Looking Back at Developmental Disabilities Services in Washington State during the First Decade of the 21st Century
February 21, 2014
This report relies heavily on data collected from the National Core Indicators (NCI) to explore changes in Washington State’s developmental disabilities service system over the first decade of the 21st century. One of the major goals of NCI is to collect and maintain valid and reliable data about the performance of public developmental disabilities service systems. The National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI) provide the infrastructure for this effort by facilitating the Operations Committee (composed of participating state coordinators), providing technical expertise, data analyses and reports of data submitted by participating states. HSRI staff can provide special analyses of NCI data for participating states as needed. Washington State entered into a special contract with HSRI to analyze Washington State’s NCI data over time and to perform a literature review of national trends in developmental disability services during the first decade of the twenty-first century.
NCI relies on the individual participating states to make connections, observations, interpretations and recommendations based on NCI results as they pertain to their local state. This requires extensive, in-depth, historical, local program knowledge and familiarity with local nuances in how data were collected. As such, this report would not be possible without the collaborative efforts of NASDDDS and HSRI, as well as Washington State Developmental Disabilities Administration staff.
HSRI staff analyzed specific question wording over the years to determine compatibility, then combined data sets submitted by Washington State over the years to determine whether statistically significant changes had occurred for each question over time. Data analytic rules have varied somewhat over the years, so HSRI applied the current rules to each historical data set. HSRI also performed a literature review of national changes to developmental disabilities service systems over time and wrote the sections of this report pertaining to national trends.
DDA staff compiled a list of historical events within Washington State as well as national trends on NCI indicators as published in annual reports over time, and then correlated those events with statistically significant findings identified by the HSRI team to interpret the meaning of these findings. In some instances, HSRI was unable to locate certain historical data, or their analyses of the historical data set was too divergent from the trend of results over time to deem the data to be consistent with future data points. Where possible, DDA staff was able to locate reports from the early years of the NCI effort and insert these values into the charts and graphs. DDA staff also performed analyses of local data sets to supplement the findings in this report, and wrote the sections of the report addressing Washington State specific trends and events.
“The whole is greater than the sum of its parts” – Max Wertheimer
Looking Back at Developmental Disabilities Services in Washington State during
the First Decade of the 21st Century
trends In developmental disability services
Approaching the Turn of the Century
Just prior to the turn of the century, the Division of Developmental Disabilities (DDD) was facing what appeared to be an oncoming super storm. Where it was once quite common for program managers to personally know everyone supported by their Region, the Division’s caseload and their support needs had now grown well beyond its existing infrastructure:
Caseload ratios were two-and-one-half times higher than the national average;
The division’s caseload was growing by 7% per year, with a total growth of 65% since 1992, yet the division’s funding had only grown by 24% over the same period;
Increasing demands for data-based decision making and accountability were difficult to impossible to meet given the limited amount of data and information available in a centralized location;
The division was being criticized for inconsistency and lack of responsiveness; and
Various stakeholder groups for persons with developmental disabilities were at odds with one another, making it difficult to implement any changes to the division’s operations.
In February 1997, aware of the impending storm, the Secretary of the Department of Social & Health Services (DSHS) and the Chair of the Senate Health and Long-Term Care Committee challenged the Division’s stakeholders to construct a unified approach to the Division’s major funding and policy issues. In June 1997, the Secretary formed the DDD Strategies for the Future Stakeholder Workgroup. The Stakeholder Workgroup, assisted by a professional mediator, achieved an “Agreement in Principle” in December 1997,which laid the foundation for addressing funding for unmet service needs and provided a compromise for the historical conflict between those who advocated for institutional and those who advocated for community-based policies and procedures.
The “Agreement in Principle” helped guide legislation proposed by the Senate Health and Long-Term Care Committee during the 1998 legislative session. Key legislative actions during the 1998 session included the following:
Passing a significant supplemental budget appropriation, allowing the Division to begin addressing the needs of those in deepest crises; and
SSB-6751 directing the Division to develop a long-term strategic plan in conjunction with a stakeholder workgroup, to make recommendations to the Legislature on how to best meet the needs of people with developmental disabilities and their families, today and in the future.
