Federal census data show that an estimated 12.3 million Americans age 6 years and older needed LTSS in 2010. LTSS are a distinct set of services that are critical elements of support for people with functional limitations due to health conditions. Individuals’ needs for LTSS are often measured in terms of their need for assistance with activities of daily living (ADL) and instrumental activities of daily living (IADL). ADLs include bathing, dressing, eating, getting into and out of chairs, walking, and using the toilet; IADLs include using the telephone, doing housework, preparing meals, shopping, and managing money. According to the Congressional Research Service, U.S. expenditures for LTSS in 2014 totaled an estimated $337 billion, representing 13 percent of personal health expenditures. Nearly two-thirds of LTSS spending is financed by the federal and state governments, primarily through Medicaid and Medicare. Medicaid is the largest payer of LTSS, accounting for 42 percent of LTSS spending followed by Medicare, which pays an additional 22 percent. Private funding (e.g., out-of-pocket spending and private insurance) accounts for less than one-third of LTSS spending. A number of job titles are used in the long-term care industry to refer to direct care workers. Often, workers’ job titles vary by state or by the setting where they provide care. For example, direct care workers as a group are also referred to as paraprofessional workers, direct support professionals, or direct service workers. Specific job titles for direct care workers include home care aides, personal assistants, home attendants, homemakers, companions, personal care staff, and resident care aides, among others. For this report, we examined data for the four occupations often used to categorize direct care workers: Home health aides monitor individuals’ health statuses; provide routine individualized health care, such as changing bandages, dressing wounds, and applying topical medications; and assist with ADLs. Home health aides are generally hired through a home health agency and assist individuals in their homes or in residential care facilities. Psychiatric aides, under the direction of nursing and medical staff, assist people who are mentally impaired or intellectually and developmentally disabled with ADLs, educational and recreational activities, or accompany them to and from medical examinations and treatments. They may also be referred to as mental health orderlies, psychiatric orderlies, or psychiatric nursing aides. Psychiatric aides in long-term care industries are primarily employed in residential care facilities for the intellectually and developmentally disabled, residential mental health and substance abuse facilities, and state facilities. Nursing assistants, also known as nurse aides, provide basic patient care under the direction of nursing staff. They also perform clinical tasks, such as taking blood pressure readings and performing range- of-motion exercises, in addition to assisting with ADLs and IADLs. Nursing assistants work primarily in nursing home and residential care facilities. Personal care aides assist individuals with ADLs, not including medical care, at a person’s home or in a residential care facility. Personal care aides are often employed through an agency or hired directly by an individual to provide assistance with both ADLs and IADLs. While many direct care workers are employed by traditional business establishments such as nursing homes and home health agencies, some work directly for the individuals they care for or their families under a variety of arrangements. Often referred to as independent providers, these workers are believed to comprise a large and growing portion of the direct care workforce, although their exact numbers are unknown. Independent providers can be employed by individuals under government-funded programs, such as Medicaid, that allow individuals to hire their own workers, including family members; or hired by households under private arrangements; or sometimes hired by both, even for the same client. Most private arrangements are thought to be unreported, constituting what some refer to as a “gray market” of providers. Federal law requires states to certify nurse aides and home health aides who provide LTSS for nursing home facilities and home health agencies that accept Medicaid and Medicare reimbursement. A state-approved nurse aide or home health aide certification program must require a minimum of 75 hours of training, including at least 16 hours of supervised practical training. While federal law also requires states to maintain a registry of nurse aides who are certified, no such requirement exists for other direct care workers. The goal of workforce planning, the systematic process of identifying and addressing the gaps between the current workforce and the workforce needs of the future, is to ensure that an adequate supply of appropriately trained workers is available to meet demand—either for a particular employer, position, or industry. Workforce analysis requires an understanding of the characteristics, capability, and distribution of the current workforce to model the workforce and project how it may change in the future. In the last 15 years, a number of reports have highlighted the need for direct care workforce planning and called for more data about direct care workers. In addition to the Congressional Commission on Long-Term Care report, HRSA reported in 2004 that informed workforce planning is needed to document the extent of shortages in direct care occupations so that states and institutions can address them and assess the impact of present and future initiatives to balance