Long-Term Care

Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened Gao ID: GAO-03-576 June 20, 2003

Home and community-based settings have become a growing part of states' Medicaid long-term care programs, serving as an alternative to care in institutional settings, such as nursing homes. To cover such services, however, states often obtain waivers from certain federal statutory requirements. GAO was asked to review (1) trends in states' use of Medicaid home and community-based service (HCBS) waivers, particularly for the elderly, (2) state quality assurance approaches, including available data on the quality of care provided to elderly individuals through waivers, and (3) the adequacy of federal oversight of state waivers. GAO is recommending that the Administrator of CMS take steps to (1) better ensure that state quality assurance efforts are adequate to protect the health and welfare of HCBS waiver beneficiaries, and (2) strengthen federal oversight of the growing HCBS waiver programs. Although CMS raised certain concerns about aspects of the report, such as the respective state and federal roles in quality assurance and the potential need for additional federal oversight resources, CMS generally concurred with the recommendations.

From 1991 through 2001, Medicaid long-term care spending more than doubled to over $75 billion, while the proportion spent on institutional care declined. Over a similar time period, HCBS waivers grew from 5 percent to 19 percent of such expenditures--from $1.6 billion to $14.4 billion--and the number of waivers, participants, and average state per capita spending also grew significantly. Since 1992, the number of waivers increased by almost 70 percent to 263 in June 2002, and the number of beneficiaries, as of 1999, had nearly tripled to almost 700,000, of which 55 percent were elderly. In the absence of specific federal requirements for HCBS quality assurance systems, states provide limited information to the Centers for Medicare & Medicaid Services (CMS), the federal agency that administers the Medicaid program, on how they assure quality of care in their waiver programs for the elderly. States' waiver applications and annual reports for waivers for the elderly often contained little or no information on state mechanisms for assuring quality in waivers, thus limiting information available to CMS that should be considered before approving or renewing waivers. GAO's analysis of available CMS and state waiver oversight reports for waivers serving the elderly identified oversight weaknesses and quality of care problems. More than 70 percent of the waivers for the elderly that GAO reviewed documented one or more quality-of-care problems. The most common problems included failure to provide necessary services, weaknesses in plans of care, and inadequate case management. The full extent of such problems is unknown because many state waivers lacked a recent CMS review, as required, or the annual state waiver report lacked the relevant information. CMS has not developed detailed state guidance on appropriate quality assurance approaches as part of initial waiver approval. Although CMS oversight has identified some quality problems in waivers, CMS does not adequately monitor state waivers and the quality of beneficiary care. The 10 CMS regional offices are responsible for ongoing monitoring for HCBS waivers. However, CMS does not hold these offices accountable for completing periodic waiver reviews, nor does it hold states accountable for submitting annual reports on the status of waiver quality. Consequently, CMS is not fully complying with statutory and regulatory requirements when it renews waivers. As of June 2002, almost one-fifth of waivers in place for 3 years or more had either never been reviewed or were renewed without a review; for an additional 16 percent of waivers, reports detailing the review results were never finalized. Regional office personnel explained that limited staff resources and travel funds often impede the timing and scope of reviews. While regional office reviews include record reviews for a sample of waiver beneficiaries, they do not always include beneficiary interviews. The reviews also varied considerably in the number of beneficiary records reviewed and their method of determining the sample.

Recommendations

Our recommendations from this work are listed below with a Contact for more information. Status will change from "In process" to "Open," "Closed - implemented," or "Closed - not implemented" based on our follow up work.

Director: Team: Phone:


GAO-03-576, Long-Term Care: Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened This is the accessible text file for GAO report number GAO-03-576 entitled 'Long-Term Care: Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened' which was released on July 07, 2003. This text file was formatted by the U.S. General Accounting Office (GAO) to be accessible to users with visual impairments, as part of a longer term project to improve GAO products' accessibility. Every attempt has been made to maintain the structural and data integrity of the original printed product. Accessibility features, such as text descriptions of tables, consecutively numbered footnotes placed at the end of the file, and the text of agency comment letters, are provided but may not exactly duplicate the presentation or format of the printed version. The portable document format (PDF) file is an exact electronic replica of the printed version. We welcome your feedback. Please E-mail your comments regarding the contents or accessibility features of this document to Webmaster@gao.gov. This is a work of the U.S. government and is not subject to copyright protection in the United States. It may be reproduced and distributed in its entirety without further permission from GAO. Because this work may contain copyrighted images or other material, permission from the copyright holder may be necessary if you wish to reproduce this material separately. Report to Congressional Requesters: United States General Accounting Office: GAO: June 2003: LONG-TERM CARE: Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened: Quality Assurance in Medicaid Waiver Services: GAO-03-576: GAO Highlights: Highlights of GAO-03-576, a report to congressional requesters Why GAO Did This Study: Home and community-based settings have become a growing part of states‘ Medicaid long-term care programs, serving as an alternative to care in institutional settings, such as nursing homes. To cover such services, however, states often obtain waivers from certain federal statutory requirements. GAO was asked to review (1) trends in states‘ use of Medicaid home and community-based service (HCBS) waivers, particularly for the elderly, (2) state quality assurance approaches, including available data on the quality of care provided to elderly individuals through waivers, and (3) the adequacy of federal oversight of state waivers. What GAO Found: From 1991 through 2001, Medicaid long-term care spending more than doubled to over $75 billion, while the proportion spent on institutional care declined. Over a similar time period, HCBS waivers grew from 5 percent to 19 percent of such expenditures”from $1.6 billion to $14.4 billion”and the number of waivers, participants, and average state per capita spending also grew significantly. Since 1992, the number of waivers increased by almost 70 percent to 263 in June 2002, and the number of beneficiaries, as of 1999, had nearly tripled to almost 700,000, of which 55 percent were elderly. In the absence of specific federal requirements for HCBS quality assurance systems, states provide limited information to the Centers for Medicare & Medicaid Services (CMS), the federal agency that administers the Medicaid program, on how they assure quality of care in their waiver programs for the elderly. States‘ waiver applications and annual reports for waivers for the elderly often contained little or no information on state mechanisms for assuring quality in waivers, thus limiting information available to CMS that should be considered before approving or renewing waivers. GAO‘s analysis of available CMS and state waiver oversight reports for waivers serving the elderly identified oversight weaknesses and quality of care problems. More than 70 percent of the waivers for the elderly that GAO reviewed documented one or more quality-of-care problems. The most common problems included failure to provide necessary services, weaknesses in plans of care, and inadequate case management. The full extent of such problems is unknown because many state waivers lacked a recent CMS review, as required, or the annual state waiver report lacked the relevant information. CMS has not developed detailed state guidance on appropriate quality assurance approaches as part of initial waiver approval. Although CMS oversight has identified some quality problems in waivers, CMS does not adequately monitor state waivers and the quality of beneficiary care. The 10 CMS regional offices are responsible for ongoing monitoring for HCBS waivers. However, CMS does not hold these offices accountable for completing periodic waiver reviews, nor does it hold states accountable for submitting annual reports on the status of waiver quality. Consequently, CMS is not fully complying with statutory and regulatory requirements when it renews waivers. As of June 2002, almost one-fifth of waivers in place for 3 years or more had either never been reviewed or were renewed without a review; for an additional 