OAKLAND, Calif. (KTVU) - A Northern California couple says their 38-year-old son with developmental challenges was forced to live in subhuman conditions while under the care of a service provider hired by a regional center.
"The mattress was so urine-soaked that it went through and rotted the box springs. The bed was on the floor with no sheets," Mitch Freese said about his son's living situation. "Sewage spilled out into the backyard where Joe played. Soiled clothing would just be left in his room."
In addition to neglect, Freese said his son, who lives with developmental and behavioral disabilities, endured severe physical abuse when he was in a state-run developmental center.
"You watch your child suffer broken bones. Bones on both eye sockets were broken by staff," Freese said. "Nobody cared."
The North Bay Regional Center based in Napa was in charge of finding care for Freese's son and for monitoring the service providers it hires.
NBRC is one of 21 regional centers statewide contracted by the Department of Developmental Services to fulfill the state's legal obligation to ensure more than 330,000 people with developmental disabilities live fulfilled lives.
"You watch your child suffer broken bones"
Freese's experience echoed the worries of other California families with developmentally challenged loved ones.
In all, 2 Investigates recently sat down with seven families and two former regional center service coordinators who detailed allegations of abuse, neglect and failure by the agencies to properly investigate cases impacting disabled clients.
The group of parents, who do not personally know each other, reached out to 2 Investigates after seeing this news organization's multiple reports on abuse in California's disabled care industry and cases of violence and neglect going unchecked by an overwhelmed oversight system.
"[When I watched the report] I was so overwhelmed with gratitude. Somebody was going to start looking into all of this. There is no oversight at the regional centers," said Martha Regalado, a former regional center employee.
Marie Doboue of Martinez also watched the investigations and reached out to share her frustrations with the regional center system. She has a 7-year-old son with Down syndrome.
"[Service provider staff] left my son out for two hours. No clothes, no shoes," she recalled. "And when I came home I had to take him to the emergency room because he was sick. My neighbor told me they found him in the street."
Emails obtained by 2 Investigates shows Doboue reported the incident to an employee with the Regional Center of the East Bay which oversees Doboue's son as a client.
"When I started complaining, the regional center didn't do anything," Doboue claimed.
Regional centers can't comment on specific cases
2 Investigates reached out to every regional center identified the meeting with parents and former regional center employees. Three regional center executive directors said they could not comment on specific cases due to client confidentiality. Other centers did not speak about specific allegations, but said in general, they were taking the complaints seriously.
Gabriel Rogin oversees the North Bay Regional Center, the agency with which Mitch Freese's son is a client. "There is no greater priority for NBRC than the health and well-being of the people we service. When we identify concerns with our vendors, we take action to address them," he said in a statement.
Lisa Kleinbub, the executive director of the Regional Center of the East Bay, where Doboue's son is a client, said her agency has zero tolerance for abuse and neglect.
"We know that individuals with intellectual and developmental disabilities are 2.5 to 10 times more likely to experience abuse than other people," Kleinbub said. "Therefore, it is imperative that when abuse is reported that it is followed up on and addressed. It is our responsibility."
Kleinbub further explained regional center staff are mandated reporters and follow both child and adult reporting laws. Although staff are not investigators of crimes, it would be unacceptable for any staff at her regional center to not report abuse or neglect, she said.
Fear of retaliation
But many don't report. Of the nine cases this news organization individually looked into, eight of the parents and both former regional center employees said fear of retaliation for reporting problems is pervasive in the industry.
Whether it's losing one's job or losing crucial services a family relies on, the parents and former employees said they believe problems in the disabled care industry are worse than have ever been publicly reported. They believe service providers call the shots, not the regional centers, because they know how desperately services are needed.
"[The service provider] can call you today and say we're not coming anymore. We drop you. They make you scared so you don't talk," said Doboue. "How am I supposed to provide for my son?"
Added Mitch Freese: "When you do find a placement you are always concerned about that 30-day notice and you have to leave."
Several families shared their experiences anonymously, still fearful that coming forward may compromise their loved ones' services.
"This is a reveal we need to address"
Out of all the regional center executives and state department officials 2 Investigates reached out to, only Javier Zaldivar with San Andreas Regional Center agreed to sit down for an interview. Zaldivar said he was surprised to hear some parents fear retaliation for reporting service provider issues.
"That's actually very disturbing and frankly I'll take it back to my team," said Zaldivar. "This is a reveal we need to address."
Zaldivar admitted the regional center system is strained statewide. Recruiting staff for service providers is the number one problem, he said. The issue is a result of low pay rates set by the state and competitive minimum wages attracting potential recruits to other work options.
"It's hard to find staff with the skillset that's going to provide high quality care," he said. "I would not agree the [regional center system] is broken. It's under strain but not broken."
When asked if people like Freese's son's are falling through the cracks as a result of this system strain, Zaldivar said regional center management and service coordinators do their best.
"I couldn't tell you without certainty that won't find a family that won't tell you ‘I haven't seen my worker for the last several months' or ‘I didn't get this service back,'" Zaldivar said.
In regards to concerns about deaths, sexual assaults and cases of neglect as a result of a lack of oversight, Zaldivar said: "There have been incidents in question and often the question is was the appropriate staffing in place. I don't know if it's about oversight or the quality of staff providing the care."
"It's under strain but not broken"
The Department of Developmental Services oversees the state's disable care industry. After repeated requests, a spokesperson declined an interview with 2 Investigates for this story, but in a statement wrote: "We take all allegations of abuse and neglect seriously and are committed to providing safe and appropriate services to Californians with developmental disabilities. DDS also ensures that families and consumers are able to file complaints of alleged wrongdoing so they can be investigated by the department."
In May, Gov. Gavin Newsom proposed rate increases for service providers. The Department of Developmental Services also asked for more than $8 million to reorganize the state agency.
Currently, four state department positions act as liaisons with regional centers. The proposal requests 19 additional positions to serve in that capacity. They would respond to complaints, attend regional center board meetings and train board members to ensure compliance.
Mitch Freese and the other parents said they're still sharing their experiences because the wheels of government move slowly. He and other parents said they feel the state is failing on its promise to the developmentally disabled community.
"As a parent of any child, you always tell your child if someone hurts you to speak up," said Freese. "And there comes a time...when your son and daughter is telling you they've been hurt and there isn't anything you can do about it."
Candice Nguyen is an investigative reporter with KTVU Fox 2. Send her tips and comments at firstname.lastname@example.org.