Dr. Timothy Brown, then director for the Division, re-convened the Strategies for the Future stakeholder advisory group to work toward a consensus on the direction for the division. The first report by this group to the Washington State Legislature, Strategies for the Future, Long-Range Plan Report Phase 1: 1999-2001, (Division of Developmental Disabilities, 1998) was published in December of 1998 and focused on a proposal to stabilize the current system as well as ideas to create a plan for restructuring the service delivery system for the future. The Division also contracted with the Research and Data Analysis within the Department of Social and Health Services to conduct two studies. The first of these two studies, Workload Standards Study: Case/Resource Management in the Division of Developmental Disabilities, (Administrative Services Division, 1999) Report #5.30, was published in March of 1999. The second study, An Analysis of Unmet Service Needs for Washington State’s Division of Developmental Disabilities, (Administrative Services Division, 1999) Report #5.29, was published in September of 1999.
The Supplemental Appropriations Act of 1998 (ESSB-6108) also directed the Joint Legislative Audit and Review Committee (JLARC) to complete a management audit of the Division of Developmental Disabilities (Joint Legislative Audit and Review Committee, 1999). In this review, JLARC made the following observations and recommendations:
The Division has implemented recent budget provisos according to legislative intent.
The Division has a plan for closing the gap between the number of clients currently served, and current and future needs of those underserved or unserved; however, the Division had not yet linked its estimates of needed resources to performance indicators.
JLARC concurs with the Division’s contention that it cannot adequately serve its existing clientele with the current number of case managers.
The Division should improve its management practices relating to quality assurance.
The Division’s coordination efforts with other agencies, state and county entities need improvement.
Communication with legislators, legislative staff and program stakeholders has improved, but the Division is still challenged by meeting the needs and demands of several opposing stakeholders.
Some system change efforts were already underway in the late 1990s. The Legislature had provided funding, beginning in 1996, to develop and operate secure residential and day program placements for persons who are a risk to public safety (a program that would later be established by rule and become known as the Community Protection Program). Concerns were also raised over the population of individuals with developmental disabilities who were residing in state psychiatric hospitals due to severe behavior problems and the lack of available
resources to support them in either community-based settings or in the state’s Residential Habilitation Centers1. The Legislature also provided funding to create appropriate community-based placement options to begin reducing the census of persons with developmental disabilities in the state hospitals.
Additionally, DSHS was in the process of drafting their “Olmstead Plan”2 to be in compliance with the landmark Supreme Court‘s Olmstead Decision of June 1999, that unnecessary segregation of individuals with disabilities is a violation of the provisions of the Americans with Disabilities Act (ADA). The decision requires that persons with disabilities be placed in the community instead of an institution when (1) treatment professionals determine that a community placement is appropriate; (2) the individual wants to move to the community; and (3) the placement can be accomplished taking into consideration the resources of the state and without fundamentally altering the state’s programs.
Guidance was issued by the Centers for Medicaid and Medicare Services (CMS) and the U.S. Department of Health and Human Services’ Office of Civil Rights (OCR) on how to comply with the Olmstead decision. States may meet their obligation under the ADA by demonstrating that they have a comprehensive, effective work plan for placing persons with disabilities in the most integrated setting appropriate and waiting lists are reduced at a reasonable pace.
However, these efforts were not sufficient to avoid legal action against the division.
In January 1999, the Allen vs. DSHS lawsuit was filed, alleging that persons with developmental disabilities were being abused and neglected at Western State Hospital (WSH), that they were being denied opportunities for discharge and support, and that they were at risk for unnecessary involuntary commitment.
In November 1999, the Arc of Washington filed a lawsuit over the long waitlist of people needing supports. The Arc of Washington alleged that Washington State was in violation of federal Medicaid law and the Americans with Disabilities Act (ADA) by failing to provide Medicaid long-term services with reasonable promptness to otherwise eligible individuals with developmental disabilities.