supply and demand. A 2009 study funded by CMS reported that information about the long-term direct care workforce is essential for understanding workforce issues and developing appropriate policy responses to plan for the future workforce. The study also recommended that states collect a minimum dataset about their direct care workforces that includes three elements: (1) the number of direct care workers; (2) workers’ compensation (wages and benefits); and (3) workforce stability measures (attrition and vacancy rates). One of HRSA’s primary goals is strengthening the health workforce. In its fiscal year 2016-2018 Strategic Plan, HRSA specifically aims to strengthen the health workforce by developing and employing approaches to monitor, forecast, and meet long-term health workforce needs as well as providing policymakers, researchers, and the public with information on health workforce trends, supply, demand, and policy issues. Within HRSA, the National Center for Health Workforce Analysis helps build knowledge about the nation’s health workforce through data development, projections of supply and demand, and serving as a focal point for health workforce data. Federal data from the Census Bureau’s ACS show that in 2014, the direct care workforce that provided LTSS totaled an estimated 3.27 million workers, about 20 percent of the total U.S. health workforce that year. Personal care aides made up over 46 percent of all direct care workers, and in the last decade their numbers have more than doubled. Over the last decade, the estimated total number of direct care workers increased over 44 percent, in part due to growth in the number of personal care aides. Our analysis of projections from the BLS shows that the number of jobs for direct care workers providing LTSS is expected to increase to 4.56 million in 2024. At the same time, growth in the number of women between the ages of 25 and 64, who comprise the vast majority of direct care workers, is expected to remain flat through 2024. While the ACS provides information on the number and characteristics of direct care workers, these data are subject to limitations, which affect their usefulness for workforce planning. While the ACS separately identifies personal care aides, it combines data for home health aides, psychiatric aides, and nursing assistants into one occupational grouping, so separate estimates for these occupations are unavailable. Another limitation is that the number of these workers employed as independent providers is unclear, because the ACS data do not separately identify independent providers from other direct care workers. In addition, since the ACS inquires only about the job where individuals work the most hours, direct care workers who provided LTSS part-time as a secondary job are not included in these data. The ACS data also include individuals identified as direct care workers who have not been employed in the last 12 months but were employed as direct care workers in the previous 5 years. Finally, the ACS data are self-reported, so individuals choosing not to identify themselves as direct care workers are not picked up in the data. Federal data from the BLS also provide information on direct care workers’ compensation, including wages and benefits. In 2015, direct care workers in long-term care industries received an average hourly wage of $11.21, which is in the bottom quarter of all U.S. wages, according to BLS’s Occupational Employment Statistics. The average hourly wage in the United States across all occupations was $23.23, more than double direct care workers’ average wage. Personal care aides in long-term care industries had the lowest hourly wage of direct care workers at $10.42, while psychiatric aides had the highest at $12.62. According to data from the ACS, 48.8 percent of personal care workers and 37.6 percent of nursing, psychiatric, and home health aides worked part-time (less than 35 hours per week) in 2014. In addition, data from BLS’s National Compensation Survey showed that direct care workers’ access to employment benefits varied depending on whether they were employed full-time or part-time. Over 90 percent of full-time direct care workers received paid vacation, paid holidays, and health insurance in 2015; fewer workers were provided paid sick leave, life insurance, and retirement benefits. In contrast, less than half of part-time direct care workers had access to any of these benefits. BLS data on wages and benefits also have limitations. According to BLS officials, due to the National Compensation Survey’s small sample size, benefits data are limited to direct care workers in all industries and cannot be broken down by occupation or specific industry. Also, data on both wages and benefits exclude some direct care workers working as independent providers. Both the Occupational Employment Statistics and the National Compensation Survey collect information from employer- based surveys that do not capture individuals employed by private households, such as independent providers working under private arrangements. The data may include some independent providers funded by government programs, such as Medicaid; however, the extent to which these providers are included in the data depends on their employment relationship with the government program, which can vary. (See app. II for more detailed information about direct care workers’ numbers, demographics, wages, and other characteristics.) We were unable to identify federal data sources on workforce stability measures, which are often used for workforce planning. BLS conducts the Job Openings and Labor Turnover Survey, which provides data on job openings and separations for broad