I. Executive Summary

Introduction

Federal and state laws support the right of people with disabilities to live in the most integrated setting. Although deinstitutionalization has been underway for decades, some populations have not fully realized its benefits. One such population in California is people with I/DD and high behavioral support needs. As California’s safety net has moved to the forefront of the policy agenda, a pressing question facing state policy makers is how best to support such individuals in non-carceral, community-based, therapeutic settings that are economically viable and consistent with principles of individual autonomy, equity and community integration.

Individuals with I/DD and high behavioral support needs are underserved by the state in two different ways. First, they are more likely than others with I/DD to find themselves in crisis, without access to any short-term residential programs that can address the issues that caused the crisis in a safe, therapeutic setting. Without access to such programs, it can be difficult for people with high behavioral support needs and their families to navigate crises without experiencing significant trauma, dislocation and economic hardship. Secondly, many people with I/DD and high behavioral support needs struggle to find homes where they can receive the support they need to access community resources and lead lives of their own design.

Enhanced behavioral support homes (EBS homes) and community crisis homes (CC homes), the primary focus of this report, are licensed community care facilities that have been developed by the state to fill these service gaps. CC homes provide residential treatment and stabilization services to children and adults with I/DD for up to eighteen months. EBS homes are facilities where up to four individuals with high behavioral support needs can live indefinitely (or at least, in youth homes, until adulthood) with around-the-clock support. These facilities are critical parts of the state’s safety net continuum, providing the intensive services and stability that some individuals with I/DD and complex support needs require to achieve safety, stability and a high quality of life. At the same time, these settings impose some restrictions on residents’ individual autonomy. For example, residents have little control over where and with whom they live and may not be able to access the community as often as they would like. In some EBS homes and CC homes, locked gates and other devices are also used to restrict freedom of movement.

After summarizing our findings, which are based on stakeholder interviews and our analysis of primary and secondary materials, we offer two sets of recommendations. First, we identify ways that the state can place EBS and CC homes on a firmer foundation and improve the quality of care that they provide. Secondly, to help ensure that all individuals can live safely in the community, and to make it easier for EBS and CC homes to operate at full capacity, we recommend that the state expand the residential continuum of care for individuals with I/DD and high behavioral support needs to include non-congregate settings.

Defining Statutory Features of EBS and CC Homes

EBS and CC homes share many statutory features, including:

• Certified by the Department of Developmental Services (DDS) and licensed by the Community Care Licensing (CCL) division of the Department of Social Services (DSS)
• Focus on person-centered thinking, positive behavioral supports, and trauma-informed care
• Private bedrooms for each resident
• Programs grounded in principles of Applied Behavior Analysis (ABA)
• Required qualifications for facility managers, administrators, and direct-care staff, as well as both upfront and ongoing training
• High minimum staffing ratios

They also differ in a few important regards, such as:

• Capacity: EBS homes serve up to 4 clients, while CC homes can serve up to 8 clients.
• Anticipated length of stay: EBS homes are designed to accommodate permanent placements, while CC homes are designed for short-term placements of 12-18 months.

What We Learned About EBS and CC Homes

To better understand these facilities, we gathered three types of data: interviews with home administrators; first-hand observations and interviews with residents during in-person site visits; and analysis of statutes, regulations, and diverse materials in the public domain.

Our findings encompass six domains: 

Placement Mechanisms and Processes: Our research suggests that placement decisions are subject to considerable institutional inertia. “Step-up” and “step-down” decisions are often made in accordance with routinized processes over which home administrators have little control.

Mix of Resident Support Needs: Residents of CC and EBS homes vary widely in overall acuity and in the types of support they require. Some homes cannot operate at full capacity because of the challenges associated with supporting one resident with exceptionally complex support needs.

Staffing & Financial Operations: We also found significant differences among the EBS and CC homes we interviewed with regard to funding levels, corporate size and structure, severity of staffing challenges, and the handling of expenses such as remediation of property destruction.

Techniques Used to Manage Behavioral Challenges: Some operators view ABA therapy as central to their mission, while others perceive other therapeutic modalities as equally important. Emergency intervention approaches also vary, with some facilities using verbal de-escalation combined with restraints in emergencies, and others relying primarily on alternative methods such as Ukeru (blocking pads). Although most facilities allow their residents freedom of movement, several use delayed egress systems in combination with a secured perimeter.

Regulatory Compliance and Oversight: The bifurcated regulatory structure that applies to EBS and CC homes reportedly can lead to onerous compliance costs, bureaucracy redundancy, and, at times, incompatible regulatory directives. There also seem to be significant regional variations in regulatory oversight. In some regions, oversight may be inadequate to deter abuse and neglect.

Residents’ Autonomy and Quality of Life: The majority of EBSH/CCH residents to whom we spoke reported that they felt “safe” and “respected” at their home, and “liked living” there. At the same time, several reported having had little choice over placement decisions, or identified aspects of their living situation, such as restrictions on personal autonomy or community access, that could be improved. Some of these concerns were echoed by staff or facility operators. Yet since we only interviewed five residents at three EBS/CC homes, we do not know whether the majority of residents across the state would share similar views.

Additional Residential Models for People with I/DD and Complex Support Needs

To broaden our understanding of the residential continuum of care, we explored whether any other community-based living options exist that can support individuals with exceptionally high behavioral support needs who cannot live in CC and EBS homes (or other congregate settings) without putting their own or others’ safety at risk. Our research suggests that the answer is yes. We describe three such models: (1) Enhanced Supported Living Services, which allows adults with high behavioral support needs to live in their own homes, (2) specialized homes in which a youth in crisis can receive intensive support on a temporary basis, and (3) supported single child residences (SSCRs) in which a youth with I/DD and exceptionally complex support needs can reside into adulthood, supported by a Self-Determination budget.1

OUR RECOMMENDATIONS

Given the relatively small number of operators and residents interviewed, we could not draw global conclusions regarding how well the majority of EBS/CC homes throughout the state are fulfilling their statutory duties. Although we encourage DDS to gather the data necessary to undertake such an assessment, the goals of this report are more modest. We aim to identify specific components of the safety net – such as regulatory constraints or economic barriers – that, as described by stakeholders, are likely to affect an appreciable number of consumers (or operators) and seem ripe for statutory reform. In particular, we have focused on actionable ideas that could strengthen EBS and CC homes while making the system as a whole safer and more person-centered, regardless of how well most EBS/CC homes, as of this writing, are meeting the needs of their residents. Our recommendations include the following:

1. First, we suggest revising EBS and CC home placement processes to be more person-centered. On one hand, the inertia of a routinized “step-down” system can result in individuals being placed into EBS or CC homes without careful consideration of all available options. On the other hand, people who “step down” from such homes may be moved to less restrictive settings where they receive less support, which can jeopardize their continued success. Moving to a less restrictive setting should not mean moving to a less supportive setting without clear evidence that a reduction in support is warranted in the new setting.
2. Second, to mitigate the adverse effects of labor shortages and staff turnover, the state should consider loosening eligibility and credentialing requirements for direct-care staff. For example, some operators might be allowed to hire qualified individuals with little or no prior experience supporting individuals with I/DD and complex needs, or to retain staff who are skilled at their jobs but have difficulty passing the Registered Behavior Technician exam. The state might also give operators in regions experiencing acute labor shortages the ability to hire additional “flex” staff to fill gaps in shift coverage on relatively short notice.
3. Third, we recommend taking a more systematic approach to funding property remediation and financing “durable accommodations” for individuals who regularly engage in property destruction.The current, ad hoc approach jeopardizes the health and safety of these individuals and others in their environment. It can also undermine the financial stability of EBS and CC homes, which must either pay for property remediation out of their overhead or ask regional centers to cover these costs. The state should consider developing guidelines for when property remediation can be reimbursed, and subsidizing the creation of a permanent stock of durable accommodations for those that require it.
4. Fourth, we offer several recommendations to improve the safety, autonomy, and quality of life of residents of EBS and CC homes. These recommendations include improving alignment between Title 17 and 22 regulations, collecting data on operators’ ownership type and corporate structure, strengthening regulatory oversight and whistleblower protections, providing state-funded resources for Ukeru training, and strengthening enforcement of state and federal rules related to home- and community-based settings.
5. Fifth, we suggest broadening the continuum of crisis intervention services to include individual residences in which short-term, intensive support and stabilization services are provided to a single individual with exceptionally high behavioral support needs. Our research revealed that the individuals with the most complex needs cannot always be safely supported in CC homes. As an alternative to institutionalization, we recommend the creation of specialized, non-congregate homes that provide the highly customized support necessary to achieve true stabilization. Expanding the safety net in this way would improve the chances that even individuals with the most complex needs can stabilize in the community, while making it easier for CC homes to operate safely and at full capacity.
6. Sixth, we recommend expanding the residential continuum of care to include individual residences in which people with exceptionally high behavioral support needs can live permanently with ongoing support. For adults, we recommend that Enhanced Supported Living Services become more widely available. For youth who cannot be supported safely in EBS homes, we propose the creation of supported single child residences (SSCRs) in which a single child can receive wraparound support instead of being hospitalized, institutionalized, or transferred out of state. This approach would enlarge residential options for those with the greatest behavioral support needs, while helping EBS homes to operate at full capacity. This recommendation goes hand-in-hand with the points above regarding durable accommodations and initiatives to create more affordable, accessible housing across the state.
7. Lastly, we highlight several high-priority areas for future research, including how to improve coordination between children’s homes and the public education system, how to reduce the likelihood of traumatic clashes between residents and police officers, how to effectively deter abuse and neglect, and how to address in a holistic fashion the challenges facing individuals with I/DD and high behavioral support across the life cycle.

Individualizing the Safety Net: Introduction

The disability rights movement was founded on the principle of community living, which was eventually codified in the Americans with Disabilities Act of 1990 and affirmed by the landmark Supreme Court case Olmstead v. L.C., 527 U.S. 581 (1999). These laws and court decisions give disabled people the right to live in the community with access to the same opportunities, both at home and in the workplace, that are available to non-disabled people. De-institutionalization, the process of transitioning or diverting people with disabilities from institutional settings to home- and community-based settings, has been a primary focus of the disability rights movement for over a quarter century.

In California, the transition from institutional to community-based care was significantly propelled by the passage of the Lanterman Act of 1969. This shift marked a departure from California’s reliance on state-operated developmental centers, which at their peak in 1968, housed over 13,400 individuals across seven facilities. The establishment of a statewide network of 21 regional centers facilitated the development of community supports, leading to a dramatic decline in the developmental center population. This decline was further accelerated by a 2012 moratorium on admissions, culminating in the closure of most developmental centers. Today, only two state-run developmental centers remain.

As developmental centers have closed their doors, the state has worked with regional centers to build a network of residential living options so that individuals with I/DD and a wide range of support needs can fully participate in their communities. However, this network cannot provide adequate support to individuals with I/DD and high behavioral support needs unless it can support them during times of transition, disruption, or crisis; and unless they can find homes in the community that provide long-term safety, comfort and stability.

For people with I/DD and co-occurring behavioral health conditions, these goals have often proven to be elusive. To address the unmet need, DDS has developed a “safety net” plan that features two types of community-based facilities for individuals with I/DD and high behavioral support needs: Community Crisis (CC) homes and Enhanced Behavioral Support (EBS) homes.

CC homes are intended to serve individuals in crisis who cannot be safely supported in other community-based settings. They prioritize treatment and stabilization, so residents can transition to less restrictive settings within eighteen months. EBS homes are designed for adults who need a permanent home in which to pursue life goals and access community resources, or children who need a long-term residential setting that can support them in the community until they reach adulthood. Because CC and EBS homes are a centerpiece of DDS’s safety net policy and as of this writing receive a large share of safety net funding, they are the primary focus of this report.2

Available data suggest that the number of regional center clients who require safety net services will continue to grow – and, without careful planning, may outpace the state’s capacity to provide residential living options. For example, in 2021, DDS identified more than 2,700 people as having complex needs, defined as requiring a high level of support in their daily life for a combination of serious physical, behavioral, mental health, and social needs.3 From FY 19-20 through FY 2021-22, these individuals reportedly underwent nearly 2,000 transitions from highly restrictive environments (including developmental centers, carceral settings, and Institutions for Mental Disease).4 It is unclear, however, how many transitioned to highly restrictive environments, or how many spent many weeks or months awaiting suitable placements. These data suggest that the population as a whole experiences a great deal of instability, and raise the question of whether the state has the capacity to adequately serve them, even accounting for planned expansions in safety net resources.5

Taking a long-term, multifaceted approach to the support of individuals with I/DD and complex support needs is critical for two reasons. First, the state is increasingly reliant on specialized models of congregate, community-based care. As of this writing, there were 153 EBS and CC homes with an approved or pending license: 96 EBSHs and 27 CCHs for adults; and 19 EBSHs and 11 CCHs for youth.6 These homes are intended to offer residents more autonomy and a higher quality of life than are available in other settings, and thus are a vital part of the safety net for people with complex needs. Yet they also limit residents’ freedom in important ways, such as restricting where and with whom they live. In January of 2023, thirteen “completed” or “in progress” homes (11 EBS and 2 CC homes) also utilized delayed egress devices (alarms on doors that prevent people from freely exiting) in combination with secured perimeters (locked gates that encircle the home).7 Moreover, several recent cases of abuse and neglect raise questions about the adequacy of regulatory oversight. Since EBS and CC homes have become the default placement for many people stepping down from higher levels of care, with affected individuals often having little say over placement decisions, the latter trends merit thoughtful scrutiny.