16 percent of waivers, reports detailing the review results were never finalized. Regional office personnel explained that limited staff resources and travel funds often impede the timing and scope of reviews. While regional office reviews include record reviews for a sample of waiver beneficiaries, they do not always include beneficiary interviews. The reviews also varied considerably in the number of beneficiary records reviewed and their method of determining the sample. What GAO Recommends: GAO is recommending that the Administrator of CMS take steps to (1) better ensure that state quality assurance efforts are adequate to protect the health and welfare of HCBS waiver beneficiaries, and (2) strengthen federal oversight of the growing HCBS waiver programs. Although CMS raised certain concerns about aspects of the report, such as the respective state and federal roles in quality assurance and the potential need for additional federal oversight resources, CMS generally concurred with the recommendations. www.gao.gov/cgi-bin/getrpt?GAO-03-576. To view the full product, including the scope and methodology, click on the link above. For more information, contact Kathryn G. Allen at (202) 512-7118. [End of section] Contents: Letter: Results in Brief: Background: Waivers Are Vehicle for Dramatic Growth in Medicaid Home and Community- Based Services: Information on State Quality Assurance Approaches for Waivers Serving the Elderly Is Limited, but Quality Concerns Have Been Identified: CMS Guidance to States and Oversight Of HCBS Waivers Are Inadequate to Ensure Quality Care: Conclusions: Recommendations for Executive Action: Agency and State Comments and Our Evaluation: Appendix I: Scope and Methodology: Appendix II: Suggested CMS Definitions of Home and Community-Based Services in Waivers Serving the Elderly: Appendix III: Medicaid Long-Term Care Expenditures, by Type and State, Fiscal Year 2001: Appendix IV: Number of Beneficiaries Served by HCBS Waivers for the Elderly and in Nursing Homes, by State, 1999: Appendix V: Number of HCBS Waivers for the Elderly, Beneficiaries, Expenditures, and per Beneficiary Expenditures by State, 1999: Appendix VI: CMS HCBS Quality Initiatives: Appendix VII: Beneficiary Samples for and Duration of Regional Office Reviews of 15 State Waivers Serving the Elderly: Appendix VIII: Comments from the Centers for Medicare & Medicaid Services: Tables: Table 1: States with Highest and Lowest per Beneficiary Expenditures for State HCBS Waivers Serving the Elderly, 1999: Table 2: Quality Assurance Mechanisms States Reported Using in HCBS Waivers Serving the Elderly: Table 3: Quality Assurance Mechanisms Frequently Cited in Waiver Applications and Current Annual State Reports for HCBS Waivers Serving the Elderly: Table 4: Frequently Cited Quality-of-Care Problems Identified by CMS Regional Offices or States in HCBS Waivers Serving the Elderly: Table 5: HCBS Waivers That Had 10 Years or More Elapse without Ever Having a Regional Office Review or without a Review Prior to the Last Waiver Renewal, as of June 2002: Table 6: Status of CMS and State Monitoring for the 15 Largest HCBS Waivers Serving the Elderly: Table 7: Number and Specialty of CMS Regional Office Staff Assigned to Oversee HCBS Waivers: Table 8: Services States May Include in Their Medicaid Home and Community-Based Services Waiver: Figure: Figure 1: Percentage Distribution of Medicaid Long-Term Care Expenditures, Fiscal Years 1991 and 2001: Abbreviations: CMS: Centers for Medicare & Medicaid Services: FTE: full-time equivalent: HCBS: home and community-based services: HCFA: Health Care Financing Administration: HHS: Department of Health and Human Services: ICF/MR: intermediate care facility for the mentally retarded: United States General Accounting Office: Washington, DC 20548: June 20, 2003: The Honorable Charles E. Grassley Chairman Committee on Finance United States Senate: The Honorable John B. Breaux Ranking Minority Member Special Committee on Aging United States Senate: Over the last decade, states have increased their support for long-term care services in individuals' homes or in other community-based settings--such as adult day care, adult foster care homes, and assisted living facilities--as an alternative to care in nursing homes and other institutions. For many vulnerable elderly and nonelderly individuals with physical, developmental, or cognitive disabilities, these alternative settings and services are seen as preferable to institutional care. Most state funding of long-term care is through Medicaid, the federal-state health care program for certain low-income individuals. Medicaid home and community-based services (HCBS) waivers, authorized under section 1915(c) of the Social Security Act, are the primary means by which states provide noninstitutional long-term care.[Footnote 1] Waivers allow states to limit the availability of services geographically, target specific populations or conditions, control the number of individuals served, and cap overall expenditures- -actions not usually allowed under the Medicaid statute. The Centers for Medicare & Medicaid Services (CMS)--the federal agency that manages Medicaid--reviews and approves states' requests for these waivers and also is responsible for ensuring that states have necessary safeguards to protect the health and welfare of individuals receiving services through waiver programs.[Footnote 2] Despite the growing use of HCBS waivers, concerns have been raised about the quality of care provided through waivers serving both elderly and nonelderly populations. Newspaper exposés and some state audit reports have chronicled serious health and welfare concerns in waiver programs across the country. Because of continued growth in the numbers of people served through HCBS waiver programs and concerns about the quality of care, you asked us to review (1) trends in states' use of such waivers, particularly for the elderly, (2) state quality assurance approaches for waivers serving the elderly, including available data on the quality of care provided to beneficiaries, and (3) the adequacy of CMS's oversight of state waiver programs for the elderly as well as those for other target populations. To identify trends in states' use of waivers, we analyzed CMS and state reports that contained data on waiver beneficiaries, expenditures, and services. To identify those waivers that serve the elderly, we compiled a list of HCBS waivers with "the aged" or "aged and disabled" as their target populations. Throughout this report, we refer to this universe of waivers as those "serving the elderly." To assess state quality assurance activities for waivers serving the elderly, we analyzed (1) data on quality assurance approaches from state waiver applications and their most recent annual reports to CMS, (2) the oversight findings reported by states in their annual waiver reports, and (3) CMS regional office waiver reviews and state audits of waivers completed from October 1998 through May 2002.[Footnote 3] For a more in-depth perspective on states' quality assurance approaches for waivers serving the elderly, we conducted structured interviews with state officials and staff in South Carolina, Texas, and Washington. We selected these states because they operate some of the largest HCBS waivers for the elderly that have been in effect for 5 years or longer. We did not attempt to assess the effectiveness of their quality assurance approaches. To determine the adequacy of CMS oversight of state waiver programs for the elderly as well as those for other target populations, we obtained relevant data from officials at CMS headquarters and conducted structured interviews with all 10 CMS regional offices on their waiver review activities and staffing as of June 2002. See appendix I for a detailed discussion of our scope and methodology. We conducted our review from November 2001 through June 2003 in accordance with generally accepted government auditing standards. Results in Brief: Total Medicaid spending for long-term care increased from $33.8 billion in fiscal year 1991 to $75.3 billion in fiscal year 2001, with a growing share spent on services through home and community-based waivers as an alternative to care in institutions such as nursing homes. Expenditures for services through HCBS waivers increased from $1.6 billion in fiscal year 1991 to $14.4 billion in fiscal year 2001, growing from 5 percent of all Medicaid long-term care spending in fiscal year 1991 to 19 percent in fiscal year 2001. Over roughly the same time period, the number of HCBS waivers increased from 155 to 263, with 77 serving the elderly as of June 2002. Every state except Arizona operates at least one waiver for the elderly. From 1992 to 1999, the total number of persons served through waivers nationwide nearly tripled to 688,152 and the number of beneficiaries served by waivers for the elderly more than doubled to 377,083. In two states, Oregon and Washington, HCBS waiver services have replaced nursing homes as the dominant means of providing long-term care to the elderly under Medicaid. Nationally, average Medicaid expenditures per beneficiary in waivers serving the elderly increased from $3,622 in 1992 to $5,567 in 1999; average spending per beneficiary in 1999 ranged from $1,208 in New York to $15,065 in Hawaii, reflecting differences in the type and amount of services provided under different waivers. No nationwide data are available on states' quality assurance approaches or the status of quality of care for beneficiaries served