A System in Distress: Caring for Californians with Developmental Disabilities

A System in Distress: Caring for Californians with Developmental Disabilities Report #273 | April 2023 Milton Marks Commission on California State Government Organization and Economy www.lhc.ca.gov LITTLE HOOVER COMMISSION Dedicated to Promoting Economy Pedro Nava, Chair and Efficiency in California State Sean Varner, Vice Chair Government Dion Aroner* David Beier The Little Hoover Commission, formally known as the Milton Marks “Little Hoover” Commission on California State Government Anthony Cannella Organization and Economy, is an independent state oversight agency. Asm. Phillip Chen Bill Emmerson† By statute, the Commission is a bipartisan board composed of Gil Garcetti five public members appointed by the governor, four public members appointed by the Legislature, two senators and Sen. Dave Min two assemblymembers. Asm. Liz Ortega Janna Sidley In creating the Commission in 1962, the Legislature declared †Served as subcommittee chair its purpose: *Served on study subcommittee ...to secure assistance for the Governor and itself in promoting economy, efficiency and improved services in the FORMER COMMISSIONERS transaction of the public business in the various departments, WHO SERVED DURING THE agencies and instrumentalities of the executive branch of STUDY the state government, and in making the operation of all Asm. Tasha Boerner Horvath state departments, agencies and instrumentalities, and Cynthia Buiza all expenditures of public funds, more directly responsive Sen. Jim Nielsen to the wishes of the people as expressed by their elected representatives... COMMISSION STAFF Ethan Rarick, Executive Director The Commission fulfills this charge by listening to the public, Tamar Foster, Deputy Executive consulting with the experts and conferring with the wise. In the Director course of its investigations, the Commission typically empanels Krystal Beckham advisory committees, conducts public hearings and visits government operations in action. Ashley Hurley Shara McAlister Its conclusions are submitted to the Governor and the Legislature Allie Powell for their consideration. Recommendations often take the form Tristan Stein of legislation, which the Commission supports through the legislative process. Contacting the Commission All correspondence should be addressed to the Commission Office: Little Hoover Commission 925 L Street, Suite 805, Sacramento, CA 95814 (916) 445-2125 | LittleHoover@lhc.ca.gov This report is available from the Commission’s website at www.lhc.ca.gov. 2 | LITTLE HOOVER COMMISSION Table of Contents EXECUTIVE SUMMARY ......................................................................5 INTRODUCTION .................................................................................7 RECOMMENDATION 1: INCREASE CONSISTENCY IN CLIENT EXPERIENCES ACROSS REGIONAL CENTERS ...............................8 RECOMMENDATION 2: TARGET AND REDUCE RACIAL AND ETHNIC DISPARITIES ......................................................................10 RECOMMENDATION 3: STRENGTHEN STATE OVERSIGHT OF THE DEVELOPMENTAL DISABILITIES SYSTEM ..............................12 RECOMMENDATION 4: MODERNIZE TECHNOLOGY ....................14 RECOMMENDATION 5: STANDARDIZE THE VENDORIZATION PROCESS ............................................................................................15 RECOMMENDATION 6: STRENGTHEN AND ENHANCE SUPPORT FOR REGIONAL CENTER GOVERNING BOARDS ...........................17 RECOMMENDATION 7: IMPROVE SERVICE COORDINATION .....19 NOTES ...............................................................................................22 A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 3 Letter from the Chair April 13, 2023 The Honorable Gavin Newsom Governor of California The Honorable Toni Atkins The Honorable Brian Jones President pro Tempore of the Senate Senate Minority Leader and members of the Senate The Honorable Anthony Rendon The Honorable James Gallagher Speaker of the Assembly Assembly Minority Leader and members of the Assembly DEAR GOVERNOR AND MEMBERS OF THE LEGISLATURE: No role of state government is more important than serving the most vulnerable Californians. With that conviction in mind, last year the Little Hoover Commission launched a study of the state’s system of care for those with intellectual and developmental disabilities. The attached report outlines our conclusions and recommendations for change. Our hearings were compelling. Hundreds of Californians participated, either by attending our meetings, speaking to our Commission, or submitting written comments. Some were themselves consumers within the system. Others were family members of consumers. Still others were advocates. They told us their personal stories. They shared with us their frustrations, anxieties, and hopes. We heard their anger, and sometimes their tears. We are grateful for their bravery in sharing their stories publicly. Their personal narratives shaped our thinking about the system, and the reforms that are needed. We found major problems. Consumers face a bewildering bureaucratic maze. Inconsistent processes confuse and frustrate those seeking help either for themselves or their loved ones, sometimes so deeply that they give up without getting the care they need. The services available to those seeking care vary throughout the state, so that where you live often determines what you receive. Perhaps most troubling of all, care varies by race and ethnicity, a finding that has been confirmed by decades of research, and which we found anew. This should be unacceptable to all our state’s leaders in 2023. Substantial changes are needed. We must improve accountability, beginning with enhanced authority for the Department of Developmental Services to oversee and supervise the network of 21 regional centers and standardize operations to make the system work better for those it is designed to serve. Regional center boards need enhanced protections and training to ensure members are well equipped to make decisions on behalf of their communities, without fear of personal consequences or repercussions. This system must be bolstered by modern technology that facilitates both oversight and individualized client care. The recommendations in this report will help achieve these goals, remedying the inequities and correcting the disparities that have persisted for too long. The Commission respectfully submits this work and stands prepared to help you take on this challenge. Sincerely, Pedro Nava, Chair Little Hoover Commission 4 | LITTLE HOOVER COMMISSION Executive Summary California’s system for providing services to c. The Legislature should require the Department to individuals with intellectual and developmental identify a standard set of core services that should disabilities needs reform. be delivered by every regional center by 2025. The system is coordinated by a network of 21 RECOMMENDATION 2: TARGET AND REDUCE RACIAL AND ETHNIC DISPARITIES nonprofit agencies called regional centers, with Numerous research studies, as well as anecdotal oversight from the California Department of evidence gathered through our investigation, show Developmental Services. The regional center that there are pervasive disparities in the quality and structure was created in 1969 to help individuals and availability of services among different racial and families access available health, public health, and ethnic groups. The Department of Developmental education systems and provide guidance on how to Services could better use data to identify disparities navigate these systems to meet their unique needs. in spending and service access. Decades of research has identified persistent and Strategies for Change: ongoing disparities in the availability and quality of services among racial and ethnic groups and a. Lawmakers should require the Department to among geographic localities. The Commission found create standard categories to measure the racial inconsistencies in data reporting, technologies, and ethnic characteristics of clients receiving vendorization processes, support for regional center services. governing boards, and availability of client support. b. The Department should conduct robust analyses This report includes seven recommendations to using existing data to better understand reduce geographic and ethnic disparities so that all disparities. who are entitled to services receive similar access. c. The Department should require regional centers RECOMMENDATION 1: INCREASE to consistently report on additional metrics by CONSISTENCY IN CLIENT EXPERIENCES ACROSS REGIONAL CENTERS various demographic characteristics. Each of the state’s 21 regional centers currently has RECOMMENDATION 3: STRENGTHEN STATE discretion to establish its own processes to assess OVERSIGHT OF THE DEVELOPMENTAL individuals for services, to determine the array of DISABILITIES SYSTEM services offered, and to craft policies for providing The system’s emphasis on local control makes information to those seeking help. This means it difficult for the state to provide oversight and the level of care can vary significantly for different address regional disparities. The Department individuals – even if they have similar needs. of Developmental Services has an obligation to understand what is and is not working across the Strategies for Change: 21 regional centers and to step in and address systemwide problems when necessary. a. The Department of Developmental Services should create a consistent intake process to be used by all Strategies for Change: regional centers. a. Lawmakers should amend statute to grant the b. The Department and regional centers should use Director of the Department the authority to issue technology to make it easier for people to find out general directives over the system of regional what services are available. centers. A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 5 b. The Department should issue detailed guidance to Strategies for Change: assist regional centers and others to understand a. Lawmakers should require the Department to the regulations regarding service codes and how standardize the vendorization process to make it they may be used. easier for service providers to participate in the c. Lawmakers should conduct an evaluation of the system. regional center system to identify policy and RECOMMENDATION 6: STRENGTHEN procedural differences among the 21 regional AND ENHANCE SUPPORT FOR REGIONAL centers, assess effectiveness in achieving CENTER GOVERNING BOARDS client outcomes, and identify opportunities for Regional governing boards make critical