industries, such as all health care and social assistance establishments. However, due to the small sample size, this survey does not determine attrition for specific occupations, such as personal care aides. BLS officials informed us that filling the data gaps of attrition rates at the occupational level would require major changes in their surveys and would be costly to implement. The four states we reviewed (Arkansas, Maine, Minnesota, and Oregon) each conducted one-time studies to obtain more detailed information about direct care workers who provide LTSS in those states. Three of the states (Arkansas, Maine, and Minnesota) collected data on direct care workers in 2012 as part of a CMS initiative called the National Balancing Indicators Project (NBIP). The seven states that participated in the NBIP collected data using two standardized surveys—one for employer organizations and one for independent providers—designed by CMS’s National Direct Service Workforce Resource Center, in coordination with the participating states. The surveys were designed to collect data about the number of workers, their hours, worker compensation, and measures of workforce stability. Each survey incorporated these required variables, and states included additional variables at their discretion. See table 1. The fourth state we reviewed (Oregon) collected data in 2014 on direct care worker compensation, attrition, and the relationship between workers’ wages and Medicaid payment rates over time. Oregon’s survey of Medicaid-participating LTSS providers also captured many of the same variables included in NBIP’s employer survey. Both NBIP’s and Oregon’s surveys asked about direct care workers as a group as opposed to asking about each separate direct care worker occupation. The four states obtained data that federal sources have not, such as information describing the characteristics of independent providers and attrition rates. We obtained summary results from independent provider surveys for Maine and Minnesota, which showed that most responding independent providers worked for a family member, a neighbor, a friend, or someone else they knew. The data also showed large differences between the two states in the education, income levels, and hourly wages of independent providers. Appendix III provides more detailed information on the NBIP and the survey results for independent providers. Arkansas, Maine, and Oregon also surveyed employer organizations providing LTSS to calculate attrition. In Arkansas and Maine, the average attrition rate across all employment settings was close to 30 percent, and in Oregon, the rate was about 64 percent, although rates varied widely across settings in all states. The NBIP states and Oregon calculated attrition differently, which could explain in part why Oregon’s attrition rate was more than twice the rates of Arkansas and Maine; research on attrition in nursing homes has shown that definitions of attrition can vary substantially, making it difficult to make comparisons across studies. Officials in all four states said that the data they collected provided helpful information about direct care workers. Despite the usefulness of the survey data, none of these states continued data collection after the study ended; some state officials noted the significant resources required to collect data on this workforce. Each of the three NBIP states received $200,000 to conduct their workforce studies while Oregon spent about $299,800, according to a state official. Officials from the NBIP states said they appreciated the opportunity to use a standardized survey, emphasizing the value of being able to make cross-state comparisons. The National Direct Service Workforce Resource Center, which carried out the NBIP study, had planned to disseminate a data collection toolkit to states for collection of information on direct care workers. The toolkit was to include guidance about data collection methods and versions of the employer and independent provider survey instruments. Although the toolkit was completed by the end of the NBIP contract, CMS’s contractor for the study said that the National Direct Service Workforce Resource Center was not funded to disseminate the toolkit or help states use it, and it was not widely disseminated or posted on CMS’s website. We identified two reports that HRSA issued in the last 12 years that have provided information about the direct care workforce. First, in 2004, HRSA issued a report on workforce shortages of nursing assistants and home health aides and the associated data needs for workforce planning. The report provided a comprehensive assessment of data needed for program and policy development as well as the extent and limitations of available data, including eight federal data sets; 45 state registries of certified nursing assistants; and 4 states’ data collection activities. The report concluded that informed workforce planning was needed to document the extent of shortages and to assist states and other stakeholders in addressing them. The report also included options for making existing data sources more useful, such as expanding state registries of certified nursing assistants to include information on other direct care workers. Second, in 2013, HRSA’s National Center for Health Workforce Analysis issued a chart book summarizing national data on different health occupations. Personal care aides and the occupational grouping titled nursing, psychiatric, and home health aides were among the 35 occupations included in this report. Using data from the ACS for 2008 through 2010, the chart book estimated the number of workers for each occupation and presented figures showing their