by waivers for the elderly, but concerns have been identified about the quality of care provided under many of these waivers. Because CMS has not provided detailed guidance to states on federal requirements for HCBS quality assurance systems, the information available to CMS that should be considered before approving or renewing waivers is limited. Thus, state waiver applications and annual waiver reports that we reviewed for waivers serving the elderly often contained little or no information on state quality assurance approaches. For example, 11 applications for the 15 largest waivers serving the elderly identified three or fewer specific quality assurance approaches, and none mentioned important approaches such as complaint systems or enforcement tools. Moreover, 18 of 52 state annual waiver reports that we reviewed contained no information on approaches used to help ensure quality. Where information was provided, the most frequently cited quality assurance approaches included (1) audits or reviews of case management agencies, (2) state agency reviews of waiver providers or direct-care staff, and (3) state licensure, certification, or standards for some waiver providers. Although CMS regional office and state reviews identified few if any specific cases of harm to waiver beneficiaries, the reviews for the majority of waivers serving the elderly with available relevant detail had one or more problems related to quality of care. Among the most commonly cited problems were (1) failure to provide authorized or necessary services, (2) inadequate assessment or documentation of beneficiaries' care needs in the plan of care, and (3) inadequate case management. For example, one recent CMS regional office review found that more than one-fourth of a state's waiver beneficiaries had received none of their authorized personal care services. However, the consequences for the beneficiaries were not identified in this review. Since many state waiver programs did not have a recent CMS review, as required, or the annual state waiver report lacked the relevant information, the extent of quality-of-care problems is unknown. CMS guidance to states and oversight of HCBS waivers is inadequate to ensure quality of care for waiver beneficiaries. CMS has not developed detailed guidance for states on appropriate quality assurance mechanisms as part of the waiver approval process, and initiatives under way to generate information on state quality assurance approaches do not address this problem. In addition, the agency has not fully complied with the statutory and regulatory requirements that condition the renewal of HCBS waivers on (1) states submitting required annual reports that include information on state quality assurance approaches and deficiencies identified through state monitoring and (2) CMS's conducting and documenting periodic waiver reviews to determine whether states satisfied requirements for protecting the health and welfare of waiver beneficiaries. Many state annual waiver reports submitted to CMS regional offices for waivers serving the elderly were not timely and lacked required information on quality assurance and state monitoring. As of June 2002, 228 HCBS waivers for all target populations had been in place for 3 years or longer and should have been reviewed by CMS regional offices. However, 42 waivers serving approximately 132,000 beneficiaries either had never been reviewed or were renewed without a review. For 36 additional waivers, reviews were conducted, but the reports summarizing the findings were never finalized, raising a question as to whether any weaknesses were identified and, if so, had been corrected. CMS regional office personnel informed us that limited staff and travel resources impeded the timing and scope of reviews. While regions' reviews included an examination of beneficiary records, we found that the reviews varied considerably in the number of beneficiary records reviewed and their method of determining the sample, raising a question about the extent to which findings could be generalized. In addition, they did not always include beneficiary interviews. Although updated in 2001, CMS guidance for conducting waiver reviews does not address key operational issues such as an adequate sample size or the sampling methodology to provide a basis for generalizing review findings. To better ensure that state quality assurance efforts are adequate to protect the health and welfare of HCBS waiver beneficiaries and to strengthen federal oversight, we are recommending that the CMS Administrator (1) establish more detailed criteria regarding the necessary components of an HCBS waiver quality assurance system, (2) require states to submit more specific information about their quality assurance approaches prior to waiver approval, (3) ensure that states provide sufficient and timely information in their annual waiver reports on their efforts to monitor quality, (4) develop guidance on the scope and methodology for federal reviews of state waiver programs, and (5) ensure allocation of sufficient resources for conducting thorough and timely reviews of quality in HCBS waivers and hold regional offices accountable for completing such reviews. Although CMS raised certain concerns about aspects of our report, such as the respective state and federal roles in quality assurance and the potential need for additional federal oversight resources, the agency generally concurred with our recommendations. Background: The jointly funded federal-state Medicaid program is the primary source of financing for long-term care services.[Footnote 4] About one-third of the total $228 billion in Medicaid spending in fiscal year 2001 was for long-term care in both institutional and community-based settings. States administer this program within broad federal rules and according to a state plan approved by CMS, the federal agency that oversees and administers Medicaid. Some services, such as nursing home care and home health care, are mandatory services that must be covered in any state that participates in Medicaid. Other services, such as personal care, are optional, which a state may choose to include in its state Medicaid plan but which then must be offered to all individuals statewide who meet its Medicaid eligibility criteria. States may also apply to CMS for a section 1915(c) waiver to provide home and community-based services as an alternative to institutional care in a hospital, nursing home, or intermediate care facility for the mentally retarded (ICF/ MR).[Footnote 5] If approved, HCBS waivers allow states to limit the availability of services geographically, to target services to specific populations or conditions, or to limit the number of persons served, actions not generally allowed for state plan services. States often operate multiple waivers serving different population groups, such as the elderly, persons with mental retardation or developmental disabilities, persons with physical disabilities, and children with special care needs. States determine the types of long-term care services they wish to offer under an HCBS waiver. Waivers may offer a variety of skilled services to only a few individuals with a particular condition, such as persons with traumatic brain injury, or they may offer only a few unskilled services to a large number of people, such as the aged or disabled.[Footnote 6] The wide variety of services that may be available under waivers includes home modification, such as installing a wheelchair ramp, transportation, chore services, respite care, nursing services, personal care services, and caregiver training for family members. CMS's waiver application form for states includes a list of home and community-based services with suggested definitions. States are free to include as many or as few of these as they wish, to include additional services, or to include different definitions of services from those supplied with the form. See appendix II for a list of services provided through the HCBS waivers serving the elderly and CMS's suggested definitions of these services. To be eligible for waiver services, an individual must meet the state's criteria for needing the level of care provided in an institution, such as a nursing home, and be able to receive care in the community at a cost generally not exceeding the cost of institutional care.[Footnote 7] States are responsible for determining the specific financial and functional eligibility criteria used, conducting the necessary screening and assessment, and arranging for services to be provided. Factors that states use in assessing functional eligibility for nursing home care and for waiver services include the individuals' medical condition and their degree of physical or mental impairment. Other factors that states generally consider, and which may affect the states' ability to provide care in the community at a cost not exceeding that of institutional care or to adequately protect beneficiaries' health and welfare, include the mix of services needed by the individual, the availability of needed services, the cost of services, the need for home modification, and the availability of family members or other caregivers.[Footnote 8] In order to receive federal funds for waiver services, a state must submit an application to the Secretary of Health and Human Services (HHS) that identifies the target population, specifies the number of persons that will be served, and lists the services to be included. In addition, states are required to provide certain assurances that necessary safeguards have been taken to assure financial accountability and to protect the health and welfare of beneficiaries under the waiver.