Mental health disorders affect millions of adults and children in the United States and can range in severity. In 2016, an estimated 4.2 percent of the adult population—more than 10.4 million individuals—were considered to have a serious mental illness based on federal survey data. Individuals with mental illness may reside and receive care in a variety of settings, including inpatient institutional settings, such as public or private hospitals, other residential treatment facilities, or community-based settings. When originally established under the PAIMI Act, state PAIMI programs were required to investigate reports of potential abuse and neglect of individuals with significant mental illness residing in institutional facilities and to protect and advocate the rights of these individuals. Examples of institutional facilities covered under the PAIMI Act include hospitals, nursing homes, and correctional facilities. In 2000, the PAIMI Act was amended to allow certain PAIMI programs to also assist eligible individuals who live in community settings, including their own homes, although programs must still prioritize services for eligible individuals residing in institutional settings. For example, state PAIMI programs assist individuals with abuse, neglect, and rights violation cases in school settings. State PAIMI programs are administered by either state agencies or non- profit organizations that have been designated by the governor of each state to operate a protection and advocacy system. The state PAIMI programs are allotted federal grants through a formula that is based equally on (1) the population in each state, and (2) the population in each state weighted by its relative per capita income. In 2016, state PAIMI program grants ranged from $229,300 to $3,133,536. (See appendix I for allotment by program.) To receive a PAIMI grant, each protection and advocacy organization must submit an annual application, and the PAIMI programs they operate must meet applicable statutory and regulatory requirements. (See table 1.) Approved state PAIMI programs use their grants to protect and advocate for individual clients, such as investigating specific complaints. They may also conduct broader system-level protection and advocacy activities, such as facility monitoring, intended to benefit larger groups of individuals with significant mental illness. These systemic activities, as we refer to them in this report, include efforts to drive changes in policies and practices of the state’s mental health agency, treatment facilities, and other systems, such as school systems, that impact people with significant mental illness. (See table 2.) Each state PAIMI program, with input from the advisory council and governing authority, sets priority goals and short-term, measurable objectives and targets annually as performance benchmarks for the work it plans to conduct. Programs can also revise these benchmarks during the year to align with changing needs. For example, the types of individual cases programs accept and work on may depend on the types of complaints that are received, which may vary over time. SAMHSA administers the PAIMI grants and is responsible for oversight and monitoring of the state PAIMI programs. To oversee the state PAIMI programs, SAMHSA conducts both ongoing reviews of the annual application and performance information submitted by the programs, and periodic, in-depth reviews: Ongoing monitoring activities. PAIMI grant applications are effective for 4-year periods, but programs submit additional grant applications annually to update certain information, such as the program budget and goals. SAMHSA awards PAIMI grants based on criteria such as whether the grantee submitted a statement of annual program priorities, including quantifiable targets and measurable outcomes. In addition to the application, programs must submit key data annually in a program performance report. The performance report must describe a program’s individual and systemic activities, accomplishments, and expenditures during the most recent fiscal year and must include a section prepared by the advisory council. The performance report requires programs to report on both standard measures required of all programs and on progress towards the program-specific priority goals, objectives, and targets. SAMHSA reviews information submitted by the programs annually through grants applications and performance reports, including completing a review checklist and following up with programs with questions. Periodic monitoring. SAMHSA conducts four to five onsite monitoring reviews of state PAIMI programs each year, which officials told us means a given program would be reviewed approximately every 10 years. Programs are reviewed on a rotating basis, but some may be reviewed more frequently if concerns have been identified, according to officials. The onsite monitoring process, which includes an onsite visit and review of program documentation, is intended to monitor program compliance and provide guidance on improving program effectiveness. SAMHSA has procedures for the scope and time frame of the reviews. The eight selected state PAIMI programs reported favorably resolving a majority of individuals’ cases related to alleged abuse, neglect, or rights violations. In addition, these selected programs reported concluding a variety of systemic activities, with a significant focus on monitoring and addressing issues of abuse or neglect at facilities. Through their work with individuals and completion of systemic activities, the selected programs reported meeting a majority of their priority goals and objectives. Selected programs reported favorably resolving about 74 percent of individual cases related to alleged abuse, neglect, or