One month later, a mediated settlement agreement to the Allen lawsuit was reached that, among other terms of the agreement, the Division would request funding from the Legislature to implement a 3-phase remedy, titled the Division of Developmental Disabilities/Mental Health Division Collaborative Work Plan. The Division would spend most of the next decade carrying out the terms of the settlement agreement, and the suit was dismissed in July 2008.
The first decade of the new millennium was indeed the ‘perfect storm’. This ten year timespan was littered by additional lawsuits, numerous audits, and media attention. The national economy went into a recession and new funding came to the Division almost exclusively in the form of lawsuit settlements or mitigation responses to audit findings. These funds were usually tied to specific proviso populations, and often just for those with the most significant support needs. Despite these limitations, transformation did occur.
Lawsuits were being filed in states all across the country regarding waiting lists and failure to comply with the provisions of the Olmstead ruling. Washington State, having already become involved in these suits just prior to the turn of the century, was no exception. Washington State prevailed in court rulings regarding the Arc of Washington State lawsuit when the Court ruled in December 2000 that the ADA does not require a state to increase its number of HCBS waiver3 slots as this would be a “fundamental alteration” in the state’s services. The plaintiffs responded by raising two additional issues; that current HCBS waiver participants are not receiving all the services that they are entitled to receive, and ICF/MR services have not been provided with reasonable promptness. A settlement agreement was reached with the Arc of Washington in April of 2001, whereby $14 million in additional funding would be provided in July 2002 and additional funding in cumulative increments of $25 million would be provided in each of the next two years to reduce the waitlist.
The Boyle lawsuit was filed in December 2001 and closely paralleled the Arc of Washington State lawsuit. This complaint alleged that Washington State had failed to provide the full range of services offered through its HCBS waiver, the Community Alternative Program (CAP), to waiver participants either through individuals’ not receiving necessary services or not informing them about the array of services offered under the waiver. This lawsuit was stayed pending a ruling on the Arc of Washington lawsuit settlement.
In December 2001, the Marr lawsuit was filed on behalf of persons with developmental disabilities residing in Eastern State Hospital (ESH). A settlement agreement was reached in the Marr lawsuit in November 2002, but like the Allen lawsuit over persons with developmental disabilities being detained in Western State Hospital (WSH), the Division would spend most of the next decade fulfilling the terms of the agreement. This lawsuit was not dismissed till May 2012.
In December 2002 the federal court rejected the Arc of Washington settlement agreement over concerns that the agreement did not ensure that individuals would receive the services that they require. In April 2003, the State also prevailed in the Boyle lawsuit. The class certification was denied and the case dismissed based on the State’s argument that the issues were administrative in nature and should best be addressed individually via the state’s administrative procedures. The plaintiffs appealed the dismissal to the 9th Circuit Court. The Arc of Washington lawsuit was dismissed entirely in June 2003 based on the State’s argument that the issue was no longer relevant because the state was in the process of changing its waiver program. The Arc of Washington also appealed the dismissal to the 9th Circuit, and the case was consolidated with the Boyle case for purposes of oral argument.
In March 2005, the court upheld the decision of the lower court that the ADA is not in conflict with a state’s decision to limit the number of HCBS waiver participants. However, the case was remanded back to the district court to reconsider other aspects of the dismissal. The case was reassigned to a different district court judge, and a new trial was proposed over whether current HCBS waiver participants were receiving all the services to which they are entitled. A settlement agreement was reached in May 2007, and the 2007 Legislature provided an increase in DDD funding in accordance with the settlement4, but this still left a large number of individuals without any service funds from the division.
An amended complaint was filed in the Boyle lawsuit in September 2005, alleging that the state was still not providing necessary waiver services with reasonable promptness and the assignment of individuals to the state’s four new waivers resulted in some individuals receiving fewer services than they require and without the right to appeal their waiver assignment. In September 2006, a settlement agreement was reached that required the state to implement a new comprehensive annual assessment process to evaluate each waiver participant’s needs; to allow individuals the right to request a transfer to a different waiver; that waiver services would be documented in the service plan and provided within 90-days; prompt response to requests for new services by waiver participants; individuals would receive clarification of their appeal rights; and the plaintiffs could evaluate randomly selected waiver participant files to determine whether the agreement was being followed. The court approved the settlement agreement in December 2006, and the case was finally dismissed in May 2013.