[Footnote 9] Federal regulations specify that the state's safeguards for the health and welfare of beneficiaries must include (1) adequate standards for all providers of waiver services and (2) assurance that any state licensure or certification requirements for providers of waiver services are met.[Footnote 10] CMS requires that a state's waiver application include documentation regarding the standards applicable for each service provider. If the only requirement for a particular provider is licensure or certification, the state must provide a citation to the applicable state statute or regulation. If other requirements apply, the state must specify the applicable standards that providers must meet and explain how the provider standards will ensure beneficiaries' welfare. Finally, states must annually report on, among other things, how they implement, monitor, and enforce their health and welfare standards and the waiver's impact on the health and welfare of beneficiaries. Initial waiver applications and amendments to initial waivers are reviewed and approved by CMS headquarters. CMS's 10 regional offices have primary responsibility for reviewing and approving applications to renew waivers and amendments to renewed waivers. If CMS determines that a waiver application meets program requirements, including sufficient documentation to indicate that necessary safeguards are in place to protect the health and welfare of waiver beneficiaries, it will approve an initial waiver for a 3-year period. Subsequently, waivers may be extended for additional 5-year periods. Section 1915(c)(3) of the Social Security Act provides that, upon request of a state, HCBS waivers may be extended, unless the Secretary of HHS determines that the assurances provided during the preceding term have not been met.[Footnote 11] Among the assurances that the state makes are that necessary safeguards have been taken to protect the health and welfare of waiver participants and that the state will submit annual reports on the impact of the waiver on the type and amount of medical assistance provided under the state Medicaid plan and on the health and welfare of recipients. Regulations implementing section 1915(c) provide that an extension of a waiver will be granted unless (1) CMS's review of the prior waiver period shows that the assurances the state made were not met and (2) the state fails to provide adequate documentation and assurances to justify an extension.[Footnote 12] In its explanation of this regulation, HCFA indicated that a review of the prior period is an indispensable part of the renewal process.[Footnote 13] Reviews of waiver programs for which a renewal has been requested are, therefore, expected to occur at some point during the initial 3-year period, and at least once during each renewal cycle. CMS guidance on the reviews calls for on-site visits that include an examination of beneficiary and provider records as well as interviews with state officials. If a state's efforts to protect the health and welfare of waiver beneficiaries are determined to be inadequate, CMS officials told us that the agency can either bar the state from enrolling any new waiver beneficiaries until corrective actions are taken or terminate the waiver. According to a recent CMS-sponsored review, oversight of waivers is often decentralized and fragmented among a variety of agencies and levels of government, and rarely does a single entity have accountability for the overall quality of care provided to waiver beneficiaries.[Footnote 14] Some waiver service providers are regulated by state licensing agencies, some are certified by private accreditation organizations, and others operate under terms of a contract or other agreement with a state agency. While the state Medicaid agency is ultimately accountable to the federal government for compliance with the requirements of the waivers, it may delegate administration of the waivers to state units on aging, mental health departments, or other departments or agencies with jurisdiction over a specific population or service. About one-third of waivers for the elderly are administered by an agency or department other than the Medicaid agency, most often the state unit on aging.[Footnote 15] These agencies may then contract with local networks, agencies, or providers to provide or arrange for beneficiary services. Waivers Are Vehicle for Dramatic Growth in Medicaid Home and Community- Based Services: Medicaid-covered HCBS services have become a growing component of state long-term care systems, with most of the growth accounted for by substantial increases in the number of HCBS waivers and the beneficiaries served through waivers. In a few states, these waivers are beginning to replace nursing homes as the dominant means for providing long-term care to the elderly under Medicaid. Over the past 10 years, total Medicaid long-term care spending has more than doubled- -from $33.8 billion in fiscal year 1991 to $75.3 billion in fiscal year 2001. However, the share of spending for institutional care declined from 86 to 71 percent, while the share spent for home and community- based care grew from 14 to 29 percent. Most of the growth in home and community-based care spending under Medicaid can be accounted for by HCBS waivers. Total Medicaid home and community-based care spending grew from $4.8 billion in fiscal year 1991 to $22.2 billion in fiscal year 2001, while spending for waiver services grew from $1.6 billion in fiscal year 1991 to $14.4 billion in fiscal year 2001. As shown in figure 1, waiver spending grew from 5 percent of all Medicaid long-term care spending in fiscal year 1991 to 19 percent in fiscal year 2001. In all but two states--California and New York--and the District of Columbia, over one-half of Medicaid home and community-based services spending in fiscal year 2001 was through waivers, with a much smaller portion going to nonwaiver mandatory home health care or state plan optional personal care services.[Footnote 16] See appendix III for a summary of Medicaid long-term care expenditures by type and state. Figure 1: Percentage Distribution of Medicaid Long-Term Care Expenditures, Fiscal Years 1991 and 2001: [See PDF for image] Note: GAO analysis of HCFA Form 64 data as reported by Brian Burwell, Steve Eiken, and Kate Sredl in Medicaid Long Term Care Expenditures in FY 2001 (The MEDSTAT Group, May 10, 2002). The figure includes data from 49 states and the District of Columbia. [End of figure] Both the number and size of HCBS waivers have grown considerably over the past 20 years. Every state except Arizona operates at least one such waiver for the elderly.[Footnote 17] In 1982, the first year of the waiver program, 6 states operated HCBS waivers. By 1992, 48 states operated a total of 155 HCBS waivers. As of June 2002, 49 states and the District of Columbia operated a total of 263 HCBS waivers, with 77 serving the elderly. The average waiver for the elderly served 3,305 Medicaid beneficiaries in 1992 and 5,892 beneficiaries in 1999.[Footnote 18] In 1999, 15 states served more than 10,000 persons in their waivers for the elderly, an increase from only 4 states in 1992. The total number of HCBS waiver beneficiaries--elderly and nonelderly- -nationwide nearly tripled from 235,580 in 1992 to 688,152 in 1999, the most recent year for which data were available. The number of beneficiaries served in waivers for the elderly more than doubled from 155,349 in 1992 to 377,083 in 1999. Over this same period, the number of Medicaid beneficiaries who used some nursing home care during the year grew by only 2.5 percent from 1.57 million to 1.61 million beneficiaries. By 1999, waivers for the elderly were serving 19 percent of all Medicaid beneficiaries served either in a nursing home or through an HCBS waiver for the elderly, an increase from 9 percent in 1992.[Footnote 19] In two states, Oregon and Washington, more elderly and disabled Medicaid beneficiaries were served in HCBS waivers in 1999 than were served in nursing homes. Appendix IV includes the number of Medicaid beneficiaries served by HCBS waivers for the elderly and in nursing homes in each state. In 1999, the average per beneficiary expenditure in HCBS waivers serving the elderly was $5,567, an increase from $3,622 in 1992.