Speaking out for People with
 Intellectual and Developmental Disabilities

CA Coffelt Case Study 2000

2006 Update to Coffelt Case Study

March 2000

William Coffelt v. California Department of Developmental Services:
A case study of one class action by Protection and Advocacy 

Executive Summary

This case study is designed to support the requests of Voice of the Retarded (VOR) for changes in the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) to assure health, safety and quality of care for people with severe and profound mental retardation. With these changes, VOR supports reauthorization.

VOR feels strongly that some DD Act program activities, including class action litigation, work against the best interests of some people with mental retardation by eliminating specialized services settings such as the Intermediate Care Facility for the Mentally Retarded (ICF/MR; a/k/a institution or developmental center).

Findings related to the Coffelt class action lawsuit, detailed in the full document, include:

(1)        In 1990, P&A filed a class action lawsuit due to the complaints of thirteen families. A survey of over 5,000 developmental center families found that 98% did not wish to participate in the lawsuit. Despite these findings, P&A negotiated a Settlement Agreement to transfer 2,000 residents from several California developmental centers into the community.  This initial exclusion of families opposed to P&A activities continued throughout the entire process, and continues in large part today.

(2)        Peer-reviewed research published between 1996 and 1999 found risk of mortality from 72% (1996) - 88% (1999) higher in community-based settings as compared to developmental centers.

(3)        Numerous media reports since the implementation of the Coffelt settlement agreement have detailed systemic problems of abuse and neglect in community-based settings ill-prepared to accommodate the thousands of individuals being transferred from developmental centers.

(4)        California officials have suspended implementation of the quality assurance provisions of the settlement agreement. P&A demurred.

(5)        A developmental center physician concerned for the health and safety of those under his charge filed suit to halt transfers he knew were medically ill-advised.  P&A intervened to challenge the physician’s concerns.

(6)        In 1997 HCFA suspended federal funding for California’s home and community-based waiver services in light of problems noted.

(7)        To date, P&A has taken no action to redress the concerns related to California’s community-based system of care as a result of its Coffelt class action lawsuit.

William Coffelt v. California Department of Developmental Services
A case study of the impact on people with severe and profound mental retardation and their families as a result of a lawsuit brought by Protection and Advocacy that resulted in the closing of two large California facilities

 I.          Introduction and Purpose

This case study is designed to support the requests of Voice of the Retarded (VOR) for changes in the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) to assure the health, safety and quality of care of people with severe and profound mental retardation.

VOR supports reauthorization of the DD Act with the inclusion of our recommended changes.  It is our concern that S. 1809, the Senate-passed reauthorization bill, does not adequately protect people with severe and profound mental retardation from some DD Act program activities. These activities, including class action lawsuits, are often aimed at eliminating Intermediate Care Facilities for the Mentally Retarded (“ICFs/MR,” a/k/a “institutions” or “developmental centers”) over the objections of the parents and guardians of the residents who cannot speak for themselves.  ICFs/MR are federally-funded, federally-certified and monitored residences uniquely suited to the needs of many people with severe and profound mental retardation.

This monograph provides Congress with an in-depth review of one of Protection and Advocacy’s federally-funded class action lawsuits. This one case has had a very negative impact on thousands of citizens with mental retardation in California (including the avoidable deaths of many), their families, the system serving their needs and concerned professionals and policymakers across the country. It offers Congress important, and timely, insight into the dynamics of federally-funded class action litigation aimed at eliminating the ICF/MR option. We hope the House of Representatives will use this information to amend the DD Act reauthorization to prevent a recurrence of such activities and their adverse consequences.

II.   Coffelt Case Background

In 1988-1989 there was an influx of children with behavior disorders at Sonoma Developmental Center (SDC) and other California developmental centers.  It reflected the failure of the Regional Center (RC) system[1] to meet current needs in the community.

SDC had not been admitting children, save for severely disabled infants, for over 12 years.  SDC was suddenly confronted with a higher functioning, mobile group of youngsters for whom they were unprepared and understaffed.  No one disputes that several residents, including Billy Coffelt, Jr., were injured.  It was clear that the conditions at "The Oaks," the unit set up to house and care for this group, were inadequate and, as a result, abuse and neglect resulted.

