Treatment in transition: When a Developmental Center closes

Like the Sonoma Developmental Center, The Lanterman Developmental Center in Pomona was one of California’s last large institutional care centers for people with profound developmental disabilities. When it was ordered closed by the state in 2010, the population of the 302-acre campus had dwindled from a peak of nearly 3,000 in the late 1960s to 398 when the facility was shut down. Over several years, in a process that will soon take place at the SDC, all but a few of those patients have been moved off-site. Here is the story of some of those patients.

Lauren Gold | Special to The Sun

David Stein’s fingernails have almost completely grown back now, so that an observer can barely tell he once, while he was living in a state institution, ripped each one off with his bare hands. The 36-year-old developmentally disabled man, who has aggressive and self-abusive behavioral issues, now has a steady job with a manufacturing company in Rancho Cucamonga and hosts his family at his new group home in San Bernardino for Thanksgiving and Christmas. His mother, Renee, whom he calls twice a day, says he seems to have never been happier.

But when the California Department of Developmental Services told Renee Stein, 61, of Alta Loma, nearly (four) years ago that the state was going to close Lanterman Developmental Center, where David had lived for 18 years, she thought her son’s life was over. The Pomona facility had been David’s home, the staff knew him well and took good care of him and he was safe to roam Lanterman’s grounds without concern of misunderstanding or pointed stares, his mother said.

“We fought tooth and nail to not have Lanterman close,” Stein said. “I could not have imagined anything more terrible. … Self-abusive behaviors are frightening when you think (they) are going to live in a group home, but he has just done so well I can’t believe it. He is doing 500 percent better than he was at Lanterman.”

Stein’s son moved into a 24-hour care group home one year ago. Despite her fears of leaving his beloved home at Lanterman, Stein said her son has flourished physically and mentally since.

David is one of the many developmentally disabled Americans who have transitioned into community homes as public opinion and lawmakers back a cultural transition away from large institutions that keep developmentally disabled citizens separate and toward a more integrated approach. The change is also designed to save state costs, legislators say.

Following other states in the country, California began shutting down its six developmental centers in 2004 with the closure of Agnews Developmental Center in San Jose, completed in 2009. The DDS announced the closure of Lanterman in 2010 and has set a goal to fully close the facility by the end of 2014. There are 170 residents left living at Lanterman, a facility that at its peak housed 1,000 people.
State Sen. Carol Liu, D-Glendale, who is on the Senate Health and Human Services Committee, said this transition in attitudes and distribution of funds has been a long time coming.

“It has been the intent of the Legislature for about 50 years to close these institutions,” Liu said. “These things are really hard but we are moving away from institutionalizing people, and I’m in favor of that. I don’t think institutions are healthy places where people are all of like kind and all stick together. It’s better for all of us to have an experience with all kinds of people.”

Many of the fears about treatment at the developmental centers were only enhanced by findings from the U.S. Department of Justice in 2006. The DOJ cited Lanterman after 275 allegations of abuse or neglect were made in 2003-04 and noted that many Lanterman staff members failed to report incidents or did not track them correctly.

Media reports also surfaced in 2012 of significant abuse of residents at Sonoma Developmental Center, including one case of rape and pregnancy of a developmentally disabled woman living there and another case where a male resident nearly died from a broken neck.

This month, the California State Auditor’s Office released a scathing report citing the state’s developmental centers for not effectively investigating incidents that put residents’ at risk and said the DDS has still not addressed “long-standing problems” cited by the attorney general in 2002. In a response to the audit report, the DDS said it has taken significant steps to improve its reporting system, educate staff on sexual assault and ensure that it thoroughly investigates all reported incidents.

“The auditor’s report confirms issues already being addressed by the department,” the letter reads.
However, for Assemblywoman Shannon Grove, R-Bakersfield, these incidents are reason enough to close all of the centers as quickly as possible.

“Somebody has to be a voice for these people,” Grove said. “There is a more vibrant and fuller life for these individuals out in the community.”