Secondly, in focusing almost exclusively on EBS and CC homes, the state has largely overlooked other community-based models of residential care that can deliver comparable support with fewer restrictions on autonomy and freedom of choice—and, critically, can support individuals whose needs are so complex that they cannot live safely in any congregate setting. For example, for decades, a handful of Supported Living Services (SLS) providers have been serving adults with complex needs in their own homes through person-centered, wraparound care and support, a model sometimes referred to as “Enhanced SLS.” There are also a few instances in which adolescents who could not live safely in any group home (including EBS and CC homes) received highly individualized services in non-congregate settings. In short, the state’s singular focus on EBS and CC homes may inadvertently restrict opportunities for individuals with the most complex support needs to thrive in the community and avoid institutionalization.

From the fall of 2022 through the spring of 2023, we investigated how EBS and CC homes are functioning in California, and how they fit into the larger network of safety net services. As part of our research process, we conducted observational site visits at eight EBS/CC homes (and interviewed administrators at each of these homes); interviewed five residents residing at three of these homes; interviewed other knowledgeable stakeholders; reviewed relevant laws and regulations; and surveyed a wide array of publicly available resources on EBS and CC homes. As of this writing, the companies that participated in our study collectively operated and/or were scheduled to open 32 homes – 23 adult EBS homes, 3 adult CC homes, and 6 children’s EBS homes – or about 21% of the total number (153) statewide.

Given the relatively small number of interviews we conducted (and homes we visited), we do not have sufficient data to estimate the proportion of EBS/CC homes statewide that are successfully carrying out their statutory duties and promoting the safety, health and well-being of their residents. This is an important question that we encourage DDS to rigorously explore. Yet it is beyond the scope of this report. Our focus, instead, is on identifying structural features of the safety net that, as described by stakeholders, seem likely to affect a sizable number of residents (or operators) across the state, and could be modified in ways that could improve the lives of regional center clients—especially those facing the greatest risk of institutionalization. In other words, regardless of the current baseline of EBS/CC homes’ performance, our recommendations are designed to help those facilities better meet the needs of their residents while, at the same time, shoring up the entire continuum of care for individuals with I/DD and high behavioral support needs.

The rest of the report is organized as follows:

• Section II describes the key statutory features of EBS and CC homes: who they serve, what they do and the laws and regulations that shape their operations.
• Section III summarizes our findings on how EBS and CC homes are functioning on the ground – based on site visits, interviews with a variety of stakeholders including administrators and residents, and analysis of publicly available materials in the public domain – across six key domains.
• Section IV examines additional, community-based models of care that can support youth and adults with I/DD and complex support needs in their own homes.
• Section V draws on these research findings in presenting our policy recommendations.
• Section VI highlights areas for future research.

II. EBS & CC Homes: Defining Statutory Features

Although EBS and CC Homes are both certified by DDS and licensed by DSS, they serve somewhat different statutory purposes. CC homes can support up to eight clients and “provide[] 24-hour nonmedical care to individuals with developmental disabilities receiving regional center services and in need of crisis intervention services, who would otherwise be at risk of admission to a more restrictive setting.”8 EBS homes, meanwhile, can support up to four clients and “provide[] 24-hour nonmedical care to individuals with developmental disabilities who require enhanced behavioral supports, staffing, and supervision in a homelike setting.”9

These different statutory purposes translate into different anticipated lengths of stay. Placement in a CC home is a short-term measure taken to avert an imminent crisis; as such, “the focus is on stabilization and individual goals so that individuals can transition to a long-term placement as quickly and safely as possible.”10 To help ensure the temporary nature of CC home placements, California regulations specify that if a resident of an adult CC home stays more than 18 months – or if a resident of a children’s CC home stays more than 12 months – “any additional day(s) must be approved by the Department and reviewed monthly thereafter.”11

EBS homes, in contrast, are designed to accommodate permanent placements where youth can reside until their eighteenth birthday, and where adults can “age in place” for the remainder of their lives. “There may be rare situations where a client chooses to move, where a residents’ [sic] needs change such that the physical environment is no longer appropriate and can’t be modified, or where competing access needs with other clients compel a resident to move. However, the emphasis should be on adapting the services, supports and staffing to meet the evolving needs and preferences of clients in their own home.”12

Despite these differences, EBS and CC homes share many regulatory features, including the following:

• Bifurcated regulatory oversight. EBS/CC homes are funded and vendored by regional centers, certified by DDS, and licensed by the Community Care Licensing (CCL) division of DSS as residential facilities that provide 24-hour non-medical care to individuals with I/DD who require specialized, high-level support. The bifurcated regulatory structure of EBS/CC homes means that home administrators must comply with two different sets of oversight requirements across both the Welfare and Institutions Code and related DDS Title 17 regulations and the Health and Safety Code and related DSS Title 22 regulations.
• Overall emphasis on person-centered thinking, positive behavioral supports & trauma-informed care. DDS has described the “philosophy” of EBS and CC homes as including all three of these components. Person Centered Planning is a “balance between what is important to and what is important for a person [and] supports the consumer in reaching their potential and enhancing quality of life.” Trauma Informed Care requires that “any trauma an individual has experienced over the lifespan should be included in the functional behavior assessment and addressed when recommending support strategies.” The goal of a Positive Behavioral Supports (PBS) framework is to minimize the need for interventions that can undermine residents’ dignity and autonomy. In this approach, “individuals are supported in changing behaviors that (a) pose a health and safety risk for themselves or others, (b) interfere with their personal relationships, (c) interfere with their growth as individuals, (d) interfere with their decision-making abilities, (e) pose a threat to their current placement and placement goals, and/or (f) result in being prescribed behavior-modifying medications.” Finally, “[p]ositive behavior supports strive to... avoid the use of restrictive and punitive interventions.”13
• Private bedrooms. Governing law specifies that EBS homes have a maximum capacity of 4 individuals, whereas CC homes can have as many as 8 individuals. Individuals must also be provided with their own private bedroom. In practice, however, this difference is relatively immaterial since DDS has specified that 4 beds is “preferred” even for CC homes.14
• Program Plan. Although not identical, the Program Plan requirements for EBS and CC home are substantially similar.15 At a minimum, the Program Plan must explain how the facility will expedite the admission of consumers and meet their diverse needs. It also must include a Continuous Quality Improvement System that provides details on how residents will make choices, exercise their rights, and access medical care; how the facility will address the changing needs of residents including community integration; and how the facility will mitigate staff turnover and risks to individual residents.
• Programs grounded in principles of Applied Behavior Analysis (ABA). Applied Behavior Analysis (ABA) is a form of psychological intervention that aims to modify unsafe or “problematic” behaviors. The general goal is to understand the function of that behavior, what reinforcement histories (i.e., attention seeking, escape, sensory stimulation, etc.) promote and maintain it, and how it can be replaced by successful behavior. This analysis is based on an initial assessment of a behavior's function and a testing of methods that produce changes in behavior.16 In a typical ABA-based program, Registered Behavior Technicians (RBTs) with paraprofessional training in basic ABA principles carry out a behavior intervention plan (BIP) and collect data on the antecedents, consequences, frequency, and intensity of targeted behaviors under the supervision of a Board-Certified Behavior Analyst (BCBA). ABA is most closely associated with therapies for individuals with Autism Spectrum Disorder (ASD), but may be used to support individuals with a range of disabilities. Although controversial among many disability rights advocates and autistic people,17 it remains a leading form of intervention for individuals with I/DD. By ensuring that every staff member obtains (at least) a paraprofessional certification in ABA, and is overseen by a BCBA, the regulations ensure that all EBS and CC homes are firmly grounded in ABA principles.
• Specialized qualifications required for facility administrators. Facility administrators must have at least two years of experience working with individuals with developmental disabilities and must be licensed as RBTs, Licensed Psychiatric Technician (LPTs), or Qualified Behavior Modification Professional (QBMPs).18
• Administrators, clinicians, and/or lead staff must be onsite frequently. A facility administrator must be on duty at least 20 hours per week. Core staffing levels are determined by the needs of individual residents.19 Each consumer must also receive at least six hours per month of consultation from, respectively, a BCBA and other consultant(s) tailored to their service needs. Finally, at least one lead direct care staff must be on duty and awake at all times, including overnight, even if another staff member is on duty.
• Prior I/DD-specific experience required of all direct-care staff. At the time of hire, all direct-care staff must have at least six months prior experience, and all lead staff must have at least one year of prior experience, providing direct care to individuals with I/DD that have challenging behaviors.
• Intensive upfront & ongoing training. Each staff member must become credentialed as a RBT, a paraprofessional certification in ABA that requires staff to complete a 40-hour course, complete a competency assessment by a BCBA, and pass a written exam.20 Regular direct-care staff must earn the RBT credential within 12 months of hire, while lead staff must earn it in the first 60 days.21 Additionally, during the first year of employment (and sometimes within the first few weeks), direct-care staff must receive 16 hours of Emergency Intervention Training, complete hands-on training in First Aid and CPR, participate in at least 32 hours of on-site orientation, and earn both levels of direct support professional (DSP) licensure.22 After the first year of employment, direct-care staff must renew their RBT and Emergency Intervention Training certifications, and complete at least 25 hours of continuing education.23
• Emergency Intervention Plan. Each EBS/CC home must draft an Emergency Intervention Plan (EIP) describing the circumstances and types of behaviors for which each potential type of emergency intervention may be used. Restraint, defined as “any intervention, including a physical hold, that restricts an individual’s freedom of movement of all or part of an individual’s body,” is only permissible as a last resort and if “the individual’s behavior presents an imminent danger of serious injury to self or others.”24 Moreover, restraint can only be used by support staff who have been fully trained in the its proper use.25 The use of seclusion, defined as “placing an individual in a room or area against his/her will and from which he/she is physically prevented from leaving,” is uniformly prohibited, as is any type of mechanical restraint and the usual of physical (manual) restraint for “punitive purposes, discipline, staff convenience, retaliation or coercion.”26 Environmental modifications that deter residents from freely leaving the home, such as tall perimeter fences or “delayed egress” devices that immobilize an exit door or gate for up to 30 seconds, can only be used with prior approval from DDS.27
• Individual Behavior Supports Team (IBST). The IBST is comprised of individuals “who contribute to the development, revision and monitoring of the IBSP.” At a minimum, it includes the consumer, regional center personnel, the facility administrator, the QBMP, the regional center clients’ rights advocate (unless the consumer objects), and other individual(s) deemed necessary by the consumer or their authorized representative. Its role is “to find the best balance between what the individual wants, and issues of health and safety.”28
• Individual Behavioral Supports Plan (IBSP). The IBSP “identifies and documents the behavior and intensive support and service needs of a consumer; details the strategies to be employed and services to be provided to address those needs; and includes the entity responsible for providing those services and timelines for when each identified individual behavior support will commence.”29 It is informed by a Functional Behavioral Assessment that must be completed by the Qualified Behavior Modification Professional (typically a BCBA) within 30 days of the client’s move to EBSH. The IBSP is supposed to be based in “person-centered planning positive behavior supports, and trauma-informed care,” and must be reviewed at least monthly by the IBST.30
• Individual Emergency Intervention Plan (IEIP). In addition to the EIP, each EBS/CC home must develop an Individual Emergency Intervention Plans (IEIPs) in consultation with the BCBA that is tailored to the needs of each individual resident and based on an initial (pre-placement) assessment. The IEIP, which may be consolidated with the IBSP into a single document, is “a written plan addressing the prevention of injury and implementation of emergency intervention techniques [not prohibited by the EIP] that will be used with a specific client.”31 If restraint is among the permissible emergency intervention procedures, the IEIP must describe how and when it will be used, and include strategies to reduce its duration.32

III. EBS & CC Homes: What We Learned

To understand more clearly how the regulations and requirements summarized in the prior section are working “on the ground,” we gathered three types of data: interviews with home administrators; first-hand observations and interviews with residents during several in-person site visits; and information available in the public domain.

As discussed in the prior section, the regulations give EBS and CC homes some flexibility to adapt the services they provide to meet the needs of the clients they serve. For example, the Individual Behavior Support Plan (IBSP) and Individual Behavior Supports Team (IBST), key components of person-centered planning, are tailored to the needs of each individual resident. Staffing ratios likewise can also adjust up or down in response to each individual’s evolving support needs. At the same time, the regulations impose a high level of uniformity and specificity on homes—including, for example, the requirements that every resident of a CC or EBS home have a private bedroom, that every direct-care staff member become a registered behavioral technician, that a board-certified behavior analyst provide six hours of consultation per month to each consumer, and that a lead staff member be on duty at all times.

Although there are certainly common trends and patterns, we also observed considerable variation in the nature and intensity of residents’ behavioral support needs and the ways in which those needs are being met across different homes. Perhaps more surprisingly, the homes to whom we reached out also varied quite a bit in their financial structure and their relationships with regional stakeholders (such as the regional center and school district).

Our research encompassed six different domains:

1. Placement Mechanisms and Processes
2. Mix of Resident Support Needs
3. Staffing and Financial Operations
4. Techniques Used to Manage Behavioral Challenges
5. Regulatory Compliance and Oversight
6. Residents’ Autonomy and Quality of Life

Summarized below are our key findings in each domain:

1. Placement Mechanisms and Process

Many placements at EBS/CC homes occur by default

For both children and adults, there appear to be several well-trodden paths to placement in EBS/CC homes. In particular, we were told that EBS/CC homes are often the presumptive next placement for individuals who “step down” from DDS-operated STAR Homes. It is almost as if, when the time comes for an individual to step up (or down) from a particular setting, regional center case managers decide the next placement with reference to an invisible “placement acuity ladder.” After identifying the individual’s current location on the ladder, they confine their search to settings that lie on the rung just above (or below) it. In other words, case managers do not appear to be engaged in individualized assessments of the person’s needs.