[Footnote 20] However, the average per beneficiary expenditure for such waivers varied widely across states, reflecting differences in the type, number, and amount of services provided under waivers in different states. As shown in table 1, among those states with waivers serving the elderly in 1999, per beneficiary expenditures ranged from an average of $15,065 in Hawaii to $1,208 in New York. In Hawaii, one such waiver that provided an average of 85 hours of personal assistance services per month to 91 percent of beneficiaries of that waiver had an average cost of $10,893 per beneficiary. A second Hawaii waiver that provided adult foster care, residential care, or assisted living for waiver beneficiaries had an average cost of $16,958 per beneficiary. In contrast, New York's waiver for the elderly did not include personal care or residential services; the primary benefits included social work services, personal emergency response systems, and home-delivered meals. Appendix V provides summary information on states' HCBS waivers for the elderly, including per beneficiary expenditures. Table 1: States with Highest and Lowest per Beneficiary Expenditures for State HCBS Waivers Serving the Elderly, 1999: United States; Average expenditures per beneficiary: $5,567; Number of beneficiaries: 377,083. States with highest per beneficiary waiver spending: State: Hawaii; Average expenditures per beneficiary: 15,065; Number of beneficiaries: 923. State: New Mexico; Average expenditures per beneficiary: 14,151; Number of beneficiaries: 1,404. State: North Carolina; Average expenditures per beneficiary: 13,778; Number of beneficiaries: 11,159. State: Alaska; Average expenditures per beneficiary: 12,015; Number of beneficiaries: 712. State: West Virginia; Average expenditures per beneficiary: 11,213; Number of beneficiaries: 3,470. States with lowest per beneficiary waiver spending: State: Michigan; Average expenditures per beneficiary: 2,632; Number of beneficiaries: 6,328. State: Iowa; Average expenditures per beneficiary: 2,517; Number of beneficiaries: 3,994. State: Missouri; Average expenditures per beneficiary: 2,224; Number of beneficiaries: 20,821. State: Massachusetts; Average expenditures per beneficiary: 1,919; Number of beneficiaries: 5,132. State: New York; Average expenditures per beneficiary: 1,208; Number of beneficiaries: 19,732. Source: CMS. Notes: GAO analysis of annual state waiver report data (HCFA Form 372) as reported by Charlene Harrington in Medicaid 1915(c) Home and Community-Based Waivers: Program Data, 1992-1999 (San Francisco, Calif.: University of California, San Francisco, August 2001). [End of table] All states in this table except Hawaii operated one waiver serving the elderly in 1999. Hawaii operated two waivers, one that served 288 beneficiaries at a cost of $10,893 per beneficiary and a second that served 635 beneficiaries at a cost of $16,958 per beneficiary. Information on State Quality Assurance Approaches for Waivers Serving the Elderly Is Limited, but Quality Concerns Have Been Identified: No comprehensive nationwide data are available on states' quality assurance systems for or the quality of care provided through HCBS waivers, including those serving the elderly. In the absence of detailed federal requirements for HCBS quality assurance systems, states' waiver applications and annual reports often contained little or no information on the mechanisms used to ensure quality, raising a question as to whether CMS had adequate information to approve or renew some waivers. More than half of the waivers serving the elderly for which we were able to obtain a CMS waiver oversight report, an annual state waiver report, or a state audit report identified oversight weaknesses and quality-of-care problems. Frequently cited quality-of- care problems included (1) failure to provide authorized or necessary services, (2) inadequate assessment or documentation of beneficiaries' care needs in the plan of care, and (3) inadequate case management. We were unable to analyze over one-third of waivers serving the elderly because they lacked a recent regional office review, the annual state waiver report lacked the relevant information, or they were too new to have annual state reports. States Use a Variety of Waiver Quality Assurance Approaches in Waivers Serving the Elderly, Yet Some States Provide Limited or Incomplete Information to CMS: Although the state waiver applications and annual waiver reports we reviewed for waivers serving the elderly identified more than a dozen quality assurance approaches, many contained little or no information about how states ensure quality.[Footnote 21] For example, 11 applications for the 15 largest waivers serving the elderly identified three or fewer quality assurance mechanisms and none of these 11 waivers mentioned important approaches, including complaint systems or sanctions. Eighteen of 52 state annual waiver reports that we reviewed contained no information on the mechanisms used to help ensure quality. Moreover, when waiver applications and annual waiver reports did contain some information, the information was often incomplete. Our work in South Carolina, Texas, and Washington identified additional quality assurance mechanisms that were not listed in their waiver applications or annual reports, suggesting that such documents may understate the nature and extent of their oversight approaches. As a result, CMS's understanding of how these states ensure quality in the waivers may be incomplete. States Use a Variety of Quality Assurance Mechanisms: Information provided to CMS in state waiver applications and annual reports identified a variety of mechanisms used to protect the health and welfare of beneficiaries in waivers serving the elderly. Table 2 describes 14 quality assurance approaches that states reported using in HCBS waivers for the elderly. Some of these approaches focus on the waiver beneficiary, such as case management or beneficiary satisfaction surveys. Other approaches are focused on providers, including licensure and inspections, corrective action plans, sanctions, and program manuals. States may require that certain providers be licensed or certified or meet other requirements contained in state laws or regulations. Such providers are generally subject to periodic inspections that may include a review of beneficiary records to determine whether the records meet program standards. A third set of quality assurance approaches focuses on waiver program operations, including internal or external evaluations of the waiver program, supervisory reviews of waiver beneficiary assessments and plans of care, and audits or reviews of case management agencies. Table 2: Quality Assurance Mechanisms States Reported Using in HCBS Waivers Serving the Elderly: Quality assurance mechanism: Beneficiary-oriented mechanisms: Quality assurance mechanism: Case management; Description: Case management includes assessing the beneficiary's needs, developing the plan of care, arranging for the delivery of services, monitoring the beneficiary, and conducting periodic reassessments of the beneficiary's needs and modifying the plan of care as needed. Quality assurance mechanism: Beneficiary satisfaction surveys or interviews; Description: A survey instrument or other tool is used to measure waiver beneficiaries' views about their waiver services and the extent to which services are meeting their long-term care needs. Quality assurance mechanism: On-site visits of beneficiaries; Description: On-site visits may be conducted by program officials other than the beneficiary's case manager to observe services being provided and gather information about the care provided. Quality assurance mechanism: Complaint systems; Description: Systems to accept, investigate, and track the status of waiver beneficiaries' or others' complaints regarding the waiver program. Quality assurance mechanism: Provider-oriented mechanisms: Quality assurance mechanism: Licensure, certification, or other state standards; Description: States require that certain providers be licensed, certified, or meet other requirements contained in state law or regulation. Providers are generally subject to periodic inspections that include a review of beneficiary records to determine if they meet program standards. Quality assurance mechanism: Provider or direct care staff reviews or audits; Description: State program officials conduct reviews of waiver providers or individual caregivers to determine whether waiver-specific requirements were met. Such reviews involve reviews of beneficiary records and other provider documentation as well as individual beneficiary interviews. Quality assurance mechanism: Corrective action plans; Description: List of actions that the provider agrees to take to return to compliance with federal or state standards. Quality assurance mechanism: Sanctions and penalties; Description: Depending on the severity of the violation, actions available to penalize the provider for not complying with federal or state standards. Quality assurance mechanism: Training and technical assistance; Description: Ongoing, continuing education for case managers and waiver providers to ensure competency in delivering and monitoring the care of waiver beneficiaries. Quality assurance mechanism: Program manuals; Description: Distribution of rules, policies, procedures, or standards to waiver providers. Quality assurance mechanism: Program-oriented mechanisms: Quality assurance mechanism: Case management agency review or audit; Description: Reviews of agencies responsible for case management of the HCBS waiver, including a review of a sample of case managers' records to ensure timeliness and completeness. Quality assurance mechanism: Supervisory review of beneficiary assessments or plans of care; Description: Beneficiary-oriented mechanisms: Review conducted by case managers' supervisors or at the state level of documents related to waiver beneficiaries' assessed needs and identified services. Quality assurance mechanism: Analysis of automated waiver program data; Description: Review or monitoring of electronic version of client data, such as assessments, reassessments, and care plans. Quality assurance mechanism: Internal or external evaluation of waiver program; Description: Program review of the procedures for waiver beneficiary assessments, development of plans of care, and delivery of waiver services; review may be conducted by state agency officials or by contractor. Source: CMS. Note: GAO analysis of the most recent waiver application for the 15 largest HCBS waivers serving the elderly and the most recent annual state reports for 52 waivers serving the elderly submitted to CMS regional offices as of July 2002. [End of table] States Provide CMS Limited Information about Their Quality Assurance Approaches: Because CMS has not provided detailed guidance to states on federal requirements for HCBS quality assurance systems, the waiver applications and annual reports submitted by states to CMS for waivers serving the elderly often contained little or no information on state mechanisms for ensuring quality, raising a question as to whether CMS had adequate information to approve or renew some waivers. * Waiver applications. Our review of the most current waiver applications for the 15 largest waivers serving the elderly found that many states provided CMS limited information about how they plan to protect the health and welfare of beneficiaries.