Coffelt v. DDS
The following is a case study on the Coffelt v. DDS lawsuit by
I. History of the Service Delivery System in California
1. Models of Service Delivery System
The Department of Developmental Services (DDS) is responsible for providing services to people with developmental disabilities under the Lanterman Act in California. The mission of DDS is "to ensure that individuals with developmental disabilities shall have the opportunity to make choices about their own lives, be safe and healthy, and lead more independent, productive and normal lives as envisioned by the Lanterman Developmental Disabilities Services Act".1
Like the rest part of the United States, California began its services based on the training model to people with developmental disabilities in the mid 1800s.1 Children with developmental disabilities were sent to residential schools for basic skills training, then returned to their regular lives in the community. Residential schools soon became custodial institutions to keep people with mental retardation segregated. By the late 1960s, 13,355 people lived in such institutions in California.
In the 50s and 60s, the efforts of parent groups and advocacy organizations and initiation of federal legislation and funding led to the development of community services for people with developmental disabilities. In California, the Lanterman Mental Retardation Act in 1969 extended a system of regional centers for assessing a consumer's needs and obtaining the services. The Lanterman Developmental Disabilities Services Act in 1978 was the entitlement of the rights of people with developmental disabilities to receive services based on individual needs.2 DDS has shifted its service delivery model to be person and family centered since then.
In 1985, State Supreme Court ruled that written Individual Program Plan (IPP), which defines the services the client is to receive to enable him to achieve a more independent and productive life, is entitlements for services in the Association for Retarded Citizens v. Department of Developmental Services lawsuit. In 1990, Coffelt v. DDS class action lawsuit pushed the DDS further in strengthening and expanding community services.
DDS now executes its responsibilities through 2 systems: one is through 21 community-based, nonprofit organizations known as regional centers (RCs), and the other is through 5 state-operated developmental centers (Dcs).
2. Developmental Centers
The developmental centers combine medical care and habilitation and training services. These centers are licensed and certified as both acute care hospitals and Intermediate Care Facility/Mentally Retarded (ICF/MR) services.3 The primary mission of the developmental centers is to provide training services to increase residents' level of independence, functional skills, and the ability to live in community settings.
The population in the developmental centers in California was 6,722 in 1990 when the Coffelt case was filed.4 The population decreased to 3,932 in the end of 1998.5 Two developmental centers closed during the period of settlement implementation. Currently, there are five developmental centers in California.
II. Coffelt et al v. Department of Developmental Services Case
1. Background
Billy Coffelt is a boy with severe mental retardation. He lived with his parents in Vallejo till he became a teenager when his parents found it too difficult for them to take care of him and two smaller children at home. His parents were told the only option was to send their son away - either to a group home near Los Angeles or to the Sonoma Developmental Center.6 They were told the center was staffed professionally to take care of people with mental retardation.
Two weeks after Billy moved into the Sonoma developmental Center, he was found beaten by other residents and required hospitalization for serious injuries. William Coffelt, Billy's father, and other parents of children with developmental disabilities who resided on the Oaks Unit at Sonoma Developmental Center founded the Oaks Group in 1989.7 They advocated for better conditions at the center initially. They then believed there should be more options for families and shifted their efforts to demand an array of high quality, community-based living arrangements.
The Oaks Group along with other named plaintiffs and organizational plaintiffs filed the Coffelt et al class action lawsuit against the Department of Developmental Services for failing to provide appropriate community services for people with developmental disabilities in 1990.
2. The Case
The case was filed on Feb 27, 1990
The Plaintiffs
The named plaintiffs were individuals waiting to be placed in appropriate community living programs. Organizational plaintiffs included Association for Retarded Citizens, California (ARC-CAL), The Association for Persons with Severe Handicaps, California Chapter (CAL-TASH), United Cerebral Palsy Association of California, Inc. (UCPA), Autism Society of California (ASC), Capitol People First (CPF), and the Oaks Group.