Even though regional centers have the authority to decide whom to place in an EBS/CC home, home administrators sometimes have de facto leverage over whom to accept

The EBS/CC operators to whom we spoke uniformly stated that they had no formal control or veto power over referrals or admissions. “The reason EBSHs and CCHs are created is that [for some individuals with complex support needs] there is a lot of placement loss, repeated failures and trauma,” one respondent explained, “so the regional center can’t allow a vendor to say no. You get who you get.” Nevertheless, some respondents reported that in exceptional circumstances they had challenged, or would consider challenging, a potential placement. As one put it, “They mostly just send people to us and let us see their file, but if it’s a terrible fit we will fight it.” In the words of another, “The regional center... meets [regularly] to talk about who is ready for placement, and looks at criteria of whether it is good fit, and refers that client to [us], and [we] get all the documents and forward them to the BCBA and other members of the team. The team meets with the person... and makes an assessment of whether it is a good fit based on their behaviors, history, whether they can interact on a positive level, etc. Then we go back to the team and say what do you think? And sometimes they say no, based on whether that client is too forensic, needs a higher level of care, is not suitable or appropriate for the other residents, etc.”

Circumstances reported by at least one vendor in which they would consider challenging a placement included: (1) if the applicant’s age disqualified them from admission; (2) if the applicant’s physical impairments required environmental modifications (such as non-ambulatory beds) or skilled nursing care that the operator could not provide; (3) if the applicant required inpatient care or treatment; (4) if the applicant had been convicted of sexual assault; (5) if the applicant or their family no longer needed or wanted the services provided; (6) if the applicant’s support needs were incompatible with the health or safety of other residents (such as if an applicant who could be physically aggressive with other residents sought admission to a home with a medically fragile resident); or (7) if any of the client’s behaviors violated explicit exclusionary criteria listed in the vendor’s community care licensing packet as uninsurable risks, such as fire-setting.

Clients that “step down” from EBS and CC homes may have trouble finding less restrictive but equally supportive settings that meet their needs

Several EBS/CC home operators complained that when a resident transitions to a less restrictive setting, they often experience such a significant drop in support that the behavioral challenges that led to their placement in the first place can quickly return. “Here they are stable because of the level of service being provided,” explained one EBS administrator. “They get a lot of behavioral and mental health hours. But when they step down and they don’t have that service level, sometimes [decision makers] do the wrong thing. They say ‘Oh, the client is doing well, so let’s put them in a lower-level home where they don’t have that service level, they just get 6 hours of behavioral support instead of 30.’ But... if they take away all the resources will the client still perform [well]? That is the question.” Another EBS home administrator similarly opined, “I can imagine a less restrictive but more supportive environment. Would that work? Yes, I think so. The thing is that an individual’s behavior can spike quickly, and when that happens we [at EBS/CC homes] can get support quickly. If that type of support could be available quickly in [a less restrictive] home... I think it could work.”

2. Mix of Resident Support Needs

There is a wide range of behavioral support needs and overall acuity among residents

Since a history of challenging behaviors beyond the level supported in other community-based settings (such as ordinary group homes) is a statutory prerequisite for admission to an EBS or CC home, we expected most, if not all, residents to engage frequently in high-acuity behaviors. Yet based on our interviews, there is a great deal of variation in the nature, frequency and intensity of residents’ behavioral challenges.

In some homes, behaviors posing a safety risk to staff or residents occur infrequently and are usually easy for staff to manage through verbal de-escalation and “giving space.” For example, the administrator of one EBS home estimated that the mix of behavioral incidents included 1-2 instances per year of property destruction, such as a punch that caused damage to a wall or TV; 2-4 instances per month of self-injurious behavior, such as head-banging or self-scratching that drew blood; 2-4 instances per year of aggressive behavior against staff, such as a punch or kick; 2-3 mild elopement attempts per year, such as an individual walking away from staff in a parking lot saying “I don’t want to be here”; and a couple of instances per month of aggressive gesturing toward staff such as stomping, chest-puffing, or yelling. Staff only resorted to using a physical intervention (such as physical restraint) about once per year.

At other homes, the frequency and intensity of dangerous behaviors is reportedly much higher and more challenging for staff to safely manage. For example, one EBSH administrator reported that all residents engaged in some aggressive behaviors (which could include punching, biting, scratching, head-butting, kicking, sexualized behavior, throwing objects, using utensils or pieces of glass as weapons, and threatening violence). Some residents also occasionally engaged in intense property destruction (such as repeatedly destroying the hoods of staff vehicles); self-injurious behavior (such as self-hitting, self-cutting, and attempted suicide) and/or high-risk elopement (such as running into a busy street). The administrator described high-intensity aggression as “pretty frequent” and commented, “It is a great day if I can make it through the whole day without aggression toward staff.”

In general, the homes that support clients with the most frequency & acute behaviors reportedly found it the hardest to recruit and retain qualified staff. For example, the administrator of a home with relatively few behavioral challenges commented, “I think for most part things are going pretty well [with staff]. There are not big issues with these guys. They have behavior plans that work and are person-centered, and that helps staff here to minimize behaviors before they happen, so they can redirect them or implement replacement behaviors for them.” Meanwhile, the administrator of a home with very high-acuity behaviors opined, “Staff stress levels are through the roof... it definitely has a huge impact when staff... are dealing with highly sexualized, aggressive behaviors [and] offensive comments [or] violent statements... it tends to wear people down.” An administrator who oversaw two different EBSHs in the same region with different behavioral acuity levels commented, “Staff [in the higher-acuity EBSH] were nervous and a lot of staff left because they didn’t want to work with clients that have this type of need, so it definitely affects retention. It is harder to retain staff in the [higher-acuity home] than in the [lower-acuity home] because of the higher behaviors.”

Homes serving adolescents report the highest level of behavioral support needs

Given the relatively small number of home administrators we interviewed, we cannot draw any firm conclusions about systematic differences between adolescent and adult homes. Yet it is worth noting that many of the homes managing the highest-acuity behaviors, including the home with the highest reported behavioral support needs, served adolescents. One administrator whose employer operated a children’s EBS home and a number of EBS and CC homes for adults likewise reported that “turnover [was] way higher and behaviors [were] way higher” at the children’s home than at any other home. “The behaviors in some [adult] homes are high-frequency, low-intensity, whereas [others] are more low frequency, high intensity. But at the adolescent home, the behaviors are high frequency, high intensity.”

Some homes seem to “specialize” in certain types of people served or behavioral supports

Formally speaking, only two criteria differentiate homes supporting individuals with high behavioral support needs: whether they serve children or adults; and whether they are classified as EBS homes or CC homes. No “sub-types” of EBS or CC homes are mentioned in the statutes or regulations. Yet our research suggested that in some cases, EBS homes sometimes specialize in serving particular types of clients.

For example, one EBS home administrator described their home as being a “more medically-focused” home that could support non-ambulatory clients and those with specialized medical needs. “I was never told that [our] group of individuals were put together because of their background medical diagnoses,” the administrator reflected. “I thought it was strictly because of their behaviors.” Yet over time, they explained, it became clear clients were being placed at the home “because [we] have a background in nursing, so we can do restricted health care plans and train and manage the staff to do medical-related personal care tasksor tasks that require training from a medical professional.”

“Placing clients with the highest-acuity needs in the same home is setting everyone up for failure... The amount of trauma, amount of support, intensity of behaviors, the unpredictability, the safety risk – just so many things [are] off Richter scale in trying to create a home-like environment.”

Another administrator described their home as “specializing in adolescents with criminal justice and forensic involvement,” many of whom had no family involvement and were wards of the state. “I thought we would be a home supporting kids with autism who really needed structure and were struggling in the family home” the administrator commented, “[b]ut the way it has ended up is that we are supporting kids who have trauma lists that exceed anything beyond your worst nightmares. So it creates a very different niche.” Placing clients with the highest-acuity needs in the same home is “setting everyone up for failure... The amount of trauma, amount of support, intensity of behaviors, the unpredictability, the safety risk – just so many things [are] off the Richter scale in trying to create a home-like environment... and being asked to maintain trauma-informed support, all positive behavioral support, to give people their rights, to only intervene if it’s life or death, to keep yourself safe, to make sure you are meeting staffing ratios... it’s all a mess.” A better approach, the administrator suggested, would be “spreading out the really really difficult cases to like one per home.”

Individuals with a history of high-acuity behavioral support needs do not necessarily continue to engage in those behaviors after transitioning to an EBS or CC home

Several administrators stated that residents’ behavioral support needs often declined significantly after their admission to a home. One explained, “all of our clients have had significant improvement since there has been consistency in staffing and programming. The regional center and funding sources are very surprised at how well we have handled some of clients that came into our facility.” Another resident who transferred from an ordinary group home reportedly displayed a similar trend. “[Their] behavior significantly changed for the good,” the administrator reflected, “because [they were] getting the right services [they] needed: more attention, staff that are RBT trained [as registered behavior technicians], lots of BCBAs [board-certified behavior analysts], a nursing team, a mental health team – a whole wraparound that the other home didn’t have.” Another operator similarly commented, one client with a history of elopement “didn’t elope at all after he was here, so we finally stopped collecting data on it.”

Some homes cannot operate at full capacity because of the challenges associated with supporting one or two individuals with exceptionally complex support needs

Several administrators reported that in exceptional circumstances, the difficulty of supporting an individual with particularly high needs could prevent a home from running at full capacity. For example, one administrator described an adult EBS home with “two empty beds, the primary reason being the high behaviors from one resident in particular, who at one point was recommended to go back up to a higher level [of care].” An adolescent EBS home was similarly described as “very under-utilized... mostly because of one really unique case, a resident with super high-level property destruction, aggression, all of that” arising, in part, from a co-occurring severe mental illness. In both instances, alternative placements at a STAR home or an inpatient psychiatric hospital were reportedly being considered.

3. Staffing and Financial Operations

The industry includes a mix of large companies and “mom and pop” operators

Although the majority of EBS and CC homes we interviewed were operated by large or medium-sized companies, several were “mom and pop” businesses run by an individual or couple that were confined to a single geographic region and operated no more than four homes. Given the limited scope of our study, we cannot determine the overall prevalence of each type, or whether there are any systematic differences between them. Notably, however, the “mom and pop” administrators reported two concerns that were not were not mentioned by other administrators.

“When we first started, after a few weeks we were questioning if we made the right decision. It has gotten better, but it is a 24-hour job, and it affects my children’s life, family life, everything has to revolve around this home.”

First, smaller operators cited particularly acute challenges in recruiting, training and retaining staff. One mentioned that a “very large company” had been particularly aggressive in poaching staff from other homes, which had greatly exacerbated competitive pressures and generated “a lot of fear” among smaller agencies in the region. A second common complaint among small operators was the difficulty of maintaining work-life balance given the intense demands of the position. “It is just so much work,” one administrator reflected. “I don’t think I was prepared or [had an] understanding of how much this was. There is no off button. I can’t take a day off, it is 24/7. I wake up having dreams about work. I can’t sleep through the night. It is just nonstop at every single level. I dream of going back to having a time to clock in and a time to clock out.” Another small operator similarly observed, “When we first started, after a few weeks we were questioning if we made the right decision. It has gotten better, but it is a 24-hour job, and it affects my children’s life, family life, everything has to revolve around this home.”

The special burdens facing smaller companies seemingly are driven, in part, by the capacity of large companies to achieve economies of scale. They often employ an extra layer of personnel at the corporate level – such a dedicated recruiters, specialized trainers, and “on-call” RBTs – who can recruit and train new staff, provide temporary shift coverage and generally help alleviate the burden on individual home administrators. For example, one EBS home run by a large company reportedly employs an extra layer of staff at the corporate level – including a licensed vocational nurse, an RN, an assistant regional director, a regional director and senior executive – that any individual home administrators can ask for help or support. Another large company reportedly employs a “talent acquisition department” to handle most HR matters for its EBS homes at the corporate level. This department “does the whole nine yards” including managing job postings, reading applications, scheduling and conducting interviews and training newly hired employees. Several home administrators pointed out that being part of a large company can also help reduce turnover, because staff members seeking new opportunities can transfer to other homes or apply for internal promotions without leaving the company. A third administrator whose facility is owned by a large company noted that conducting screening interviews at the corporate level, while allowing home administrators to carry out final interviews in person, “has really helped the home in getting good staff.”

Staffing shortages seem more acute in some regions than others

All of the EBS and CC operators with whom we spoke reportedly experienced at least some difficulties in recruiting and retaining staff. Most attributed these difficulties, at least in part, to the minimum qualifications required of all staff members, which include six months’ previous experience supporting individuals with I/DD and challenging behaviors and the ability to earn an RBT credential (including passing a written exam) within twelve months of hire. The ongoing effects of the pandemic, including a general labor shortage, were also common complaints.

“The stringent regulations almost encourage poaching. This is not a heavily populated area, and there are only so many [applicants] to begin with.”