decisions additional standardization. about services provided in their communities. More RECOMMENDATION 4: MODERNIZE should be done to ensure board decisions are TECHNOLOGY independent and board members are fully equipped The current data systems used by the Department to participate in board decisions. of Developmental Services were developed in the Strategies for Change: 1980s and lack the functionality to provide real-time financial and client data, making it difficult for the a. Lawmakers should add Gubernatorial board department to provide effective oversight of the appointees, restrict regional center executive staff regional center system. Further, regional centers from involvement in board selection, and enhance use six different case management systems, none of board protections from retaliatory action. which interfaces with the others. b. Lawmakers should require the Department to Strategies for Change: increase facilitation services to improve consumer participation on boards and enhance board a. Lawmakers should amend statutory language to training opportunities. require all regional centers to also use a single system to track service delivery. RECOMMENDATION 7: IMPROVE SERVICE COORDINATION b. The Department should articulate a project scope, State law includes a requirement for individuals plan, budget, and timeframe for the development and families to access all “generic” resources before of unified accounting and case management receiving services through the regional center. While systems, as well as describe their intended some families have access to help to navigate these functionality and how the new systems will solve programs, many do not. Limited resources are existing technology problems. available to provide additional needed support. RECOMMENDATION 5: STANDARDIZE THE a. The Department should convene a taskforce with VENDORIZATION PROCESS relevant state and county agencies to streamline The licensing process service providers must undergo the process of accessing generic services. to become vendors is inconsistent across regional centers. Challenges for service providers to enter the b. The Department should develop, and the system can impact the availability of services. Legislature should fund, a competitive grant program to enhance navigation services for regional center clients. 6 | LITTLE HOOVER COMMISSION Introduction More than a half century ago, limited and fragmented The Lanterman Act also created a statutory government services to support individuals with entitlement to services and supports for Californians developmental disabilities meant that many with a qualifying disability, regardless of other families in need of help were too often advised to factors such as income.6 This entitlement was place their child in an institution, frequently away intended to help “meet the needs of each [person from their home and community.1 At the time, with developmental disabilities], regardless of age legislative leaders identified important shortcomings or degree of handicap, and at each state of his that constrained the ability of individuals with life’s development.”7 Today, this feature continues developmental disabilities and their families to seek to provide a stark contrast to systems in many care closer to home, including a lack of a single other states where individuals with intellectual and agency with responsibility to assure services, a lack of developmental disabilities face wait lists or caps to funds to purchase services, and a lack of availability the type of services they may receive. of essential services in many parts of the state.2 By the end of the 1970s, the state’s developmental Lawmakers envisioned an alternative that avoided disabilities system had grown to include a network institutional placement by piecing together scattered of 21 regional centers, one placed for every one resources, eliminating duplicated services, and million California residents.8 In population-dense Los providing services where none had previously Angeles County, seven regional centers were placed existed.3 This vision was realized through the to mirror county health districts.9 In most other Lanterman Developmental Disabilities Services Act parts of the state, a regional center’s geographic (Lanterman Act), which established the framework boundaries covered two or more counties.10 Despite for a statewide system of community-based services California’s significant population growth, the and supports, coordinated by a network of regional number of regional centers in this system has not non-profit agencies called regional centers, with changed.11 oversight from the state. The goal: to emphasize Today, nearly 400,000 Californians with intellectual individual intellectual, economic, social, and physical and developmental disabilities receive various health, not just protect and maintain custody of services and supports through the regional centers individuals with disabilities.4 to help them live as independently as possible.12 Intentionally, to serve individuals with developmental These include children and adults who have been disabilities and their families in the most direct, diagnosed with or are at risk of developing various efficient, and effective manner possible, lawmakers conditions, such as autism, cerebral palsy, epilepsy, tasked regional centers –not state agencies – or other serious disabilities that originated before with offering diagnostic counseling services and they reached 18 years of age. To many individuals linking individuals with services available in their and families, the state’s developmental disabilities communities, among other duties.5 Regional centers services system offers a critical lifeline. were specifically designed to help individuals and But, this system is not without flaws. families access available services from other health, public health, and education systems and help fill the Over the past decade, the state has closed all but gaps between those services to in order to best meet two of its developmental centers and the system each individual’s unique needs. largely has shifted away from institutional care in congregate settings.13 Yet, across the state many A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 7 individuals still receive services in group settings, individuals with intellectual and developmental even as demand for more independent living and disabilities and their families as they navigate individualized programming has increased. this system to obtain help. Input from hundreds of individuals, family members, caregivers, and Despite statutory entitlements and legislative intent others interested in the success of the system to make it easier for individuals and families to get underscored its importance. But they also echoed its the help they need, some say the system set up shortcomings: most notably, that for various reasons, by the Lanterman Act has morphed into an overly the system is not working equally for everyone who complex, sometimes labyrinthine bureaucracy. needs it. Without a core standard of services available to everyone, issues of fairness and equity abound, The seven recommendations within this report are particularly when variations in experiences at intended to target – and reduce – geographic, racial regional centers differ so much that service offerings and ethnic disparities so that all who are entitled to can and do vary, even across the street. services have a similar opportunity to realize that assistance. Addressing these long-standing systemic And perhaps most significantly, decades of research barriers will require more consistent policies and demonstrate that this system has not equally kept its procedures across the network of regional centers, promise to all eligible Californians and has identified increased leadership and guidance from the state, persistent and ongoing disparities in the availability and the establishment of a core set of services and quality of services among racial and ethnic offered statewide. Though other important issues groups and among geographic localities across the arose during the course of our review and are worthy state.14 These inequities persist despite changes in of consideration, they fell outside the scope of this reporting requirements, policies, and spending to try report. to make it easier for families to access services. Recommendation 1: Increase ...decades of research Consistency in Client Experiences Across Regional demonstrate that this system Centers has not equally kept its promise to all eligible Californians People with intellectual and developmental disabilities receive different levels of care depending and has identified persistent on where they live.15 Simply put, the services offered and ongoing disparities in in one regional center may be more or less robust the availability and quality of than those offered by another. This is wrong. services among racial and ethnic These differences can frustrate, confuse, and anger groups and among geographic parents as they try to piece together appropriate support for their children. Some parents told the localities across the state. Commission they couldn’t understand why their child received less services than others who appeared to have similar needs. Some even moved around The Commission launched its review to better the system to try to find the best care. For example, understand the experiences and challenges facing one parent described applying for services for her 8 | LITTLE HOOVER COMMISSION daughters at three regional centers over a span of 20 toddlers considering the Early Start Program. It also years, encountering barriers and denials for services is collaborating with the Association of Regional at two before finally relocating to the third where her Center Agencies, an organization which represents daughters now receive the services they need. all 21 regional centers before the Legislature, to standardize the intake process for these families.17 In a state as large as California, some variation may We applaud these efforts to standardize entry be unavoidable. Some areas have more service procedures. But they should not be limited to providers or more transportation than others, for those families with young children. They should be example. The developmental disabilities system has expanded to ensure that all who enter the system long emphasized local control as a core value to have similar experiences. allow each regional center flexibility in determining how services are rendered in order to best meet the The variation continues after people are admitted needs and preferences of its local