The numbers of plaintiffs were more than 850 persons. All of them had the same interest, and the Defendants acted on grounds generally applicable to the class. The plantiff class consisted people with developmental disabilities who were/would be determined community living arrangements yet still resided in State Developmental Center or inappropriate community living settings. The actions and omissions of the Defendants had resulted in the lack of an array of appropriate community living options. Members of the plantiff class were suffering and would continue to suffer harm as a result of being denied these mandated community services.
The Defendants
The Defendants included State of California, Department of Developmental Services (DDS), director of DDS (Gary D. Macomber at the time the case was filed), Department of Finance (DOF), (collectively as State Defendants), San Andreas Regional Center (SARC), Golden Gate Regional Center, Inc. (GGRC), Regional Center of the East Bay, Inc. (RCEB), and North Bay Regional Center (NBRC), (collectively as Regional Center Defendants).
According to the California State Constitution and the Lanterman Act, the State should undertake an obligation to provide services to its citizens with developmental disabilities in the least restrictive appropriate environment. DDS is the state agency in charge of implementation and administration of services to people with developmental disabilities. DOF has the authority to approve, revise, alter or amend the budget of any state agency. The four regional centers, of which the plaintiffs were clients, contracted with DDS to provide community services to people with developmental disabilities in different geographic regions.
The Defendants together should be responsible for providing appropriate community services for people with developmental disabilities in California.
Causes of Action against the Defendants
1. Violation of the entitlement (the Lanterman Act) to community living arrangements based on individual need
The Lanterman Act is a comprehensive statute which is designed to provide services to meet the needs of individuals with developmental disabilities, regardless of age or degree of handicap, and at each stage of life. Services and supports should enable people with developmental disabilities to approximate the pattern of everyday living available to people without disabilities of the same age. For people who live in the developmental centers, they have the rights to receive habilitation and training, to dignity, privacy, and humane care, and to make choices in their own lives. A prime purpose is to prevent unnecessary institutionalization of people with developmental disabilities. The Lanterman Act also describes how the assessment and monitoring the placement and progress should be done. Individual Program Plan (IPP) should be developed based on each client's capabilities and problems, and type and amount of services needed.
DDS is responsible for ensuring that the Lanterman Act is fully implemented. Regional centers are non-profit corporations, and contract with DDS to provide community services for people with developmental disabilities in specific geographic areas. DDS is also responsible in ensuring the quality of services provided by regional centers as well.
The Plaintiffs believed that DDS restricted regional centers in implementing IPPs, development of new residential services, and providing innovative community living arrangements by failing to provide sufficient funds. The Plaintiffs also believed that defendant regional centers failed to provide or develop appropriate community living arrangements, to record clients' need and progress on IPPs, and referred clients for state hospital placement solely because appropriate community placements were not available.
The Defendants thus failed to fulfill their mandatory statutory obligations, which led the plaintiffs to suffer harms from the denial of their entitlement to appropriate, more independent and productive community living arrangements. Institutionalization against the choice and need of people with developmental disabilities is violation of the Lanterman Act.
2. Invalid rate of establishing community living arrangements
The rates of establishing community care facilities were below the actual market cost of providing necessary services, therefore, providers were unwilling to develop new community living arrangements. Salaries for direct care staff barely above the minimum wage, which resulted in providers being unable to recruit and retain adequate qualified staff. The rate structures were not flexible to reflect the costs associated with different types and levels of care needed, for example, the extra costs in children's programs.
3. Understated budget request and failure to provide the legislature with information
DDS has a legal duty to submit an annual budget for sufficient funds to allow regional centers to purchase all services to which clients are entitled under the Act. DOF has the authority to review, revise, and approve the annual budget of DDS.
The Plaintiffs were informed and believed that DDS and DOF engaged in developing and/or revising annual budget proposals that substantially understate the amount of funds regional centers need to purchase the entitled services. As a result, the Plaintiffs were denied the quality community arrangements they need to develop their potential and minimize regression and injury.