Our interviews suggested that qualified staff are harder to recruit and retain in some regions than others. Administrators of EBS homes in Northern California reported that labor market conditions in that region are especially adverse. For example, one adult EBS home administrator explained:

For [many] years I had an incredible experience with other providers, where we were calling each other and offering support. But now people are feasting off of one another’s staffing pools... Now once [other EBS and CC home administrators] see how rigorously we train... and that [our staff] have the magic minimum qualifications, they will hire them out from under us. The stringent regulations almost encourage poaching. This is not a heavily populated area and there are only so many [applicants] to begin with. And EBSH’s are incapable of creating new staff. Their staff have to be created elsewhere, such as [ordinary group homes] or day programs... It is brutal. I have never seen anything like it. We are trying to meet the needs of new people who want to move in, but... we can’t bring them in until we hire more staff.

Another EBS home administrator in the same region similarly explained:

We have never been to the point where we are not hiring. Our ad just stays up there... We may get one applicant at time, so we are trying to work with what we have. It is also very difficult when RC and DDS won’t allow the rate to be competitive with other similar homes, and other agencies may offer a couple dollars more. There was a month where [we] lost 8 staff in one month. One resident who was slated to move in Nov. 2021 just moved in Nov. 2022 because of those 8 staff we lost... At an EBSH in Southern California [or the Central Valley], they are not paying as much, but the rent here is also more than it is there... [T]here are just not a lot of applications. The geographic location makes it difficult.

The latter administrator added that chronic understaffing tended, over time, to reduce morale. Working frequent overtime increased burnout among RBTs, and as a last resort, the facility’s owner or facility administrator had little choice but to cover open shifts themselves. “I have been on call 24/7 for years,” the operator explained. “I don’t feel like I can sustain this amount of work and pressure. It is just way too much.”

A third EBS operator in Northern California echoed these concerns. “We only have 26 staff and we need more,” they commented. “Everyone is doing overtime. We just can’t get staffing. And we have had to lay off staff because they [did not successfully attain] RBT status.”

To alleviate staffing shortages, one small operator observed, it might be advantageous to hire flexible staff who could be available to provide shift coverage on relatively short notice if a staff member who was scheduled to work a particular shift unexpectedly quit or called out. These staff members could be paid for a fixed number of hours, regardless of how many hours they were actually required to work in any given week. However, when the operator proposed this idea to the regional center, they were told, “we can’t pay anyone who is not onsite providing a service.” The concern was also reportedly raised that paying staff members to work flexible hours could become cost-prohibitive if their “on-call” hours were treated as hours worked.

Funding levels can vary, even among homes of the same type in the same region

Two administrators reported that EBS home funding rates can vary, even among the same types of homes in the same region. One EBS administrator stated, “we recently had to increase the staff hourly rate just to be competitive. When I initially talked to [the regional center] they said this is how much you can pay your RBTs. But after I found out that staff [at other EBS homes] were approved for higher hourly rate than us, I said that is not fair. I asked for an increase. [The regional center staff] were fine with it, but I have to say, I wish they would be consistent on what is approved for hourly rate for RBT staff.” Such funding discrepancies can arise because rates are not set by statute or regulation, but are individually negotiated with providers. “If you look at other EBSH and CCH homes,” another administrator commented, “everyone is supposed to [get paid] within the same range, but we are also told that each home can advocate for whatever we are asking for... It is individualized [because] there are differences across agencies. Like a nonprofit agency can offer employes write-offs of student loans, benefits like that, that [for-profit companies] can’t do.”

Although administrators agreed that there was some room for negotiation, they also believed that regional center personnel could not exceed certain monetary caps. “When push comes to shove during negotiations, there is a max and they say, you can’t go above that. I think DDS has a set rate that they don’t want to go above, because they would set a precedent for other homes.”

There is wide variation in how regional centers and home administrators handle the remediation of property destruction

In the words of one EBS home administrator, “property destruction is important to really highlight there because it is a fear of amongst providers of the incredible expense of that in the EBSH or CCH model... their bills are massive.” The enormous expense of remediating property destruction reportedly contributed to the bankruptcy of one company that formerly operated EBS homes. All respondents indicated that routine property maintenance, including ordinary wear and tear, was typically carried out and paid for by the property owner (landlord). However, approaches to property destruction that were directly attributable to behavioral incidents varied widely.

There also appears to be considerable variation in who bears the cost of remediating property destruction. All of the administrators we interviewed reported that regional centers and/or DDS bore the cost of major property damage that occurred in EBS and CC Homes. However, there was not always a bright line between major property damage and relatively inexpensive repairs that might, in some instances, be paid for by the company or property owner. For example, the administrator whose company operates many EBS homes explained that if such incidents were relatively rare in a particular home, the parent company would typically absorb the cost. However, if property destruction became frequent and costly in a particular home, the company would request reimbursement from the regional center, and a conversation would ensue. Although the regional center would typically agree to bear these costs, they might also request more information on why property destruction was so frequent and whether it could be reduced through behavioral modifications. There was reportedly at least one instance in which the property destruction caused by a particular resident became so extensive and costly that the individual was transferred to a more restrictive environment.

4. Techniques Used to Address Behavioral Support Needs

Value of RBT credentialing varies across homes and residents

As noted earlier, one of the most salient features of the regulatory structure of EBS and CC homes is the centrality of ABA. Every staff member who works with residents must become a registered behavior technician (RBT) overseen by a board-certified behavior analyst (or similarly trained clinician). In addition to supervising the RBTs, the BCBA(s) must spend six hours per month with each resident. Although none of the administrators we interviewed disputed the benefit of incorporating ABA principles into their programs, several suggested that relaxing the strict ABA credentialing requirements, and/or placing more emphasis on other therapeutic approaches, could improve the quality of care provided.

“I sometimes have to let staff go because they don’t [pass the exam]... even if they have the right relationship with residents, are compassionate and genuine, go through a 40-hour training and get the concepts and can implement them.”

First, several administrators explained that in the midst of a labor shortage, there were difficult tradeoffs between retaining strong staff and ensuring that all employees, including non-native English speakers and those with significant test-taking anxiety, passed the RBT exam. “I sometimes have to let staff go because they don’t [pass the exam],” complained one administrator, “even if they have the right relationship with residents, are compassionate and genuine, go through a 40-hour training and get the concepts and can implement them. That is why I lose a lot of staff – not because of attendance or bad conduct. Some of them come in with many years of experience, and they teach me something new every day, but can’t pass the test. Why do they all have to be an RBT? Where will we get replacements when we are already having trouble finding staff?” Another administrator similarly described passing the RBT exam as a “pain point” and commented, “we need a way to train them internally.”

Secondly, several administrators suggested that ABA, at least as conventionally practiced, could sometimes be difficult to reconcile with person-centered thinking and trauma-informed care. “In a typical setting,” one administrator explained, “A new BCBA walking into this home would think of just withholding reinforcers, like an iPad. But you can’t do that with adults. So motivating someone is not easy.” Another administrator similarly opined, “There is a difference in thought between [person-centered thinking] and the old-school behavioral model of ABA where you are looking at behaviors and consequences... I have worked with people who say if the kid is trying to have a meltdown, put them in restraint and don’t give them their iPad until they stop crying... If you want this, you have to earn that. But because of the person-centered stuff and regional center rights, that approach does not sit right with me. Our approach is to fill the environment with non-contingent reinforcers [rewards that are provided regardless of whether the resident engages in a desired behavior], which generally create a big behavioral change without having to do much... But it is not for everyone. Sometimes if someone comes in with a long list of trauma, you can approach them with open arms, friendly faces, lots of fun activities, and they will still be running out the door, trying to kill people, breaking things... and all that.” A third administrator summed up the difficulty in this way: “If every consultant who is designing [Individual Behavior Support] plans and sharing progress statements is not person-centered, then you are not person-centered.”

Finally, several administrators suggested that despite the person-centered planning principles embodied in the Individual Behavior Support Plan (IBSP) and Individual Behavior Supports Team (IBST), it could be challenging to effectively integrate non-ABA-oriented consultants or clinicians into the program. One administrator identified “shortfalls in the mental health care system” as one of the three biggest challenges of running an adolescent EBS home. “Our program is not just ABA,” explained one administrator, “it is really a marriage of therapy and ABA... every [client] is different, so we might be looking for more therapy, try[ing] to find more supports or specialists out of state to consult with, but at what level does it become too much?” Another administrator likewise noted that even with a person-centered IBSP and IBST and strong ABA program, the difficulty of finding stable psychiatric care made it difficult to support an individual with a co-occurring severe mental illness who frequently responded to internal stimuli. “[They] would rip a cabinet right off a wall,” the administrator explained, “but calmly in the sense that I’m not mad or aggressive, but responding to something [internal].”

Wide variation in the array of emergency intervention techniques used

As noted earlier, each EBS/CC home must draft an Emergency Intervention Plan (EIP) describing the circumstances and types of behaviors for which each potential type of intervention may be used. Restraint is only permissible as a last resort and if “the individual’s behavior presents an imminent danger of serious injury to self or others.”33 Moreover, restraint can only be carried out by staff who have completed at least 16 hours of instruction on “techniques that may be used to prevent injury to, and maintain safety for, individuals who are a danger to themselves or others” as part of a curriculum that is “evidence based, emphasize[s] positive behavior supports and include[s] techniques that are alternatives to physical restraint.”34

The guidance materials list, without endorsing, eight emergency intervention training courses used by providers across the state: Crisis Prevention Institute (CPI), the Mandt System, Management of Aggressive Behavior (MOAB), Pro-Act, Professional Crisis Management (PCM), Quality Behavioral Solutions (QBS) Safety Care, Therapeutic Options and Ukeru Systems (Grafton Method). Although the first seven of these methods differ in some regards, they have a great deal in common: all combine verbal de-escalation methods with traditional hands-on techniques for engaging safely in restraint (holds) in emergency situations. Ukeru, however, is a relatively new crisis-training method that uses blocking pads as an alternative to restraint and seclusion. All of the administrators with whom we spoke reported that they trained their staff in CPI, ProAct, PCI, or PCM. However, about a third of them – three children’s homes operators and two adult home operators – additionally trained their staff in Ukeru.

The choice of emergency intervention method(s) used seems to be driven by the overall acuity of residents’ behavior in the home. In lower-acuity homes, staff members reportedly were trained to perform physical holds or restraints using procedures approved by ProAct, CPI or PCM, yet rarely, if ever, used these procedures, relying instead on non-physical interventions such as verbal de-escalation or “giving space.” Although homes with the highest-acuity behaviors also trained their staff in traditional emergency interventions (including ProAct or CPI), in practice, they reportedly relied on Ukeru to handle most situations that required physical intervention.

The residents with whom we spoke confirmed that restraint was used only rarely. For example, one resident said he had been physically restrained once in the past year (a report confirmed by staff), but otherwise did not experience the types of restraint he had experienced in prior placements.

Unnecessary use of delayed egress devices in combination with secured perimeters

Across the state, 11 EBS homes and 2 CC homes utilize delayed egress in combination with secured perimeters. Delayed egress means that upon attempting to exit, the door will lock and an alarm will sound for a fixed period of time, after which the door can be opened. Secured perimeter means that there is a locked gate surrounding the facility.

Because residents in these settings face extreme restriction on when they can come and go, the regulations require that before any admission of an individual to a home utilizing these interventions, the regional center must conduct a comprehensive assessment and convene a planning team meeting to determine whether the consumer lacks the hazard awareness and/or impulse control that justify these restrictions on their freedom of movement. Every 90 days after an admission, the regional center is required to document that these interventions remain appropriate.

In practice, however, there do not seem to be clear criteria with which to make these determinations. Tellingly, one EBS home operator described a situation in which delayed egress devices lost power for an extended period without incident, raising the question of whether the restriction was necessary in the first place. The same administrator suggested that more individualization might also be appropriate, so restrictions could be used on a case-by-case basis. For example, if an individual living in a home with delayed egress devices and a secured perimeter no longer required these restrictions but did not wish to move, the individual could be given the code to the alarm, or some other method could be devised so they could come and go as they pleased.

5. Regulatory Compliance and Oversight

The complexity and rigidity of CCL’s licensure & client care regulations sometimes make it difficult for homes to provide person-centered care throughout the life cycle

One EBS home administrator described an incident in which several residents were highly motivated to brings pets into their home. The administrator was enthusiastic. The presence of service animals can “help so much,” the administrator explained, because “most people don’t have parents or loved ones, and [the staff] can’t hug you and tell you I love you. [That] would be out of scope, blurring boundaries. But a dog can lick your face and you are getting the emotional connection you need because you don’t have it normally.”

When the administrator proposed the idea of service animals to CCL, however, they encountered staunch opposition. “I was told that the home was ‘geared toward violent behaviors, so it [was] not safe to bring in an animal,’ the administrator stated. “I kept asking and they kept telling me no... they shot it down so many times!” Eventually, the administrator noted, the home secured outside funding for the service animal’s care, and even submitted a detailed safety net crisis plan specifying how staff would protect the animal if a behavioral incident occurred. Finally, after repeated attempts, the request was approved and pets were allowed into the home.

Reflecting on how much the addition of service animals had improved residents’ quality of life, the administrator commented, “I would say [to policy makers]: Think outside box! We can still build outside of the rules and regulations, still be meeting all of these [requirements], but don’t be so stuck... Person-centered [thinking] says: What do you want in our life? [If a resident says,] ‘I want to have a [pet],’ You got it! We will do that!”

“[SERVICE ANIMALS] help so much... most people don’t have parents or loved ones, and [the staff] can’t hug you and tell you I love you. [That] would be out of scope, blurring boundaries. But a dog can lick your face and you are getting the emotional connection you need because you don’t have it normally.”