community. As to the system. Currently, there are no consistent independent, non-profit entities, each of the state’s or transparent standards to guide how a regional 21 regional centers has discretion to establish its center will decide what services it will authorize own processes to assess individuals for services, to and the conditions under which it will make those determine the array of service it will offer and under determinations. Though all regional centers what conditions, and to craft policies for how it will authorize services on a case-by-case basis through share information to individuals and families seeking the individual planning process, each has developed help. In theory, local control can have benefits. In its own policies and approaches for determining the practice, however, this discretion has resulted in type and amount of services they will authorize for a system where geography matters too much for each individual.18 families trying to seek services. For California’s most Without consistent standards, some families say vulnerable residents, the services they receive often that going to a regional center is like walking into a depends on where they live. restaurant with a secret menu, or no menu at all. Differences begin at the system’s front door. The Only some people know what offerings are available, process to apply for services and the time required while others have to guess and dig for information to do so vary across regional centers, as does the that should be accessible to all. This means that amount and type of information individuals and once in the system, an individual is not guaranteed families must provide to prove their eligibility. These to receive a similar array of services across regional different intake processes not only make it more centers, and may receive a dissimilar array of services challenging for families in some regional centers to compared to another regional center client, even if gain entry to the system, but they also can create their needs and circumstances are similar. barriers for families who wish to move between Individuals and families need to know what services regional centers.16 are offered on a regional center’s “menu” and which Swift access to services is critical for these families, providers offer those services. With the help of as early interventions can reduce the amount of help technology, this information should be accessible, individuals may need later in life. The Department up-to-date, and available in a consistent manner of Developmental Services has developed a online across the system. There also should be a standardized information packet for regional baseline of core services available at all regional centers to distribute to families with infants and centers, so that individuals across the state – in A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 9 urban and rural areas, in affluent communities and i. Standardize requirements for regional center poorer communities – have similar access to basic websites to post information about services services. Regional centers should maintain discretion offered. to determine which ancillary services would best ii. Develop and disseminate geomapping tools meet the needs of their communities. for regional centers to use to visually display Per-client annual spending also varies widely, information about service providers by zip another form of inequity. To some degree, variations codes on their websites. in spending clearly reflect economies of scale: larger c. The Legislature should require the Department of regional centers tend to spend less per client. Such Developmental Services to identify a standard set differences can also reflect varying regional costs of core services that should be delivered by every in a state as large as California. But in other cases, regional center by 2025. The department should variations in spending are harder to explain, let be required to reassess these core services every alone justify. For example, South Central Regional five years to determine what should be added or Center spends nearly $5,000 more than Harbor subtracted from the core. Regional Center per client per year, even though both are in Los Angeles County and South Central Recommendation 2: Target has almost 3,000 more clients. The difference is and Reduce Racial and Ethnic quite substantial: South Central’s annual per-client spending exceeds Harbor’s by more than 30 percent. Disparities These spending differences are significant enough to warrant additional research to examine how they The care a client receives may depend on who they translate into different levels of service for individuals are, the language they speak, and the color of their across the state.19 skin. Race and ethnicity matter even when controlling for variations in a client’s living arrangements and STRATEGIES FOR CHANGE: service needs, according to findings from two reports a. The Department of Developmental Services should published in 2022.20 lead regional centers in creating a consistent intake process throughout the state. Building Tragically, this inequity has been present in the on efforts to standardize the intake process system for decades. Researchers at the University of for those enrolled in the Early Start Program, California, San Francisco examined regional center the department should standardize the intake expenditures in 2005 and again in 2013, controlling processes for others who seek entry at a later age. for individual service needs and other factors, and This effort should include standardizing the intake found persistent disparities in access to services and forms and program planning forms used across all expenditures based on age, gender, race/ethnicity regional centers to ensure that families who must and geography. Authors concluded that people of move from one location to another are not faced color were less likely to receive any services than with new barriers to entry. were white populations. Among those individuals who received services, expenditures for people of b. The Department of Developmental Services and all color were significantly lower than those for whites, regional centers should use technology to make even when controlling for need and other factors. it easier for people to find out what services are Authors noted that these racial and ethnic disparities available. The department should: were consistent with findings from other studies 10 | LITTLE HOOVER COMMISSION dating as far back as the early 1990s.21 I see other groups with similar abilities get, but I get denied. How is it that White and Caucasian families In recent years California has invested $66 million are able to receive support that others are not to reduce disparities within the developmental allowed to get?” disabilities system,22 yet the Commission heard from many parents and advocates that no significant To date, no one has satisfactorily explained the improvements have been made. One African causes of these inequities. Some suggest the American parent and advocate recalled a 2011 unfettered discretion granted to regional centers Los Angeles Times exposé on disparities by race can create an avenue for biases – unintentional or and class in the regional center system that raised otherwise – to seep into decision-making and result awareness of the problems23 and noted that a in disparities in the amount and types of services decade later this system still does not work for Black individuals receive.24 Regardless of why they occur, people, Latinx people, or minoritized populations these inequities must be addressed. Part of the even though there are some good programs and problem is rooted in a lack of data. California must some exceptions. take immediate action to ensure that accurate data is available, and that existing data is being analyzed to understand racial and ethnic disparities. The demographic data regional centers collect is The Department of Developmental Services is not maximizing use of existing data to systematically not standardized, making it identify disparities in spending and service access. difficult to understand how Researchers told Commissioners that a large part of the problem is that the department maintains the population being served by separate data files for funding, client characteristics, one regional center compares and expenditure/utilization rates and produces to another or to the state as a distinct reports from each of these files. In order to track and monitor disparities, the department would whole. have to combine and regularly analyze data from these files, controlling for clients’ characteristics, For parents, these disparities not only mean living arrangements, and service needs. Outside differences in the type and number of services their researchers have been able to produce this type children receive, but also in the amount of time of analysis, but at times have had to obtain data and effort their families must put in to get help. through a lawsuit or court order in order to do so.25 One Latino parent explained, “I found a group of The demographic data regional centers collect is not parents, one was White, one was Asian, and we had standardized, making it difficult to understand how conversations when our white friend was receiving the population being served by one regional center an abundance of services, everything I was looking compares to another or to the state as a whole. In for and buying.” She continued, “we compared and particular, advocates said that the “Other” racial/ communicated, and we realized that …our White ethnic category, a catchall definition used by regional friend got the most. I got more and I fought for it, centers in different ways, is especially problematic.26 and our Asian friend got nothing. It shouldn’t be this Without having a clear, accurate, and consistent way. The system is broken.” Another Latino parent way to measure who is (or is not) receiving services, told Commissioners, “I asked for the same thing that A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 11 policymakers, advocates, parents, and others cannot Recommendation 3: fully understand the extent of disparities. Strengthen State Oversight of The current system lacks capacity to track important the Developmental Disabilities indicators that would provide insight into where System and how disparities in service access occur. For example, regional centers are not required to report The system’s emphasis on local control makes the characteristics of individuals who contact them it difficult for the state to provide oversight and to inquire about services or those