Protection and Advocacy Incorporated (P&A) of California became involved at the behest of the concerned parents. In 1989-1990, P&A filed a class action lawsuit naming as Defendants the State of California, Department of Developmental Services (DDS), its Director Denny Amundson, the Department of Finance, and four regional centers. The following text, drawn from an attachment to the settlement agreement, outlines the complaint:

"Plaintiff's action challenged Defendant's implementation of the Lanterman Act and compliance with other laws.  Plaintiffs alleged that Defendants' policies, practices, and actions caused or resulted in a critical lack of stable, quality, integrated community residential living options for developmentally disabled persons in California. Plaintiffs further alleged that over 2,000 persons currently residing in state developmental centers are inappropriately placed (emphasis added) pursuant to their IHP/IPPs and that other individuals currently residing in the community are being denied more appropriate and less restrictive community options based on their IPPs."

The State appeared to resist the action until Denny Amundson was named DDS Director in 1990-1991.  It appears as if Mr. Amundson saw in the Coffelt action an opportunity to further the administration’s goal to privatize services for people with developmental disabilities.

III.  Family Reaction

When the Coffelts voiced their discontent in 1989, Sonoma's Parent Hospital Association (PHA) attempted to assist and work with the group of 10-13 parents who were challenging DC residency.  PHA wanted to help the abused individuals but not to close the whole facility.  PHA’s efforts were spurned and its members insulted and rejected.  State Senator McCorquedale initiated statewide hearings.  In one hearing at Santa Rosa, the Sonoma County seat, PHA was condemned as a "company union" controlled by helpless reactionaries.

Early negotiations and agreements between P&A and the state, which formed the foundation for the ultimate settlement agreement (January, 1994), did not include families of the residents in developmental centers.  Despite the fact that a survey of families regarding their interest in participating in the class action found that 98% of those surveyed did not wish to participate in the suit, P&A did not restrict its efforts to addressing the problems of 10-13 residents of SDC.  Instead, it negotiated an agreement to transfer 2000 residents from several developmental centers into the community.

When news of negotiations became known to the California Association of State Hospital Parent Councils for the Retarded (CASH/PCR), the statewide family organization representing developmental center residents, during 1992-1993, CASH/PCR engaged attorney William Sherman to represent the parent organizations in opposition to the large scale community transfers and to closing developmental centers. The court was unmoved by the 11th hour effort.  In January, 1994, the court disallowed the motion to intervene as untimely and granted approval of the settlement agreement.

 The Coffelt Settlement Agreement, approved by the court in January 1994, required the state to downsize its developmental centers by 2,000 individuals in five years[2], suspended admissions, and contained requirements to establish a quality assurance program.  No quality assurance program was put in place until the transfers were completed.

IV. Family/individual rights abused

Throughout P&A's involvement, its sole motivation appeared to be  a social, ideological agenda of closing the state developmental centers.  P&A ignored family member pleas regarding the exposure of their children to health and death risks related to hasty community placements.  Instead, P&A pressed the state to move as rapidly as possible without regard to the adequacy of  community preparation. P&A, relying on its 13 named client plaintiffs, maintained exclusive control by squelching organized developmental center family efforts to participate.  During the course of settlement negotiations a regional center recommended the inclusion of families.  P&A immediately squelched this proposal.  The state evidently concurred.  These settlement negotiations were conducted in secret and only bits of information were subsequently reported to families by insiders who sympathized with their concerns.

Following entry of the Coffelt Settlement Agreement in January 1994, P&A failed to react when DDS arbitrarily suspended quality assurance measures.  DDS argued suspension was required to accommodate accelerated placement demands.  This flagrant disregard for the welfare of residents occurred simultaneously with California's confronting a series of financial crises that required drastic budget reductions in services and programs serving people with developmental disabilities.

The Health Care Financing Administration (HCFA) 1997 investigative reports bear out the pitiful inadequacy of California’s monitoring agencies, Department of Health Services (DHS) and Department of Social Services (DSS).  No funds were found to pay for oversight of the more than 2000 developmental center residents thrust upon the communities in a period telescoped from the court ordered five years to 36-42 months.  Paradoxically, DDS paid Dr. James Conroy several million dollars to "study and verify" that "all is well" in moving DC residents to the community.  Dr. Conroy's patent assurances have become legend among family organizations throughout the United States.  The clients and their families were left with half truths and deceptions while Dr. Conroy profited from the state's need to rationalize its irresponsibility.