Another administrator who oversees multiple adult EBS homes noted that a home’s failure or inability to obtain certain types of specialized licensure from CCL could also compromise residents’ continuity of care.

“Even if someone just sprains their ankle so they can’t walk,” the administrator explained, “they can’t be in the home even if they recover. They have to go somewhere else with a [non-ambulatory] bed.”

For example, any resident who cannot evacuate a home unassisted in the event of an emergency must live in a room designated as “non-ambulatory” that meets specific criteria (such as a specially equipped bed). “Even if someone just sprains their ankle so they can’t walk,” the administrator explained, “they can’t be in the home even if they recover. They have to go somewhere else with a [non-ambulatory] bed. The cool thing is that if you have [non-ambulatory] designed beds, you have the option to serve either someone who is [non-ambulatory] or someone who is ambulatory.”

A second example involves the issuance of CCL hospice waivers, especially to adult homes. “If we are engaged in trauma-informed care, we need to engage in end-of-life care if we can,” the administrator explained. “We had somebody move in who became hospice-eligible within weeks, but licensing made us wait [to get the hospice waiver]. By the time we got it 30 days later, he only had a few days left. So from day one, whenever an EBSH or CCH opens, we recommend applying for a hospice waiver... Otherwise as soon as someone gets a terminal diagnosis, they just move them to a [different facility]. Providing hospice care is a real honor, and it’s a big part of aging in place.”

A third example pertains to the prohibition on adult EBS/CC homes, which are licensed as adult residential facilities (ARFs), serving individuals under the age of 18. “Under Title 22, an [ARF] can have up to 50% of their census stay after age 59 as long as the placement remains appropriate. It used to be that we could also reach down to a group home [for children] and bring in someone who was 16 or 17. But we can no longer do that. There is now a very solid line – not a dashed line – between group homes [for children] and ARFs.” The administrator speculated that the rigid boundary was a response to concerns about children living with adults whose challenging behaviors could potentially put them at risk. In practice, however, this rigid boundary could make it difficult for high-quality adolescent EBS homes that are successfully meeting residents’ needs to provide continuity of care when the first resident turns 18, particularly if there is a significant age gap between residents.

Especially in adolescent homes that serve individuals with high-acuity behaviors, the bifurcated regulatory structure involving DDS and CCL can pose complex challenges

According to guidance from the Department of Social Services (DSS), summarizing regulations contained under CCR Title 22 and various provisions of the WIC, under the “Reasonable and Prudent Parent Standard,” group home administrators serving adolescents are required to make “careful and sensible parental decisions that maintain the child’s health, safety, and best interests.” Yet CCR Title 17, which applies to all regional-center-funded community placements, contains no such standard. In accordance with the Center for Medicare & Medicaid Service’s Home and Community Based Settings (HCBS) Final Rule, Title 17 prioritizes “a person-centered planning process... that reflects individual preferences and goals... is directed by the individual with long-term support needs... to assist the individual in achieving personally defined outcomes in the most integrated community setting, ensure delivery of services in a manner that reflects personal preferences and choices, and contribute to the assurance of health and welfare.”35

The administrator of an EBS home serving adolescents with high-acuity behaviors reported that complying simultaneously with Title 17 and 22 could be difficult, especially in situations where adolescents were attempting to engage in high-risk or self-destructive behaviors. “Title 17 is more focused on forward-thinking person-centered rights,” the administrator explained, “whereas Title 22 is still more old-school. Under the prudent parent standard, [saying no] to a 17-year-old who is trying to swallow [an object] in an attempt to end his life... is OK. But Under Title 17, it’s a civil rights violation.” Other examples cited of behavior that Title 22’s Reasonable & Prudent Parent Standard would likely prohibit, but could constitute a rights violation under Title 17, include a teenager’s attempted purchase and use of a vape pen, cigarettes, air rifle (which can cause death or serious injury), or pornographic materials.

Under Title 17, the only strategies reportedly available to deter unsafe behaviors, besides seeking an exception from OCRA, would be to ask permission from a resident’s parent or authorized representative to intervene, or – if a staff member believed a crime was about to take place – to call 911.

“Nobody ever communicates with each other,” the administrator observed. “I think [these decisions] are way above their heads so they don’t want to talk about it. So we do the best we can. We let it rest and hope it ends up OK. But it would be great if they could work together to figure something out. That would be absolutely wonderful.”

Despite copious regulations, the current oversight and enforcement system is insufficient to deter abuse, neglect or rights violations in EBS/CC homes

Several respondents alluded to the onerous regulatory oversight and paperwork burden involved in running an EBS/CC home. “We had an audit yesterday,” one administrator commented. “We were working with the regional center, DDS and CCL – audited by three different sources. Very fun.” Another administrator explained, “When it comes to planned audits, we have four from the [regional center], two from DDS, one from CCL [per year] – so that is seven audits we have to plan for in a year. And then at any point there can be a follow-up or unannounced audits... So there is a lot of oversight. We also have to do a certain level of reporting every month – every staff training hour, every RBT supervision hour, how many restraints, consultation hours and a plethora of other things.” The administrator complained, however, that not all homes were subjected to the same level of scrutiny. “It’s difficult sometimes when we are being held to that strict standard,” they commented, “[because] when we ask for support for everyone to be held to that standard, we don’t get that support.” These comments make clear that for EBS and CC homes that are closely monitored, the cost of regulatory compliance can be significant. Yet publicly available information also confirms the perception that not all EBS and CC homes are subject to the same level of regulatory scrutiny. Indeed, available data justifies concerns that the current oversight and enforcement system is inadequate to deter under-performing EBS and CC homes from shirking their regulatory duties in ways that can put residents’ health and safety at risk.

For example, in June of 2022, the State Auditor’s Office issued a report36 on DDS that found serious deficiencies in the current system, some of which had already been identified in a previous audit. “Lack of proper monitoring of vendors can result in serious harm to the consumers that those vendors serve,” the State Auditor concluded. “Nonetheless, DDS has inadequately overseen regional centers to ensure that they are complying with vendor monitoring requirements.” Among the widespread deficiencies described in the report were the following:

[S]tate law requires regional centers to perform regular on-site monitoring of certain vendors that provide residential services... However, none of the three regional centers we reviewed have adequately performed these biennialreviews... Although quality reviews are critical to ensuring the well-being of the vulnerable consumers that these vendors serve, we found that Alta California [one of three regional centers audited] did not always perform this type of monitoring... DDS’s own on-site reviews of vendors have uncovered similar serious issues... Finally, none of the three regional centers we reviewed have adequately monitored all their vendor files... Although DDS has been aware for a number of years that regional centers are not completing their investigations [of consumer complaints alleging rights violations] in a timely manner [within 20 working days], it has not yet taken steps to systematically address this issue.

The report noted that DDS’s own on-site reviews uncovered serious problems with vendor oversight, including “issues related to medication instructions, medication administration errors, staff training, [and] problems with the safety of the home, including possible mold, unsecured chemicals, and blocked emergency exits.”37

“DDS has inadequately overseen regional centers to ensure that they are complying with vendor monitoring requirements.”

The U.S. Department of Health & Human Services Office of the Inspector General (OIG) similarly found in September 2021 that California did not fully comply with federal and state requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities who resided in Community Care Facilities.38 Specifically, the state did not ensure that: (1) all critical incidents were reported and (2) all reported critical incidents were reported in a timely manner and followed up on completely to ensure beneficiaries’ health and safety.

Critical incidents include deaths, certain crimes, missing persons, reasonably suspected neglect, unplanned or unscheduled hospitalizations, reasonably suspected abuse or exploitation, and serious injury or accident.

A three-part investigative series by KALW, released in August, 2023, echoes these concerns.39 The series chronicles the story of an adult with ASD who experienced chronic abuse and neglect in an adult EBS home called Illinois Home, owned by Savita Health, a large for-profit company. The home was vendored by Alta California, the same regional center that was criticized in the State Auditor’s report for deficiencies in monitoring and vendor oversight. Less than a year later, the Los Angeles Times covered a story of resident abuse at an adult residential facility in Northridge owned by Elwyn, a large nonprofit company.40 Although the facility was not an EBS or CC home, the regulatory deficiencies described in the article echoed those identified by the State Auditor, OIG and KALW. Notably, the abusive employee – whose behavior was caught on video by a co-worker – had been terminated by a previous job because of a different abuse allegation. However, the Department of Social Services reportedly did not ban him from working at other licensed homes, or notify those homes of the prior abuse investigation or related criminal case. Moreover, the co-worker who caught the incident on video said she “‘did not feel safe’ reporting the abuse to her direct boss.”

Table 1 (below) summarizes available data from DSS on the oversight of EBS/CC homes. As of this writing, there were 121 EBS/CC homes operating in California, of which 53 had operated for at least 3 years. The state conducts three types of visits: “inspection” visits in which a survey team inspects a particular facility, “complaint” visits in which a visit occurs in the wake of a complaint, and “other” visits.

Confining the sample to the 95 homes that have been operating for at least one year provides important information about patterns of regulatory oversight. Panel B shows that these homes received about 4.12 visits per year, with “other” visits being the most prevalent type. However, more than half (64) of these homes were not visited at all for a period of at least twelve months. Panel C reveals that although the average number of citations issued per visit is 0.35, the likelihood of a visit resulting in a citation varies widely by visit type. “Complaint” and “other” visits result in similar number of citations per visit (0.41 and 0.42, respectively), whereas “inspection” visits yield an average of only 0.09 citations per visit. As is shown in Panel D, at least one complaint has been filed against 69.47% (66/95) of homes, and about 41.05% (39/95) of homes have been the subject of a substantiated complaint. Each complaint contains, on average, 1.93 allegations and results in 1.21 visits; about 35% of all complaints are at least partly substantiated. Finally, as noted in Panel E, some children’s EBS/CC homes record inspection citations but no inspections, raising concerns about data quality.

Table 1: Enhanced Behavioral Support & Community Crisis Homes (4/22/2019 - 4/22/2024)

	All	CCH	H	Both	CCH	H	Both
A1. Homes currently operating
A1. All homes currently operating	121	24	73	97	8	16	24
Homes operating at least 1 year	95	21	59	80	5	10	15
Homes operating at least 2 years	73	15	49	64	0	9	9
Homes operating at least 3 years	53	10	37	47	0	6	6
B. Visits
B1. Avg. total visits per home per year	4.12	4.33	3.53	3.74	8.34	5.08	6.16
Avg. inspection visits per home per year	0.76	0.98	0.83	0.87	0.00	0.23	0.16
Avg. complaint visits per home per year	1.04	0.94	0.96	0.95	1.63	1.41	1.48
Avg. other visits per home per year	2.33	2.41	1.74	1.91	6.71	3.44	4.53
B2. # homes not visited at all for at least 1 year	2.33	2.41	1.74	1.91	6.71	3.44	4.53
C. Citations
C1. Avg. citations issued per visit	0.36	0.27	0.37	0.34	0.32	0.44	0.41
Avg. citations issued per inspection visit	0.11	0.00	0.02	0.02	0.00	2.75	4.00
Avg. citations issued per complaint visit	0.52	0.32	0.64	0.55	0.00	0.42	0.40
Avg. citations issued per other visit	0.38	0.34	0.43	0.40	0.22	0.32	0.29
D. Complaints
D1. # homes with at least 1 complaint	49	12	29	41	1	7	8
# homes with at least 1 substantiated complaint	39	8	26	34	1	4	5
# homes with at least one citation	39	8	26	34	1	4	5
# homes with at least 1 Type A citation	22	4	15	19	0	3	3
D2. %complaints at least partially substantiated	0.35	0.26	0.40	0.36	0.09	0.35	0.27
D3. Avg. # allegations per complaint	1.93	2.13	1.88	1.95	1.73	1.88	1.84
D4. Avg. # visits per complaint	1.21	1.23	1.19	1.20	1.00	1.35	1.24
D5. Avg. # citations per substantiated complaint	1.43	1.21	1.47	1.42	1.00	1.56	1.50
Avg. # Type A citations per substantiated complaint	0.58	0.57	0.56	0.56	0.00	0.78	0.70
E. Data Quality Concerns
E1. Homes with insp. citations but no insp. visits	5	0	0	0	2	3	5

NOTES: Data were obtained from the California Department of Social Services official website and covers the period from 4/22/2019 - 4/22/2024. Although Panel A focuses on all currently operating (i.e., licensed) EBS/CC homes, Panels B-E are restricted to the 95 facilities that have been operating (licensed) for at least one year. (Closed facilities are not included.) “Inspection” visits refer to inspections of the facilities to evaluate compliance with statute and regulations. “Complaint” visits refer to visits that investigate a complaint allegation. “Other” visits refer to all other types of visits, such as those involving case management, the development of a plan of correction, or pre- or post-licensing. The average number of citations issued per visit is calculated by dividing the (total/inspection/complaint/other) citations by the total number of (total/inspection/complaint/other) visits. A single complaint may include more than one allegation of misconduct. Type A citations are issued for the most serious types of violations, in which there is an immediate risk to the health, safety, or personal rights of those in care, whereas Type B citations are issued for violations that if not corrected may become an immediate risk to the health, safety, or personal rights of those in care. Red and yellow cells contain numbers whose accuracy is somewhat in doubt because their calculation involves using variables impacted by a data discrepancy. Specifically, two Children CCHs and three Children EBSHs that received inspection visit citations have no inspection visits on their records. These homes represent over 20% of all homes used to calculate figures shaded in red, and less than 5% of all homes used to calculated figures shaded in yellow. Gray cells, although not containing any obvious errors, should be interpreted with caution. The grey-shaded cells in Panel C are low compared to other figures in the same panel, because only one Adult EBSH has an inspection visit citation. One pair of grey-shaded cells in Panel D is blank, and two other pairs of grey-shaded cells are identical, because there are reportedly no substantiated complaints in children’s CCHs.In short, the available evidence suggests that despite copious regulations, the monitoring of EBS and CC homes is falling short. There are sizable regional disparities in the frequency and intensity of vendor inspections, with some regional centers failure to fulfill their statutory duties putting residents’ safety and health at risk.