Numerous audits also occurred in the early part of the 21st century. The results of each of these audits further eroded the confidence of the Legislature and the public over the operations of the Division of Developmental Disabilities.
In December 2000, the chair of the Senate Ways and Means Committee provided a memo to the chair of the Joint Legislative Audit and Review Committee (JLARC) with concerns over soaring costs in the Voluntary Placement Program (VPP). JLARC was charged with reviewing this program, and they published a briefing report (Joint Legislative Audit and Review Committee, 2001) on their findings in February 2001. The following conclusions were made:
The Voluntary Placement Program is significantly different in terms of both eligibility requirements and levels of service authorized and provided, as compared to when the process was administered by the Children’s Administration (CA) prior to July 1998.
Young adults, ages 18-21, make up one-third of the program’s caseload and comprise half of the total expenditure, yet the statute (RCW 74.13.020) define a “child” as being under 18 years of age.
There are no written uniform criteria used consistently to determine eligibility, levels of service, or levels of reimbursement for services. Therefore, effective cost control measures cannot be assured.
The Legislature responded by capping the Voluntary Placement Program in July of 2001 due to cost concerns, partially funding the Division’s request for additional case managers, and directing JLARC to review the reliability of the caseload and staffing numbers that generated the request.
Simultaneously, the Division was preparing a request for a substantial increase in field staff to lower case management staff-to-caseload ratios based on findings from the report, Workload Standards Study: Case/Resource Management in the Division of Developmental Disabilities, and recommendations by the Strategies for the Future stakeholder advisory group.
In May 2002, JLARC published a scathing interim report from their investigation (JLARC, 2002), claiming the Division lacked effective management controls resulting in an absence of credible caseload and staffing information, clients receiving services who were ineligible, inaccurate caseload counts, and poor linkage between client data and payments for services provided. Therefore, accurate estimates of caseload growth and staffing requirements could not be determined.
Aware of the impending report and growing concerns regarding credibility, the Department of Social & Health Services (DSHS) contracted with Sterling Associates, LLP to conduct an independent review of the Division and provide recommendations. Sterling Associates made the following recommendations in their May 2002 report (Sterling Associates, 2002):
Realign the Division with stronger, more credible, organizations to avoid further erosion of the service delivery system.
Clarify, strengthen, and fulfill policy direction based on a new business and service culture.
Develop operational procedures and practices to support the policy guidance available to the program.
Develop and implement a policy and supporting plan to communicate in a coordinated way with clients and families, employees, stakeholders, decision makers and elected officials regarding the programs, clients, achievements and challenges facing the division.
Develop and implement an information technology plan to support policy, address case management and program management needs and to help mitigate program risks.
Appoint a Deputy to oversee program operations and a Communications Specialist, develop and implement a new client eligibility determination procedure, and improve data accuracy.
DSHS moved the Division into a new administration, combining it with the department’s aging and long-term care service system. The Legislature directed JLARC to continue monitoring the Division of Developmental Disabilities, requesting a performance audit of community services, management of the federal Medicaid program, and case management. The Interim Report (JLARC, 2002) focused on describing DDD services and was published in December 2002. In this study, JLARC acknowledged the strong rise in community-based clients, with about one-third receiving no Division paid services. Of those who did receive paid community-based services, most received more than one, and eighty-one percent of clients received services (such as Medical Assistance) through other parts of DSHS. JLARC raised a concern over the methods for determining level of need for services: “… current assessment procedures cannot ensure that clients with similar needs receive similar services.” The Final Report (JLARC, 2003) was published in June 2003 and made three recommendations, requiring the Division to submit reports to the Legislature at each stage of implementation:
Develop an assessment process that can be consistently applied to all clients, in all parts of the state. Clients need to be assessed before a determination of services is made.
Seek outside technical assistance to develop a plan for implementing a case management system in DDD.
Provide detailed reports on the impacts of the reorganization of DSHS to bring together DDD and the aging and long-term care service system.
