Can advocates save the prestigious rehab center from closure? The answer will tell volumes about the future of independent living.
While those of us with disabilities sit smugly behind the walls of protection created by the ADA and other laws of importance to the disability community, those same walls are showing definite signs of crumbling. The reason? Community support systems are being dismantled or eliminated, and civil rights laws for the disabled are being challenged at all levels. The latest battle in this war of attrition is being waged in California. In November 2002 the Los Angeles County Board of Supervisors voted to tentatively accept the closure of Rancho Los Amigos Medical Center in Downey, Calif., as a cost-cutting measure to help correct a $700-million budget deficit in the county’s medical system, effective in June 2003.
Other proposed closures affect the county’s network of trauma centers, but Rancho is the only public hospital in the region devoted solely to rehabilitation and other disability-specific services. The implications for people with disabilities, especially those of color, are immense. Rancho Los Amigos serves a 10-county catchment area and is located in a county that is 4,000 square miles. This area is more populous than any of the 42 smallest states, with a culturally diverse majority of residents.
Poverty, gangs and violence are still widespread in Los Angeles. Almost 50 percent of the spinal cord injured patients who receive rehabilitation services at Rancho are paralyzed by gunshot wounds. To help assure their safety while in the recovery mode, the hospital operates a secure floor with limited access. A speakers’ bureau of young former patients–Teens on Target–takes its message about the repercussions of gunshot wounds to thousands of students in the region.
Rancho is the only medical center in Southern California that is dedicated solely to the treatment of disabling conditions. It is a nationally recognized Center of Excellence in several treatment areas, and is the only source of quality rehabilitation services for Southern Californians who are impoverished and on Medi-Cal–California’s version of Medicaid. Since Rancho accepts patients from all six L.A. County trauma hospitals as soon as they are stable enough to be moved, most patients who are spinal cord injured, have brain injuries, serious burns, amputations and other disabling conditions that require rehabilitation find themselves transported to the Downey hospital within a few days after their injuries. Rancho also treats pediatric conditions. Dr. Irene Gilgoff, chairperson of the Department of Pediatrics at Rancho, is responsible for the only unit in Los Angeles County that will accept vent-dependent pediatric patients. “These children go on to lead normal lives after their hospitalization here,” says Gilgoff. “They go to school–including college–marry, and become employed. There is no other place wanting to deliver this care.”
The decision to close Rancho has created a backlash that elected officials would like to avoid. Within a few days of the November vote, 300 former patients and advocates held a rally at the hospital to focus media attention on the issue. The next day, 100 wheelchair users surrounded the Hall of Administration and clogged the aisles at a Board of Supervisors meeting. This strategy forced the supervisors to allow 30 people to testify on the closure–testimony that they seemingly ignored.
This is not the first time attempts have been made to close Rancho Los Amigos. The last attempt was about five years ago, under the guise of privatization. After a three-year study upheld the value of the services that the hospital provides to the community, Rancho was spared. But what’s happening today is different. According to long-time Rancho medical director Dr. Robert Waters, “This time the announcement came with no study, no public discussion, and no advanced warning. In fact, we didn’t even know that the supervisors were going to vote on the issue until the night before they met.”
While Southern California independent living centers are leading a public awareness campaign in hopes of mobilizing people to testify at future hearings, it is important to understand that this closure is not an isolated incident; it is just one more step in the continuing erosion of services that are aimed at helping people live independently.
Consider what has happened to the length and quality of rehabilitation services. The average length of time that newly-injured individuals are allowed to stay in rehab has been drastically reduced. Many patients are sent home prior to being completely stabilized or before they have had time to cope with the immediate psychological effects of their situations. Doctors and hospitals are gradually closing their doors to patients who rely on Medicare and Medicaid. These public insurance programs have reduced reimbursements to the point that only basic health needs are covered in many cases.
It’s not just medical care that is being diminished. A series of consecutive district court appeals to the Supreme Court has chipped away at the ADA, magically “curing” many job seekers who were once protected by the law due to their disabilities. Instead of the 54 million people originally protected by the ADA, it is estimated that about 16 million people are protected by the law’s employment provisions today. All this is happening at a time when unemployment for adults with disabilities still hovers at about 70 percent, just as it did before the ADA was passed in 1990.
Back to Nursing Homes?
