Derek Wright doesn’t talk much. But the 23-year-old, who has autism, found a way to tell his parents he wanted to come home.
Wright’s parents, Ginger and Jim, say that every time they visited him at Lakeview NeuroRehabilitation Center in New Hampshire, he would repeat, over and over, “No Lakeview. No Lakeview.”
The Wrights never wanted to send their son to live at Lakeview in the first place. They tried everything they could to avoid institutionalizing him. But when he turned 21 and aged out of most state services, their options disappeared.
Wright is now over 6 feet tall and weighs about 200 pounds. But the problems at home started around the time he went to middle school, when he first started having aggressive episodes.
“He can go weeks without having an aggression, and then for no reason, he’s hittin’ and kickin’ and throwin,’ ” said his mom, Ginger.
His parents say they tried to make it work at home. They got some help from state disability and special education services. They even took advantage of a state grant in Massachusetts (where the Wrights lived back then) that’s supposed to help families avoid having to institutionalize a child by providing money for extra therapists and services at home. But after a few years, it was clear that living with his parents wasn’t going to work for Derek Wright.
“He was just destroying the house and giving me a beating at the same time,” his father explained. “I couldn’t work. I couldn’t leave the house. … We couldn’t handle him anymore. It’s not what we wanted, but it’s what happened.”
Wright first went to live at a residential school called Crotched Mountain when he was about 16. Then, just before he turned 21, the Wrights found themselves in an urgent situation.
A 21st birthday often is a major turning point in the lives of people with disabilities and their families. Some families say the change is like “falling off a cliff.” While children with disabilities can access state funding for schooling, speech therapy, physical therapy and other services, there are almost no state services for people like Wright once they become adults.
A local nonprofit responsible for people with developmental disabilities told the Wrights that the only way to get state assistance for their adult son was to put him in a residential treatment facility before he turned 21. Ginger Wright says a caseworker gave them three options.
“They told us our options were FINR (the Florida Institute for Neurologic Rehabilitation) in Florida, Lakeview or keep him home with no services and no funding,” she said.
For the last month at Reveal, we’ve been covering the specialized corner of the health care system that includes FINR and Lakeview, both for-profit neurological rehabilitation centers. These places treat a hodgepodge of patients, from people with autism to those with brain injuries and complicated neurological disorders. Patients live on-site. Many are severely disabled.
Derek Wright went to live at Lakeview in 2013, and he languished there. He received little treatment. The other patients upset him. He lost 80 pounds, according to his parents.
In our collaboration with New Hampshire Public Radio’s Jack Rodolico, Reveal reported on a suspicious patient death at Lakeview in 2012. We uncovered far-reaching allegations of patient abuse and neglect and fraudulent billing practices at Lakeview – like charging Medicaid for changing channels on a TV. We also found that for decades, Lakeview profited from patients such as Wright, with little oversight. (If you missed our earlier reporting, you can catch up here or subscribe to our podcast and start at the beginning of the series.)
The Wrights finally pulled their son from the facility last winter, as Lakeview made headlines in New Hampshire. In our latest podcast, we sit down with the Wrights to find out how their son is doing now.
This story was edited by Fernando Diaz and copy edited by Nikki Frick.
Laura Starecheski can be reached at firstname.lastname@example.org. Follow her on Twitter: @Starecheski.