who are denied address regional disparities.28 The Legislature regional center services. There is no way to easily should strengthen the ability of the Department of compare across the system which services are Developmental Services to provide oversight of the actually being used. And, there is no field to track the regional centers. Furthermore, the Legislature should status of an individuals’ pursuit of generic services or initiate an evaluation of the entire system. Although to track whether people actually receive the services our Commission recognizes the advantages of some they need.27 measure of local control, we also believe it is past time for an analysis of whether the current structure STRATEGIES FOR CHANGE: – adopted nearly half a century ago – is best suited to a. Lawmakers should require the Department of today’s challenges. Developmental Services to create standard categories to track the racial and ethnic State Oversight Authority. As a steward of the characteristics of individuals who receive services public’s money, the Department of Developmental from regional centers and require all regional Services has an obligation to understand what is centers to use these categories in their reporting. and is not working across the 21 regional centers The department should periodically assess these and to step in and address systemwide problems categories to ensure they accurately reflect when necessary. However, the department currently California’s diverse population. believes it lacks authority to provide this type of broad oversight. b. The Department of Developmental Services should immediately begin to track and monitor disparities The department is responsible for developing using existing data. The department should uniform services of accounting, budgeting, and regularly conduct robust analyses that combine reporting; setting rates and establishing program existing data on client characteristics, service standards for the services purchased by the regional needs, and utilization and share findings online. centers29; and funding the regional centers. It has authority to hold regional centers accountable to c. The Department of Developmental Services state law and does so by various means, including should require regional centers to regularly, and conducting audits, reviewing regional center consistently, report on additional metrics by performance contracts, investigating whistleblower varying demographic characteristics, including: complaints, reviewing client appeals, and tracking individuals who contact a regional center for data. If the department finds that a regional center intake; individuals who are denied regional center is not fulfilling its obligations, the department services; the use of authorized services; and the may provide technical assistance, issue a letter of status of generic services. This and other relevant noncompliance, amend a regional center’s contract data should be made available in machine- provisions, establish a corrective action plan, or readable formats. 12 | LITTLE HOOVER COMMISSION place a regional center on probation or terminate its Standardizing Service Definitions. The department contract.30 has authority to set rates and establish program standards for the services purchased by the regional State law currently grants the department director centers.33 Through regulations, the department authority to issue directives to the regional centers has defined approximately 110 different types of to protect client rights, health, safety, or welfare, services and assigned each a specific “service code” or when necessary to ensure compliance with for regional centers to use when approving vendors state and federal laws. This authority is limited to to provide various services to individuals with directives that do not conflict with existing statutes or developmental disabilities.34 The department also regulations.31 State law also permits the department has created approximately 50 miscellaneous service director to issue directives for various specific codes for regional centers to use to classify vendors purposes, usually related to implementing a new that offer something other than what is specifically program such as providing guidance on compliance defined in statute.35 Together this amounts to with the self-determination program or defining approximately 160 codes regional centers can use to the way quality incentive payments will be made categorize the types of services offered. These codes to service providers.32 In either case, it appears this do not include the thousands of subcodes regional authority is not sufficient to drive systemic change centers use for billing and tracking services.36 or ensure a level of consistency in experiences for individuals and their families when seeking services. This overly complicated system to track services The director of the Department of Developmental rendered through regional centers results in a Services should have similar oversight authority number of challenges. The sheer number of service as the directors of sister agencies, such as the codes makes it difficult for the department to provide Department of Social Services or the Department of meaningful oversight of the system, compare what Health Care Services. is happening across regional centers, or evaluate whether individuals actually receive the services they need. Additionally, regional centers inconsistently As a steward of the public’s use and implement these service codes. These money, the Department of variations can contribute to disparities in the system, Developmental Services has an where individuals are not guaranteed consistent care for the same type of service. For example, obligation to understand what one service provider explained that even when a is and is not working across program is well defined in regulations, such as the supported living program, it does not guarantee that the 21 regional centers and to the regional centers will implement that program the step in and address systemwide same way. One regional center may offer 400 hours problems when necessary. of programming a month under this code, while another offers just 20 hours. This creates different However, the department experiences for individuals who should be receiving currently believes it lacks relatively similar services. authority to provide this type The department currently is taking steps to of broad oversight. consolidate and eliminate duplicative service codes. Representatives estimate this effort will standardize A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 13 the majority of services delivered through regional in staffing structure and caseload impact client centers and will be completed by June 1, 2024.37 outcomes, including a review of caseload ratios While this streamlining effort is promising, it is and workload requirements for regional center unclear whether it will address the discrepancies service coordinators, and service coordinator salary. in the actual services individuals receive unless Ultimately, this review should assess each regional the department provides additional guidance to center to determine its effectiveness in achieving clearly define each service code and explain how the state’s goals, identify underperforming regional the regulations should be interpreted. Previously, centers for targeted improvement, and identify the department issued a regulatory companion that additional opportunities for standardization within discussed and offered plain language commentary the system. on each passage in the regulations.38 Reviving these STRATEGIES FOR CHANGE: efforts could help. The department also may need a. Lawmakers should amend statute to grant the to offer additional training to regional centers and Director of the Department of Developmental service providers on how to correctly use the service Services authority to issue general directives over codes and stepping up efforts to enforce consistent the system of regional centers. application of the regulations across the regional centers. b. The Department of Developmental Services should issue detailed guidance to assist regional centers System Evaluation. In addition to measures that and others understand the regulations regarding would strengthen state oversight, the Legislature the various service codes and how they may be should evaluate whether the current structure used. of independent regional centers is the best option for meeting the needs of Californians with c. Lawmakers should conduct an evaluation of the developmental disabilities and determine whether regional center system to identify policy and additional opportunities for standardization could procedural differences among the 21 regional ultimately benefit the individuals this system is set up centers, assess effectiveness in achieving to serve. client outcomes, and identify opportunities for additional standardization. Findings from this To better understand how variations among evaluation should be used to inform future policy regional center policies and procedures impact decisions. client outcomes, this evaluation should identify differences in the ways regional centers assess client Recommendation 4: eligibility, approve services for clients, communicate Modernize Technology with clients, ensure clients receive services in their plan or identify and address barriers that prevent The Department of Developmental Services’ current them from receiving approved services. Additionally, data systems are so poor that it is impossible to track over the course of its review the Commission individual outcomes for those receiving services and heard from numerous families critical of the state’s are so old it is difficult to find staff with expertise developmental disabilities system, but who praised to use them. This antiquated technology lacks the the individuals within the system who often work functionality to provide real-time financial and client tirelessly to help them. Given the critical role regional data and makes it difficult for the department to center staff play in assisting individuals and families, provide meaningful oversight of the developmental this evaluation also should explore how variations disabilities services system. 