rights violations in fiscal year 2016, on average (see table 3). The remaining 26 percent of cases were reported as withdrawn by the client, closed due to lack of merit, or were not resolved in the individual’s favor. Across the programs there was variation in the percentage of cases resolved favorably, with two of the selected programs reporting half, or less than half, of their cases resolved favorably, and one program reporting nearly 100 percent of cases closed favorably. SAMHSA officials and NDRN staff cited a number of factors that could contribute to the variation, including complexity of the complaint, variation in the programs’ criteria for accepting cases, program resources, or characteristics of the court or state mental health system. For example, SAMHSA officials told us that possible explanations for variation could include a program accepting particularly challenging cases, or a program obtaining additional funding from other nonfederal grants that could provide greater legal staff support in addressing complaints. All eight selected programs reported closing cases in each of the three categories of complaints: abuse, neglect, and rights violations during fiscal year 2016. Five of the eight programs reported that a majority of their cases were related to complaints about rights violations, which occurred in both facility- and community-based settings (see fig. 1). These complaints included denials of legal assistance or privacy rights, employment discrimination, or—the most frequently reported case complaint—failure to provide special education consistent with state requirements. Issues of abuse and neglect of individuals with mental illness were also common. The most frequent complaint reported by the eight selected programs related to neglect was a lack of discharge planning for release from a facility, and for alleged abuse, it was failure to provide appropriate mental health treatment. Program staff reported examples of how state PAIMI programs resolved cases related to abuse, neglect, and rights violations for individuals in institutions and the community: Program staff in California described a rights violation case of a young girl with a mental health disability who was eligible for special education services, but the district placed her in a restricted, segregated school setting where she was restrained multiple times. The program staff negotiated her move to a general education campus with classroom behavior support. The PAIMI program monitored her transition, including ensuring her inclusion in school activities, academic remediation, and social skill development. Program staff in Georgia reported that they were contacted by a woman in a hospital who was overmedicated such that they could not initially understand what she was saying. The staff worked with her hospital treatment team to adjust her medication and the woman became more articulate. In working to address her overmedication, the staff further discovered there were not appropriate discharge plans for her and so they worked to ensure that she was discharged into an appropriate facility. To address individual cases, selected programs reported using a variety of strategies, ranging from administrative actions to legal remedies. Programs reported that the most frequently utilized strategy (used 62 percent of the time in fiscal year 2016) was “short-term assistance”— time-limited advice or counseling, such as assisting a client with preparing a letter or making a phone call to resolve an issue. Selected programs reported using legal remedies about 5 percent of the time in fiscal year 2016. The eight selected programs conducted a range of systemic activities, and reported successfully concluding a total of 367 of these activities in fiscal year 2016 (see figure 2). Facility monitoring was reported as the most frequent systemic activity in fiscal year 2016, comprising about 71 percent of the total systemic activities concluded by the selected programs. The selected programs described a range of activities involving facility monitoring. For example, California reported that the program had an effort focused on monitoring the conditions at selected county jail systems and juvenile halls. As part of that work, the program reported that it released five public reports and worked with counties on policy improvements, such as reducing the use of pepper spray on youth. Another program, Louisiana, reported that staff used to conduct regular monitoring visits to a state’s psychiatric hospital and addressed patient complaints that they heard during these visits. However, with limited resources and other emerging urgent issues at other facilities, the program decided to cease the regular monitoring and now conducts as-needed visits to the hospital in response to specific complaints from the patients or staff. In addition to facility monitoring activities, other systemic activities conducted varied across the selected programs, reflecting differences in their resources and priorities. Some systemic activities—such as class action litigation—take significant time and resources to undertake, and program staff may consider various factors before beginning one. For example, program staff from Indiana told us the program filed a lawsuit alleging restrictive housing of prisoners with significant mental illness that involved 4 years of negotiations. In addition, program staff from Vermont told us after engaging in successful litigation against hospitals that helped reduce unnecessary force, isolation, and coercion tactics, the program re- prioritized and focused on other issues, such as helping individuals integrate into the community from facilities. However, the program recently noticed an increase in force, isolation, and