geographic distribution, workplace settings, and demographic characteristics. HRSA has also supported academic institutions in conducting research and providing information about health workers, including long-term care workers. HRSA provides funds to seven Health Workforce Research Centers at universities to conduct research and help federal, state, and local decision makers better understand health workforce needs. One of the research centers located at the University of California, San Francisco focuses on the long-term care workforce. This center has examined several topics related to direct care workers, such as training requirements for personal care aides across states; long-term care service use trends and workforce demand predictions; and the entry and exit of workers in long-term care. In addition, HRSA has taken part in the Office of Management and Budget’s Standard Occupational Classification Policy Committee, which works to ensure that the occupational classifications used by the government are updated to reflect changes in the economy and nature of work. The Policy Committee, which comprises representatives of several federal agencies, formulates recommendations for revisions to occupational titles and definitions. The Standard Occupational Classification system has been revised several times to reflect changes in the economy and how work is accomplished; the next scheduled revision is 2018. HRSA officials reported that the occupational definitions for home health aides, nursing assistants, and personal care aides are being considered for modification in the 2018 revision to more closely reflect the tasks workers perform. HRSA’s strategic plan includes a goal to enhance focus on workforce assessment and policy analysis through developing and employing approaches to monitoring, forecasting, and meeting long-term health workforce needs. According to HRSA’s website, the National Center for Health Workforce Analysis conducts projections of the supply of and demand for the U.S. health workforce and works to overcome inherent data challenges in making these projections by improving available data; HRSA has not yet done this for direct care workers. Previously, the National Center for Health Workforce Analysis developed projections of the supply of and demand for workers in a number of other health occupations, including, but not limited to, chiropractors, podiatrists, respiratory therapists, dietitians, pharmacists, and health technicians. Not having such projections for direct care workers is significant because the Center’s projections for health professions by discipline help set the national agenda for the health workforce and inform HRSA and HHS programs. According to HRSA officials, HRSA utilizes the information provided in the projection reports to assess changes in the national workforce, and these reports guide the strategic direction of both HRSA and HHS programs. Officials further explained that HRSA sends the workforce projections to HHS agencies to initiate awareness and visibility of workforce issues and to inform budget requests, program planning, and performance management activities. These activities, undertaken as part of the strategic planning and budget development processes, are HHS’s main health workforce planning activities. HRSA officials stated that the agency has not developed projections of the supply of direct care workers, because the available data are insufficient. To project the direct care workforce, HRSA officials stated that they would need basic, uniform, aggregate data that counts the number of workers, but no federal, state, or external body collects data specifically about these workers across all settings. While HRSA considers projecting supply to be problematic, officials told us that projecting demand for direct care workers is possible. However, they have no specific plans to project demand for this workforce, at this time. In spite of finding the data insufficient, HRSA has also not developed methods to overcome data limitations in projecting the direct care workforce. HRSA officials told us that because of its large sample size, the ACS is currently the best source of information about health workers and provides reliable estimates of the direct care workforce, but noted that there are significant limitations. Officials stated that they can use ACS data to estimate the supply of personal care aides, but that it is not possible to develop estimates for the other individual direct care occupations because they are combined into one occupational group— nursing, psychiatric, and home health aides. We asked HRSA officials whether the occupational grouping in the ACS data could be disaggregated to estimate the supply of each direct care occupation separately. Officials responded that when analyzing data, they use the standard data set as supplied by the data sponsor, and they had not asked the Census Bureau whether further disaggregation or special data collection were possible now or in the future. We asked HRSA officials further whether the supply of home health aides, psychiatric aides, and nursing assistants could be estimated from ACS data using data from other sources. For instance, BLS estimates the number of workers in each direct care occupation for its National Employment Matrix by determining the proportion of that occupation that is found in one survey and applying these proportions to data from another survey. When we suggested that similar methods could help develop direct care worker supply estimates from ACS data, HRSA officials responded that they prefer to use direct data rather than making assumptions to derive estimates. Although HRSA officials said they