Washington State’s HCBS Waiver was audited by the Centers for Medicare and Medicaid Services (CMS)5 in 2002. Their report, published July of 2002, Washington Medicaid Assessment Report: Community Alternatives Program Waiver (CMS, 2002), raised a variety of issues concerning the management and operation of the waiver. A few of CMS's concerns were:
Waiver recipients are being denied access to needed services based on funding limitations;
People are being placed on the waiver for the sole purpose of obtaining Medicaid coverage for state plan services. These waiver enrollees are at 300 percent of the Federal Poverty Level (FPL) and require state plan Medicaid Personal Care services but use no waiver service;
Data available to monitor the waiver system is insufficient and unreliable; and
Waiver participants are not being given a choice between waiver and institutional services.
A Corrective Workplan
The Division drafted a corrective work plan, referred to as the Comprehensive Work Plan and released in June 2002, to address the findings and recommendations that arose in the JLARC, Sterling, and CMS audits. The plan was published in Appendix E of the Strategies for the Future, Long-Range Plan Report Phase 3: Final Report (December 2002).
Strengthen the Management Capacity of the Division
Appoint an Assistant Director
Establish a new position with responsibility for follow-up on all corrective actions including CMS Waiver, management information systems, policy/procedure development for core data and core systems, including consistent regional application.
Establish a Waiver Implementation Team
Create a team to manage and implement a new Home and Community-Based Services (HCBS) Waiver program to better meet the needs of the Division and its caseload members, and to remain in compliance with federal HCBS waiver operating requirements.
Establish a Compliance Team
Create a headquarters unit responsible for establishing business process improvements, designing policies, and creating monitoring reports. The team will define best practices, establish procedural requirements, draft training curricula and create management information reports that will monitor the consistency of system practices.
Appoint a Division Communications Specialist
The Communications Specialist will focus on the development and delivery of consistent program and management information, both internally and externally.
Develop the Comprehensive Work Plan
The Division will contract with Rhodes Consulting Services, Inc. to assist with the development and monitoring of a comprehensive work plan that identifies tasks, activities, timeframes, resource needs and expected outcomes for the overall corrective work plan.
Create a Division Realignment Plan
The Department will review options to meet infrastructure needs, share available resources, expertise or systems and adopt business practices that support policy requirements and program direction.
Information Technology Systems
Data Quality Improvement Plan
The Division will identify critical decision data, develop clear and consistent data definitions, and document the data source; develop appropriate business rules to edit the data and develop and implement a quality improvement plan; verify and correct data not meeting business rules; and develop internal policies and procedures related to the management of data.
Long-Range Strategic Technology Plan
The Division will perform a current systems assessment and inventory, develop a strategic plan for technology, then deploy and implement the technical solution.
Standardize Business Practices
Using the core principles of the Quality Improvement process, the Division will assign the Compliance/Monitoring team responsibility to develop clear policies and procedures for eligibility that are implemented consistently across regions. In addition the team will formulate monitoring reports that are reflective of each region’s compliance with consistent application of the eligibility rules.
Service Assessment Process
Using the core principles of the Quality Improvement process, the Compliance/Monitoring team will be assigned responsibility to develop clear policies and procedures for service assessments that are implemented consistently across regions, and for developing curriculum and training field staff.
Under the aegis of the Compliance team, perform Quality Improvement process work on the service authorization process that leads to the development of clear policies and uniform procedures, developing curriculum and training field staff.
Under the aegis of the Compliance team, perform Quality Improvement process work on case management processes that leads to the development of clear policies and uniform procedures, developing curriculum and training field staff.
Under the aegis of the Compliance team, perform Quality Improvement process work on service termination procedures that leads to the development of clear policies and uniform procedures, developing curriculum and training field staff.
News media publicized the audit findings and lawsuits as well as several other incidents. In November 2005, a Seattle television news station aired a special report on unexpected deaths and other incidents at one of the state’s Residential Habilitation Centers. Shortly thereafter, a Seattle-based newspaper published a story alleging lack of oversight by Community Protection Program providers. This story was picked up by the Associated Press and distributed nationally. In another television news expose’ that aired in October 2007, two employees of another Residential Habilitation Center were filmed while physically abusing clients and were later arrested.
