When Tyler Richardson’s son hit puberty, the combination of hormones and new strength from a growth spurt added an element of danger to a long history of unpredictable behavior because of autism and severe anger problems.
He wandered outside one day after his aides left his grandmother’s home, where he was living. Grandma tried to bring him back inside, and he eventually followed. But once in the kitchen, he attacked her, latching on and taking her to the ground.
Then, he bit off her finger.
Richardson loved his son, but something had to give. After a long, nationwide search and episodes of trial and error, the northern Colorado man contacted Lakeview NeuroRehabilitation Center in Effingham, New Hampshire, an 88-bed facility near the Maine border for people with traumatic brain injuries and other developmental disabilities. It was the only such center he could find with an available bed that would take his son.
“It’s probably one of the toughest things that I think anyone has to go through,” Richardson said. “Just to find somebody to help us find a program was really hard.”
About a year later, Richardson is back where he started. Lakeview is preparing to close after months of scrutiny over allegations of abuse and neglect, including a client death and reports of chronic understaffing. The paucity of such centers for people with extreme brain disorders and related behavioral problems means the closing is sending national ripples through the industry and stressing out families who need to move their love ones from Lakeview, as well as others who have lost yet another option.
During the past year, 19 states and Washington, D.C., sent people to Lakeview, a private facility which has been home to male and female residents ranging from age 8 to their late 40s. Just a quarter of the 140 people who have lived there in the past year came from New Hampshire. As of 2013, 13 states had shut down state-run developmental centers, and many more are on the path to closure.
The shutdowns are partly a reflection of a trend of states moving away from placing people in institutions and focusing instead on caring for them within their homes and communities. But sometimes, like with Richardson’s son, institutionalization makes more sense. Lakeview and only a handful of other centers serve people who exhibit high-risk, often violent behaviors coupled with developmental or intellectual disabilities, meaning they require constant care, often from multiple people.
Community care, such as a home with a few other residents and caregivers within a neighborhood, works for most people with developmental or intellectual disabilities, said John Finn, a former treatment expert for the New York government who now does consulting work for New Hampshire agencies. But that type of setting doesn’t work in the most extreme cases, in which five or six aides might need to control a violent outburst.
“As they close those developmental centers, if they don’t create an alternative place for those really high risk people ... then the problem the parents have becomes very real,” said, Finn, who couldn’t offer an exact number of centers that serve such patients.
New Hampshire Gov. Maggie Hassan put a moratorium on sending new clients to Lakeview after a damning investigation from the Disability Rights Center, the state’s federally designated protection and advocacy system for people with disabilities. Hassan initiated daily monitoring of Lakeview and hired a consultant to examine licensing for similar facilities. The state education commissioner also ordered the school at Lakeview shut down in part because it lacked a curriculum and failed to meet other state requirements.
The state did not order Lakeview to shut down. That was the decision of its owner, who said it would be too costly to keep it running with the school closed and the moratorium on new patients. It costs about $800 to $1,500 a day to send someone to Lakeview, a cost covered primarily through Medicaid. The rates for residents in other states vary. State health officials said Lakeview was also at risk of losing its license as administrators struggled to correct problems.
Lakeview has made strides in care quality, and news reports have been preoccupied by a handful of extreme problems in the past, said Tammy Baxter, who was hired eight months ago to improve quality assurance. She worries that some of Lakeview’s clients could end up in psychiatric wards or jail if they don’t find a new home base.
“You didn’t make it to Lakeview because you had a negative outcome in the community one time,” Baxter said. “People had to fail in multiple group homes and multiple facilities before they ever became a client at Lakeview.”
Since the announcement, residents have been trickling out on their way to other placements in New England and across the country. The tentative closing date is Aug. 1, but administrators say they plan to stay open until everyone has somewhere to go.
Just 10 clients remain. Richardson’s son is one of them, and he’s been looking for another placement for nearly three months.
“What’s the worst-case scenario? I ask that question all the time, and no one can really tell me what the worst-case scenario is,” he said. “He has to have intense help every day for every area, and there’s just not a lot of places that can do it or are willing to do it or want to do it.”
Kimie Hirabayashi, of Honolulu, sent her teenage son to Lakeview after trying a number of placements at public and private schools in her home state. He has attention deficit-hyperactivity disorder, Asperger’s syndrome, high anxiety and intermittent explosive disorder, she said. The family needed to hire a private transportation company to fly him to New Hampshire because he can’t travel on a commercial airline.
Hirabayashi, like Richardson, describes her son’s experience at Lakeview as positive. His behavior had improved there, and she was preparing to move him to another school with bigger classrooms and more interaction with other students when news came that Lakeview would close. After submitting at least 20 applications, she found an all-boys school in Massachusetts to take her son.
Although some parents describe positive experiences at Lakeview, official reports conclude the facility faced chronic understaffing, and investigations support allegations of abuse and neglect. Reports from the state health department found an instance of a resident wandering away from the facility unattended in January, after Lakeview was already under scrutiny. It was not the first time such a misstep had been reported.
State health officials say there are better options than Lakeview and the focus should be on helping people live and participate in their communities rather than reside in institutions.
“I don’t believe that Lakeview is the last resort,” said Marilee Nihan, deputy commissioner of New Hampshire’s Department of Health and Human Services. “I do believe that they take a lot of complicated clients that other facilities won’t take. It is my hope and desire that every single client that goes to a place like Lakeview gets enough treatment and supports to be able to move through the continuum of care so that they become more community-based in their living.”
Families say it’s not easy.
Jennifer Cote has been a vocal critic of Lakeview after her son lived there for just a month. He has Crohn’s disease and autism and can’t speak. Cote began looking for a new placement when her son, then age 11, fared poorly at a facility in her home state of Maine.
Facing rejections from programs across her state, she turned to Lakeview. She was impressed during her initial visit, but her reaction changed the day she dropped her son off. The facility was dirty and the staff members seemed indifferent to her son’s special needs, she said.
Cote’s son lived at Lakeview for a month until a Maine hospital that he used to live at in times of crisis agreed to readmit him. He now lives at Easter Seals in Manchester, New Hampshire.
When it comes to home and community care for someone like her son, she said, “the supports are not there.”