coercion tactics and predicted another shift in focus to once more address those issues. Through their efforts to resolve individual cases and systemic activities, selected programs reported largely meeting the performance benchmarks—priority goals, objectives, and targets—they determine for themselves. For example, the Georgia program reported that to meet its fiscal year 2016 priority goal of protecting individuals with psychiatric disabilities in Georgia from abuse and neglect, its objective was to investigate and advocate to address allegations of abuse and neglect, including suspicious or unexplained deaths and inappropriate treatment or medication issues for people with psychiatric disabilities. The measurable target for this objective was to conduct 50 such investigations. In its performance report for the fiscal year, the program reported that it had completed 51 investigations of allegations of extensive abuse and neglect during the performance year. Overall, the selected programs reported meeting more than 95 percent of their priority goals in fiscal year 2016. While selected programs varied in their priority goals, all had a goal that focused on protecting individuals from abuse, neglect, and rights violations. (See Appendix II for more information about the types of priority goals set by the selected programs.) When objectives were not met, the programs reported, for instance, focusing on other priorities or that an activity was still ongoing and could not be included as part of their performance for the year. Although the eight selected PAIMI programs reported that they largely met their goals, they also reported several overarching challenges to their efforts to do so, such as limited resources, lack of access authority, or delays in access (e.g., to documents, records, or institutions). For instance, the selected programs collectively reported that 617 PAIMI- eligible clients were not served within 30 days due to insufficient funding in fiscal year 2016. Additionally, five selected programs reported delays in access to records. For example, Vermont program staff reported delays in receiving records related to the status of prisoner grievances or medical records, and Texas program staff reported delays and use of significant attorney resources to address facilities that challenge their ability to access records or premises. SAMHSA has controls in place for monitoring the PAIMI programs’ compliance with statutory and regulatory requirements through its ongoing and periodic in-depth monitoring activities. We found evidence that SAMHSA had identified and resolved a variety of compliance issues through these activities. On an annual basis, SAMHSA monitors compliance with statutory and regulatory program requirements by reviewing information reported by the programs through the application and program performance report. (See table 4.) SAMHSA’s project officers review and approve the applications and performance reports submitted by the state PAIMI programs using a checklist developed by the agency that prompts them to record specific information, such as whether there are vacant advisory council seats. Not all areas of compliance are covered by the checklist; however, SAMHSA officials told us that the entire application and performance report are reviewed, and that a project officer’s approval signature on a checklist indicates that potential issues observed during a review have been resolved satisfactorily. In our review of fiscal year 2015 and 2016 documentation, we found evidence that the application and performance report review process helped identify and resolve a range of potential compliance issues. For example, SAMHSA followed up with one program in which the advisory council had failed to meet the threshold of 60 percent of its membership being individuals who have received or are receiving mental health services, or are family members of such individuals. Failing to meet this threshold could raise concerns about whether a program is sufficiently engaging individuals and family members affected by mental illness as required by regulation. In this instance, SAMHSA requested a plan of action to recruit and maintain members to meet the threshold, which the program provided along with updated information that they had successfully recruited an additional member that put the council make-up over the threshold. In another example, SAMHSA followed up with one program that had reported not meeting 3 of 6 objectives and requested a plan of action for reducing the number of unmet objectives. The program subsequently provided information that it had incorrectly categorized some objectives they had met as “not met.” (See table 5.) In addition to the annual application and performance report reviews, SAMHSA officials told us that they use monthly conversations with other federal agencies, referred to as federal partners, to help them identify potential compliance issues. These federal partners oversee federal grants for other populations of people with disabilities made to the protection and advocacy systems that administer the PAIMI program. SAMHSA officials told us that coordination with these federal partners helped identify risks in at least two of our selected programs, Puerto Rico and Oklahoma. For example, one of the federal partners conducted an onsite monitoring visit to Puerto Rico and found several issues with its protection and advocacy system, such as inadequately trained staff and conflicts of interest arising from a lack of independence from the governor’s office. Puerto Rico’s protection and advocacy system failed to develop an adequate corrective action plan to address the federal partner’s findings, leading the federal partner to place the system in