05/05/2010 05:12 am ET Updated May 25, 2011

CA's Fiscal Crisis and More Hospital Closures: a Human Rights Issue?

This is a sad story about the imminent closing of the Lanterman Developmental Center brought about by California's fiscal crisis. Lanterman Developmental Center, located in Pomona, CA houses and provides employment and career opportunities to nearly four hundred Californians with acute developmental conditions like cerebral palsy, epilepsy, and autism.

Before: Keeping Sick People Away:

More than eighty years ago, the Pacific Colony was opened in Pomona, east of LA to house "feebleminded" inmates, or what citizens with autism, Down Syndrome and other developmental conditions were called in 1927. At the time, Pomona was an agricultural town between the San Gabriel Valley and the Inland Empire, nestled away from the growing Los Angeles. It was where the Martians chose to land in the 1953 War of the Worlds, far enough yet close enough from the big city of LA to house what was then known as California's "insane asylum." This was the time when the popular imagination was still raw with Jack London's Lepers of Molokai (1908) and believed that the best way to deal with developmental disabilities was the shun them away, far from sight. To quite literally, "colonize" them, compartmentalize the challenged and weak, and to stick them away .... in Pomona.

Over the years, America and progressive California grew up. We realized that colonies, like Indian reservations and internment camps, were bad ideas not simply because they were fiscally problematic or immoral, but because they struck an even deeper discontent. Perhaps like genocide, or ethnic cleansing, locking large numbers of people away in "special camps" was wrong because, well, it felt wrong.

What ultimately helped us understand these injustices was finally having colonies, camps, and reservations in plain view. Japanese internment occurred before our eyes on the racetrack and stables of the Los Angeles County Fairgrounds, among a dozen other "civilian assembly facilities." Urban sprawl forced the greater LA to swallow the Pacific Colony, leaving it like an urban island. And today, big LA is finally reaching the borders of Native American reservations like Morongo in Cabazon and Pechanga in Temecula, bringing economic development with sprawl. Obsessed with image, but incredibly diverse and sensitive to perceived wrongdoing, LA evolved over the years. Local, statewide and nationwide initiatives were born to remedy these problems.

California's Golden Age: The Growth of Lanterman Developmental Center:

After WWII, the Pacific Colony was renamed to Pacific State Hospital. The name change in 1953 marked a statewide shift in understanding that had begun in the 1930's. No longer were residents of Pacific considered "inmates" but "patients" who were sick and needing treatment to be made well. The new use of the socio-psychological term, and increased emphasis on social workers, psychologists, and in-service training for staff provided some of the practical evidence of this shift. The era also marked the start of a movement toward helping people with developmental disabilities prepare for living in the broader community.

In 1969, the Lanterman Mental Retardation Services Act (AB 225) extended the state's existing regional center network of services for the developmentally disabled, while mandating provision of services and supports that meet both the needs and the choices of each individual. This effort was led by California Assemblymember Frank D. Lanterman, a brilliant Republican state senator from Pasadena. Lanterman's insight was to prevent the growth of more state-run "hospitals" for persons with developmental disabilities, and to create a new model for services in California: "a model based on inclusion, that empowered families and persons with disabilities to make meaningful choices about their own lives." The bill was signed into law by then-Gov. Ronald Reagan, no tax-and-spend liberal. The Lanterman Act was not a partisan concern, but a basic issue of civil rights, inclusion and dignity. Accordingly, the role of the state and the role of families was meant to be complimentary, with the state providing facilities and funding for health care, and families collaborating to provide an economic, spiritual and material basis for communion with the residents. Lanterman also initiated the network of community resources known as the Regional Centers, which would provide material and health care resources to enable people with developmental disabilities to live a more independent and normal life in their own homes.

A second act, introduced in 1973 and passed in 1977, gave people with developmental disabilities the right to these services and supports. Among other things, it guaranteed:

  • Dignity, privacy and humane care;
  • Treatment, services and supports in natural community settings, to the greatest extent possible;
  • Participation in an appropriate program of publicly supported education regardless of the degree of disability;
  • Prompt medical care and treatment;
  • Freedom of religion and conscience, and freedom to practice religion;
  • Social interaction and participation in community activities

Today, the Frank D. Lanterman Developmental Center (or as some employees call it, LDC or Lanterman) consists of 21 residences, 1 acute hospital unit, a variety of training and work sites, a Vocational Training Center. LDC also offers recreation facilities, including a swimming pool, playgrounds, a camp, carousel, equestrian center, track, and a ballpark. Other entities housed on campus include a Research and Staff Training Building, the UCLA Student Immersion Research Program, a Child Day Care Center for community and staff members' children, a Credit Union, and the California Conservation Corps.

Driving into LDC campus from the north is truly a magnificent experience. The tree-lined State St. running through the middle of Lanterman, with its seventy-year old mature pecan trees, evokes feelings of peace, security, and comfort. Residents live and work in an environment that is safe, with access to first rate medical facilities for accidents that inevitably happen. In my last trip to LDC, I heard the story of an unnamed client (who has no living family) who had collapsed against a wall after an epileptic seizure and had to undergo extensive treatment. He was quickly rushed to the acute hospital on the premises and treated by nurses and doctors skilled in the unique needs of developmental clients.

The Closing of LDC: Tragedy & Human Rights

LDC has withstood WWII, and all of California's recurring earthquakes, and its recurring budgetary ebbs and flows. Part of the strength of LDC was its partnership with non-profit organizations for program and funding support, extensive outreach to the community, and strong protection by local and statewide leaders who understood the importance of a place like LDC for the broader community and the state. Nonetheless, in December 29, 2009, employees of LDC (already hard-hit by mandatory furloughs, salary cuts and spending freezes) were notified that LDC would be shutting down permanently. In mid-February, the California Department of Developmental Services announced that it was recommending the closure of Lanterman Developmental Center to the Legislature, leaving a small window of opportunity (until March 5, 2010) for public comment.

