needed more than 20 stitches.

“We knew then that we were headed down a road we probably weren’t going to be able to handle,” Gary said.

More recently, Casey, 24, head-butted Cindy as she stood at the kitchen sink, nearly knocking her unconscious. He also broke a floor joist in the living room in a fit of frustration.

The Burkes thought moving Casey out of their home and into an assisted-living facility would be simple, practically if not emotionally. He was approved under MaineCare, the state’s version of the federal Medicaid program, for a broad mix of support services, including assisted living.

The Bangor facility that the Burkes were eyeing had a bed ready for him and staff members who know sign language, a must for Casey, who’s nonverbal.

But when Gary and Cindy called the Department of Health and Human Services, the state agency that oversees MaineCare, they hit a brick wall.

“We started this process thinking it was going to be almost a no-brainer, and all of a sudden it’s become World War III,” Gary said.

Increasing pressures

DHHS told the Burkes that Casey first would have to move to a crisis facility, Gary said. They weren’t informed where the facility would be or how long their son would live there until permanent housing was available.

For Casey, who gets agitated during transitions, as he did in the bloody incident last July, multiple moves are a daunting prospect. Cindy and Gary make Casey’s bed just so and put his favorite movie on when he returns from his day program to lessen the chances of an outburst.

Autism, a spectrum of disorders, is marked by symptoms that include social and communication difficulties starting in early childhood as well as repetitive behaviors and unusual distress when routines are changed.

Gary, meanwhile, is burdened with a diagnosis of his own. He has Parkinson’s disease, a degenerative disorder of the nervous system that on bad days can leave him in bed for up to 14 hours. His father also suffered from the disease, so Gary has seen its debilitating effects firsthand.

“If there’s anything good about it, I’m still able to see and help [Casey] and advocate for him,” he said. “With Parkinson’s, you don’t know what the next year brings. Right now, I can still take care of him, I can still help Cindy and advocate for him and get him where he needs to be. A year from now, I don’t know if I’ll be able to or not.”

The growing safety concerns aren’t the only factor putting pressure on Casey’s situation. A state advocate working to help the Burkes will be out of a job in July if a plan to restructure DHHS wins approval in the Legislature.

Gary and Cindy want to move Casey to The Getchell Agency in Bangor, which offers 24-7 residential support services for people with intellectual and physical disabilities. Getchell has a reputation for providing the best care and Casey already has friends who live there.

While they agonized over the decision to move their son out of their home, they’re confident Getchell would give Casey the independence that he’s made clear he wants, the couple said.

Yearning for independence

Cindy, traces of scratch marks visible on her face, teared up as her husband described their ordeal. For reasons the Burkes don’t fully understand, Casey typically attacks his mother. If Gary intervenes, the situation only escalates. Casey clearly regrets lashing out at Cindy but knows no other way to express his frustration, his parents said.

Their son may have autism, but he’s still a 24-year-old man yearning for independence from his parents, the Burkes said.

“It’s harder to let go of a special-needs child than it is, I think, for a regular person,” Gary said. “And when you let go, you have to have a feeling that you’re letting them go to a place where they’re going to take as good care of him as you did.”

Despite the Burkes’ difficulties, Casey actually caught a break in the family’s dealings with DHHS. Nearly 640 people are on a waitlist for the broad services he has been approved for, including residential care; Casey was bumped to the top because of his problems with aggression.

Another 359 people with developmental challenges are on a waitlist for day program services (there’s an overlap of about 150 people who are on both lists). The waitlists have existed since 2008.

Those eligible for services include people with autism, intellectual disabilities, IQs of 70 or under and those who need help functioning in their daily lives. They are entitled to services as a result of a court order that came in the wake of a scandal and class-action lawsuit involving patients at the former Augusta Mental Health Institute.

With so many people in need of services, DHHS has to maximize each and every dollar, said Ricker Hamilton, acting director of the department’s Office of Adult Cognitive and Physical Disability Services.

Rules versus money

Moving Casey into Getchell would require rearranging existing residents, who live in mobile homes, to make room for him. The shuffle would leave one resident without a roommate, a pricey proposition that leaves the state paying just as much for one person as it would for two.

“We want to utilize the funds as best we can,” Hamilton said. “Having a one-person development is extremely costly.”

None of the recent budget cuts at DHHS affected the waitlist services, Hamilton said. Avoiding one-person housing arrangements was a policy of the prior administration that has continued today, he said.

According to Charles Schaffer, the state advocate working with the Burkes, Casey’s situation would have been a nonissue two years ago.

“One of the requirements of the statute that protects the rights of citizens with intellectual disabilities is we have to look at what their needs are and where to best serve their needs,” he said. “Right now, [for Casey] that is Getchell. The crunch is, there’s no money, so it’s a statutory battle versus a financial battle.”

The irony is that sending Casey to a crisis facility temporarily will cost more than placing him directly at the assisted-living facility, Schaffer said.

Schaffer works within DHHS’ Office of Advocacy, an independent agency that’s up for elimination under a bill to restructure the department. The office’s work would be outsourced to a private agency, resulting in a loss of 2½ of its seven positions.

“There’s a lot of people like the Burkes that I deal with that have always kept kids at home, provided the service, just being parents instead of putting them into the system early on,” Schaffer said. “Then all of a sudden these guys are getting older, and they have medical [issues] and they can’t keep up with it. So we go for help and it’s like sorry, get in line.”

Broken windows and boarded doors

The window pane Casey broke last summer is now boarded over, along with every other window in the Burkes’ garage. The front gate is padlocked to prevent him from running into the road.

In the backyard, an old John Deere tractor sits with the battery removed so Casey can tinker with the parts.

“He likes anything with a motor on it, like most boys,” Gary said.

Casey sat on the living room couch as his parents spoke, withdrawn under a John Deere baseball cap. Dark curtains blocked out the windows to limit upsetting stimulation from outside. Plywood covered the basement door and an opening to a loft on the second floor. Stairs are too dangerous for Casey, Gary said.

At times, Casey is outgoing and happy to spend time with friends, the Burkes said. He recently took up dancing, a new favorite hobby.

“Now that we have made the decision, I think each day is getting better and better and we’re excited for Casey to move out and go out on his own and learn and do different things,” Cindy said. “But it took us a long time to even get to that point.”

By speaking out about Casey’s situation, the Burkes said they hope to help others with disabilities to get the services they deserve.

“We need to get the word out that people need help,” Gary said. “Sometimes you just have to put the politics aside and think about the people.”

With Schaffer’s help, they still hope to place Casey at the Getchell Agency. Hamilton of DHHS said in cases such as Casey’s the department does its best to work with providers to overcome funding problems.

The Burkes plan to keep Casey at home until they find a placement where he’ll receive the best care.

“We’re not going to give up,” Gary said. “If they think we’re going away, we’re not going away. We’ve brought him into this world and we’ve taken care of him for 24 years and we’re going to continue that fight. We have to. It’s our obligation as parents.”