prefer to use primary data in making projections, the agency has not been proactive in identifying and improving primary data about the direct care workforce. It has been over 10 years since HRSA last produced a comprehensive assessment of the available data on direct care workers, despite the advent of new data sources since that time; some of these new data sources were unknown to HRSA officials. For example, at the time we interviewed HRSA officials, they were unaware that CMS planned to begin collecting staffing data from nursing homes that participate in Medicare or Medicaid beginning July 1, 2016, pursuant to a requirement in the Patient Protection and Affordable Care Act. These new data will include information on direct care worker attrition, tenure, and the number of hours of care per resident per day that could potentially fill current data gaps. In addition, HRSA officials were unaware that CMS’s NBIP initiative had developed a set of standard survey instruments that were used by seven states to collect direct care workforce data. HRSA officials told us that state-collected data are often not uniform from one state to another and this limits the data’s usefulness. However, HRSA noted in its 2004 report that data collected by states could potentially fill existing data gaps and the NBIP initiative represents a significant effort to develop and standardize state data. Given the limitations with direct care workforce data, new approaches for overcoming these limitations would help improve projections and monitoring of this critical workforce. Developing new approaches would be consistent with HRSA’s strategic goal to enhance workforce assessment and analysis. But HRSA has not taken actions to project supply and demand or to overcome the data limitations it cites as challenges to doing so. Without HRSA developing projections of supply and demand, the information on direct care workers will remain limited, and opportunities may be missed to improve the information upon which other HHS agencies and policymakers rely to guide their workforce development efforts. Direct care workers are responsible for providing the majority of paid hands-on care to millions of elderly and individuals with disabilities needing LTSS. However, reported high attrition rates and problems recruiting and retaining these workers, along with the anticipated rise in the elderly population, have fueled concerns about shortages. The importance of the direct care workforce and the potential for shortages underscores the need for informed workforce planning. The success of such planning will depend in part on having current and reliable estimates of the direct care workforce, and future projections of the supply of and demand for direct care workers. While existing federal data sources provide a broad picture of the direct care workforce, gaps exist, such as the lack of information on independent providers and attrition. Unless HRSA takes actions to overcome data limitations in order to make projections of supply and demand, the ability of policymakers and other stakeholders to develop appropriate workforce strategies to ensure a sufficient number of qualified direct care workers will continue to be hampered. To improve available data about the direct care workforce, we recommend that the Acting Administrator of the Health Resources and Services Administration take steps to produce projections of direct care workforce supply and demand and develop methods to address data limitations in order to do so. We provided a draft of this report to HHS and the Department of Labor for review and received written comments from HHS, which are reprinted in appendix IV. HHS and the Department of Labor also provided technical comments, which we incorporated as appropriate. In its comments, HHS concurred with our recommendation that HRSA take steps to develop projections of direct care workforce supply and demand, stating that developing such projections is timely and important. Congruent with the message of our report, HHS stated that given the growth in the aging population and the challenges in recruiting and retaining direct care workers, having clear information on this workforce is critical for workforce planning. To that end, the department stated that HRSA is developing demand projections for certain direct care workforce occupations and will explore ways to develop additional information needed to provide comprehensive workforce trends. Given the challenges with the underlying data on the direct care workforce, HRSA will likely need to develop methods to overcome data limitations to produce this information. As agreed with your office, unless you publicly announce the contents of this report earlier, we plan no further distribution until 30 days from the report date. At that time, we will send copies to the Secretaries of Health and Human Services and Labor and appropriate congressional committees. In addition, the report will be 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 kingk@gao.gov. Contact points for our Offices of Congressional Relations and Public Affairs may be found on the last page of the report. GAO staff who made key contributions to this report are listed in appendix V. This appendix describes the methods and federal data sources we used to examine the direct care workforce. In total, we analyzed data from three different surveys—one by the Census Bureau and two conducted by the Bureau of Labor Statistics (BLS)—as no one data source contained information about all aspects of the direct care workforce (see table 2). In conducting our analyses, we made some adjustments due to the data sources’ differing structures. In addition, to focus