restricted—that is, high-risk—status. According to SAMHSA officials, these actions led them to more closely monitor Puerto Rico’s PAIMI program, resulting in the identification of the protection and advocacy system’s failure to comply sufficiently with PAIMI program requirements. For example, SAMHSA found that Puerto Rico’s PAIMI program did not have the capacity to protect and advocate for individuals with mental illness, as required by statute, because they had an insufficient number of attorneys. Furthermore, the federal partner that originally placed Puerto Rico’s protection and advocacy system in restricted status requested that SAMHSA do so as well. As a result, SAMHSA also placed the Puerto Rico PAIMI program in restricted status. In addition to its ongoing monitoring, SAMHSA has procedures to oversee state PAIMI program compliance during its periodic onsite monitoring reviews. When SAMHSA conducts an onsite monitoring review, its procedures specify that officials are to interview program staff, governing board members, and advisory council members; as well as review a sample of case record files and other documentation of program activities. The state PAIMI program is also to submit a detailed set of documentation to support the program’s compliance with statutory and regulatory requirements. Agency officials are to review this information and report back to the programs on any compliance issues or recommendations to improve program processes. In our review of fiscal year 2015 and 2016 documentation for the nine onsite monitoring reviews SAMHSA conducted, we found evidence that this process helped identify and resolve a range of potential compliance issues. For example, SAMHSA found that one program’s bylaws could be misinterpreted to permit lobbying for legislation for PAIMI-eligible individuals using PAIMI funding, when federal law prohibits grants programs from using federal funds to engage in such activity. As a result, the program’s governing board reviewed and modified the bylaws to clearly indicate that PAIMI funds are not to be used for lobbying. As another example, SAMHSA found that one program did not have sufficient documentation to support that the advisory council chair was an individual who had received or was receiving mental health services, or a family member of such an individual, as required by regulations. As a result, the program revised its practice to include having the advisory council chair verify in writing that he or she meets the criteria for serving in the position. (See table 6.) We identified two weaknesses that could be limiting SAMHSA’s oversight of program effectiveness. First, SAMHSA’s PAIMI program monitoring did not consistently record changes to program priority goals, objectives, and targets—collectively, “benchmarks”—made during a performance year, and the agency did not have procedures for examining such changes over time. Second, the agency did not provide timely information to programs on identified deficiencies from onsite monitoring. As of March 2018, SAMHSA was in the process of implementing new processes for its oversight of state PAIMI programs that officials believe will streamline the agency’s monitoring activities. However, these changes may not fully address the weaknesses we identified. We found that SAMHSA did not always record changes programs made to their performance benchmarks and did not have procedures for examining benchmark changes over time. According to federal internal control standards, an agency should evaluate the results of its monitoring—in this case, the information collected regarding benchmark modifications—to determine program performance. In our review of SAMHSA’s oversight of 10 programs for fiscal years 2015 and 2016, we found that SAMHSA did not consistently record program modifications to performance benchmarks. Specifically, we found that four programs appeared to have modified their performance benchmarks during the year—in some cases upward when results exceeded original targets, and in other cases downward when results were lower than original targets. However, these changes were not recorded by SAMHSA reviewers in the review checklists. For instance, one program revised 17 of its 21 targets to closely match the program’s actual results, but these changes were not recorded in the area of the review checklist that prompts the project officer to note if such changes were made. According to SAMHSA officials, in fiscal year 2017, SAMHSA transitioned from paper forms to a web-based system for submission and review of applications and performance reports. Officials told us that under the new system, programs will be required to consult with SAMHSA officials about and submit modifications to performance benchmarks through the system. The system will record and display both the original priority goals, objectives, and targets as approved at the time of the application, as well as any modifications a program submits throughout the year. The system will also record that information over time, providing the ability to review and track program modifications to benchmarks over multiple years. SAMHSA’s new system should improve recording of benchmark changes, however, SAMHSA lacks procedures for examining such changes across years to assess whether the changes could indicate larger performance issues. SAMHSA officials acknowledged that they did not have specific procedures in place directing project officers to examine changes to performance benchmarks across multiple years, but said that other relevant procedures were in place. For example, officials noted that programs are not able to modify benchmarks without approval by SAMHSA project officers. However, without implementing procedures aimed specifically