In December of 2010, a resident of Porterville Development Center (a California facility for the intellectual and developmental disabled, or I/DD), broke a rule. The directive he ignored was a simple one, issued by an employee named Alex* who had a history of violence: Stay here.
The 44-year-old, with the cognitive level equivalent to that of a 10-year-old, didn’t stay. He left the group area in which he’d been instructed to remain. “Polite” and “non-aggressive,” according state documents following the incident, he reportedly went to his room with the intention of lying down.
His noncompliance—however mild—enraged 6-foot-3, 400-pound Alex, who stormed into the man’s room, threw him to the ground, and began stomping on his back. Screams from inside prompted other staff to enter and stabilize the resident, holding down all four of his limbs. Alex wasn’t finished. He climbed onto the resident’s back and choked him until he turned a grayish-blue, lost consciousness, and went into cardiac arrest.
Most of the staff members panicked and fled the scene. One pushed Alex off and began mouth-to-mouth resuscitation—ordering the attacker to begin chest compressions. Alex reportedly performed just 10 before walking away and muttering, “Fuck him.” The client remained in the intensive care unit for 11 days on a ventilator with bruises in the shape of shoe prints. Eventually he recovered and was released.
Despite a history of abusing clients, including hitting, arm-twisting, and sexual assault, Alex had been cleared to go back to work at the clinic. He attempted to save his job yet again by coercing his colleagues to falsify documents, asserting that the resident had spit on him and hit him. One colleague eventually confessed.
There is a perverse sense in which the client who was beaten so badly was lucky: He lived. Since 2002, a combination of “abuse and neglect” by staff at California state-run facilities for people with I/DD has directly caused the deaths of 13 clients.
This incident is just one on a searingly tragic list that appears in a nearly 900-page document released this month by the Center for Investigative Reporting. Obtained after a two-year lawsuit with the state’s department of health, CIR’s report exposes recent abuses at five California developmental centers—where more than 1,100 patients are housed. With offenses ranging from rape to murder, the pages expose the dark underbelly of facilities designed to keep some of society’s most vulnerable members safe.
The wrongdoings are appalling. Staff at some facilities failed to prevent clients from falls and neglected to treat medical conditions, some of which turned fatal. They did nothing to protect clients from hurting one another—indirectly leading some to gruesomely murder others. They raped clients and placed women on co-ed floors with men who had a history of sexual violence; they used a Taser on residents and were verbally abusive—saying things like “fucking retards” and “That’s why your mom doesn’t like you.” Beyond abuse, the report exposed many of the facilities’ poor physical shape, finding kitchens infested with cockroaches and overrun with rats.
Despite the abundance of evidence, the police repeatedly failed to investigate and prosecute such crimes. At least one of California’s developmental centers, Lanterman, closed. Porterville and others remain open. Nancy Lungren, spokesperson for California’s Department of Developmental Services, told The Daily Beast that her organization takes these findings very seriously. “When deficiencies are identified, plans of correction are implemented and submitted to CDPH for approval. Many of the incidences reported are over a decade old and deficiencies addressed and resolved,” Lungren said. “DDS is fully aware of the need for continuous improvement in the delivery of services at the Developmental Centers.”
The release of the Department of Public Health’s investigations raises new questions about the state of mental institutions for people with I/DD in America. Intellectual and developmental disability is often a misunderstood topic. It’s a disability in which people have an IQ below 70-75 and face significant challenges in areas such as self-maintenance skills, social skills, and abstract thinking. It is estimated that 1 to 3 percent of the population has I/DD, manifesting in conditions such as autism and Down syndrome.
Options for long-term care for these individuals have long been debated. Following the Supreme Court’s Olmstead v. L.C. ruling in 1999, there has been a widespread movement to end entirely the housing of people with I/DD in larger facilities. Home- and community-based services (HCBS) are preferred, which involve supporting families so that they can take care of people with I/DD in their family homes. If that is not possible, then housing and support is arranged in very small groups that are dotted around the community.
The National Council on Disability, an independent federal agency that helps craft policies related to disability, issued a report based on peer-reviewed research comparing large facilities with various home- and community-based options. The preponderance of the peer-reviewed data they gathered indicate that people with I/DD who live alone, with their families, or in very small group settings—as opposed to those in larger facilities—had more self-determination, were less lonely, experienced greater satisfaction, and exhibited fewer challenging behaviors. Even people with severe disabilities were more likely to be able to make choices for themselves in smaller facilities. Health outcomes, however, particularly regarding obesity, tended to be better in large facilities.
Tony Anderson, executive director of The Arc of California—a national advocacy organization for people with I/DD—is strongly in favor of the HCBS option. “Everyone with a developmental disability can live fully in their community,” he commented.
“We have over a century of evidence telling us that all institutions, no matter how beautiful, no matter how carefully designed, no matter how well-intentioned, fail. Every time,” added Julia Bascom, director of programs at The Autistic Self-Advocacy Network, a disability rights organization run by and for autistic people.
HCBS seems like it would be significantly more expensive than housing people in larger facilities, but the opposite is the case. According to figures from the National Council on Disability, in 2009 the average yearly per capita cost of maintaining someone in a large facility was $188,318, while HCBS cost $42,486.