In addition to local factors and media attention, national factors were also an impetus for the Division’s transformation. In the early years of the new century, there were significant changes in the way that the Centers for Medicare and Medicaid Services (CMS) monitored state performance of Home and Community Based Service Waivers (HCBS). The changes were in part stimulated by the findings of a Government Accountability Office (GAO) report in June 2003, Long-Term Care: Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened (GAO, 2003). In that report, the GAO found that there were few specific requirements regarding the submission of performance data regarding the provision of HCBS services and that the onsite reviews conducted by CMS were infrequent and sometimes skipped all together. The conclusion was that the magnitude of waiver services nationally had surpassed the ability of CMS to monitor performance given the methods that were being used.
The first step that CMS took to re-conceptualize the way that the agency oversaw quality in Home and Community Based Services was to design the Quality Framework (CMS, n.d.). The framework articulated the components of a quality management system and introduced the importance of design, discovery and remediation (Larson, 2008). Subsequently, CMS directed the states to provide specific evidence on their compliance with waiver assurances including the extent to which any non-compliance had been remediated. CMS also required the states to institute quality improvement policies to solve problems in performance that rose to systems level issues. In order to structure the submission of evidence, CMS required states to develop performance metrics or indicators.
These changes had a profound impact on the quality assurance and quality improvement systems across states. It required states to examine the data they collected, assess how it could be analyzed in the aggregate, identify where new data was required, and to develop methods to capture remediation. In many states like Washington, this required aggregating data that had previously been kept at the county or local level. An infrastructure for gathering information, analyzing it, and then planning and implementing remediation efforts based upon findings also needed to be created. It also meant securing information from other agencies, such as Adult Protective and Child Protective Services, in order to submit evidence on health and welfare. In sum, the new CMS requirement ushered in a more “data driven” management system in states around the country than had existed previously.
Washington State’s Developmental Disabilities service system today
The service system for persons with developmental disabilities residing in Washington State today is very different than it was at the turn of the century. The changes have focused on improved statewide consistency, accountability, transparency, and quality assurance. As compared to the highly regionalized and primarily “clinically-based” management system that existed in the 20th century, the service system in the 21st century is more accurately described as “data-driven” management. The implementation of assessment-based services as well as standardized rate setting mechanisms have not only provided the agency with a wealth of information for decision making and reporting, but have also provided documentation to show that persons with similar needs receive similar amounts of service regardless of where they live in the state. Most agency policies and procedures are now carefully documented and openly available to the general public.
Eligibility rules, service options, and the case management system have gone through substantial redesign. These changes have occurred in collaboration with families, individuals, other agencies and stakeholders as our partners.
Transformations that began prior to the turn of the century continued to blossom in the following decade. Continued state psychiatric hospital downsizing occurred as well as substantial downsizing of the Residential Habilitation Centers. Community crisis and intensive support programs were expanded to begin allowing even those with the most significant support needs to avoid institutionalization and be supported successfully in community-based settings. The state’s long history as a leader in employment for persons with developmental disabilities was strengthened when Washington became the first state in the nation to issue a “Working Age Adult Policy,” for which Linda Rolfe, Director of the Division of Developmental Disabilities from June 2000 to February 2013, was nationally recognized by receiving the Ben Censoni Award for Excellence in Public Services from the National Association of State Directors of Developmental Disabilities Services (NASDDDS) in November 2010.
Despite enormous change, the agency’s values, as documented in the Residential Service Guidelines (Division of Developmental Disabilities, 1998) and the County Service Guidelines (Division of Developmental Disabilities, 1992), are still the foundation for the service delivery system. Today, persons with developmental disabilities in Washington State experience greater power and choice, better relationships, improved status and ability to contribute back to their community, integration, competence, and enhanced health and safety. Participation in the National Core Indicators (NCI) has provided an opportunity to view the impact of Washington State’s developmental disabilities service system revolution through the eyes of our consumers and their families or advocates.