4. Violation of Administrative Procedure Act
According to the California Administrative Procedure Act, DDS should provide public notice of the proposed regulations, provide opportunities for comments by interested persons and for public hearings, and submit statements of reasons for adopting regulations. A controversy existed between the Plaintiffs and Defendants in that the Plaintiffs claimed violations to their right and the Defendants denied all such contentions.
5. Discrimination
The Defendants discriminated against the class members by failing to provide services in the most integrated setting possible even though the Defendants themselves have determined that the Plaintiffs should be served in less restrictive settings in the community. Besides, the Defendants had provided community services for people with less severe developmental disabilities. The class members with more severe disabilities, such as challenging behaviors and medical conditions, were frequently and arbitrarily denied these same opportunities.
6. Violation of State Constitutional Rights
The California Constitution guarantees to every citizen of the State the fundamental right to be free and independent, to enjoy and defend life and liberty, and to pursue and obtain safety, happiness, and privacy. The failures of the Defendants to act upon the Constitutional Rights resulted in indefinite and inappropriate institutionalization of the Plaintiffs.
3. The Progress
According to the documents of communication in the provided folder, DDS mainly focused on how to get funding to implement services needed. Postulation about the relatively smooth litigation process is the timing of this case. This case was filed in 1990, when several other class action lawsuits had pushed the closure of large institutions or the deinstitutionalization movement in the Defendant State. DDS of California realized that it's inevitable for them to improve and create more appropriate community services1. As a result, the key issue in the settlement was how to get funding to improve services instead of trying to justify for their failure in providing appropriate services.
Congress enacted Section 1930 to the Social Security Act to allow up to eight States to provide Community Supported Living Arrangements (CSLA) to Medicaid-eligible persons with mental retardation and related developmental disabilities (MRDD) for a 5-year period of time. States applied for authorization to add CSLA services to their State Medicaid plans by submitting proposed plans. California was one of the 8 States that received the authorized funding. The funding began in 1991. The target population varied in each participating State, 3 groups were common in all 8 States: (1) adults not receiving, but needing community supports, (2) adults who were receiving residential services, but wanted to have more control over their homes and services, (3) young adults in transition from special education or other children's services so as to avoid entry into traditional long-term care.
Although the Coffelt case might not contribute to the California's participation in CSLA, California did try to get more funding for providing community living arrangements for people with mental retardation during the process of the Coffelt case.
4. The Settlement
The case was settled on Jan 19, 1994.
a. Placement
The Defendants agreed to achieve a net reduction in the Developmental Center population by 2,000 within five fiscal years. The schedule was as follows:
FY 1993-94 … 200
FY 1994-95 … 400
FY 1995-96 … 500
FY 1996-97 … 600
FY 1997-98 … 300 or the number necessary to complete the total of 2,000
In order to achieve the net reduction of 2,000 in the Developmental Center population, the Defendants would develop or obtain community living arrangements and other services or support for people with developmental disabilities to live in the least restrictive environment and to meet their needs.
The Regional Center Defendants should develop or obtain alternative community living arrangements for 300 consumers. The eligible community target group included those who had requested or had been identified the need for alternative community living arrangements by the consumer's IPP or interdisciplinary team. The schedule was as follows:
FY 1993-94 … 30
FY 1994-95 …45
FY 1995-96 … 60
FY 1996-97 … 90
FY 1997-98 …75 or the number necessary to complete the total of 300
For the named plaintiffs, the appropriate RC should convene an interdisciplinary team for the purpose of identifying an appropriate community living arrangement and IPP should be developed. The defendant RC would provide the necessary services and supports in the identified community living arrangements within one year or less of the IPP was developed.
2. Consumer Assessment/Placement Planning Process
Each target individual should be assessed and have an IPP developed. Specific timelines for when the personnel training and the assessments should be made.
3. Case Management
Each RC should submit a supplementary community placement plan within 4 months of court approval of a written settlement. DDS should review and approve the proposals and allocate funds within 30 days. DDS was responsible to obtain significant increase amount of federal funding in order to fulfill the obligation.