6. Residents’ Day-To-Day Autonomy & Overall Quality of Life

As part of the state’s safety net, EBS and CC homes are designed to avoid institutionalization, and to promote the safety and long-term stability of individuals with high behavioral support needs. Yet it is equally important to consider how well these settings promote residents’ felt sense of autonomy, community integration and overall quality of life. As part of our research, we sought to investigate these more subjective aspects of life in EBS and CC homes. Our findings in four areas – residents’ choice over placement decisions, day-to-day autonomy, access to family and community, and overall well-being – are presented below. These findings should be interpreted with particular caution since, as noted at the outset, we only had the opportunity to interview five residents at three of the eight EBS and CC homes where site visits were conducted. Although we cannot say whether the information summarized here is representative of the experiences of most residents of EBS or CC homes, we believe the trends and concerns brought to light warrant further attention and investigation.

Resident Choice over Placement Decisions

Our research suggested that some residents were not offered a choice of whether to move into an EBS or CC home; the new placement was simply presented to them as a fait accompli. For example, one resident reported that staff at a prior congregate setting first informed them of the new placement. Another resident reported learning of the impending transition from a judge. In both cases, residents reported being given very little, if any, information about the EBS/CC home to which they would be moving.

Although several residents expressed a desire to move to other settings, myriad obstacles reportedly hampered efforts on the part of residents and/or staff to design solid transition plans. For example, one resident who expressed a long-term desire to live with family stated, “I asked to go home, and they said to talk to my family.” Although the resident of another home reportedly stated that they wanted to live independently, the staff at the home opined that the resident was “not ready” to move because he was still demonstrating the “behaviors” they were working to eliminate. Another resident worried that the staff at future placements might not adequately address his medical needs, a concern that was echoed by their staff and seemed to be causing the resident considerable anxiety.

Personal Autonomy

Our site visits and resident interviews brought to light several restrictions on residents’ everyday choice and control. Some homes reportedly restricted residents’ access to food by locking up snacks, or set aside certain food items so they could be used as rewards for behavioral compliance. Some homes reportedly restricted residents’ access to cell phones or other personal devices. The extent to which residents were allowed to come and go as they pleased also varied widely across facilities. As noted earlier, approximately 11 EBS homes and 2 CC homes across the state use delayed egress devices and secured perimeters to restrict residents’ ability to leave the property. Residents also reported varying levels of restriction on their everyday freedom of movement. For example, one resident reported that he goes to the gym once a week, another reported that he cannot leave the home when he wants. Another resident noted that sometimes, if “one [resident] was misbehaving,” none of the residents could engage in a desired activity. Summing up his felt sense of personal autonomy, a third resident commented, “It’s alright [here] but sometimes we have to follow rules even if we don’t want to.”

“It’s alright [here] but sometimes we have to follow rules even if we don’t want to.”

Community Integration

Several residents and staff reported that, particularly if a home was located in a geographically remote location, providing residents with regular access to their family and community could be challenging. For example, one resident living in a rural home explained that the distance from their family home made it difficult for family members to visit. At one youth facility, one resident reportedly traveled over an hour each way to attend school, and two residents did not regularly attend school at all (in part because of the school district’s uncooperative attitude). Some residents reportedly had to travel long distances to meet with their clinicians.

Several administrators emphasized the importance of collaborating with other stakeholders, such as school district personnel and potential employers, to develop robust community-based programming. The scarcity of such programs for people with I/DD and high behavioral support needs was described as a barrier to community integration. “Give people the ability to do other things outside in community!” one administrator exclaimed. “It would really help if [residents] are busy, not sitting at home... [they] need to be with more like-minded individuals and learning something... put them in situations where they can learn skills and build community... ps with people not paid to work with them [in] integrated settings.”

Resident Satisfaction

The five residents of EBS and CC homes with whom we spoke differed in their overall level of satisfaction. Four stated that they felt “safe” and “respected.” Of these, three also reported that they “liked living” in their EBS/CC home. (The fourth resident who reported feeling “safe” and “respected” in their home did not comment on whether they “liked living” there.) Two of the residents who stated that they “liked living” in their EBS/CC home compared certain aspects of the home – such as the frequency of physical restraint – favorably with prior placements. One resident summed up their feelings by stating, “This is the best group home I’ve been in.”

However, even the three residents who reported that they “liked” their current placement, and felt “safe” and “respected,” mentioned ways that their quality of life could be improved. For example, one respondent commented, “The staff do not respect me here. Last week they went through my stuff looking for a metal piece. They threw [my stuff] on the bed and made me clean it up.”

A fifth resident, when asked about his general feelings about the EBS/CC home, expressed strong reservations. “It’s hard to live here,” he said, because of the facility’s inability to meet his medical needs.

IV. Additional Residential Models for People with I/DD and Complex Support Needs

As discussed in the prior sections, EBS and CC homes are often treated as the community-based placements of last resort for people with I/DD and complex support needs. Yet this “one-size-fits-all” approach has important drawbacks. First, for some residents, the restrictions on day-to-day autonomy and choice that comes with living in a congregate setting may feel unduly restrictive or burdensome. Secondly, some individuals with exceptionally complex needs cannot be safely supported in EBS or CC homes, leaving them at risk of hospitalization, institutionalization or incarceration. Finally, the virtual absence of any community-based alternatives to EBS and CC homes poses practical problems for the system as a whole. Some operators stated that trying to meet the needs of one resident with exceptionally high behavioral support needs made it difficult for staff to support other residents, lowering staff morale. Moreover, in two instances, the presence of a resident with exceptionally high-acuity behaviors reportedly prevented an EBS or CC home from operating at full capacity.

In light of these complexities, we chose to investigate whether some individuals for whom EBS and CC homes are currently the only (non-institutional) option could be better served in other community-based settings in ways that would also strengthen the system as a whole. Our research strongly suggests that the answer is yes.

Enhanced Supported Living Services

Support Living Services (SLS) is the primary non-licensed community living option available to people with I/DD. A core aspect of SLS is that the person served lives in their own home with individualized support that is flexible and tailored to their needs and preferences. In the SLS model, unlike in licensed community care facilities, individuals can choose whether to live alone or with housemates (and in the latter scenario, how many and which housemates to live with). The supported individual(s) can also choose their own staff. If a particular employee is a poor fit for them, they can replace them (or the vendor) with one that better meets their needs. Staffing schedules and routines are designed to maximize the well-being of the individual(s) being served, with the convenience of staff or managers playing only a secondary role. If a resident experiences a crisis, there is no fixed time frame in which stabilization must occur.

Beginning in the late 1990s and early 2000s, as many adults with I/DD began leaving institutional settings, some SLS agencies started serving individuals with complex support needs whom no licensed community care facilities were willing or able to support. Ever since, in the words of one stakeholder, these agencies have filled “a gaping hole” in the safety net for people “with too many medical support needs to be placed in a behavioral group home and too many behavioral support needs to be placed in a medical group home.” As one provider put it, “we have successfully transitioned people out of many institutional settings such as behavioral group homes, community crisis homes, acute psychiatric facilities, developmental centers, correctional facilities, and emergency rooms.” Over time, some stakeholders began informally using the term Enhanced Supported Living Services (“Enhanced SLS”), which we adopt in this report, to describe the augmented level of care typically required to provide SLS to an individual with I/DD and high behavioral support needs (along with, in some cases, complex medical needs).41

As part of our investigation, we interviewed SLS agencies that provide or who are interested in providing Enhanced SLS services. We also reviewed testimony at a March 2023 legislative oversight hearing about the DDS Safety Net Plan in which a regional center, a provider, and disability rights advocate all testified in support of this model.

“With [enhanced SLS], we have successfully transitioned people out of many institutional settings such as behavioral group homes, community crisis homes, acute psychiatric facilities, developmental centers, correctional facilities, and emergency rooms.”

The Enhanced SLS model includes high levels of provider training and competencies in ways that support the medical and behavioral support needs of the individuals served, a streamlined process to pay higher wages to direct care staff, the ability to provide SLS hours in lieu of in-home supportive services, high levels of wraparound coordination, and lower caseload ratios. Unlike residents of CC homes, residents of Enhanced SLS can navigate crises in their own homes, on their own time, with their staff, services, access to the community, and support systems intact. In the words of one provider, “We just surround them with support and they never have to leave their home [in times of crisis].”

Additionally, a significant barrier identified by SLS providers is the lack of accessible, affordable housing. Enhanced SLS mitigates these barriers by streamlining approvals for regional centers to fund rental assistance and environmental accessibility adaptations (home modifications and retrofits) when a person’s health, safety, and access to the community would otherwise be at risk.

To date, the state has not officially recognized Enhanced SLS as a component of the state’s safety net; indeed, SLS was not mentioned at all in DDS’s 2023 Safety Net Plan. Consequently, as of this writing, Enhanced SLS is being provided in an ad hoc and inconsistent manner across the state. For example, in several regional centers, Enhanced SLS providers are using health and safety waivers to secure higher rates than are typically available. Yet each health and safety waiver must be individually approved by the regional center executive director, a cumbersome process that places a significant administrative burden on the provider. “If there were criteria for what types of things could be included in an Enhanced SLS rate,” one Enhanced SLS provider opined, “[it] would be so much easier than having to every single time go through the [health and safety] process. It feels like they want us to give up.” In a few regional centers, SLS providers have found creative ways to offer Enhanced SLS services without health and safety waivers.

Although expanding access to Enhanced SLS seemingly could help strengthen the residential continuum of care, without a robust regulatory and funding structure to support it, it will remain unavailable to most individuals with I/DD and complex support needs.

Individualized residential homes for youth who rely on safety net services

Creating nurturing homes for school-age children with I/DD and high-acuity BSN who cannot live with their family of origin poses special challenges. Some may be struggling with symptoms of a co-occurring severe mental illness. Some may have experienced significant trauma, abuse or neglect. The hormonal and developmental changes that adolescence brings may exacerbate mood instability and high-acuity behaviors. Even though they are legally entitled to a free and appropriate public education (FAPE), children with I/DD and complex support needs and/or co-occurring disabilities may struggle to enforce their educational rights. For all of these reasons, children with I/DD and complex needs are at particularly high risk of becoming involved with the criminal legal system. We are aware of two community-based settings in which such youth can be supported safely in a person-centered manner, both of which differ in meaningful ways from EBS and CC homes. Below are brief summaries of each model:

Non-congregate, home-based models for youth with complex support needs in acute crisis.

The first model of non-congregate homes for youth with significant support needs was pioneered by Seneca Family of Agencies. Founded in 1985, Seneca began by providing residential and day treatment to a small group of youth with some of the most complex, persistent, and pervasive needs in California. It has since grown into a large, multi-state agency spanning every child-serving system, serving over 18,000 youth and families each year. Across its diverse services, Seneca maintains an explicit treatment approach referred to as Unconditional Care®. Unconditional Care® began as a promise to youth placed in its earliest programs that this placement would be different – that they would never be discharged for showing the behaviors that had led to their referral – and Seneca staff would do whatever it takes to support them. Refined through decades of practice, the Unconditional Care® model includes tools and strategies to assess and address the relational, behavioral, and ecological needs of youth who have experienced trauma, disability, poverty, and other complex stressors.

In serving youth with the highest levels of complex care needs, most of whom are in the foster care system, Seneca has developed two “enhanced” home-based models. In Seneca’s caregiver-based model, a highly trained Resource Parent and team of mental health providers work together in providing an integrated program of specialized and intensive care, services, and treatment in an intensive foster care home. Enhanced Resource Parents – who must have prior experience working with youth with complex needs, a commitment to Unconditional Care®, and the capacity to be available 24/7 to respond to youth needs – go through an extensive training and approval process. A team of clinicians and support counselors assist the youth and family through scheduled therapeutic support, check-ins during challenging periods, or respond to crises in the home as they arise.

Although this model works well for many children, Seneca has found that youth with the highest acuity of needs are sometimes best supported in a highly individualized staffed model of care. Seneca developed a different approach to meet the needs of these children, who may not require inpatient psychiatric services, but cannot live safely with Resource Parents in a family home or with multiple peers in a group home. In this enhanced staffed model, a multidisciplinary team provides intensive, around-the-clock treatment and stabilization services to just one or two young people in a specially equipped home that is owned or leased by the agency. This staffed model is designed to create a home-like environment and provides a structured treatment setting with psychiatric care, case management, family finding and engagement, and individual/family therapy. For youth who are disconnected from family or in need of mental health support, staff assist them in their permanency planning or transitioning to their next form of home-based care.

“Rather than continuing to see youth with persistent complex needs bounce from one placement to another, further compounding their experiences of loss and trauma, we decided to build an entire program around a single youth at a time.”