V.  P&A lawsuit: Summary of parent/family concerns

Parent/family organizations are convinced of the following:

a) At least one-half of those persons transferred were unrepresented by family members.

b) Families of "represented transferees" were bullied into agreement with threats such as "if you don't move quickly, only the poorest facilities will remain for your kin."

c) Many families were confronted with "fait accompli" transfers, i.e. only after arrangements were complete were the families notified.

d) Regional centers, charged with securing residential and other supports for the people transferred from the developmental centers were undermanned and overtaxed with finding new beds, hence hampered in locating community-based services equipped to accommodate their complex needs. They were also effectively precluded from determining the status of transferees once placed in the community.

e) Regional centers as well as community care providers pled openly at legislative budget hearings for even modest increases in funding in order to remain viable; numerous providers were forced to close.  Those remaining decried the chaotic conditions caused by the budget shortfalls and consequent inadequate funding.  P&A and DDS pressed on, throughout 1994-1997, irrespective of human carnage, to assure settlement quotas were not only met, but exceeded.

f) Families barred from participating in the implementation process, were denied knowledge of information regarding the disposition of more than $300 million in federal money, obtained by P&A through HCFA and committed to the State for purposes of implementing the transfers to the community.  We have reason to believe that HCFA's 1997 punitive audit and suspension of regional center community waiver funding in California may relate directly to failures in accountability and unfulfilled representations by the parties to the Coffelt settlement.

VI.       Institutional closures in response to the Coffelt Settlement Agreement

Not only was P&A’s decision to seek institutional closures as a solution to a limited problem ill-conceived, but implementation of the solution wreaked unnecessary havoc on the remaining institutions and, more important, on the lives of the people who were moved into the community and their families.

In light of the Coffelt Settlement Agreement to reduce the developmental center population by 2000 while permitting no new admissions, DDS determined to close Stockton Development Center, the oldest and smallest among it seven remaining facilities.  During 1995, several hundred remaining Stockton Developmental Center residents were shuttled to other developmental centers or placed in community homes.  Transfer trauma often resulted.  Many persons were moved more than twice, resulting in lingering maladjustments.  "Revolving door" facilities became commonplace as the system readjusted residences.

DDS announced plans to close Camarillo Developmental Center (Ventura County, Southern California) in 1996.  Camarillo had long been a highly respected center for medical research for the mentally ill and mentally retarded.  The community supported retention of the facility.  Significant resistance resulted in the governor appointing a commission (hand picked) to "study" the proposal.  The parents sued.  However, their attorney, suffering from poor health, failed to move quickly enough to forestall DDS's well-orchestrated transfer activity.  By the time the commission report was digested and an order enjoining further transfers was obtained, DDS had already achieved its objective.  Camarillo closed in 1997.  A majority of residents transferred to Fairview Developmental Center (south of Los Angeles).

Fairview, while having vacated a large number of beds due to earlier transfers, expected to benefit from Camarillo staff transfers.  But a majority of the staff they counted on decided against moving from the suburban environment, well to the north of Los Angeles.  Thus, Fairview was drastically understaffed to handle additional transfers.  Numerous injuries and illness were reported by parents and family members.  Fairview was already under assault in the Richard S. suit (see below).  The Camarillo transfers exacerbated its problems.  Also, Camarillo was the primary site for "forensics."  Whereas this population had worked out well at Camarillo's rural venue, upon transfer the uninitiated recipient communities became alarmed over potential criminal behavior.  Protests arose about "prisons" in the neighborhood.  These problems remain today at the Lanterman and Porterville developmental centers where most forensic or behavior placements are sent.

Agnews (in Santa Clara's silicon valley), while initially targeted for closure, mounted a vigorous defensive effort to remain open.  The parents and family members became very vocal, convincing DDS to concentrate on the Camarillo closure and postpone further efforts at Agnews.  Currently, DDS claims it has no further plans for additional closures.

The population of developmental centers in 1994 was approximately 6600.  Today it is approximately 3700.

VII.      Implementation of the Coffelt settlement: Summary of family concerns

The failure to provide sufficient funds to implement the settlement and the absence of quality assurance protections in the community resulted in:

a) Numerous avoidable deaths directly attributable to irresponsible community transfers.