The driving force for the closure is, of course, California's fiscal crisis. But there are other more insidious plans at work too. LDC it turns out, now sits on 304 acres of extremely valuable real estate, situated between the upscale residential communities of Walnut and Diamond Bar. As Raymond Fong, the director of redevelopment for the City of Pomona has said bluntly, "It's a very important portion of real estate." Developers, it seems, have already started an intense PR and lobbying campaign to decide the fate of the property, before the Legislature has even voted on the closure!

As the closure debate intensifies, the rhetoric of commercialization and blatant disregard for the rights of the current residents is astonishing. Senate Bill 1196, introduced on February 18, 2010 by Negrete McLeod, is currently being debated to close LDC and Fairview Developmental Facility (in Costa Mesa, CA) by December 31, 2010. As of March 4, the Senate Bill has been referred to the Senate Committee on Rules. The wording (not to mention the "fast-track" nature) of the bill is especially troubling:

This bill would state the intent of the Legislature to enact legislation that would require the State Department of Developmental Services, by December 31, 2010, to close the Fairview Developmental Center, the Lanterman Developmental Center, or both, and to move consumers currently housed in the closed facility or facilities either into the remaining facility or into community placements appropriate for serving their needs. The bill would further provide that the legislation would require that plans be made for the property to benefit community-based services for persons with developmental disabilities as well as the state General Fund.

The choice of the word "consumers" to describe Lanterman and Fairview residents sheds light on how McLeod and others view "persons with developmental disabilities." After all, the word 'consumer' evokes images of takers, users, beneficiaries, or less-euphemistically, of social parasites. A consumer is the antonym of 'producer,' or one who contributes to society. As the official History of Lanterman Developmental Center, makes clear terminology is critically important in the context of developmental disabilities:

People with developmental disabilities are now perceived as individuals with special needs rather than "patients," and referred to as "clients". By dropping "State Hospital" during the nineteen-eighties, Developmental Centers throughout California adopted this philosophy and promoted the fact that all clients receive progressive habilitation training.

As the U.S. Supreme Court warned in Cleburne v. Cleburne Living Center, Inc., 473 US 432 (1985), lawmakers are often prone to addressing the difficulties of developmentally disabled individuals "in a manner that belies a continuing antipathy or prejudice and a corresponding need for more intrusive oversight by the judiciary." Social stigma against the developmentally disabled is particularly prevalent still. New employees at LDC and regional centers go through rigorous training to break stereotypes about developmental disabilities, and to make sure that residents are referred to as 'clients'--individuals who are served by the state--versus 'patients,' sick folks that need to be healed. In fact, they face disciplinary action if they mistreat or miscategorize residents as 'patients' or disparage their abilities. This reflects the reality that developmental disabilities are often life-long conditions, and individuals who have these conditions are not "sick" or "incurable" but rather go through life with certain limitations. The term 'consumer' is used by the DDS to refer to the broader California community of adults with developmental disabilities, but by custom, it has never been applied for residents of LDC.

Yet the bonanza to cash in on the LDC property has turned LDC residents into 'consumers.' Aside from being deeply offensive, the commodification of LDC residents bespeaks a greater injustice--and that is, the deprivation of their rights as stakeholders and citizens in their society. LDC is their home. Though many residents are wards of the state, all LDC residents maintain their individuals moral and legal rights to certain fundamental human rights. One of these rights is their fundamental 'stakeholder right' as citizens and residents of California. In other words, LDC residents own a part of LDC along with the rest of the citizens of California. This distinction is important. LDC residents are people who have made Residence 17 or Residence 2 their home for much of their lives. Like millions of families across America, LDC residents go to work in their community shops, enjoy fellowship with families and friends, and at the end of the day go back to their adobe homes. This is their community. On the weekends, they garden, attend church and take field trips with staff. LDC residents are not there for treatment or to "take" from the state. They live at LDC and many die at LDC. They are adults who are assisted in basic health care, food and personal hygiene by some of the most dedicated and skilled nurses in the country who give more and more each week to the LDC family to receive a pittance of what they could make on the private market. But the point of LDC was never about money, consumerism or property.

LDC was about providing a safe place for California's weakest individuals, those who literally had no place else to go. And Americans of all religious faiths and across all political parties--even the most strident conservatives--have always recognized that the state does have a duty to provide care for these individuals. In 1981, for instance, President Reagan signed into law the Medicaid Home and Community-Based Services Waiver program, section 1915(c) of the Social Security Act. The legislation provided a vehicle for California to offer services not otherwise available through the Medi-Cal program to serve people (including the developmentally disabled) in their own homes and communities. This is expensive care, as evidenced by the debates in Congress right now over federal health care overhaul, but for the neediest amongst us, it is indispensable life-or-death care.

For over eight decades, places like LDC have offered developmentally disabled individuals a chance to live meaningful, safe and productive lives; LDC reflects our deepest commitments to equity, fairness and the belief that all individuals are entitled to certain fundamental rights and protections. However, too often places like LDC are seen as 'expensive pleasures,' public charities, or worse, 'entitlement programs.' But, LDC is no public charity. Even in years of plenty, rich states like California partnered with private foundations and other community organizations to offset the costs of care. These sources of funding are increasingly scarce. Yet how we treat our weakest in these poor economic times is the truest test of the strength of our values. The Social Security Act was passed in the misery of the Great Depression to help the elderly live their lives with dignity.

May LDC survive the Great Recession to allow its residents to live their lives with dignity as well.

Please contact your California representatives and urge them to vote against Senate Bill 1196.