our analysis on direct care workers providing long-term services and supports (LTSS) (as opposed to those providing any type of care, including acute care), we used Census Bureau and BLS data to identify the industries and workers most likely providing LTSS. We assessed the reliability of the data by interviewing knowledgeable officials, reviewing relevant documentation, and comparing the results of our analysis to published data, as appropriate, and determined that these data were sufficiently reliable to inform our objectives. To report on the number of direct care workers, their demographic characteristics and their hours worked, we used 1-year estimates from the Census Bureau’s 2014 American Community Survey (ACS), a monthly household survey that collected data from approximately 3.54 million addresses in 2014, including both housing units and group quarters. The ACS provides broad, comprehensive information on social, economic, and housing data across the United States. We obtained 2014 ACS 1-year estimates using the DataFerrett tool provided by the Census Bureau. We narrowed the data to include only the occupations identified as direct care and industries that provide long-term care. We then selected the demographic variables of interest and downloaded the data. For comparison, we also downloaded data using the same demographic variables for all U.S. occupations and industries. One limitation of the ACS is that it collects information about the job where an individual works the greatest number of hours, or an individual’s primary job. This would likely exclude direct care workers who provide LTSS part-time as a secondary job, according to Health Resources and Services Administration (HRSA) officials. While many direct care workers work part-time, we do not know how many do so as a secondary job. Another limitation of the ACS data is that individuals who are currently unemployed are classified into the occupational group in which they were most recently employed, which can be as far back as 5 years. This results in counting approximately 472,000 currently unemployed individuals as direct care workers even though they have not been employed in the past 12 months. The ACS data are also self-reported, so individuals choosing not to identify themselves as direct care workers would not be included in the data. To report on direct care workers’ wages, we used BLS’s May 2015 Occupational Employment Statistics. The Occupational Employment Statistics measure jobs and wage rates by occupation for all full- and part-time wage and salary workers in nonfarm industries. Over a rolling 3- year cycle, BLS gathers semiannual probability samples of approximately 200,000 business establishments for a total of 1.2 million businesses. These establishments are selected from a list of nonfarm establishments that file unemployment insurance reports to state workforce agencies. Self-employed workers, owners and partners in unincorporated firms, household workers, unpaid family workers, and government workers in the military and legislative and judicial branches are excluded. We obtained the data through BLS’s online Occupational Employment Statistics database by searching for the direct care occupations of interest and long-term care industries. To calculate the mean hourly wage for an occupation, across all long-term care industries, we multiplied the number of workers employed in each industry by the industry’s mean hourly wage, summed these numbers, and then divided by the total number of workers. To report on direct care workers’ benefits, we used BLS’s National Compensation Survey published in March 2015. The National Compensation Survey collects a range of compensation data along with detailed worker characteristics, such as benefits, union status, and part- time or full-time work schedules. This information is obtained from approximately 10,100 business establishments per year in private industries and state and local governments. The National Compensation Survey excludes workers in federal agencies, quasi-federal agencies, agriculture, and private households as well as military personnel, self- employed workers, unpaid workers and volunteers, individuals receiving long-term disability compensation, and those working overseas. Since National Compensation Survey data on the BLS website is provided by industry sectors, we requested that BLS provide us with data on a range of employment benefits, such as vacation, sick leave, and retirement, specific to direct care occupations for the long-term care industries we identified. Because the National Compensation Survey is administered to a relatively small sample of business establishments, BLS officials stated that they were unable to limit the data to only long-term care industries or provide data for each direct care occupation separately. As a result, the benefit data provided in this report are for all direct care workers in all industries. One limitation of the BLS surveys we reviewed is that the extent to which they include direct care workers working as independent providers is unclear. According to BLS officials, the Occupational Employment Statistics and National Compensation Survey include some independent providers paid for by government programs, such as Medicaid. Their inclusion in the data, however, depends on their employment arrangement with the government program, which can vary. BLS officials explained that, in contrast, independent providers working under private arrangements are not included in the data because these data sources do not include private household workers and self-employed workers. The job titles of direct care worker can vary, but they are often classified