According to Seneca’s CEO, Leticia Galyean, congregate living environments are often impractical and unsafe for children with the highest level of need.“For young people with really complex behaviors who have been repeatedly failed by placement settings,” Galyean explained, “the safety risks and competing demands placed on the kids and staff in a family home or group home are just too great. Rather than continuing to see youth with persistent complex needs bounce from one placement to another, further compounding their experiences of loss and trauma, we decided to build an entire program around a single youth at a time. We turn a small single-family home into a therapeutic environment, and surround the child with adults who support them, advocate for them, model positive behaviors and relationship building alongside them, and connect them to other adults who can stay in their lives forever. When the entire home is individualized to meet the therapeutic needs of that one child, theycan start to thrive, stabilize and prepare to transition to a lower level of community- or family-based care.”

• Long-term, wrap-around care in a supported single child residence (SSCR) funded through self-determination.

About ten years ago, a youth with I/DD and co-occurring severe mental illness was unable to live at home because of their exceptionally high behavioral support needs.42 When no EBS/CC home in California could meet their needs, the youth spent two years in hospitals and institutional settings, mostly located out of state. In those placements, the youth was largely confined to their bedroom, with no access to the community, no academic instruction and few visits with family.

Ultimately, the youth’s family reached an agreement with the state to develop a new, unlicensed service delivery model, which we call a supported single child residence (SSCR). The family agreed to find a home for the youth and retrofit it to minimize property destruction, mitigating the need for emergency interventions. The regional center agreed to fund intensive, around-the-clock staffing necessary to provide a unique program grounded in principles of ABA. The staff were initially employed by a supported living agency. The school district agreed to send a “home health” teacher to the youth’s home to provide academic instruction. All staff were trained in the advanced curriculum of QBS Safety Care. (Ukeru was not a viable option because blocking pads had to be available to staff at all times, and the youth would frequently break and ingest any movable objects in the environment.) A detailed behavioral intervention plan and set of protocols were developed, and adjusted frequently, to mitigate safety risks and maximize the youth’s access to the community. Unlike EBS and CC homes, only one staff member per shift obtained RBT licensure, and BCBA supervision was largely funded through private insurance. Although all entry-level staff were required to have some prior caregiving and/or teaching experience, this experience was not limited to clients with I/DD or high behavioral support needs.

“Intangible qualities – such as patience, maturity, curiosity, a strong work ethic, attention to detail, emotional intelligence, creativity, strong listening skills, compassion, and non-reactivity – proved to be stronger predictors of success than prior experience in the field.”

The youth’s family eventually took over the day-to-day management of the program though the self-determination program. As of this writing, the youth is still living in this setting, with regular home-based academic instruction, frequent community outings, and regular engagement with family members.

The flexibility of the SSCR’s program design conferred important advantages. Since the home was not subject to community care licensing, and was funded through the self-determination program, the family had the opportunity to experiment with alternative staffing models. Over time, they learned that previous experience working with individuals with I/DD and high behavioral support needs was not a strong predictor of success. Some staff members with no such experience flourished in their roles, while others with years of comparable experience struggled to approach the client with respect, humility, compassion and an open mind. Intangible qualities – such as patience, maturity, curiosity, attention to detail, strong listening skills, and emotional non-reactivity – were stronger predictors of success than prior experience. As a result, hiring decisions were made holistically, with the determining factor being whether the applicant’s personality and career goals seemed like good fits for the program.

One of the most difficult challenges of the SSCR model turned out to be avoiding understaffed shifts, which were unpredictable and could threaten the youth’s safety and that of his staff. Because the SSCR program supported only one client, it could not – unlike SLS agencies serving many clients, or vendors operating many group homes – benefit from economies of scale. A sudden cluster of untimely absences, or the resignation or termination of a single staff member, could leave a sizable proportion of shifts understaffed. The hiring of “flex” staff members – who were paid for a fixed number of hours per week but had no set schedule, and could be asked to provide shift coverage on relatively short notice – provided a partial solution to this problem.

Another complex challenge facing the SSCR model was deterring and detecting abuse. In several of the youth’s prior placements, a staff member had lost their temper and behaved in an abusive manner during a behaviorally charged incident. In one such instance, a co-worker reported the abuse promptly and the offending staff member was terminated. Yet in two other instances, no action was taken by the institution, despite the presence of an eyewitness report, due to co-workers’ fear of reprisal and/or a lack of corroborating evidence. To prevent similar problems from recurring in the SSCR model, the family decided to install video cameras in all areas of the home that were accessible to the youth and in which staff did not have a reasonable expectation of privacy, despite the loss of privacy that such a policy entailed. Although the video footage was only kept in storage for about six weeks and was not regularly reviewed, the system proved beneficial in three ways. First, it had a disciplinary effect on staff. After being introduced to the video cameras during their initial orientation, staff were on notice that any wrongdoing would likely be captured on camera, and any assertions they made about what did (or did not) occur during behavioral incidents would be cross-checked against video recordings. Secondly, the presence of video cameras lessened some employees’ reluctance to report misconduct by their co-workers. Without video surveillance, even employees who were not concerned about retaliation by their managers might fear reprisals from their co-workers who realized they had “ratted them out.” The presence of video cameras substantially mitigated this problem, since an employee whistleblower could request that, in any future disciplinary action, managers reference the video footage without mentioning whether a co-worker’s report had initially brought the wrongdoing to light. Finally, the presence of video surveillance helped create a culture of mutual accountability by enabling managers to determine when and how problematic staff behavior (such as incidents of excessive force) took place, diagnose their root causes, take disciplinary action when needed, and develop effective preventive strategies.

V. Individualizing the Safety Net: Our Recommendations

Person-center the placement process

As discussed earlier in Section III, there is currently a great deal of inertia in the current system. Creating “default” placement pathways is contrary to the person-centered requirements of Medicaid and the Lanterman Act. A more comprehensive approach, rather than assuming that the only community-based option is EBS and CC homes, would consider a wider variety of models – including Enhanced Supported Living Services for adults, and non-congregate, home-based models for youth with complex support needs – and solicit input from the person served before deciding that an EBS or CC home placement is the best option.

A less restrictive setting should not mean a less supportive setting

As discussed earlier, several administrators expressed concern that residents who “stepped down” from EBSH homes to less restrictive settings often experienced a reduction in support, which threatened the progress they had made. If anything, and as demonstrated by the individualized, home-based models discussed above, support should be at least temporarily increased when individuals step down to less restrictive settings, to set them up for success.

Make requirements for direct-care staff more flexible to meet residents’ needs

We learned that in some areas, the statutory prohibitions on hiring staff who do not have at least six months’ experience providing care to individuals with I/DD who need a high level of support, and on retaining staff who cannot pass the written RBT exam within a year of their hire date, are problematic. These prohibitions can dramatically reduce the pool of qualified applicants, and also make it difficult to retain qualified staff who have limited proficiency in written English or significant test anxiety. As noted above, some staff members in a program serving an adolescent with very high behavioral support needs (described in Section IV) lacked these qualifications, yet were still able to provide quality care. We recommend that the six-month experience requirement be broadened to include any type of caretaking experience, and that a procedure be considered that would enable a supervising BCBA to attest that a particular individual is qualified to carry out an ABA program even if they have not passed the RBT exam.

A related concern voiced by EBS and CC operators in regions experiencing acute labor shortages was the difficulty of keeping shifts fully staffed when staff members unexpectedly resigned or called out of scheduled shifts with little advance notice. Permitting operators in these areas to hire “flex” staff members – who would be paid for a set number of weekly hours in exchange for working a variable schedule and covering shifts with little advance notice – could provide a promising solution to this problem. Flex positions would need to be carefully structured to ensure that the time employees spent waiting to be called in did not meet the state’s definition of compensable on-call time.43 These positions could provide a cost-effective “buffer” against understaffed shifts in the regions where staffing flexibility is most needed, improving staff morale and lower the risk of burnout among EBS operators and administrators.

Take a more systematic approach to funding of property remediation

One consistent theme to emerge from our research was the significant cost of property remediation. For example, one operator reportedly filed for bankruptcy because of the high cost of remedying property destruction. Many operators whose residents engage in particularly high levels of property destruction reported that the costs of property remediation were covered by the regional center and/or DDS. Yet in homes that have not previously supported an individual with high levels of property destruction, making such changes rapidly can be difficult and may become a barrier to timely placement. We recommend that the state take a more systematic approach toward addressing the needs of individuals who engage in frequent property destruction. First, we suggest that the state ensure that EBS and CC operators do not bear the burden of remediating broken property. Secondly, we suggest that the state allocate special funding to increase the stock of “durable residences” that are custom built to withstand high levels of property destruction. Importantly, such residences should include EBS and CC homes in addition to non-congregate settings such as Enhanced Supporting Living Services (for adults) and SSCRs (for children and adolescents). Finally, we recommend that DDS host a clearinghouse or forum in which individuals can share information and resources on how to design or purchase durable accommodations that effectively serve the needs of individuals who engage in high levels of property destruction.

Improve alignment between Title 17 and 22 regulations

Our research revealed that especially for adolescents, there are inconsistencies between Title 17 and Title 22 that can make it difficult for EBS homes to strike a consistent balance between respecting residents’ rights and circumventing hazardous situations. We recommend that DDS and DSS convene a joint working group to reduce these inconsistencies and harmonize the regulatory requirements.

Collect more data on the adequacy of safety net services and important industry trends

Public data provide only a partial glimpse of the number of regional center clients with I/DD and complex needs, and the frequency of their transitions to, from, and between highly restrictive environments. There is, as of this writing, no reliable way to track the level of unmet need, such as the number of individuals who have trouble finding suitable placements.

There is likewise no public data available on the ownership type or structure of EBS and CC homes – a concerning omission given the sizable amount of research suggests that for-profit companies provide lower-quality care to individuals with disabilities.44 Some recent studies suggest, further, that ownership by private equity firms or real estate investment trusts (REITs) correlates with inferior health outcomes for nursing home residents.45 To help stakeholders track industry trends, the Centers for Medicare and Medicare Services (CMS) has long required nursing homes to disclose whether they are owned by a government, nonprofit or for-profit company,46 and recently implemented a final rule requiring facilities to disclose information on private equity and REIT ownership on Medicare enrollment applications.47

We recommend that the state collect and publish data that would enable stakeholders to track trends affecting individuals with I/DD and complex support needs. For example, the state could publish detailed “snapshots” of the number of individuals residing in highly restrictive (i.e., institutional, carceral, and hospital) settings; the frequency of transitions between such settings; the frequency of transitions between these settings and community-based alternatives; and the number of individuals who spend many weeks or months awaiting suitable placements. The state should also follow CMS’s lead in requiring facilities to report their ownership type and whether they are owned by private equity firms and/or REITs, so researchers can better discern whether ownership type correlates with residents’ safety, health and well-being.

Reduce regulatory barriers to provision of stable, person-centered care across the life cycle

Our research revealed that in some cases, the detailed licensure requirements and regulations imposed by Title 22 can interfere with the ability of EBS homes to provide person-centered care, and to allow residents to "age in place" in a stable, supportive residential setting throughout the life cycle. We recommend that DDS and DSS convene a joint working group to identify, and if necessary eliminate or update, the CCL regulations or licensure requirements that pose the greatest barriers to residents' quality of life and continuity of care.

Strengthen regulatory oversight

Analysis of public data on inspections of EBS and CC homes raises concerns about the adequacy of regulatory oversight. For example, complaint-triggered visits seem to be especially “productive” (more likely to result in citations) than other visit types, raising the question of whether the state is doing enough to ensure that complaints are timely reported and promptly and thoroughly investigated. The data on children’s EBS/CC homes, which are sometimes internally inconsistent, raises concerns about data quality. Perhaps of greatest concern, a sizable proportion of facilities were apparently not visited at all for at least one year. Recent audits by federal and state agencies, and press coverage of cases of resident abuse, reinforce concerns about deficient and inconsistent oversight. The state should convene a task force to consider the best way to monitor EBS/CC homes, including the most efficient ways to process complaints, schedule visits, collect and analyze regulatory data in a proactive and systematic fashion, and respond more quickly to cases of suspected abuse or neglect.

Strengthen staff whistleblower protections and revisit adequacy of system for investigating and tracking allegations of abuse and neglect

Since complaint-driven inspections appear to be a particularly helpful way to identify problems, DDS and DSS should do more to ensure that all stakeholders – including staff members – have sufficient incentives to file complaints in cases of suspected abuse, neglect, or violations of rights. Both agencies should scrutinize existing whistleblower protections and speak with staff to determine whether additional measures might be taken to ensure staff do not keep quiet for fear of losing their jobs. In addition, DSS should revisit the adequacy of its procedures for tracking credible claims of abuse or neglect filed against individual staff, so that employees with a substantiated history of abusive conduct are stripped of their ability to work in the industry in a timely fashion, before they have the opportunity to violate the rights of additional residents.

Provide state-funded resources for Ukeru training

We learned that in many contexts, Ukeru training can sharply reduce, if not eliminate, the need for hands-on physical interventions. We suggest that the state consider subsidizing Ukeru training and supplies for operators, to help minimize the need for physical restraint.

Strengthen enforcement of home and community-based services (HCBS) regulations

The federal government recently proposed regulations to strengthen enforcement of HCBS safeguards, including minimum requirements for grievance and incident management systems. The proposed grievance system is specifically designed to give people a way to notify their state Medicaid agency if they have a complaint about how a provider or regional center is complying with person-centered planning and HCBS settings and includes explicit protections from provider retaliation. The regulations also require states to operate and maintain an electronic incident management system (using a common minimum definition for what is considered a “critical incident”) and investigate, address and report on the outcomes of the incidents within specified timeframes. We suggest that the state begin to implement these federal regulations and not wait for formal adoption.