The debate around institutions is further complicated by social factors.
Bascom argues that an “enlightened” version of large institutions is impossible. “Any time you take one group of people, force them together because they share a stigmatized characteristic, isolate them from the broader community, and exercise control over their lives—who they can see, what choices they can make, what and when they will eat, who they will socialize with, where they will live—it’s an inherently bad thing,” she said. “The problem is that they are segregated and deprived of choice, control, and community. The problem is the setting.”
When asked how we should approach housing and support for people with I/DD, Bascom replied, “Start by asking us! Whether or not we can talk, we have preferences and goals. Figure out a way to hear what we are saying, and start there. Work out what sort of life we envision, and then figure out what sort of supports need to be put in place to enable it (this is usually called person-centered planning.)”
Dominic Sisti, director of the ScattergoodEthics Program and assistant professor at the University of Pennsylvania, suggests that a dissolution of all larger facilities should be rethought in the case of mental illness. A small percentage of such patients could benefit from larger facilities. In an interview, he agreed that we should reconsider asylums for a small number of people with I/DD as well. He acknowledged the many problems that have plagued larger facilities, but did not think that meant larger facilities are inherently terrible places.
“Past institutions were awful, but appeals to history are not compelling. The history of biomedical research is riddled with serious abuses, but we didn’t stop science. We built in ethical protections and oversight; it is still not perfect but it is dramatically improved,” he told The Daily Beast. “The same could happen with long-term care in psychiatry. The past does not necessarily predict the future."
Sometimes, however, it is the families of people with disabilities who most volubly disagree with the HCBS approach.
Even in California’s beleaguered system, families are begging to keep larger facilities open. Amy Lutz is the mother of a severely autistic son and president of the EASI Foundation, which is aimed at ending aggression and self-injury among people with I/DD. She is ardently in favor of keeping large facilities as an option. "No one should be forced to live in a larger facility, but nobody should be forced to live in a community if they’re overwhelmed, or they need more supervision,” she says. “It's a violation of a disabled person's right to decide where they should live.”
Lutz charges that HCBS is not meeting its overarching goal, which is to integrate people with I/DD into the community. “A lot of families with loved ones in group homes are finding that there is not a lot of interaction with neighbors,” she says. “Neighbors are not inviting them over for barbecues. When my son socializes, it’s going to be with peers who are like him." The research that shows people with I/DD are able to make more choices in smaller settings, Lutz argues, obscures that there is a larger choice that is being taken away from people with I/DD and their families: the right to choose where to live.
"Autistic self-advocates claim the banner of choice, while they’re taking away huge swathes of choice. Choices such as what to eat and when to eat are a localized choice. To get to that position you’ve sacrificed huge amounts of choice. I just think [larger facilities] should be an option for people,” Lutz maintains. “The burden is on them to show that it is so egregious that it should not be an option.”
Many families worry that their loved one will not be safe in a small group setting. Without the watchful eyes of other employees, residents might injure themselves, elope, suffer abuse, or simply be ignored. Of course, as the documents from the California facilities amply demonstrate, more eyes do not always translate into safer outcomes.
Ari Ne’eman, National Council on Disability's Entitlements Committee chair (and president of the Autistic Self-Advocacy Network) disputed the idea that people with more severe disabilities require the supervision provided by larger facilities. “It’s not consistent with the research or the reality that we see in the states that have moved to an all HCBS system,” he said. “If you look at a state like Oregon, which eliminated the use of institutions for people with developmental disability, and compare it to a state like New Jersey, which has a very high rate of institutionalization, you quickly realize that the difference is not in severity of disability, it's in the political will of policymakers to make progressive change in their support systems.”
Christine Montross, assistant professor of psychiatry and human behavior at Brown University, worries that moving from institutions to HCBS would just encourage more of the cost cutting that has so depleted care for people with I/DD. As a younger generation with higher rates of autism ages into adulthood, the need for funding is going to be more dire than ever. “Our society has shown a consistent willingness to slash budgets to community mental health care. Would a really excellent, really well-funded community system work?” she mused. “Theoretically it could, but I don’t think we will see it.”
“We’re at a place now where we can provide good care in a larger setting if it is appropriate for the individual,” said Sisti. “Does this cost too much? That depends on our priorities as a society. A budget is a moral document. If we’re saying it’s too expensive to take good care of our most vulnerable citizens, that’s a statement.”
In November 2011, a client at the Sonoma Developmental Center in California was discovered to have eaten part of her shirt. The client was non-verbal and had a long history of pica (the tendency to ingest non-edible items). She was supposed to be dressed only in special non-tear clothing, but a staff member had dressed her in a regular T-shirt.
Four days later, the client lost her appetite and seemed lethargic. Then she started vomiting bits of cloth. The staff notified a physician repeatedly about her worsening condition. The physician “seemed annoyed” and refused to see her. Finally, over 12 hours later, the physician agreed that the client be taken to a hospital.
By the time she got there, she was unresponsive. She died just a few days later, her death attributable to two separate failures: the neglect of staff to dress her properly and the cruel indifference of a physician.
What’s patently clear is that the current system is broken—grossly failing to support the people who need it. Whether they are in HCBS or large facilities, people with I/DD need far better funding, support, and care from other members of their communities.