into four categories according to the Office of Management and Budget’s Standard Occupational Classification system. We selected four Standard Occupational Classification categories equivalent to the direct care occupations: home health aides (code 31-1011), psychiatric aides (31- 1013), nursing assistants (31-1014), and personal care aides (39-9021). One difference between BLS and Census Bureau data is that Census Bureau data use fewer detailed occupational codes. Specifically, Census Bureau data classify direct care workers into two groups: personal care aides (occupational code 4610) and one broad grouping that includes nursing, psychiatric, and home health aides (occupational code 3600). The broad occupation referred to as “nursing, psychiatric, and home health aides” also includes orderlies. While orderlies are generally not considered direct care workers, BLS Occupational Employment Statistics data suggest that they comprise a small portion of all workers in this occupational grouping. The ACS uses this grouping that includes orderlies, as shown in table 3. Because direct care workers can also work in non-LTSS settings, such as hospitals, we used the Office of Management and Budget’s North American Industry Classification System (NAICS) industry definitions to narrow our scope just to those direct care workers employed in long-term care settings. We considered an industry to provide LTSS if the industry, as defined by NAICS, (1) primarily served the elderly or those living with chronic health conditions (i.e., physical, cognitive, or mental disabilities) who need assistance with activities of daily living on an ongoing basis; (2) provided services that help individuals perform everyday activities, including health care, personal care, and supportive services, such as feeding, bathing, administering topical medication, and supported employment; and (3) provided the services and supports in institutions (e.g., nursing homes) or home- and community-based settings. In addition, we included direct care workers employed by private households and government. The industries we identified and their associated NAICS and Census codes are shown in table 4. In some cases, industries are classified differently between BLS and Census Bureau data, with Census data generally using less specific industry classifications. For example, one of the industries we identified as long-term care related from BLS data was Services for the Elderly and Persons with Disabilities. The Census Bureau, however, does not use this specific industry and instead utilizes the broader industry Individual and Family Services—the aggregate of Services for the Elderly and Persons with Disabilities and two other industries: Child and Youth Services and Other Individual and Family Services. In addition, BLS data classifies public administration entities into one of three industries based on the level of government—federal, state, and local, whereas Census Bureau data divide government employees among public administration settings based upon work activities. For instance, direct care workers employed by all levels of government are captured in Census data in the industry titled Administration of Human Resource Programs. This appendix contains figures and tables presenting data about direct care workers obtained from federal sources. The data include information on the percentage of direct care workers out of all health workers, and direct care workers’ demographics, wages, hours, and benefits. The Centers for Medicare and Medicaid (CMS) funded the National Balancing Indicators Project (NBIP) from 2010 through 2014 to develop and test the feasibility of implementing a set of national indicators to assess states’ efforts toward attaining and maintaining a balanced and person-centered long-term services and supports (LTSS) system. As part of the NBIP, CMS funded seven states (Arkansas, Florida, Kentucky, Maine, Massachusetts, Michigan, and Minnesota) to collect data on direct care workers as a demonstration to see how states could measure the strength and stability of their home- and community-based LTSS workforce. We selected three NBIP states—Arkansas, Maine, and Minnesota—to review because of their geographic diversity and because they had achieved higher response rates in comparison with other states in their geographic region. CMS’s National Direct Service Workforce Resource Center, in coordination with the participating states, designed two surveys to collect uniform minimum data sets from employer organizations and independent providers in each of the states. The survey templates were designed to collect a minimum data set that included measures of workforce volume (the number of full- and part-time workers), workforce stability (attrition and vacancy rates), and worker compensation (average hourly wage and benefits). Each survey incorporated these required questions, and states included additional questions if they wished. The NBIP states selected which groups of employers participating in their Medicaid home- and community-based services programs to survey. Non-Medicaid participating providers were not included in the NBIP study. Otherwise, states selected which providers to survey, such as providers serving certain populations. Of the states we reviewed, Arkansas and Maine together surveyed 490 employer organizations and obtained response rates of 38 and 54 percent, respectively. Minnesota elected not to survey employer organizations, as the state had conducted previous surveys of these providers. All three NBIP states fielded a survey to independent providers. Working with financial management services vendors or community partners, the states together