People with chronic disabling conditions can expect serious health complications during their lifetimes. Rancho Los Amigos is the main resource for continuing care for Southern Californians with disabilities, with over 68,000 outpatient visits per year (see chart). Furthermore, ongoing care is provided for conditions that aren’t treated in other area medical facilities, such as SCI, post-polio syndrome, amyotrophic lateral sclerosis and multiple sclerosis. Specialists are available to treat urological complications, pressure sores, and to create customized assistive technology or orthotics to improve everyday function. Early and effective outpatient treatment helps prevent the need for hospitalization, allowing people with disabilities to maintain their independence.
Few other hospitals and clinics in the region are able to treat people with disabilities who seek routine treatment–especially if they use mobility equipment. For instance, accessible examination tables are rare, but Rancho Los Amigos has several. Barbara Rutherford, an artist from Long Beach, knows how important that can be. Rutherford, a C3 quadriplegic, has been receiving her gynecological treatments at Rancho since undergoing rehabilitation there in 1978. “People who are ambulatory are completely unaware of how inaccessible most ‘regular’ medical facilities are for us,” says Rutherford, “By staying healthy, I am also able to stay active in the community.” Rutherford paints, volunteers at the local VA hospital and attends college. Such independence would be impossible to maintain if the loss of specialized outpatient services at Rancho forced her to live in an institutional setting.
The closing of Rancho could also have a negative impact on California’s ability to implement the Supreme Court’s Olmstead decision, in which the Court validated the ADA’s requirement that government services must be delivered in the least restrictive setting. U.S. Department of Health and Human Services Director Tommy Thompson has even declared that funding should follow the individual, thus supporting service delivery and independent lifestyles in community settings. That might be easier said than done. When health care disappears or becomes unaffordable in the community, no amount of rhetoric will make it reappear.
If Rancho closes, seriously injured patients would be moved directly from initial trauma treatment to non-specialized acute care hospitals, then to home when they become medically stable–if support systems and required accessibility were present. It is far more likely that they would be sent to one of the dwindling number of skilled nursing facilities–nursing homes–that still accept Medi-Cal patients.
Without access to physical medicine and rehabilitation specialists, restorative therapies, independent living skills training, outpatient services and assistive technology, the prospects of “graduating” from the onset of a disability to a state of independent living are greatly reduced. Instead of moving people from institutions to the community, as envisioned by the Olmstead decision, people would be moved back to trauma hospitals for treatment of complications that arise from neglect or lack of care. And employment will remain an afterthought, blotted out by the need to focus attention on basic health and survival.
Greg Thompson, director of Social Work at Rancho, knows the value of good rehab when it comes to employment. Thompson received his initial rehabilitation at Rancho in 1977 following a C7 spinal cord injury. He has worked there in a variety of positions spanning 20 years. “Without the quality supports I received in beginning my new life with a disability,” says Thompson, “I would not have been able to earn my degrees and have a successful career. I’m passionate about the value of this institution, and I try to help every new patient understand how important the first few weeks or months in rehab will be to their futures.”
Other former patients share similar sentiments. “In looking back, Rancho staff gave me a start I might not have had–injured or not,” says Bud Sayles, director of the In-Home Supportive Services Public Authority in San Diego County, and quadriplegic at the C4 level. “While I was only a teenager, staff and former patients convinced me that I could work and achieve whatever other goals I chose to pursue.”
What Can Be Done?
The proposed closing of Rancho is part of a nationwide healthcare problem. California, with its effective home health care services, has always been seen as a Mecca to people with disabilities from other states where personal assistance services were not available. Doctors, hospitals and support services throughout the state accepted government health insurance, like Medicare and Medi-Cal. But things have changed. Managed care has proven ineffective in preserving the way of life we have come to enjoy. Many HMOs throughout the country have stopped treating patients on government insurance, leaving thousands of seniors and younger people with disabilities without coverage. Emergency rooms are crowded with people seeking routine treatments, and real emergencies can result in astronomical hospital bills.
The critical meeting of the L.A. County Board of Supervisors, when a final decision on Rancho’s future will be made, is scheduled for January 19. Southern California advocates are encouraging former Rancho patients and other members of the disability community to write, e-mail, phone or be present to assure that the county supervisors fully understand the implications of their decision. While discussion of Rancho isn’t scheduled on the current agenda, this will be a last opportunity for people with disabilities to express their concern about the proposed closing of Rancho.
If other tacks prove ineffective, the Western Law Center for Disability Rights may sue the county under Olmstead, the ADA and state anti-discrimination laws–if it can secure the resources to do so. “The county has an overall problem funding a continuum of trauma care,” says executive director Eve Hill. “They are solving that problem by cutting only the disability services. That is straight-out discrimination.”
Contributing editor Michael Collins lives in Sacramento, Calif.