[Footnote 22] Eleven of the 15 states cited three or fewer quality assurance mechanisms. For example, New York's application only contained information about the state licensure and certification requirements for its waiver services. None of these 11 applications included well-recognized quality assurance tools such as complaint systems, corrective action plans, sanctions, or beneficiary satisfaction surveys. The remaining 4 states each identified six to eight quality assurance approaches, including at least one of these four important tools. As shown in table 3, the two mechanisms most frequently cited by states were (1) licensure for some HCBS waiver providers, such as home health agencies and residential care providers, and (2) case management. Table 3: Quality Assurance Mechanisms Frequently Cited in Waiver Applications and Current Annual State Reports for HCBS Waivers Serving the Elderly: Quality assurance mechanism: Case management agency reviews or audits; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 8; Annual state report: number of states citing mechanism[A]: (n=40 states): 30. Quality assurance mechanism: Waiver provider or direct-care staff reviews or audits; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 1; Annual state report: number of states citing mechanism[A]: (n=40 states): 24. Quality assurance mechanism: Licensure, certification, or other state standards; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 15; Annual state report: number of states citing mechanism[A]: (n=40 states): 22. Quality assurance mechanism: Waiver beneficiary satisfaction surveys or interviews; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 2; Annual state report: number of states citing mechanism[A]: (n=40 states): 21. Quality assurance mechanism: Case management; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 12; Annual state report: number of states citing mechanism[A]: (n=40 states): 20. Quality assurance mechanism: Training and technical assistance; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 0; Annual state report: number of states citing mechanism[A]: (n=40 states): 20. Quality assurance mechanism: On-site visits of waiver beneficiaries; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 1; Annual state report: number of states citing mechanism[A]: (n=40 states): 16. Quality assurance mechanism: Complaint systems; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 1; Annual state report: number of states citing mechanism[A]: (n=40 states): 13. Quality assurance mechanism: Supervisory review of waiver beneficiary assessments or plans of care; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 7; Annual state report: number of states citing mechanism[A]: (n=40 states): 11. Quality assurance mechanism: Corrective action plans; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 2; Annual state report: number of states citing mechanism[A]: (n=40 states): 9. Quality assurance mechanism: Sanctions and penalties; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 1; Annual state report: number of states citing mechanism[A]: (n=40 states): 7. Quality assurance mechanism: Analysis of automated waiver program data; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 1; Annual state report: number of states citing mechanism[A]: (n=40 states): 4. Quality assurance mechanism: Internal or external evaluations of waiver program; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 0; Annual state report: number of states citing mechanism[A]: (n=40 states): 4. Quality assurance mechanism: Waiver program manuals; Waiver application: number of states citing mechanism (n=15 largest state waivers for the elderly): 0; Annual state report: number of states citing mechanism[A]: (n=40 states): 4. Source: CMS. Note: GAO analysis of the most recent waiver application for the 15 largest HCBS waivers serving the elderly and the most recent annual state reports for 52 waivers serving the elderly submitted to CMS regional offices as of July 2002. [A] We reviewed 70 annual state waiver reports from 49 states and the District of Columbia. Fifty-two of these annual reports from 40 states contained some information about states' monitoring processes for HCBS waivers serving the elderly. States may have more than one HCBS waiver serving the elderly. [End of table] * Annual waiver reports. Compared to waiver applications, annual state waiver reports identified more quality assurance mechanisms for waivers serving the elderly. The quality assurance mechanisms states' annual reports cited most frequently included (1) audits of case management agencies, (2) reviews of provider or direct-care staff, (3) licensure and certification of providers, (4) beneficiary satisfaction surveys or interviews, (5) case management, and (6) training and technical assistance. As shown in table 3, these six mechanisms were mentioned by at least half of the 40 states that provided such information.[Footnote 23] However, as was the case with most of the 15 waiver applications we reviewed, complaint systems, corrective action plans, and sanctions were identified less frequently. For example, only 13 of the 40 states identified complaint systems for waivers serving elderly beneficiaries as a monitoring tool in their annual waiver reports.[Footnote 24] Responding to beneficiary complaints is a key element in protecting vulnerable nursing home residents and home health beneficiaries. Moreover, 18 of the elderly waiver reports (26 percent) from 12 states did not include a description of the process for monitoring the standards and safeguards under the waiver, as required on the reporting form. State officials in South Carolina, Texas, and Washington informed us they use a wider range of quality assurance mechanisms in their waiver programs than were described in either their waiver application or their annual state waiver report. Officials in Washington informed us they use 12 of the 14 mechanisms identified in table 3, yet they included only 2 of these on their application and 3 in their most recent annual report. For example, Washington operates a complaint system for waiver providers but did not refer to this approach in its waiver application or annual report. On the other hand, only Washington included reviews or audits of case managers or case management agencies in its application or annual report, yet all three states provided information on their use of this quality assurance tool during our interviews. States' formal reports to CMS on their quality assurance mechanisms may therefore understate the nature and extent of their oversight approaches. State Oversight and Quality Issues in Waivers Serving the Elderly Have Been Identified by CMS Regional Offices and States: Although information on the quality of care provided in the 79 waiver programs serving the elderly is limited, state oversight problems were identified by CMS regional offices or states in 15 of 23 waivers and quality-of-care problems in 36 of 51waivers that we were able to examine.[Footnote 25] We were unable to analyze findings related to 28 waivers serving the elderly for various reasons: they lacked a current regional office review or a waiver review report was never finalized,[Footnote 26] the annual state waiver report lacked the relevant information, or the waivers were too new to have an annual state report. Because of incomplete information and the absence of current reviews for many of the active waivers, the extent of quality- of-care problems is unknown. State Oversight Weaknesses: CMS regional office reviews or state audits identified weaknesses in state oversight for waivers serving the elderly in 15 of the 23 waivers we examined. In some cases, the waiver programs did not have essential oversight systems or processes in place. For example, in the case of a Virginia assisted living waiver that had over 1,250 beneficiaries, the Philadelphia regional office found several state oversight problems, including (1) no system in place to track the completion of the required annual resident assessments, (2) insufficient monitoring to ensure that beneficiaries were cared for in settings able to meet their needs, (3) insufficient monitoring to ensure that state standards were met for basic facility safety and hygiene, and (4) failure to inspect medication administration records sufficiently to ensure that medication was being dispensed safely and by qualified staff. The regional office identified serious lapses in Virginia's oversight of the waiver and the protection of beneficiaries, resulting in both medical and physical neglect of waiver beneficiaries. On the basis of the regional office review findings, HCFA allowed the waiver to expire in March 2000. In