4. Increase Availability of Flexible Living Options
DDS should enable the defendant RC to provide ongoing case management services, to participate in the process of identifying consumers who were in the DC or at risk of placement in a DC, and to develop needed services and supports.
5. Emergency and Crisis Intervention Services
Emergency and crisis intervention services including, but not limited to, mental health services and behavior modification services, may be provided to maintain persons with developmental disabilities in the living arrangement of their own choice. The defendant RC should submit proposals for funding and implementation of an emergency and crisis intervention service system. DDS was responsible to review and approval the proposals.
6. Quality Assurance
DDS should establish a Quality Assurance Advisory Group, which included consumers, family members, representatives from various organizations as appropriate, to advise in developing the quality assurance standards within 30 days of the approval of the written settlement. The field of quality assurance standards included outcome measures, decision making, integration, independence, productivity, social relationships, recreation, consumer rights and dignity, and so on. The standards, once being established, should be enforced statewide.
7. Monitoring
DDS was responsible to provide quarterly reports and data on the above mentioned areas to plaintiffs' counsels.
III. Impact and the Future
1. The Impact of the Case
The population in state institutions was 6,412 in 1993.4 The number decreased to 3,932 by Dec 30, 1998.9 The State had moved a total of 2,480 people out of state institutions during the Coffelt settlement period.
This case was not about the closure of any specific developmental centers. The population in the DCs decreased by almost a third during the Coffelt settlement period. The State found it appropriate to consolidate the Agnews DC from two campuses to one and to close two other DCs due to escalating costs.1 Stockton DC was closed in 1996 and Camarillo State Hospital and Developmental Center was closed in 1997. Despite the tremendous decrease in the population of DC, 4 of the nation's 10 largest public institution were in California, and Sonoma DC, where the named plaintiffs in the Coffelt case lived, was the largest public institution in the nation in the data of 1996.
In the 1998/1999 strategic plan, DDS continues to increase the availability and variety of community services.1 Currently, there are five DCs in California and no specific plan is made for closure of any DCs now. Eventually the State will decrease to only 3 DCs in different geographic areas. RCs, which contract with DDS, work as fixed points of contact in community for persons with developmental disabilities so that persons have access to the services and supports best suited to them throughout their lifetime.10
In terms of funding, California began operation of Home and Community Based Services (HCBS) waiver in 1985.4 The community services spending exceeded congregate care spending in 1985, which was one of the earliest in the nation. California, however, did not use local appropriations to fund community services in the data of 1996. The Coffelt case also pushed the expansion of the HCBS Waiver. Inflation adjusted spending for the Waiver in 1996 was 47 times the 1992 spending level. Again, despite the huge increase in the use of HCBS Waiver, the state's per capita spending for the Waiver was 49% below the national average in 1996.
2. Factors that Complicate the Community Placement in California
Mortality Studies
David Strauss, Professor of Statistics at the University of California at Riverside, and his colleagues have published a series of studies about the mortality rate in institutions and the community.11-15 These studies consistently indicated much higher rates of mortality among persons with developmental disabilities who lived in community settings than among those who lived in developmental centers, including the period of the Coffelt settlement.
DDS contracted with two groups of outside researchers to study the issue of mortality. On the contrary to the studies done by the UC Riverside group, no statistical significant differences in mortality between two groups.16 O'Brien and Zaharia17 examined the mortality data, which was the same period of some of the studies published by Strauss et al, and found no increased risk of death associated with community placement. Furthermore, adjusted mortality rated for community residence has decreased over time and remained at or below those of the developmental centers.