But like Stein, the families of many Lanterman residents praised the developmental center as a safe space offering quality care. Most describe being horrified at the thought of their loved ones, many of whom had lived in the center since childhood, being pushed outside its walls.

For John Borack of Fountain Valley, keeping his brother Gary, 59, in Lanterman was his mother’s dying wish. Gary had lived at Lanterman for more than 50 years before moving into a community home in Mission Viejo nine months ago.

“We really appreciated the quality of service and care that Gary received at Lanterman. It was his home,” said Borack, 51, who grew up in Hacienda Heights. “When they announced the closure … there was a lot of trepidation on our part just wondering how this is all going to shake out.” Since moving into the home, Gary has done well so far, his brother said, and despite his mother’s fears, he is receiving the same level of care he did at Lanterman.

Bob Hazard, whose sister Susan moved into the community three months ago, said he sees the change from institutions to community homes as more than just a budget issue; he said he’s seen a shift in public opinion about the institutions over the last few decades.

“After ‘One Flew Over the Cuckoo’s Nest,’ that movie had a big effect on the developmental centers nationwide because people thought they should be allowed to live in the community,” said Hazard, 66. “We are fighting a nationwide de-institutionalization ideology, because most people don’t understand who these individuals are who have been living in the developmental centers.”

Susan Hazard, 62, moved into a group home in Temple City in March after 52 years at Lanterman. Bob Hazard said his sister, who is “profoundly mentally disabled,” has been doing “very, very well” since the transition, though the move was not without anxiety.

But for Riverside resident Jerra Letrich, the fear of moving her sister into the community still consumes her. Her sister Brenda, 50, who is severely autistic with behavioral issues, still lives in the developmental center, and Letrich fears that it will be nearly impossible to find an appropriate place for her, or the others remaining at Lanterman, in the community.

“I believe there are not suitable homes for some of these clients because the models don’t exist in the community to care for these clients,” said Letrich, 54. “If you don’t like developmental centers, that’s OK, but you need to have equal or better available elsewhere. I would say many, probably most, of the families of the clients remaining would absolutely fight to keep Lanterman because they are fearful for their loved ones lives if they move out.”

In addition to the fears about of moving out, now that the closure process is coming to an end, Letrich said she also fears what she says is deteriorating care at Lanterman due to staff reductions. She filed a complaint in May against the DDS for allegedly putting residents in danger, and her letter was one of several submitted by parents regarding resident care and even resident deaths both in and outside Lanterman since the closure was announced.

Letrich and other family members have attended the many legislative and DDS hearings on the closure to express their concerns and advocate for the developmental centers to remain open. Nancy Lungren, spokeswoman for the DDS, said the department has maintained the necessary staffing levels to keep residents safe and has a specific procedure and staff team in place to facilitate a smooth transition.

“The Department of Developmental Services’ highest priority is the health and safety of the people served throughout the developmental center system including those who reside at Lanterman Developmental Center,” Lungren said in a statement. “The Department takes seriously this commitment, especially during the closure of a facility.”

In 2013, there have been four self-reported incidents at Lanterman, three of which were “unsubstantiated” and one of an “injury of unknown origin. There have been 28 deficiencies found this year by the California Department of Public Health during staff recertifications and complaint investigations.

Gloria Wong, executive director of the East Los Angeles Regional Center, which provides services for former Lanterman residents in the community, said the seven regional centers working with Lanterman residents have a thorough and successful process for transitioning them into the community.

“Small settings, a better quality of life, that’s why regional centers exist,” Wong said. “The preference for most families is that those services be created in the community.”

Letrich, however, she still feels the closure process has taken away her voice and taken the choice away from her sister.

“I believe the decision of the DDS have caused a dangerous environment, period,” Letrich said. “Anyone who thinks the closure plan is going well, I guess you’d have to ask them what their measure of success is.”

This story first appeared in the Pasadena Star-News. Photo by Gabriel Luis Acosta.