other cases, states may have had an oversight system or process in place, but they were determined to be inadequate. Five state audit agency reports we reviewed identified inadequate monitoring systems in state waiver programs. For example, Connecticut had a policy in place for monitoring and evaluating its HCBS waiver program, but, from January 2000 through March 2001 it conducted no quality assurance reviews of the agencies it contracted with to coordinate and manage services for waiver beneficiaries. Quality-of-Care Related Problems: CMS regional office reviews and states' annual waiver reports identified quality-of-care related problems in 36 of 51 HCBS waiver programs for the elderly that we were able to examine. Specifically, they found weaknesses in the delivery of key elements of home and community-based services that could affect waiver beneficiaries' health and welfare (see table 4). Typically, the reports did not provide sufficient detail to demonstrate the impact of these weaknesses on waiver beneficiaries. Consequently, few, if any, specific cases of beneficiary harm were identified. Table 4: Frequently Cited Quality-of-Care Problems Identified by CMS Regional Offices or States in HCBS Waivers Serving the Elderly: Problem area: Provision of authorized or necessary services; Example: Beneficiary not receiving services identified as being needed; Number of 51 waivers in which problem was identified: 20. Problem area: Plan of care; Example: Beneficiary's care needs not addressed in plan of care; Number of 51 waivers in which problem was identified: 20. Problem area: Case management; Example: Case manager for HCBS waiver program not providing ongoing assessment and monitoring of waiver beneficiaries or inadequate follow-up of changes in beneficiaries' care needs; Number of 51 waivers in which problem was identified: 20. Problem area: Staffing; Example: Insufficient number of staff to provide adequate care or staff not having appropriate credentials or training to provide care; Number of 51 waivers in which problem was identified: 12. Problem area: Assessment; Example: Beneficiary's needs not assessed or reassessment not completed in a timely manner; Number of 51 waivers in which problem was identified: 11. Problem area: Documentation of service delivery; Example: Incomplete record of waiver services provided to beneficiary; Number of 51 waivers in which problem was identified: 8. Problem area: Training; Example: Case managers identified as needing additional training on Medicaid eligibility; Number of 51 waivers in which problem was identified: 8. Problem area: Quality assurance or quality of care; Example: HCBS waiver program lacked a formal quality assurance system; poor quality of care or services were identified; Number of 51 waivers in which problem was identified: 7. Problem area: Medication; Example: Unable to document that facilities providing care to waiver beneficiaries dispensed medication safely and by qualified staff; Number of 51 waivers in which problem was identified: 4. Source: CMS. Notes: GAO analysis of CMS regional office final waiver review reports for HCBS waivers serving the elderly issued from October 1998 to May 2002 and the most recent annual state waiver reports for 51 waivers serving the elderly. [End of table] Fifteen waivers serving the elderly had no problems identified in their regional office reviews or annual state reports; the remaining 36 waivers had problems related to quality of care. When both the CMS regional office and the state identified a waiver as having the same type of problem, we counted that problem only once. The most frequently identified quality-of-care problems in waivers serving the elderly involved failure to provide authorized or necessary services, inadequate assessment or documentation of beneficiaries' care needs in the plan of care, and inadequate case management. * Provision of authorized or necessary services. Identified problems included (1) services identified in plans of care not rendered, (2) inadequate nutrition provided to waiver beneficiaries, and (3) discontinuation of services without adequate notice to beneficiaries. For example, CMS's Dallas regional office found that significant numbers of Oklahoma waiver beneficiaries did not receive personal care services from their direct-care provider--4,303 beneficiaries (27 percent) received none of their authorized personal care services and 7,773 beneficiaries (49 percent) received only half of their authorized services. While the consequences for beneficiaries were not identified in this review, failure to provide authorized needed services may result in harm and could affect the continued ability of beneficiaries to be cared for at home. * Plan of care. Issues included plans of care that (1) insufficiently addressed the needs of waiver beneficiaries, (2) were not completed or updated appropriately, and (3) were missing from beneficiaries' files. In the review of one of the Florida waivers, CMS's Atlanta regional office staff found several instances where needs identified through individual assessments, including significant changes in waiver beneficiaries' conditions, were not addressed in the plan of care, a situation that could lead to beneficiaries not receiving the necessary services. Without an appropriate plan of care to direct the type and amount of services to be delivered, the waiver beneficiary may not receive an adequate level of care. * Case management. Examples of case management problems included case managers who (1) were unaware of beneficiaries having lapses in delivery of care, (2) were not always aware of procedures or protocols for reporting abuse, neglect, or exploitation, (3) failed to complete resident assessments--service plans were either incomplete or inappropriate, and updates to plans of care were late, or (4) did not always appear to have a clear understanding of service definitions or requirements of the waiver or Medicaid program. CMS Guidance to States and Oversight Of HCBS Waivers Are Inadequate to Ensure Quality Care: CMS has not developed detailed guidance for states on appropriate quality assurance approaches as part of the initial waiver approval process. Moreover, although CMS oversight has identified some quality problems, it does not adequately monitor HCBS waiver programs or the quality of care provided to waiver beneficiaries for waivers serving the elderly as well as those serving other target populations.[Footnote 27] CMS does not hold its regional offices accountable for conducting and documenting periodic waiver reviews, nor does CMS hold states accountable for submitting annual reports on the status of quality in their waivers. As of June 2002, about one-fifth of the 228 waivers in place for 3 years or more had either never been reviewed or were renewed without a review.[Footnote 28] We found that the reviews varied considerably in the number of beneficiary records examined and the method of determining the sample, potentially limiting the generalizability of findings. According to CMS regional office staff, the allocation of staff resources and travel funding levels have at times impeded the scope and timing of their reviews. In addition, some regional office staff told us that limited travel funds have resulted in the substitution of more limited desk reviews for on-site visits and in the conduct of reviews with one staff member when two would have been preferable. CMS Lacks Detailed Guidance for States on the Necessary Components of a Quality Assurance System: CMS has a number of initiatives under way to generate information and dialogue on quality assurance approaches, but the agency's initiatives stop short of (1) requiring states to submit detailed information on their quality assurance approaches when applying for a waiver or (2) stipulating the necessary components for an acceptable quality assurance system. CMS recognizes that insufficient attention has been given to the various mechanisms that states could and should use to monitor quality in their waiver programs. As described in appendix VI, the initiatives CMS has under way include identification of strategies that states are currently using to monitor and improve quality in home and community-based care, distribution of a guide on quality improvement and assessment mechanisms for states and regional offices, and provision of a variety of technical assistance and resources to states. The agency also has implemented a new HCBS waiver quality review protocol for use by regional offices in assessing whether state waivers should be renewed.[Footnote 29] Regional office staff told us that some states have begun to modify their approaches to quality assurance in HCBS waivers based on the use of the new waiver review protocol. For example, Washington officials established a new quality assurance unit within the agency that oversees its waiver for the elderly. In May 2002, CMS also introduced a voluntary application template for its new consumer-directed HCBS waiver that asks for a detailed description of states' quality assurance and improvement programs, including (1) the frequency of quality assurance activities, (2) the dimensions monitored, (3) the qualifications of quality assurance staff, (4) the process for identifying problems, including sampling methodologies, (5) provisions for addressing problems in a timely manner, and (6) the system for handling critical incidents or events. While these CMS activities are intended to facilitate the development of HCBS-related quality assurance approaches, they do not constitute a consistent set of minimum requirements and guidance for states' use to obtain approval for their HCBS programs. CMS Is Not Holding Regional Offices or States Accountable for Oversight of HCBS Waiver Quality: In addition to the lack of detailed guidance for states, CMS is not holding its own regional offices or states accountable for oversight of the quality of care provided to individuals served under HCBS waivers. CMS regional offices are expected to conduct periodic waiver reviews to determine whether states are protecting the health and welfare of waiver beneficiaries. Annual state reports are required by statute, and CMS regulations indicate that they are intended to play a key role in determining whether a waiver should be renewed.