The final countdown has begun for the last of three large state-run institutions that care for the severely disabled: In less than six years, almost all of their residents are likely to be transferred to other settings.
The public comment period ended last week on a plan to move 776 patients currently housed at the three development centers into smaller community-based homes. The state expects the move to save it roughly $250 million a year.
The average cost of caring for those patients — who have conditions such as cerebral palsy, epilepsy, brain injuries and severe autism — is $500,000 a year per person, according to the Legislative Analyst’s Office in Sacramento. Following previous closures of sister institutions and the transfer of their residents to smaller local facilities, the average cost fell to about $180,000 per patient.
Last 3 Centers are in Sonoma, Costa Mesa and Porterville
Shutting down facilities in Sonoma and Costa Mesa, and partially closing a third site in Porterville, will not only save money on patient care, it also will open up some prime real estate opportunities for the state-owned sites. What the state will do with the land and the many large buildings that sit on it is still being publicly debated.
The Porterville site will move roughly half of its patients. The rest, 211 developmentally disabled felons in the center’s secure treatment area, can’t be moved into the community and will remain where they are.
A much smaller state-run residential facility, Canyon Springs in Cathedral City — near Palm Springs — will continue to house its 55 residents.
Also up for debate in the Capitol next week will be the amount of money earmarked by the state to finance the closures and patient transitions. A legislative budget hearing on March 16 will examine the cost of doing so.
Concerns of Insufficient Staffing
A report released Friday by the Legislative Analyst’s Office raised concern about the potential loss of federal money during the roughly six years it will take to nearly empty the facilities.
According to the LAO, federal officials have been worried about insufficient staffing and inadequate care at the centers, as well as their failure to follow up on cases of abuse and neglect.
The feds will be carefully monitoring the state to make sure it complies with all requirements for the health and safety of residents in the new, smaller community settings.
The state’s final proposal will be presented to the legislature Apr. 1.
The plan is the latest — and last — move in California’s shift away from providing care in large residential centers.
Over the past two decades, the state has been slowly shuttering them and moving its developmentally disabled residents into smaller facilities. At the system’s peak in 1968, 10 large developmental centers housed more than 13,000 patients.
The switch to community-based care in smaller group homes, along with the creation of 21 non-residential regional centers to coordinate that transition and provide other services across the state, has siphoned away most of the population at the larger centers.
Over the past decade, the state shut down three other developmental centers — Agnews in Santa Clara, Lanterman in Pomona and Sierra Vista in Yuba City.
Of the three big centers currently operating, Sonoma is expected to be closed by the end of 2018; the one in Costa Mesa and the non-secure area of Porterville, by the end of 2021.
“Shift in Philosophy” — With Some Criticism
The high cost of care is not the only reason for shutting down the centers, said John Doyle, chief deputy director of the state’s Department of Developmental Services, which operates them and is coordinating the closures.
“Every decision in government at some level is a monetary decision,” Doyle said. “But this is more of a shift in philosophy.”
In the newer model of care, he said, “people can make their own decisions about their own life,” rather than having their daily schedule dictated by an institution.
That thought is cold comfort for Christina Nielsen, whose son Tom has lived off and on for the past eight years at the Costa Mesa facility, known as the Fairview Developmental Center. He has severe autism and is called a “runner.”
“Tom has a long history of wandering away and running,” Nielsen said. A court order placed him in the Fairview center and he needs to stay there, she added.
The closure of the centers, Nielsen said, “is a death sentence for my son, and others like him.”
Nielsen said Tom has been moved three times already from Fairview’s institutional setting to smaller “crisis centers” — and it hasn’t gone well.
“He ran away from a caregiver and onto the 101 freeway and was hit by a car,” she recounted. “He has been in three other crisis homes and failed [at] each of them.”
As part of the closure plan, the state is creating half a dozen community crisis homes across the state, which have many clinical services built in for patients with complex physical issues. It is also creating homes that offer what officials call “enhanced behavioral supports,” such as medical staff members with special training.
“People will see it can work,” Doyle said. “There are people we serve already who have challenging behaviors who have never been institutionalized. So it definitely can work.”
Disability Rights California, a Sacramento-based advocacy group, has endorsed the decision to close the developmental centers.
“This plan ensures that residents may safely and successfully transition into the community,” said Jennifer Alfaro, a spokeswoman for the group. “California has successfully closed other [developmental] centers, which demonstrates we know how to do this right.”
That sentiment was echoed by Carolyn Davis of Huntington Beach, an 89-year-old mother of a longtime Fairview center patient.
“My daughter moved out last May, and I was one of the ones who definitely did not want that to happen,” Davis said. “I’m not one to rant and rave about it, but they certainly knew how I felt about it.”
Davis said she’s thrilled now, because her daughter is much happier and more engaged since she made the move to a smaller residential care facility in Long Beach.
“I spent sleepless nights worrying about whether or not she would be OK,” Davis said. “I really was not believing it could go as well as it did.”
But, Davis added, she knows that won’t be the case for all of the residents at Fairview.
“For some people it almost is impossible,” she said. “Others have not had it go so well.”
Maggie Flavia has big worries about the transfer of her 43-year-old son, Pete, who had viral encephalopathy as a youngster and now has the mental status of a 3-year-old, she said.
“Pete’s totally helpless, he’s totally dependent, he cannot communicate,” Flavia said. “And I fear he’s going to be in big trouble.”
Doyle said he understands that fear.
“Family members are rightfully scared about their loved ones’ well-being,” he said.
The new community-based homes are “like a mini-clinic,” with ready access to physicians, well-trained staff members, and generators to run patients’ life-sustaining machines for three days in case of a power outage, Doyle said. “We’re hoping some of these new models of homes will be an answer.”
Flavia remains unconvinced, but at the same time she knows hope is fading for the prospect of keeping Fairview open.
“We have a big battle in front of us. So we have to fight,” she said. “But I don’t know how to do it. I’m just a parent.”
This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.