Recognition of increased (avoidable) mortality first came to light when Dr. David Strauss's mortality study became known to CASH/PCR.  It learned that Dr. Strauss had sent his results to DDS a number of months before CASH/PCR learned of them in approximately 1995.  DDS begrudgingly acknowledged the study but challenged its accuracy. DDS then proceeded to 1) warn the American Journal on Mental Retardation that it should not publish the peer-reviewed study, 2) write to the National Institute of Health stating that its funding of Dr. Strauss’s work was encouraging threatened litigation by the parents and 3) threaten Dr. Strauss and the California University system with a lawsuit if they did not submit all of Dr. Strauss's raw data and calculations for DDS review.

Notwithstanding several furtive efforts to debunk the Strauss Report (hired guns wrote attack articles for DDS), California's DSS & DHS (licensing/inspection) ultimately studied 20 deaths and determined in an official August 1997 report that "16 of the 20 deaths were deemed preventable or questionable.”  Dr. Strauss has prepared a number of reports following up on his initial effort.  He employed a variety of techniques to confirm the accuracy of each study.  To date, they have withstood numerous assaults without wavering from the peer-reviewed conclusion that up to 72-88% higher mortality rates are found in transfers from developmental centers to the community.

b) Despite a series of newspaper articles throughout the State, most notably in the San Francisco Chronicle, documenting macabre accounts of abuse of residents transferred to the community, P&A appears to have taken no action to stop the abuses.

c) The Richard S. lawsuit (discussed below) was essential to arresting transfer travesties caused by P&A's militant enforcement of the Coffelt Settlement agreement.  P&A sought to intervene in Richard S. to further defend the state’s policies borne of the Coffelt Settlement Agreement.

VIII.     Post-mortem: the William Cable and Richard S. lawsuits

Not only did the P&A lawsuit result in the closure of institutions that provided quality care for people with severe and profound mental retardation and in unnecessary abuse and deaths in inadequately prepared and monitored community placements, but once these problems had been identified, P&A took no action to redress these wrongs (see the discussion of Dr. Strauss’s findings and the San Francisco Chronicle series), but affirmatively opposed a lawsuit to stop the transfers until quality assurance mechanisms were put into place in the community.

The William Cable and Richard S. lawsuits arose as a consequence of several physician employees at Fairview Developmental Center, near Los Angeles, contacting attorney Frank Hardiman.  Mr. Hardiman initially viewed the doctor's complaints individually until pondering the concerns of Dr. William Cable.  Dr. Cable was under attack for trying to protect medically fragile clients from irresponsible community transfer.

Mr. Hardiman recognized a pattern of conduct at Fairview, as described by each of the physicians who came to him.  Fairview was transferring many unrepresented residents, regardless of medical condition.  Fairview administration would brook no interference from its medical staff and quickly disciplined transgressors.  Dr. Cable related a number of instances where medically fragile persons, transferred against his recommendations, had either died or experienced serious problems upon transfer.

Mr. Hardiman first filed an action on behalf of Dr. Cable seeking redress for damages and injunctive relief to restore him to responsibilities from which he had been removed.  He then filed a second suit (Richard S.) asking for injunctive relief on behalf of unrepresented medically fragile residents threatened by transfer or already transferred. Despite the well-documented problems, P&A intervened to support state policies after the court, in July 1997, already granted a preliminary injunction against further transfers of unrepresented Fairview residents, subject to contravening state court orders. Trial is currently set for May 2000.  The suit, in the meantime, was broadened to include additional plaintiffs (including CASH/PCR) and to be applicable to the remaining five state developmental centers.

Defendant DDS has initiated some corrective measures and proposed funding of some representation for those unrepresented.  Transfer activity diminished significantly in 1998 and 1999.  Follow-up mortality studies have been proposed, and more effort has been made to track transferees (unfortunately, Dr. Conroy has the current tracking contract).

Despite the peer-reviewed mortality studies and San Francisco Chronicle and other newspaper articles documenting the problems with community placements, P&A appeared blind to, and unconcerned over, evidence that transfers to the community resulted in resident abuse.  Even in the face of rising mortality rates, P&A publicly and forcefully defended the states policies in its defiance of the claims brought by Dr. William Cable in the Richard S. lawsuit.