identified over 11,900 independent providers and achieved response rates ranging from 44 to 51 percent. The information collected by the NBIP from independent providers was of particular interest, since detailed information on these providers is not available through federal data sources. We obtained summary results from independent provider surveys for two states—Maine and Minnesota. Together these states surveyed a total of 7,209 direct care workers working as independent providers for consumers in Medicaid home- and community-based programs. Overall response rates achieved were 46 and 44 percent for Maine and Minnesota, respectively. The results for these states showed, among other things, that the vast majority of responding independent providers worked for a family member, neighbor, friend, or someone else they knew. The data also showed large differences in the education and income levels between independent providers in the two states. For example, a little over one-third of responding providers in Maine reported having had some college or higher education, compared with over 60 percent in Minnesota, and over half of responding providers in Maine reported having annual household incomes of less than $22,000, while over 40 percent of independent providers in Minnesota reported incomes over $50,001. Wages also differed between the two states, with responding independent providers in Maine reporting an average wage of $9.51 per hour, compared with $15.40 per hour in Minnesota. (See table 10 for selected results for Maine’s and Minnesota’s surveys to independent providers.) In addition to the contact named above, Christine Brudevold, Assistant Director; Linda McIver, Analyst-in-Charge; Dee Abasute; Elizabeth Morrison; and Lisa Opdycke made key contributions to this report. Also contributing were Vikki Porter, Merrile Sing, and Emily Wilson.

Summary: Millions of elderly individuals and persons with disabling conditions rely on LTSS to help them perform routine daily activities, such as eating and bathing. Direct care workers are among the primary providers of LTSS. Reported difficulties recruiting and retaining direct care workers and the anticipated growth in the elderly population have fueled concerns about the capacity of the paid direct care workforce to meet the demand for LTSS. Despite these concerns, policymakers lack data to help assess the size of the problem. GAO was asked to provide information on direct care workers who deliver LTSS. This report examines (1) federal and state data available on the paid direct care workforce and (2) actions HRSA has taken to develop information and projections on this workforce. GAO analyzed the most recent data available from the Census Bureau and Bureau of Labor Statistics on paid direct care workers' demographics, compensation, and benefits and reviewed efforts to collect data on direct care workers in four states, selected in part for geographic variation. GAO also reviewed HRSA documents and interviewed agency officials about HRSA's previous, ongoing, and planned efforts to improve data. Federal data sources provide a broad picture of direct care workers—nursing assistants and home health, psychiatric, and personal care aides—who provide long-term services and supports (LTSS), but limitations and gaps affect the data's usefulness for workforce planning. Some states have collected data in areas where federal data are limited, but these have been one-time studies. Federal data show that direct care workers who provide LTSS numbered an estimated 3.27 million in 2014, or 20.8 percent of the nation's health workforce. Federal data show that wages for direct care workers, while differing by occupation, are generally low, averaging between approximately $10 and $13 per hour in 2015. However it is unclear to what extent these wage data include direct care workers employed directly by the individuals for whom they care. The number of these workers, often referred to as independent providers, is believed to be significant and growing. Some states, in coordination with the federal government or on their own, have conducted studies about direct care workers and collected detailed information. These studies showed that a majority of independent providers worked for a family member or someone else they knew. The Department of Health and Human Services' (HHS) Health Resources and Services Administration (HRSA), which is responsible for monitoring the supply of and demand for health professionals, has developed some information on direct care workers. However, HRSA has not produced projections of this workforce or developed methods to address data limitations, which is in line with one of the goals in its strategic plan. HRSA's actions include sponsoring research and issuing a 2013 report that summarized federal data on different occupations, including direct care workers. While HRSA has recognized the limitations of existing data and cites these as reasons it has not developed projections for this workforce, the agency has not developed methods to address data challenges. Unless HRSA takes steps to overcome data limitations in order to make projections of supply and demand for direct care workers, policymakers will continue to be hampered in their ability to identify workforce trends and develop appropriate strategies to help ensure a sufficient number of qualified direct care workers. GAO recommends that HRSA take steps to produce projections of direct care workforce supply and demand and develop methods to address data limitations in order to do so. HHS concurred with GAO's recommendation, stating that developing projections for the direct care workforce is timely and important.