at examining trends in benchmark modifications across years, SAMHSA lacks assurances that its project officers will consistently examine whether a particular program is regularly making changes to benchmarks that may be indicative of a potential performance problem, such as revising its targets downwards over multiple years. We found that SAMHSA generally failed to meet its timelines for producing and providing onsite monitoring review reports to the state PAIMI programs under review during fiscal years 2015 and 2016. This inability to produce and provide onsite monitoring reports to PAIMI programs in a timely manner is inconsistent with SAMHSA’s internal requirements and with federal internal control standards regarding evaluating issues and remediating deficiencies on a timely basis. Specifically, for onsite monitoring reviews, SAMHSA’s procedures specify the agency is to provide an initial report to the reviewed program within 150 days of the onsite visit. However, for eight of the nine monitoring review reports we reviewed for fiscal years 2015 and 2016, SAMHSA provided the report more than a year after the visit. One program that had just received its report at the time of our review told us that it was difficult to plan the necessary changes to its work without an official report with findings and recommendations to help guide them in restructuring their operations. Program staff said they had moved ahead and made some changes but were uncertain whether those changes would be deemed sufficient because of the lack of feedback from the agency. SAMHSA officials told us that they may have missed some deadlines as a result of competing priorities and restricted resources—for example, recently only two of four PAIMI project officer positions have been occupied. Officials reported that the agency was taking steps to streamline the process to make it more efficient and to bring on more staff resources. The officials said that in 2018 SAMHSA planned to shift responsibility for the project officers’ portion of the onsite reviews to a dedicated onsite monitor, which they hoped would expedite the review process. In addition, the agency had taken steps to streamline its onsite monitoring review process, such as by revising and standardizing its reporting template. There are uncertainties with regard to how effective these changes will be in increasing timeliness. For example, the planned efficiencies target some, but not all, of the key components of the reviews. In particular, SAMHSA officials told us that these review process changes do not pertain to the portion of the onsite review that focuses on state PAIMI program compliance with applicable fiscal requirements. Officials noted that the SAMHSA office that conducts the fiscal portion of the review has had staff shortages for the past 16 months and is not able to operate within normal time frames for completing this portion of the report. Without meeting its deadlines for completing its review and providing timely, detailed information and feedback to PAIMI programs, SAMHSA cannot ensure that identified issues are resolved in a timely manner, thus potentially endangering the effectiveness of the programs. Individuals with mental illness can face abuse, neglect, and rights violations in both institutional and community treatment settings, including their own homes. The protection and advocacy services provided by state PAIMI programs play an important role in reducing these serious issues for this vulnerable population. Therefore, it is important to monitor how effective the programs are in addressing such issues. SAMHSA has a number of procedures in place to monitor program compliance with statutory and regulatory requirements, which enable the agency to identify and resolve potential issues with program compliance, and it is taking steps to streamline and improve its compliance oversight. At the same time, the agency’s processes for oversight of program effectiveness could be improved, such as by examining trends in mid-performance changes programs make to their priority goals, objectives, and targets across multiple years. Without such monitoring, SAMHSA may not recognize a pattern of changes that signal larger concerns about that program’s effectiveness. Finally, SAMHSA has not been timely in completing its onsite monitoring reviews or providing the results of these reviews to the programs. Although SAMHSA has plans to make reviews more efficient and to add resources, it is unclear to what extent these steps will resolve the lack of timeliness. We are making the following two recommendations to SAMHSA: The Assistant Secretary for Mental Health and Substance Use should establish procedures to better ensure that mid-performance changes to program priority goals, objectives, and targets are examined across multiple years. (Recommendation 1) The Assistant Secretary for Mental Health and Substance Use should take steps, including the steps it has planned, to ensure onsite reviews are completed and findings are provided to programs on a timely basis. (Recommendation 2) We provided a draft of this report to HHS for comment. In its written comments, HHS concurred with both of our recommendations and indicated that it will examine ways to implement them. HHS’s comments are reprinted in appendix III. HHS also provided technical comments, which we incorporated as appropriate. We are sending copies of this report to the appropriate congressional committees, the Secretary of Health and Human Services, and other interested parties. In addition, the report is available at no charge on the GAO website at http://www.gao.gov. If you or your staff have any questions about this report, please contact me at (202) 512-7114 or at iritanik@gao.gov. Contact