14 | LITTLE HOOVER COMMISSION All regional centers use the same accounting and case management systems.45 According to the budgeting system – a statutory requirement enacted department, plans for a new case management nearly 40 years ago when the system was created.39 system will be completed in 2023, with initial But this antiquated system is difficult to modify and implementation beginning in 2025.46 functionally cannot keep pace with regional center Standardization and modernization of these data needs, such as safeguarding data or tracking multiple systems is imperative for the state to ensure that service delivery models. Though the department developmental disabilities services are rendered introduced e-billing services in response to legislative in an equitable and timely manner and that real- direction,40 data from each regional center is time policy and programmatic decisions can be transmitted monthly, limiting the department’s ability made based on accurate and reliable data. Yet, to track real-time expenditures.41 the traditional way government approaches large Regional centers also are required to use a case technology improvements has too often led to management system developed in the late 1980s implementation delays and failure to employ cutting- to submit specific client data to the Department of edge technology. These modernization projects must Developmental Services. However, overtime some be different. To ensure the planning process is not regional centers developed additional systems to elongated, the department must be transparent track client data. Today, regional centers use six about its process and develop and share a schedule different case management systems, none of which and actionable strategy to realize its ambitious vision. interface with the others or have the ability to STRATEGIES FOR CHANGE: integrate data. These disparate data systems produce a. Lawmakers should amend statutory language to poor quality, inconsistent data.42 Without current require all regional centers to also use a single data, it is difficult for the department, researchers, system to track service delivery to people with and others to track individual and system outcomes intellectual and developmental disabilities. and provide meaningful transparency into what is occurring at each regional center.43 A new case b. To ensure meaningful and timely progress, the management system could allow for effective Department of Developmental Services should program and outcome-based monitoring, while also articulate a project scope, plan, budget, and creating a new avenue for those receiving services timeframe for the development of these systems, from regional centers to access their own case as well as describe their intended functionality records, track appointments, or review outcomes and how the new systems will solve existing data, according to department proposals.44 technology problems. The department should be required to regularly present status reports to the The fact that the State of California relies on such Legislature. antiquated systems is appalling. State government cannot function efficiently or effectively with Recommendation 5: technology this old. As a step toward modernization, Standardize the Vendorization the 2021 Budget included $6 million funding for the department to develop plans to modernize the case Process management systems, according to the department. Basic functions of the state’s 21 regional centers, In fiscal year 2023-24, the department requested including the process to license vendors to provide an additional $12.7 million from the General Fund services to those with developmental disabilities, are for continued planning of the accounting and A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 15 not consistent across the system. This means that obtaining licenses or approvals from government 21 regional centers can and often have 21 different agencies and submitting an application and various policies driving their processes for service providers support materials to a regional center. Service to gain entry, resulting in confusion and delays for providers must become approved vendors for each vendors and clients alike. type of service they intend to offer regional center clients.48 This presents a barrier for small businesses or individuals who wish to offer services but may While the state regulates the requirements to lack the time or staff resources to complete the become a vendor, each regional center is responsible process with multiple regional centers. We also for verifying that each provider’s application heard that these processes could deter existing meets licensing and other legal requirements and vendors from expanding services to other, even reviewing their application materials to determine neighboring, regional centers. For example, one which services they may provide. The experiences large service provider testified that his organization and types of information required varies between serves six regional center catchment areas and has regional centers. to constantly juggle between the regional centers’ Director Bargmann and a representative from different approaches to vendorization and other Association of Regional Center Agencies both agreed practices. He said more consistency would be that change must occur and said they are working extremely helpful, as would the ability to offer the together to establish a streamlined vendorization same service across multiple regional centers or process. They also are considering opportunities even statewide. Others commented that because this to improve courtesy vendorization to allow service system was set up in a time before the internet made providers to operate in multiple regional centers and remote services available, services remain largely, ways to make it easier for vendors to provide remote and in some cases unnecessarily, dependent on services.49 Lawmakers must ensure these reforms go geography.47 far enough and are introduced in a timely manner. Taken together, these challenges for service Not all individuals and families understand the providers to enter the system ultimately can impact complications of the vendorization process, nor the availability of services to individuals with should they. But many understand that access to developmental disabilities. Numerous individuals service providers can vary across the system. The and family members spoke passionately about vendorization process is inefficient and unnecessarily the inequities introduced by a system that offers limits the range of providers available to those different services from one regional center to the seeking services. It must be standardized so that next, particularly when the disparities occur among individuals and families have access to a vast network neighboring regional centers. of service providers to meet their needs. To make it easier for service providers to enter the STRATEGIES FOR CHANGE: system and ensure a broader availability of services a. Lawmakers should require the Department throughout the state, the vendorization process of Developmental Services to standardize the must be standardized. Today, every individual vendorization process to make it easier for service or organization who wishes to provide and be providers to participate in the system, regardless reimbursed for services through the developmental of where they are located. The department should disabilities system must first go through a address: “vendorization” process. This process may involve 16 | LITTLE HOOVER COMMISSION i. The forms and information regional centers services in California – a question some raised to the require service providers to submit. Commission. Nevertheless, the concerns raised are sufficient to warrant immediate action to strengthen ii. Establishing a statewide vendorization for board oversight by addressing issues related to providers to apply once to provide services board selection, composition, protections, and anywhere within the system. training. iii. Creating an approved list of vendors, and making this information publicly accessible, ... governing board decision- so individuals and families can easily access making processes and spending information about service providers. decisions are opaque and Recommendation 6: may be unduly influenced by Strengthen and Enhance regional center staff. Support for Regional Center Governing Boards Board selection. State law includes conflict of Regional centers were created to be independent interest policies that direct regional center board entities so that people with developmental disabilities members and employees to act “in the best interest and their families could more easily connect and of regional center consumers and their families... communicate with those making decisions about and be free from conflicts of interest that could the services they need and receive.50 Members of adversely influence their judgement, objectivity, the governing boards – who as volunteers are not or loyalty to the regional center, its consumers, compensated for their service – are saddled with or its mission.”51 Yet some family members and tremendous responsibility. Board members review advocates shared concerns about the lack of clear and approve multi-million-dollar expenditures of and definitive prohibitions against executive staff public money to deliver critical services to people involvement in board recruitment, which is seen by with intellectual and developmental disabilities. They some as a conflict of interest. Such involvement has are supposed to connect with and reflect the local the potential to cloud a board member’s ability to community, and ultimately ensure that regional provide objective, independent oversight, particularly centers meet local needs. Yet family members and when considering issues where the priorities or advocates told the Commission that in practice, preferences of regional center staff and the local governing board decision-making processes and community diverge. spending decisions are opaque and may be unduly The Commission informally surveyed a number of influenced by regional center staff. executive directors to learn more about how board The scope of the Commission’s review did not members are selected for their regional center. allow for an audit of regional center board policies Though practices seem to vary by regional center, and practices. Such an evaluation would be critical many shared that regional center staff were involved to identify opportunities to strengthen board in aspects of recruitment, such as advertising or functionality, but also allow policymakers to consider promoting board opportunities or recommending whether this unique governance structure remains potential board members. Some described an the best means to deliver developmental disability independent nominating committee process for A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 17 vetting, interviewing, and ultimately selecting form of an unwanted