When contrary results are generated based on the same data set, the validity of the data set is questionable.18 When the validity of the data set is challenged, all statistic methods apply to it are meaningless. Debates between community placement and institution placement should not only focus on mortality, but quality of life, quality of health care, satisfaction of individuals with developmental disabilities and their families, and issues related to the living.19
Although lots of controversies exist regarding the mortality issue, the Strauss et al. studies have been brought up as evidence that community should cease in several states (including California, Florida, Tennessee, Pennsylvania, Montana, Illinois, and Connecticut), and the proponents of continuing institutional modes of care.20
The Media
A series of reports about the mortality were published in San Francisco Chronicle in 1997, which won Excellence in Journalism Awards awarded by the Northern California Chapter of the Society of Professional Journalists and reprinted as a book named "Right to Freedom - Risk of Death". Despite the glorious award winning title, these reports were skewed toward institutionalization of people with developmental disabilities. The reporter interviewed with director of DC and staff of DC, who all expressed their fear of deinstitutionalization will put people with developmental disabilities at risk of dying. The reports also indicated that the DDS was pushed toward moving people with developmental disabilities out of DCs by financial factors and by the Coffelt settlement.
The reports were not balanced on different voices. The following quotes can demonstrate how devastating reports can be when they are biased:
"In 1990, a group of parents sued the state, demanding more community services so their children, too, could be released from the centers. As part of a settlement, the state in late 1993 agreed to reduce the overall population at the centers by a third, or 2,000 residents over five years.
But many of those residents were severely retarded or autistic, with conditions often complicated by chronic health problems and violent behavior disorders. Some familiar with the system estimate that 75 percent or more have no parents, or parents who are not involved in their lives.
As the transfers accelerated, there came ominous evidence of problems."
""It was like a one-way train," says a staffer. "They were picking up people who are the most defenseless, people who don't have guardians, parents, brothers or sisters - because that way, there can be no opposition.""
And several other stories about people with developmental disabilities were injured in community settings or were placed in community settings even though it was against family preferences.
Reports like this certainly will raise controversies and confusion among families of persons with developmental disabilities. When controversies exist, the deinstitutionalization movement is impeded.
Developmental Center Failed Certification
The Sonoma DC in Eldridge failed 6 out of 8 certification categories that look out for the well being of the residents in Dec, 1998.28,29 Agnews DC in San Jose failed 5 out of 8 certification categories in Mar, 1999. Decertification could mean the lost of 2 million dollars a month in federal funding for the Agnews DC. The director of the Agnews DC promised the center will stay open.
If the State did lose the huge amount of federal funding, the shortfall might have to be made up from other funds. This can lead to potentially disastrous effect on efforts to increase community services. However, this is the latest event. As a result, further observation is needed on how this will end.
California is the largest state of the United States, and it is the only state where all people with developmental disabilities are entitled to receive services.30 In reality, however, it is still a long way to go for California on the road of deinstitutionalization and providing better community services. The Coffelt case had pushed the State in accomplishing the largest deinstitutionalization movement. There are still many compounding factors, and 5-year period of settlement just ended. Whether the State of California can reform to community-based service delivery system is still unanswerable at this time.
IV. Postscript
Bill Coffelt, the named plaintiff in the Coffelt case, lives in his own home with a friend, who is also a person with developmental disabilities but have high functioning level, in Fair Oaks.31 Three women are hired to provide Bill's personal assistance services. William Coffelt, Bill's father, will do a session on Bill's Supported Living Arrangement and how positively Bill has responded to the arrangement at the TASH conference in Chicago this Dec.
The Oaks Group was slowly disbanded after the lawsuit settlement because the original membership felt their goals had been accomplished. However, the compounding factors mentioned above show the nee for an organization whose membership tries to live by the core value of the Lanterman Developmental Disabilities Services Act. The Oaks Group, therefore, was revived on the Independence Day, 1997, and will continue its efforts to advocate for supports and services that help people with disabilities live as close as possible to the way people without disabilities live.
V. References
California Department of Developmental Services: Executive summary. http://www.dds.cahwnet.gov/stp/nsum.htm
California Department of Developmental Services: Lanterman Act & other Statues. http://www.dds.cahwnet.gov/laws002.cfm
California Department of Developmental Services: Information about Developmental Centers. http://www.dds.cahwnet.gov/dc001.htm
California State Profile. In Braddock, et. Al. (1998) State of the States in Developmental Disabilities, Fifth Edition.