Create residences in which a single individual in crisis can receive intensive short-term treatment

The success of the Seneca model, discussed earlier in this report, illustrates the value of providing short-term treatment and stabilization services in non-congregate residential settings. Even if CC homes are effective in stabilizing many individuals who cannot be served by other systems, there are some for whom the model would be unsafe or ineffective. Building the capacity to deliver services to such individuals in non-congregate settings would improve their autonomy, quality of life and community integration. Moreover, it can indirectly benefit other individuals with complex needs by making it easier for CC homes to operate at full capacity.

Create homes in which a single individual can receive long-term wraparound support

For some children and adults with I/DD and high behavioral support needs, EBS homes may offer long-term stability, social connectedness and community integration. However, that is not universally the case. There are some individuals who, because of the nature of their disabilities, cannot be supported in a congregate setting without putting their own safety (and that of other residents and staff) at risk.

To meet the needs of these individuals in the community, we recommend expanding residential models – such as Enhanced SLS and Supported Single Child Residences – that can offer intensive, long-term support to a single individual in their own home. The cost of staffing such individualized residences could be defrayed, in part, by In-Home Support Services (IHSS) and/or provisions of private insurance plans that mandate the funding of ABA services upon a showing of medical necessity. Expanding opportunities for individuals with exceptionally complex needs to reside in such highly individualized settings would also strengthen the safety net as a whole by enabling EBS home to operate at full capacity. This recommendation, along with the points discussed earlier regarding property remediation and durable accommodations, go hand-in-hand with initiatives to create more affordable, accessible housing across the state.48

VI. Areas for Future Research

• Coordination with education system: DDS regulations outline access rights that individuals with developmental disabilities are entitled to under the laws and Constitutions of both the State of California and the United States. This includes the “right to participate in an appropriate program of publicly supported education, regardless of the degree of [disability].” Despite this mandate, we learned that at one CC Home, there appeared to be two school-aged children not in school, while another traveled over an hour each way to go to school each day. This suggests a broader lack of collaboration on the part of educational institutions and safety net settings.
• Further research is needed to ascertain the legal responsibilities of regional centers and schools to meet the educational needs of children and youth who rely on safety net settings, assess barriers to educational services, and examine the level of collaboration, if any, between the education system and EBS/CC Homes.
• Alternatives to police interactions: Some administrators reported that if residents engaged in particularly high-risk behaviors, they might have few alternatives but to call 911 and request the assistance of law enforcement personnel. However, it might be particularly difficult for staff to make such a call in the midst of a crisis, let alone provide sufficient context on the nature of EBS and CC homes and the particular needs of the individual in crisis. Additionally, research shows that people with I/DD are more likely to encounter the police and often have trouble understanding, responding to and obeying police orders.49 This can be misinterpreted as defiance, often resulting in unnecessary use of force and arrest.50 Due to these factors, the United States Department of Justice and Health and Human Services released guidance to states about emergency responses to people with behavioral health and other disabilities, which included alternatives to law enforcement involvement.51
  
  Further research is needed to examine the role that law enforcement plays with regard to people in EBH and CC homes, including the impact of the recent federal guidance.
• More effective ways to detect and deter abuse and neglect: We learned about gaps in the current oversight and enforcement system and uncovered ways in which our current system is insufficient to deter resident abuse, neglect or rights violations. Further research is needed to identify the gaps in our system and how those gaps should be addressed. A recent change in federal policy could help point the way toward needed reforms. In April 2023, the Centers for Medicare & Medicaid Services (CMS) published a proposed rule, Ensuring Access to Medicaid Services (Access Rule): Improving Access to Medicaid Services, to promote health equity across the Medicaid program.52 If adopted, these rules would revise the “incident management systems” utilized in California’s I/DD service delivery system in the following ways:
  • Clarifying the definition of critical incidents. A minimum definition of critical incidents that includes: verbal, physical, sexual, psychological, or emotional abuse; neglect; exploitation including financial exploitation; misuse or unauthorized use of restrictive interventions or seclusion; a medication error resulting in a consultation with a poison control center (including telephone calls), an emergency department or urgent care visit, hospitalization, or death; or an unexplained or unanticipated death, including but not limited to a death caused by abuse or neglect.
  • Reliance on information sources other than provider reports to identify critical incidents. These sources include claims, Medicaid Fraud Control Units, adult and child protective services systems, and law enforcement, to the extent allowed under state law. California would also be required to share information about the status and resolution of investigations with other agencies, to the extent allowed under state law.
  • Timeframes and reporting requirements. Finally, the proposed rule sets timeframes for investigation, resolution and corrective actions related to critical incidents. It would also require California to report the results of an incident management system assessment every two years to show they meet the new requirements.
• As an initial recommendation, we suggest that California consider implementing the proposed rule without waiting until its formal adoption by CMS.
• Addressing the unique challenges facing individuals with I/DD and complex behavioral support needs across the life cycle: To date, the state has not considered the needs of individuals with I/DD and high behavioral support needs in a comprehensive fashion. Of course, since such individuals are likely to be disproportionately harmed by gaps in the “safety net,” they may benefit disproportionately from a general expansion in safety net resources. But merely shoring up the “safety net” is not a full solution for the individuals that are the focus of this report. There are some children and adults for whom conventional models of service delivery, such as congregate (group) homes and day programs, are neither safe nor therapeutic. It is critical for the state to adopt a more holistic, person-centered approach that considers the needs of this population throughout the entire life cycle, and to collect the data necessary to track success or failure of targeted policy interventions. For example, in some cases, these interventions may include modifications to integrated community-based settings – such as day programs, volunteer opportunities, or work sites – that facilitate the participation of individuals with high behavioral support needs. In other cases, these interventions may necessitate the creation of new, more individualized ways for individuals with I/DD and complex needs to participate regularly in integrated, community-based activities. As a first step, we recommend that the Master Plan on Developmental Disabilities include a working group on I/DD and Complex Needs, which would be tasked with gathering information on the needs of individuals who cannot be safely served in any licensed community care setting – even, in some instances, a CC or EBS home.

GLOSSARY

Adult residential facilities (ARF): non-medical facility that provides meals, supervision, personal care assistance, and other services to the residents. This is the licensing category from CCL that EBSHs fall under. 

Applied Behavior Analysis (ABA): a type of therapy for people on the autism spectrum designed to stop behaviors perceived as negative and teach social skills. 

Board Certified Behavior Analyst (BCBA): graduate-level certification in practicing ABA.  

Centers for Medicare and Medicaid Services (CMS): the federal agency that administers Medicaid, Medicare, Childrens Health Insurance Program, and the health insurance marketplace. 

Community Care Licensing Division (CCL) of the Department of Social Services (DSS): responsible for licensing both EBSH and CCH facilities. Their role includes ensuring that the facilities comply with relevant laws and enforcing the laws. 

Community Crisis Homes (CC homes): short-term residential homes that provide intensive treatment and stabilization services to children and adults with I/DD for up to eighteen months. 

Delayed egress: system where exits to a facility are locked for a short period of time upon attempting to exit, such as 15 seconds. This delay is coupled with an alarm system to alert staff that someone is exiting the facility.  

Department of Developmental Services (DDS): California department responsible for providing services to children and adults with developmental disabilities. 

Developmental Center: a type of large, congregate institution for people with I/DD. California’s developmental centers have largely closed or are in the process of closing, with the exception of Porterville Developmental Center. 

Direct Support Professional: general term used for someone who supports an individual with a disability with a variety of tasks, such as personal care, preparing food, medication management, or accessing the community. 

Emergency intervention plan (EIP): required plan for facility describing the circumstances and types of behaviors for which each potential type of emergency intervention may be used. 

Enhanced Behavioral Support Homes (EBS homes): long-term residential homes for up to four individuals that provide 24-hour nonmedical care to individuals with developmental disabilities who require enhanced behavioral supports, staffing, and supervision.  

Enhanced Supported Living Services (Enhanced SLS): model of service delivery that allows adults with high support needs to receive a wide range of services and live independently in the community. 

Health and safety waiver: process for regional centers and providers to get higher rates for certain services when a person’s health or safety is at risk. 

Home and community-based services (HCBS): services delivered to an individual in the home and community. They can include health services, such as medical care, and human services, such as employment supports, day services, and personal care. 

I/DD: acronym for intellectual and developmental disabilities, which includes diagnoses such as Down Syndrome, autism, and cerebral palsy.  

Individual Behavioral Supports Plan (IBSP): identifies and documents the behavior, intensive support and service needs of a consumer; details the strategies to be employed and services to be provided to address those needs; and includes the entity responsible for providing those services and timelines for when each identified individual behavior support will commence. 

Individual Behavior Supports Team (IBST): comprised of individuals who support the IBSP, including the consumer, regional center personnel, the facility administrator, the QBMP, the regional center clients’ rights advocate. 

Individual Emergency Intervention Plan (IEIP): a written plan addressing the prevention of injury and implementation of emergency intervention techniques [not prohibited by the EIP] that will be used with a specific client. 

Intermediate Care Facility (ICF): residential health facilities licensed by the California Department for Public Health that provide 24-hour care. Individuals with disabilities live in these facilities long-term.  

Lanterman Act: 1969 law that provides an entitlement to services for individuals with I/DD who meet certain criteria. 

Licensed Psychiatric Technicians (LPTs): postsecondary certification in working with individuals with psychiatric conditions, usually under the supervision of a graduate level mental health professional. 

Positive behavioral supports: a framework for behavior intervention designed to minimize the need for interventions that can undermine residents’ dignity and autonomy. 

Qualified Behavior Modification Professional (QBMP): an individual with two or more years of experience implementing behavior modification programs.  

Regional centers: network of 21 nonprofits throughout California that contract with DDS to provide service coordination and gatekeep services for Californians receiving Lanterman Act services. 

Registered Behavior technician (RBT): a paraprofessional certification in ABA. An RBT works under the supervision of a BCBA to administer ABA. 

Safety net: term used by DDS for the set of services and settings available to address those with more complex needs or more frequent crises with the DD system. 

Secured perimeter: A fence or gate around a facility that the residents do not have the information to lock and unlock, thus preventing residents from entering or exiting without staff’s presence and permission. 

Self-Determination Program (SDP): California’s self-directed waiver program for people with I/DD. Administered through a 1915(c) Medicaid waiver.  

Stabilization, Training, Assistance and Reintegration (STAR) homes: designed as short-term placements, with a maximum length of stay of 13 months. STAR homes are operated directly by DDS and require a court order for admission. 

Supported Living Services: set of services provided to adult consumers in their own homes, including assistance with daily activities and participation in community. These services are designed to support an individual’s preferences.  

Supported Single Child Residence (SSCR): a model for a single youth with high support needs who cannot safely live in the family home. 

Ukeru: a restraint-free crisis intervention model that emphasizes comfort rather than control and blocking pads as the measure of last resort. 

 

ORGANIZATIONAL AUTHORS

DISABILITY RIGHTS CALIFORNIA (DRC)

Disability Rights California defends, advances, and strengthens the rights and opportunities of people with disabilities. DRC works for a world where all disabled people have power and are treated with dignity and respect. In this world, people with disabilities are supported, valued, included in their communities, afforded the same opportunities as people without disabilities, and make their own decisions. Lead Authors: William Leiner and Sabrina Epstein from Disability Rights California’s Legal Advocacy Unit.

www.DisabilityRightsCA.org

THE STANFORD INTELLECTUAL AND DEVELOPMENTAL DISABILITIES LAW AND POLICY PROJECT (SIDDLAPP)

The mission of the SIDDLAPP, based at Stanford Law School, is to promote student engagement, stimulate rigorous policy analysis and academic research, and spearhead legal advocacy on the rights and welfare of individuals with I/DD. SIDDLAPP's faculty affiliates share the conviction that many problems in the I/DD law and policy arena are best approached from an interdisciplinary perspective that incorporates first-hand insights from the I/DD community.  Lead Author: Alison Morantz, Director.

www.Law.Stanford.edu/SIDDLAPP

ACKNOWLEDGMENTS

We gratefully acknowledge the contributions of Marco Andreas Scalera, Dean Joseph Alamy, and Annika Jordan Penzer, undergraduate research assistants who conducted much of the research on which this report relies, with the generous support of the Stanford Institute of Economic Policy Research (SIEPR). Carly Frieders, the student director of Stanford Law School’s Racial and Disability Justice Pro Bono Project, provided invaluable feedback on drafts of this report. Haosen He and Joaquin Muguerza, predoctoral fellows at Stanford Law School, provided critical technical assistance. Christine Parker and Vivian Haun from DRC, for their thought partnership and contributions to in-person visits and resident interviews. And Kaylee McCarty and Toby Rubino from DRC for production support. Finally, we wish to thank the many stakeholders and people served we interviewed, whose insights form the basis of this report. 

A NOTE ON LANGUAGE

We have chosen to use the terms “people with I/DD and complex support needs” and “people with I/DD and high behavioral support needs” interchangeably to refer to people with intellectual and developmental disabilities who need a high level of support in their daily life for a combination of physical, behavioral, mental health, communication, and/or social needs. Not every person who has complex support needs requires support in each of these areas. But most people who rely on safety net services have a need for high support in at least two of these areas.