points for our Offices of Congressional Relations and Public Affairs may be found on the last page of this report. GAO staff who made key contributions to this report are listed in appendix IV. State Protection and Advocacy for Individuals with Mental Illness (PAIMI) programs determine their priority goals each fiscal year to prioritize the work they hope to accomplish. Our analysis of the priority goals reported in the annual program performance reports by eight selected state PAIMI programs found that all programs had at least one priority goal focused on Protection and Civil Rights in fiscal year 2016 (see fig. 3). Access/Discrimination was the next most frequently set priority goal category—with seven of the eight programs establishing these goals. We also reviewed program goal categories from fiscal year 2015 and identified few significant differences between 2015 and 2016. Eight priority goal categories emerged from our analysis: Access/Discrimination: This category refers to issues broadly related to access to services or benefits, and reduction of discrimination, e.g., advocating for access to legal services or elimination of barriers to housing, employment, and education services. Community Integration: This category refers to issues of integrating the individual into community facilities or ensuring they can be independent outside of a facility. Education: This category refers to specific issues related to access or equality in education services. Employment: This category refers to specific issues related to access to employment. Health Care Services: This category refers to specific issues related to access to health care services within the community or state. Housing: This category refers to specific issues related to access to housing. Information/Outreach: This category refers to activities related to distributing publications or performing outreach to individuals. Protection and Civil Rights: This category refers to issues broadly related to rights violations and protection from restraint, seclusion, or other abuse or neglect. In addition to the contact named above, Susan Barnidge, Assistant Director; Hannah Marston Minter, Analyst-in-Charge; Joanna Wu Gerhardt; and Emily Beller Holland made key contributions to this report. Also contributing were Jennie Apter, Muriel Brown, and Emily Wilson.

Summary: PAIMI grant awards, established by Congress in 1986 and totaling $36 million in 2016, are administered by SAMHSA to support state protection and advocacy programs. PAIMI programs protect and advocate for the rights of individuals with significant mental illness by investigating reports of incidents of abuse and neglect of such individuals in facilities such as hospitals, and in the community, among other activities. The 21st Century Cures Act included a provision for GAO to review the PAIMI programs and their compliance with federal statutory and regulatory requirements. This report examines (1) the outcomes reported by PAIMI programs in selected states, and (2) SAMHSA's oversight of state PAIMI programs, including their compliance with federal requirements. GAO reviewed FY 2015 and 2016 PAIMI program documentation for eight of 57 programs selected for variation in funding amount, geographic location, and other factors. GAO also reviewed relevant SAMHSA policies and procedures and assessed them against federal standards for internal control. The eight selected state Protection and Advocacy for Individuals with Mental Illness (PAIMI) programs GAO reviewed reported a range of positive outcomes from their work on behalf of individuals with mental illness. For example, in fiscal year (FY) 2016, the selected programs reported resolving in the individual's favor 1,772 out of 2,390 cases (74 percent) related to complaints of alleged abuse, neglect, and rights violations. The remaining cases were reported as withdrawn by the client, closed due to lack of merit, or not resolved in the individual's favor. These programs also reported concluding a variety of broader, system-level activities—referred to as systemic activities—intended to benefit groups of individuals with mental illness. These systemic activities resulted in, for example, changes to procedures in mental health institutions and correctional facilities. Source: GAO analysis of 2016 Substance Abuse and Mental Health Services Administration data. | GAO-18-450 The Substance Abuse and Mental Health Services Administration (SAMHSA), which oversees the state PAIMI programs, has a variety of procedures in place to monitor performance and compliance. However, two areas warrant additional attention, as follows: SAMHSA has not consistently examined changes to performance benchmarks—the goals, objectives, and targets that PAIMI programs set annually for their planned work. Programs are permitted to modify these benchmarks, and GAO found that four had done so. A new SAMHSA system implemented in 2017 could improve recording of benchmark changes, but SAMHSA lacks procedures to examine changes across years, which could help identify performance concerns. SAMHSA often failed to complete its periodic, in-depth reviews of programs and to provide findings of identified deficiencies to PAIMI programs on a timely basis. SAMHSA has plans to improve the efficiency of its review process. However, it is unclear the extent to which these plans will resolve the timeliness issues, which could delay resolution of any issues found in the reviews. GAO recommends that SAMHSA take steps to ensure that changes to performance benchmarks are examined over time, and to ensure onsite reviews are completed—and findings are provided to state programs—in a timely manner. The Department of Health and Human Services concurred with GAO's recommendations.