Likewise, when P&A heard State budget hearing testimony about community inadequacies arising from the state's financial plight, P&A nevertheless chose to selectively press harder for accelerated community transfers, ignoring all the evidence.  Its pursuit of institutional closures -- over the objections of the family of the vast majority of residents being transferred and the reality of residents’ abuse and death in the community -- can only be explained by an ideological zeal for institutional closures that blinds P&A to the best interests of people with severe and profound mental retardation who may also be medically fragile and the wishes of those who love them most, their family members.

IX. P&A conduct in the Coffelt case and its aftermath:  Summary of the views of parent/family organizations

a) P&A should have consulted with the parent/family organizations at the institutions before deciding what remedy to pursue on behalf of the 10-13 clients who claimed abuse.

b) P&A should have worked to assure there would be no abuse of the HCFA funds supporting the developmental center and community-based system of care. Instead, their advocacy resulted in a state of affairs that jeopardized the existence of HCFA-certified ICFs/MR and HCFA funding for home and community-based care.

c) P&A should have established a workable cooperative mechanism (involving parents etc.) to assure that residents selected for community placement satisfied criteria appropriate to all attendant care disciplines; and, that such criteria were clearly reflected in each individual's IPP.

d) P&A should have inquired if appropriate supports and services were established in advance of transfers, and if all necessary records had been copied and forwarded in advance of the transfer.

e) P&A should have demanded viable monitoring for a sustained period of time for each individual transferred to make sure that the new environment was stable and in fact contained all appropriate supports to sustain life in a less restrictive manner.

f) P&A should have protested and challenged in court the suspension of State quality assurance protection at this most critical time of mass transfers.

g) P&A should have supported rather than resisted the well-advertised call for a moratorium on transfers until the instability evident in the system had been corrected.  P&A was conspicuously absent from the following group of distinguished supporters:  Senator Dianne Feinstein, the California Medical Association, Arc-California and the protests of Jewish rabbinate and Catholic clergy, many major and local newspapers and numerous family organizations.

h) P&A should have made inquiry of Dr. David Strauss regarding his peer-reviewed, well- documented mortality findings, published in scholarly journals of renown, instead of offering kneejerk opposition.

i) P&A should have accepted interested parent/family association member applications for positions on its Board of Directors.  Routinely, applications for the P&A Board seat designated for a parent of a developmental center resident were and are rejected if applicants represent the majority of families with relatives at the developmental centers, and are supportive of developmental centers.  Thus, developmental center families have had no real voice within the P&A Board of Directors.

j) P&A should not have continued expending major efforts to lobby state legislators against bills benefitting developmental center residents and lobbying exclusively for bills deleterious to the best interests of developmental center residents and the supporting families.

Overall, P&A is wrong in its refusal to conduct its business in an even-handed manner.  It is wrong in its arrogant refusal to address the concerns of parents/families about their loved ones regardless of where they live, work and play.  It is wrong in its concentration on ENDS (deinstitutionalization) regardless of the extent to which the MEANS they employ damage the people who remain most vulnerable to such behavior.

Although we may never know the extent of the human carnage Coffelt caused, we do know there were untold avoidable deaths and misery.

 X.  Conclusion: Opportunity for reform

The above case study offers an in-depth look at one Protection and Advocacy class action lawsuit aimed at closing developmental centers. P&A programs have filed 18 such cases in 12 states (see Attachment 1)[3].

VOR urges Congress to avail itself of the opportunity presented by the reauthorization process to review closely Protection and Advocacy activity and its impact on people with severe and profound mental retardation and their families.  Proposed legislative language, which endorses choice in residential settings and a process by which family members and guardians must be consulted prior to the initiation of a class action lawsuit, is attached for Congressional consideration.

[1] Regional centers in California are the service agencies charged with referring clients of the California Department of Developmental Services to appropriate services, residential settings and other necessary supports. In a more generic sense, they are the “case managers” of the California system.

[2] Although the Settlement Agreement allowed for a five year transition period, the transfers of over 2,000 people occurred in 36-42 months.

[3] November 2004 Update: Since this document was developed, state protection and advocacy systems have filed and/or been involved in new lawsuits (e.g., Parsons (Washington State); Ricci (Massachusetts); McCarthy (Texas); and H.E.P. (Arkansas).