California Department of Developmental Services: Population trends of California Developmental Centers. http://www.dds.cahwnet.gov/statcgr.htm
Father on a crusade to help house disabled. The Disabled in Transition, Sunday, Mar 30, 1997.
History of the Oaks Group. http://www.jps.net/wcoffelt/history.htm
Brown SL, Lakin KC, Burwell BO. Beneficiary centered care in services to persons with developmental disabilities. Health Care Financing Review. 1997; 19(2): 23-46.
California Department of Developmental Services: Individuals with developmental disabilities in California Developmental Centers and Napa State Hospital. http://www.dds.cahwnet.gov/statspop.htm
Services and supports for persons with developmental disabilities: a briefing paper for Governor-Elect Gray Davis presented by the Area Boards on Developmental Disabilities. http://www.ns.net/OAB/briefing.htm
Strauss D, Kastner TA. Comparative mortality of people with mental retardation in institutions and the community. Am J Mental Retardation. 1996;101:26-40.
Strauss D, Eyman RK, Grossman HJ. Predictors of mortality in children with sever mental retardation: the effect of placement. Am J Public Health. 1996;86:1422-1429.
Strauss D, Shavelle R, Baumeister A, et al. Mortality in persons with developmetnal disabilities after transfer into community care. Am J Ment Retardation. 1998; 102:569-281.
Strauss D, Shavelle R, Anderson TW, et al. External causes of death among persons with developmental disability: the effect of residential placement. Am J Epidemiol. 1998; 147:855-62.
Strauss D, Kaster TA, Shavelle R. Mortality of adults with developmental disabilities living in California institutions and community care, 1985-1994. Mental Retardation. 1998; 36:360-371.
California Department of Developmental Services: Mortality studies. http://www.dds.cahwnet.gov/mortal01.htm
O'Brien KE, Zaharia ES. Recent mortality patterns in California. Mental Retardation. 1998; 36:372-379.
Lakin KC. Observations on the California mortality studies: commentaries on Strauss et al. and O'Brien and Zaharia. Mental Retardation. 1998; 36:395-400.
Blacher J. Much Ado about mortality: debating the wrong question. Mental Retardation. 1998; 36:412-415.
Conroy JW, Adler M. Commentary on the mortality issue. Mental Retardation. 1998; 36:410-411.
Lempinen EW. Retarded pay price as state shuts asylums death rate rises in shift toward community care. San Francisco Chronicle, Tuesday, February 25, 1997.
Lempinen EW. State failed to heed warnings on deaths of disabled patients. San Francisco Chronicle, Thursday, March 13, 1997.
State should suspend transfer of patients. San Francisco Chronicle, Friday, March 28, 1997.
Lempinen EW. State pressured disabled to transfer quotas used to relocate mentally retarded. San Francisco Chronicle, Monday, March 31, 1997.
Holding R. Director defends transfer of mentally disabled memo outlines counterattack against media. San Francisco Chronicle, Monday, April 14, 1997.
Lempinen EW. New beginning ends in tragedy disabled women's death shows cost of state's push to transfer patients to group homes. Thursday, May 15, 1997.
Lempinen EW. Disabled - on the edge: push for living independently promises freedom, poses dangers. San Francisco Chronicle, Monday, November 10, 1997.
Fernandez L. Agnews Developmental Center could be decertified: State action would mean loss of $24 million. San Francisco Chronicle, Tuesday, March 9, 1999.
Fernandez L. Federal influence in Agnews' poor rating: U.S. nurses have been joining inspection teams. San Francisco Chronicle, Wednesday, March 10, 1999.
Letters from William Coffelt, President of the Oaks Group. http://www.jps.net/wcoffelt/hcfa13.htm
Personal e-mail communication with Mr. William Coffelt.