change in their or their family potential board applicants. The Commission could member’s services from the regional center may be not determine the extent of executive involvement overly deferential to regional center staff. “Boards of in board selection. Yet additional guidance and directors say to us, we’re afraid to hold the executive consistency regarding the board selection process director accountable because we’re afraid we’re could help to mitigate potential risks and ensure going to lose our services or our family member’s boards remain accountable to the communities they services,” one advocate shared.54 Board members represent. already bear great responsibilities by serving as leaders of these important organizations and should Board composition. State law includes a number not also fear a personal loss in services when taking of requirements regarding the composition of on these responsibilities. regional center governing boards. Specifically, at least 25 percent of members must include people Board training. Regional center governing board with developmental disabilities, at least half of members, particularly those who also receive the members must be either individuals with regional center services, do not consistently have developmental disabilities or their parents or legal adequate supports necessary to fully participate guardians, and the board must include members in board decisions, according to a number of with various professional experiences and reflect advocates. Board members may receive training the geographic and ethnic characteristics of the from a number of sources, including regional area served.52 Despite these requirements, board center staff or hired consultants, the Department composition varies among regional centers. of Developmental Services, the State Council on For example, some regional centers, such as Developmental Disabilities, and outside organizations Valley Mountain Regional Center, enhance board such as community advocacy groups. Despite these membership by including a member selected by the resources, observers said board members tend to provider community. Amending the composition rely on regional center staff for their expertise. of regional center governing boards to include To better equip board members to fulfill their additional outside perspectives would be one way oversight responsibilities, some said there should be to improve board independence. If done with input additional training on the roles and responsibilities of from the Department of Developmental Services, the governing board members and ongoing training additional appointees could strengthen oversight to help ensure board members fully understand the and transparency of regional center operations and items before them and the potential consequences of better position the department to track outcomes their decisions. Some of those who receive services and enforce accountability. from regional centers may also need one-on-one Board protections. Every regional center has assistance to review materials and prepare for board whistleblower protections in place that offer meetings, and again to facilitate their participation protection if a conflict arises between individual in a board discussion. This type of assistance would board members and regional center leadership.53 need to come from a neutral party who understood However, advocates told the Commission these their role was to facilitate the board member’s general policies do not offer sufficient protections participation and not to advise their thinking. To for board members who might wish to oppose maintain board independence, this training should a staff decision or opinion. As a result, they said not come from regional center staff. some board members who fear retaliation in the 18 | LITTLE HOOVER COMMISSION STRATEGIES FOR CHANGE: However, they are not required to assist individuals a. To help ensure regional center board decisions are and families in efforts to access these services. independent, lawmakers should: In practice, this leaves individuals and families to navigate a maze of various agencies, often without i. Amend statute to require that two board assistance, in order to either secure the services seats are filled by individuals appointed by the they need or a denial so they can then apply to the Governor, with input from the Department of regional center for help. Some refer to this as the “all Developmental Services. wrong doors” approach to service delivery. ii. Amend statute to add clarifying language While some individuals and families are comfortable that restricts regional center executive staff navigating this system of generic services or have from any involvement in selecting board time and resources upon which they can draw members. to help advocate for better or more services, not all families are equally resourced or comfortable iii. Enhance statutory language to protect advocating for themselves. The current approach can board members from any retaliatory action become overly burdensome for families who lack or stemming from their board service. have limited access to transportation, who are not able to take leave from work, or who are not fluent b. To better support board members and ensure in English and must rely on the help of translators to that all are equipped to fully participate in communicate their needs. Communities of color may board decisions, lawmakers should require the also encounter structural racism as they navigate Department of Developmental Services to: through the maze of generic agencies. As a result, i. Increase facilitation services to improve individuals may experience delays in receiving the consumer participation on boards. help they need or worse, become so overwhelmed and frustrated to the point of giving up, their needs ii. Enhance training curriculum and go unmet.57 opportunities for board members so board members are less reliant on support from Families described this as facing “the culture of no” regional center staff. where they have to fail before getting the help they need. For example, one parent told the Commission, Recommendation 7: Improve “When I went to the regional center I was told, no, Service Coordination no, no, no, no...so I sought out every generic service I could find. It took all my time and energy. It was a State law includes a requirement for individuals full-time job.” Another parent explained, “When we and families to access all “generic” resources before request services from the regional center we have to receiving services through the regional center.55 go to the services outside first. The regional center Generic services refer to programs and resources is the payor of last resort. I have been sent to access available to the general public, such as education generic services [for three months] and have yet to services, In-Home Supportive Services, Medi-Cal, be successful for one reason or another. The regional as well as private insurance. Regional centers are center is not able to provide the supports that my required to notify families of these generic resources son needs until I can actually show that I tried to – and receive training for their staff about the access the service and I was denied or it didn’t work availability and requirements of generic services.56 for us. It’s a bummer that families or clients have A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 19 to fail before we can access any services from the with clients and advocate with other generic regional center.” services organizations, such as social security, In- Home Supportive Services, and medical offices.62 This was not always the way. For many years, During fiscal year 2021-2022, OCRA resolved 8,386 the State Council on Developmental Disabilities, issues for 5,474 clients, the majority of which were an independent agency funded by Congress handled outside of a hearing process or court.63 to advocate for people with intellectual and OCRA is limited in the number of cases it can take developmental disabilities, served as a resource to on by funding and resources. Community advocacy families overwhelmed by the system.58 By acting organizations also can help individuals and families as non-attorney advocates, the council provided advocate for themselves, though they do not have direct, one-on-one support to individuals in their authority to walk a client “through the door.” This process of collecting “no’s” from the system of limitation prevents some individuals and family generic services, and during individualized program members from having trusted support available plan (IPP) planning meetings at regional centers to accompany them in potentially confusing or or individualized educational plan (IEP) planning contentious meetings. meetings at schools. Council staff also joined individuals and families in assessment meetings and Though regional centers are often represented clients in the fair hearing process or in state level appeals. This assistance often helped supposed to provide service resolve issues without the need for potentially coordination, families and adversarial intervention by attorneys – a step that some families consider intimidating. It also helped advocates suggest that the individuals with developmental disabilities learn how current model wrongly puts the to advocate for themselves within the system more onus on individuals in need of confidently and independently.59 assistance to navigate these In 2014 the federal government directed the State various, complex systems. Council to stop using federal dollars for individual advocacy and instead to reorient its efforts around systemic change. Though funding for this work It should not be so difficult for families to access stopped, the need remained. In 2021, as many as support. Though regional centers are supposed to 37,000 individuals sought one-on-one help from the provide service coordination, families and advocates council.60 suggest that the current model wrongly puts the onus on individuals in need of assistance to navigate Today the state contracts with Disability Rights these various, complex systems. The process to California (DRC) for clients’ rights advocacy services, navigate through this system of generic resources which it has done since 1999.61 The DRC’s Office should not be so cumbersome and opaque. Instead, of Clients Rights Advocacy (OCRA) employs about by coordinating relevant state service agencies, the 65 attorneys, lay advocates, and support staff to state should provide a model of service integration help people with intellectual and developmental and interagency cooperation between regional disabilities advocate for services and pursue legal centers and their relevant county counterparts. remedies when less formal approaches are not possible. OCRA staff can attend IPP and IEP meetings 20 | LITTLE HOOVER COMMISSION Additionally, individuals and families should have Grants should be evaluated by the department access to reliable, individualized assistance when to ensure effectiveness, with findings reported they need it from someone who is knowledgeable regularly to the Legislature. This work should be about how the system works, the range of services complementary to the clients’ rights advocacy available to them, and how they can access those services already enumerated in statute. supports. This support should be available across the state, aim to resolve issues before the need for litigation arises, and serve as a complement to existing clients’ rights advocacy services. Specifically, the state should develop a competitive grant program to fund public and non-profit organizations capable of providing effective lay support to individuals and family members navigating the developmental disabilities system. These grants should be issued in three-year cycles and evaluated to ensure families issues are resolved. STRATEGIES FOR CHANGE: a. The Department of Developmental Services should convene a taskforce with the Department of Social Services, the Department of Health Care Services, and other relevant state and county agencies to streamline the process of applying to and accessing generic services. The taskforce should designate representatives to foster interagency communication, develop memorandums of understanding to facilitate information sharing between agencies and regional centers, and develop formal interagency dispute resolution processes for clients seeking services from multiple service systems. b. The Department of Developmental Services should develop, and the Legislature should fund, a competitive grant program to provide enhanced navigation services for regional center clients. Service navigation grants should be issued competitively in three-year cycles to public or non-profit organizations capable of providing effective, individualized, lay advocacy services directly to individuals with developmental disabilities and their families navigating the developmental disabilities services system. A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 21 Notes 1. Frank D. Lanterman Regional Center. 7. Frank D. Lanterman Regional Center. “Strengthening the Commitment…Reinvesting “Strengthening the Commitment…Reinvesting in the System: A Journey of Community in the System: A Journey of Community Partnership.” History of the Regional Centers in Partnership.” History of the Regional Centers California. Page 2. https://lanterman.org/uploads/ in California. https://lanterman.org/uploads/ info_resources_general/Lanterman-50thHistory- info_resources_general/Lanterman-50thHistory- r6(Blue)(web)_final.pdf. r6(Blue)(web)_final.pdf. Also, State of California, Human Relations Agency. Lanterman Mental 2. Note: In 1968 the Legislature directed a study Retardation Services Act, information booklet. of available resources for the care of disabled Page 5. individuals and found: “1) Lack of a single agency with responsibility and funds to assure services 8. Frank D. Lanterman Regional Center. to those in need; 2) Lack of funds to purchase “Strengthening the Commitment…Reinvesting services; 3) Lack of essential services in many in the System: A Journey of Community parts of the state; 4) Excessive reliance on the Partnership.” History of the Regional Centers in state hospital system; 5) Lack of coordination California. Pages 8 and 14. https://lanterman. and planning on regional and state levels; org/uploads/info_resources_general/Lanterman- 6) Inequities in fees imposed on parents of 50thHistory-r6(Blue)(web)_final.pdf. [developmentally disabled individuals]; 7) Failure 9. Amy Westling, Executive Director, ARCA. to fully utilize federal funds available for services October 24, 2020. Personal communication to for the [disabled].” Source: State of California, Commission staff. Human Relations Agency. Lanterman Mental Retardation Services Act, information booklet. 10. Note: Statutory amendments made in 1993 Page 5. specified the “catchment areas,” or geographic boundaries within which a regional center should 3. State of California, Human Relations Agency. operate, for two regional centers: one to serve Lanterman Mental Retardation Services Act, Inyo, Kern, and Mono Counties, and another to information booklet. Page 5. serve Riverside and San Bernardino Counties. 4. State of California, Human Relations Agency. Source Welfare and Institutions Code, § 4621.5. Lanterman Mental Retardation Services Act, Added by AB 2277 (Harvey), Statutes of 1993. information booklet. Page 3. Chapter 364, Section 1. 5. Lanterman Mental Retardation Services Act. 11. Amy Westling, Executive Director, ARCA. Division 25. Services for the Mentally Retarded, October 24, 2020. Personal communication to Chapter 3. Regional Centers for the Mentally Commission staff. Retarded. § 38100. Cited in State of California, 12. Note: As of December 2022, 399,605 consumers Human Relations Agency. Lanterman Mental were served by the 21 regional centers, Retardation Services Act, information booklet. while an additional 21,268 individuals had Page 18. provisional eligibility, were enrolled in the early 6. Welfare and Institutions Code, Division 4.5, § start program, or were undergoing diagnosis 4500. and evaluation by a regional center. Source: Department of Developmental Services. Monthly 22 | LITTLE HOOVER COMMISSION Consumer Caseload, Regional Center Caseloads Adults with Developmental Disabilities.” by Status, December 2022. https://dds.ca.gov/ 16. Nancy Bargmann, Director, Department of transparency/facts-stats/. Developmental Services. November 10, 2022. 13. Department of Developmental Services. State- Testimony to the Commission. Operated Services. https://www.dds.ca.gov/ 17. Nancy Bargmann, Director, Department of services/state-facilities/. Developmental Services. January 11, 2023. 14. Charlene Harrington, Ph.D., and Taewoon Kang, Written testimony to the Commission. Ph.D., Department of Social and Behavioral 18. William Leiner, Managing Attorney, Disability Science, University of California San Francisco. Rights California. October 6, 2022. Written “Disparities in service utilization and expenditures testimony to the Commission. for individuals with developmental disabilities.” Disability and Health Journal. 2008. 184-195. 19. Department of Developmental Services. 2018-19 Also, Harrington and Kang, “Variation in types of and 2019-20 RC Allocations. December 16, 2022. service use and expenditures for individuals with Personal communication to Commission staff. developmental disabilities.” Disability and Health Journal. 2008. 30-41. Also, Harrington and Kang, 20. Public Counsel. May 2022. “Examining Racial and “Disparities in Service Use and Expenditures Ethnic Inequities Among Children Served Under for People with Intellectual and Developmental California’s Developmental Services System: Disabilities in California in 2005 and 2013.” Where Things Currently Stand.” Also, Disability Intellectual and Developmental Disabilities. Voices United. October 26, 2022. “A Matter of 2016, Vol 54, No. 1, 1-18. Also, the Senate Select Race and Place: Racial and Geographic Disparities Committee on Autism & Related Disorders. Within California’s Regional Centers Serving 2013-2014 Legislative Session. “A Preliminary Adults with Developmental Disabilities.” Report by the Taskforce on Equity and Diversity for Regional Center Autism Services.” Also, Public 21. Charlene Harrington and Taewoon Kang. Counsel. May 2022. “Examining Racial and Ethnic “Disparities in Service Use and Expenditures Inequalities Among Children Served Under for People With Intellectual and Developmental California’s Developmental Services System: Disabilities in California in 2005 and 2013.” Where Things Currently Stand.” Also, Disability Intellectual and Developmental Disabilities, Voices United. October 26, 2022. “A Matter of 2016, Vol. 54, No. 1, 1-18. Also, Taewoon Kanh, Race and Place: Racial and Geographic Disparities Ph.D., Charlene Harrington, Ph.D., Department Within California’s Regional Centers Serving of Social and Behavioral Sciences, UC San Adults with Developmental Disabilities.” Francisco. “Variation in types of service use and expenditures for individuals with developmental 15. Public Counsel. May 2022. “Examining Racial and disabilities.” Disability and Health Journal 1 (2008) Ethnic Inequities Among Children Served Under 30-41. California’s Developmental Services System: Where Things Currently Stand.” Also, Disability 22. Note: Since 2016-17, lawmakers have annually Voices United. October 26, 2022. “A Matter of allocated $11 million from the General Fund Race and Place: Racial and Geographic Disparities to provide “Service Access and Equity Grants” Within California’s Regional Centers Serving to regional centers and community-based A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 23 organizations to reduce disparities in service Also, Elizabeth Gomez, Co-Founder and Director, authorizations, utilization, and expenditures. The Integrated Community Collaborative. October 13, 2021-22 Budget also included an additional $11 2022. Testimony to the Commission. million for the Department of Developmental 29. Welfare and Institutions Code, § 4690. Services to evaluate the outcomes of these grants and identify promising practices. Source: AB X2 1, 30. Nancy Bargmann, Director, Department of Chapter 3, Statutes of 2016. Also, AB 107, Chapter Developmental Services. November 10, 2022. 18, Statutes of 2017. Testimony to the Commission. Also, Department of Developmental Services. December 19, 2022. 23. Alan Zarembo, Los Angeles Times. December Background: DDS Authority: Regional Centers. 11, 2011. Part 1: An epidemic of disease or of Personal communication with commission staff. discovery? Part 2: Services go to those who fight hardest. Part 3: Families chase the dream 31. Welfare and Institutions Code, § 4639.6. of discovery. Part 4: Finding traces of autism in earlier eras. 32. Welfare and Institutions Code, § 4685.8 and § 4519.10. Note: Other examples include Welfare 24. Vivian Haun, Senior Attorney, Disability Rights and Institutions Code, § 4642 (distribution of California. October 27, 2022. Little Hoover information packets), § 4685.8 (nonvendored Commission Advisory Committee Roundtable on service providers criminal background check), California’s Developmental Disabilities System. §4685.10 (compliance with Title 42 Code of Federal Regulations), § 4688.06 (Coordinated 25. Charlene Harrington. September 29, 2022. Family Support Services Pilot Program), § Personal communication with Commission staff. 4688.3 (state plan amendments), § 4699.7 Also, October 27, 2022. Little Hoover Commission (Developmental Services Workforce Stabilization), Advisory Committee Roundtable on California’s § 4870.1 (Competitive Integrated Employment Developmental Disabilities System. program requirements), § 4870.2 (Competitive 26. Brian Capra, Senior Staff Attorney, Children’s Integrated Employment Postsecondary Education Rights Project, Public Counsel. October 27, 2022. and Career readiness Pilot). Little Hoover Commission Advisory Committee 33. Welfare and Institutions Code, § 4690. Roundtable on California’s Developmental Disabilities System. 34. California Code of Regulations, Title 17 § 5432, Types of Service. Also, California Code 27. Vivian Haun, Senior Attorney, Disability Rights of Regulations, Title 17 § 54340, Vendor California. July, 29, 2022. Personal communication Identification Numbers, Service Codes, and with Commission staff. Also, Areva Martin, Subcodes. President and CEO, Special Needs Network. November 4, 2022. Personal communication with 35. California Code of Regulations, Title 17 § 54356, Commission staff. Miscellaneous Services. 28. Vivian Haun, Senior Attorney, Disability Rights 36. Department of Developmental Services. California. October 27, 2022. Little Hoover December 19, 2022. Background: Service Codes. Commission Advisory Committee Roundtable on Personal communication with commission staff. California’s Developmental Disabilities System. 24 | LITTLE HOOVER COMMISSION 37. Welfare and Institutions Code, § 4519.8. Also, Fiscal System Modernization (UFSM) and the Department of Developmental Services. Consumer Electronic Records Management December 19, 2022. Background: Service Codes. System (CERMS) Project Planning. https://esd.dof. Personal communication with commission staff. ca.gov/Documents/bcp/2324/FY2324_ORG4300_ BCP6772.pdf. 38. California Department of Developmental Services, Community Services Division, Program 46. Nancy Bargmann, Director, Department of Services Branch, Services and Supports Section. Developmental Services. January 11, 2023. July 2000. Booklet: The Supported Living Service Written testimony to the Commission. Also, Regulations Companion. Third Edition. On file. Department of Developmental Services. December 19, 2022. Background. Consumer 39. Welfare and Institutions Code, § 4631. Electronic Records Management Systems (CERMS) and Uniform Fiscal System (UFS). 40. Welfare and Institutions Code, § 4641.5. Personal communication with commission staff. 41. Department of Developmental Services. Budget 47. Barry Jardini, Executive Director, California Change Proposal. Fiscal year 2023-24. Uniform Disability Services Association. October 27, 2022. Fiscal System Modernization (UFSM) and the Little Hoover Commission Advisory Committee Consumer Electronic Records Management Roundtable on California’s Developmental System (CERMS) Project Planning. https://esd.dof. Disabilities System. Also, Harry Bruell, President ca.gov/Documents/bcp/2324/FY2324_ORG4300_ and CEO, PathPoint. October 6, 2022. Written BCP6772.pdf. testimony to the Commission. 42. Department of Developmental Services. Budget 48. Department of Developmental Services. Change Proposal. Fiscal year 2023-24. Uniform Vendorization Process. https://www.dds.ca.gov/ Fiscal System Modernization (UFSM) and the rc/vendor-provider/vendorization-process/. Consumer Electronic Records Management System (CERMS) Project Planning. https://esd.dof. 49. Nancy Bargmann, Director, Department of ca.gov/Documents/bcp/2324/FY2324_ORG4300_ Developmental Services. January 11, 2023. BCP6772.pdf. Written testimony to the Commission. Also, Amy Westling, Executive Director, Association of 43. Nancy Bargmann, Director, Department of Regional Center Agencies. November 4, 2022. Developmental Services. January 11, 2023. Written communication to the Commission. Written testimony to the Commission. 50. Amy Westling, Executive Director, Association 44. Department of Developmental Services. Budget of Regional Center Agencies. October 27. 2022. Change Proposal. Fiscal year 2023-24. Uniform Little Hoover Commission Advisory Committee Fiscal System Modernization (UFSM) and the Roundtable on California’s Developmental Consumer Electronic Records Management Disabilities System. System (CERMS) Project Planning. https://esd.dof. ca.gov/Documents/bcp/2324/FY2324_ORG4300_ 51. Welfare and Institutions Code, § 4626 and § BCP6772.pdf. 4626.5. 45. Department of Developmental Services. Budget 52. Welfare and Institutions Code, § 4622. Change Proposal. Fiscal year 2023-24. Uniform A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 25 53. Amy Westling, Executive Director, Association 62. Disability Rights California. OCRA Annual of Regional Center Agencies. October 27. 2022. Report. July 1, 2021-June 30, 2022. https:// Little Hoover Commission Advisory Committee www.disabilityrightsca.org/system/files/file- Roundtable on California’s Developmental attachments/ANNUAL%20-%20Directors%20 Disabilities System. Report.pdf. 54. Judy Mark, President, Disability Voices United. October 27. 2022. Little Hoover Commission Advisory Committee Roundtable on California’s Developmental Disabilities System. 55. Welfare and Institutions Code, § 4644. 56. Welfare and Institutions Code, § 4659(f). 57. William Leiner, Managing Attorney, Disability Rights California. October 6, 2022. Written testimony to the Commission. 58. 42 USC Section 15021. Also, Welfare and Institutions Code, § 4520. 59. Aaron Carruthers, Executive Director, State Council on Developmental Disabilities. October 3, 2022. Personal communication with Commission staff. Also, Aaron Carruthers. Written testimony to the Commission. 60. Aaron Carruthers, Executive Director, State Council on Developmental Disabilities. October 3, 2022. Personal communication with Commission staff. 61. Welfare and Institutions Code, § 4433. Also, Disability Rights California, Office of Clients’ Rights Advocacy. https://www.disabilityrightsca. org/what-we-do/programs/office-of-clients- rights-advocacy-ocra. Shannon Cogan, Director, Office of Clients Rights Advocacy, Disability Rights California. December 8, 2022. Public comment to the Commission. 26 | LITTLE HOOVER COMMISSION Little Hoover Commission Members CHAIRMAN PEDRO NAVA | Santa Barbara BILL EMMERSON | Redlands Appointed to the Commission by Speaker of the Assembly Appointed to the Commission by Governor Edmund G. John Pérez in April 2013 and reappointed by Speaker Brown Jr. in December 2018. Former senior vice president of the Assembly Anthony Rendon in 2017 and again of state relations and advocacy at the California Hospital in 2021. Government relations advisor. Former State Association, State Senator from 2010 to 2013, State Assemblymember from 2004 to 2010, civil litigator, Assemblymember from 2004 to 2010, and orthodontist. deputy district attorney and member of the state Coastal Commission. Elected chair of the Commission in March GIL GARCETT | Los Angeles 2014. Appointed to the Commission by Governor Gavin Newsom in November 2021. Professional photographer and author VICE CHAIRMAN SEAN VARNER | Riverside of ten books. Former Los Angeles County District Attorney, Appointed to the Commission by Governor Edmund G. teaching Fellow at Harvard University’s Kennedy School, Brown Jr. in April 2016 and reappointed in January 2018. and president of the California Science Center Foundation’s Managing partner at Varner & Brandt LLP where he Board of Trustees. practices as a transactional attorney focusing on mergers and acquisitions, finance, real estate, and general counsel SEN. DAVE MIN | Irvine work. Elected vice chair of the Commission in March 2017. Appointed to the Commission by the Senate Rules Committee in September 2021. Elected in November 2020 DION ARONER | Berkeley to represent the 37th Senate District. Represents Anaheim Appointed to the Commission by the Senate Rules Hills, Costa Mesa, Huntington Beach, Irvine, Laguna Beach, Committee in April 2019. Partner for Aroner, Jewel, and Laguna Woods, Lake Forest, Newport Beach, Orange, Ellis. Former State Assemblymember from 1996 to 2002, Tustin, and Villa Park. chief of staff for Assemblymember Tom Bates, social worker for Alameda County, and the first female president ASM. LIZ ORTEGA | San Leandro of Service Employees International Union 535. Appointed to the Commission by Speaker of the Assembly Anthony Rendon in March 2023. Elected in November DAVID BEIER | San Francisco 2022 to represent the 20th Assembly District. Represents Appointed to the Commission by Governor Edmund G. Hayward, San Leandro, most of Union City, portions Brown Jr. in June 2014 and reappointed in January 2018. of Dublin and Pleasanton, and several unincorporated Managing director of Bay City Capital. Former senior officer communities. of Genentech and Amgen, and counsel to the U.S. House of Representatives Committee on the Judiciary. JANNA SIDLEY | Los Angeles Appointed to the Commission by Governor Edmund G. ANTHONY CANNELLA | Ceres Brown Jr. in April 2016 and reappointed in February 2020. Appointed to the Commission by the Senate Rules Partner at Ichor Strategies and appointed to the Board of the Committee in March 2022. Civil engineer and principal with Los Angeles City Employee Retirement System (“LACERS”). Northstar Engineering Group. Former State Senator from Former general counsel at the Port of Los Angeles and city 2010 to 2018. Previously served on the Ceres City Council attorney at the Los Angeles City Attorney’s Office. and was twice elected mayor of that city. Full biographies are available on the Commission’s website at www.lhc.ca.gov. ASM. PHILLIP CHEN | Yorba Linda Appointed to the Commission by Speaker of the Assembly Anthony Rendon in October 2021. Elected in November 2016 to represent 55th District. Represents portions of Los Angeles, Orange and San Bernardino counties and the cities of Brea, Chino Hills, Diamond Bar, La Habra, Industry, Placentia, Rowland Heights, Walnut, West Covina and Yorba Linda. A SYSTEM IN DISTRESS: CARING FOR CALIFORNIANS WITH DEVELOPMENTAL DISABILITIES | 27 “DEMOCRACY ITSELF IS A PROCESS OF CHANGE, AND SATISFACTION AND COMPLACENCY ARE ENEMIES OF GOOD GOVERNMENT.” By Governor Edmund G. “Pat” Brown, addressing the inaugural meeting of the Little Hoover Commission, April 24,1962, Sacramento, California Milton Marks Commission on California State Government Organization and Economy www.lhc.ca.gov