[Footnote 30] We found that regional offices are neither conducting waiver reviews prior to renewal nor obtaining complete annual state reports in a timely manner. As a result, CMS has not fully complied with the statutory and regulatory requirements that condition the renewal of HCBS waivers on states fulfilling their assurances that necessary safeguards are in place to protect the health and welfare of waiver beneficiaries. CMS Regional Offices Often Are Not Conducting Timely Reviews of State HCBS Waivers: Most CMS regional offices have not conducted timely reviews of the state agencies administering waivers serving the elderly and other target populations or completed reports to document the results of their reviews. Periodic on-site reviews are used to determine, among other things, whether a state is ensuring the health and welfare of waiver beneficiaries. Guidance from CMS headquarters instructs the regional offices to conduct reviews before the first renewal of a waiver at the end of 3 years and within 5 years for subsequent waiver renewals. Eighteen percent of all HCBS waivers (42 of 228) that have been in place for 3 years or more as of June 2002 either have never been reviewed by the regional offices or had not been reviewed prior to their last waiver renewal. Approximately 132,000 beneficiaries were served by these 42 waivers in 1999. Fourteen of the 42 waivers--serving approximately 37,000 waiver beneficiaries in 1999--have had 10 or more years elapse without a regional office review (see table 5). CMS's Dallas regional office was responsible for 9 of these 14 waivers. Over a 10-year period, a regional office should have conducted at least two reviews for each waiver. The New Mexico AIDS Waiver, initially approved in June 1987, has been in place the longest without ever being reviewed--15 years. CMS officials were aware that regional offices had not reviewed some waivers but were unaware of the extent of the problem. Table 5: HCBS Waivers That Had 10 Years or More Elapse without Ever Having a Regional Office Review or without a Review Prior to the Last Waiver Renewal, as of June 2002: [See PDF for image] Source: CMS. Note: GAO analysis of data provided by CMS, June 2002. [A] The number of HCBS waiver beneficiaries is based on 1999 HCFA Form 372 data. See Harrington, Aug. 2001. [B] Author's estimate. See Harrington, Aug. 2001. [End of table] As of June 2002, based on an analysis of the most recent regional office review that occurred prior to October 2001 for each of the waivers, we found that 23 percent of the review reports (36 of 158) in over half of the regional offices had not been finalized.[Footnote 31] CMS requires its regional offices to prepare a final report on each HCBS review to document their findings, recommendations, and the state response. Without such a final report, there is no formal document to indicate whether a state has fulfilled the required assurances, including those related to the health and welfare of waiver beneficiaries. The New York regional office did not finalize 11 of its 12 reviews, dating back to 1998, and the San Francisco regional office did not finalize 7 of its 13 reviews, 1 of which was for a review that occurred in 1990. Without a final report documenting the review results, CMS cannot be assured that, if problems were identified, they were appropriately addressed. CMS Does Not Obtain Timely and Complete State Annual Waiver Reports: Many state annual waiver reports submitted to CMS regional offices are neither timely nor complete. During the interval between regional office reviews, the required annual state waiver reports provide key information on how states monitor beneficiaries' quality of care and on any quality-of-care related problems. According to regional office officials, states routinely fail to submit these annual reports within the required time frame--within 6 months after the period covered. In August 2000, officials in CMS's Philadelphia regional office reported that they had current annual state reports for less than half (11 of 28) of the waiver programs in their region. Our review of the most recent annual state reports for 70 of 79 HCBS waivers serving the elderly confirmed that producing these reports remains a problem: (1) reports for more than a third of the waivers were at least 1 year late- -the most recent report from one of Louisiana's HCBS waivers was for calendar year 1997, (2) reports for approximately one-fourth of the waivers provided no information on whether deficiencies had been identified through the monitoring processes,[Footnote 32] and (3) five reports indicated that deficiencies had been identified but provided no additional information about the nature of or response to the problems. [Footnote 33] CMS headquarters has no central repository for annual state reports but is in the process of establishing a centralized database for state report information sometime in 2003, a development that could facilitate ongoing monitoring of the timeliness and completeness of these reports. Extent of Oversight Weaknesses Evident in 15 Largest Waivers Serving the Elderly: Our analysis of CMS's oversight activities for the 15 largest HCBS waivers serving the elderly demonstrates the extent of oversight weaknesses. Overall, 8 of the 10 CMS regional offices provided inadequate oversight for 13 of these 15 largest state waivers for the elderly, which, in 1999, served about 215,000 beneficiaries--over half (57 percent) of the total elderly waiver beneficiary population at that time (see table 6). We found that: * Four of the 15 HCBS waivers were not reviewed in a timely manner by the CMS regional office--none of the 4 had reviews for 8 or more years and yet were renewed.[Footnote 34] * Four of the 15 waivers had no waiver review final report completed by the regional office. Two of the reviews occurred in 1999, and for the remaining 2 waivers the regional office could not tell us the date of the reviews or whether a final report was available. * Four of the 15 waivers lacked a timely annual state report to the regional office. As of April 2002, the most recent annual report for these 4 waivers was either for the waiver period ending August 1999 (1 waiver) or September 2000 (3 waivers). * Seven of the 15 waivers had annual state reports that were incomplete because they either lacked information on their quality assurance mechanisms or on whether deficiencies had been identified. Table 6: Status of CMS and State Monitoring for the 15 Largest HCBS Waivers Serving the Elderly: New York regional office: State: New York; Number of waiver beneficiaries[A]: 19,732; CMS waiver review not timely or report not finalized: Yes; Annual state report not timely or documentation insufficient[B]: Yes. Philadelphia regional office: State: Virginia; Number of waiver beneficiaries[A]: 10,514; CMS waiver review not timely or report not finalized: No; Annual state report not timely or documentation insufficient[B]: Yes. Atlanta regional office: State: South Carolina; Number of waiver beneficiaries[A]: 14,361; CMS waiver review not timely or report not finalized: Yes[C]; Annual state report not timely or documentation insufficient[B]: Yes. State: Georgia; Number of waiver beneficiaries[A]: 14,018; CMS waiver review not timely or report not finalized: No; Annual state report not timely or documentation insufficient[B]: Yes. State: Florida; Number of waiver beneficiaries[A]: 13,762; CMS waiver review not timely or report not finalized: No; Annual state report not timely or documentation insufficient[B]: Yes. State: Kentucky; Number of waiver beneficiaries[A]: 13,339; CMS waiver review not timely or report not finalized: No; Annual state report not timely or documentation insufficient[B]: Yes. State: North Carolina; Number of waiver beneficiaries[A]: 11,159; CMS waiver review not timely or report not finalized: Yes[C]; Annual state report not timely or documentation insufficient[B]: Yes. Chicago regional office: State: Ohio; Number of waiver beneficiaries[A]: 26,135; CMS waiver review not timely or report not finalized: No; Annual state report not timely or documentation insufficient[B]: No. State: Illinois; Number of waiver beneficiaries[A]: 17,396[D]; CMS waiver review not timely or report not finalized: Yes; Annual state report not timely or documentation insufficient[B]: Yes. State: Wisconsin; Number of waiver beneficiaries[A]: 13,900; CMS waiver review not timely or report not finalized: Yes; Annual state report not timely or documentation insufficient[B]: No. Dallas regional office: State: Texas; Number of waiver beneficiaries[A]: 27,978; CMS waiver review not timely or report not finalized: Yes; Annual state report not timely or documentation insufficient[B]: Yes. Kansas City regional office: State: Missouri; Number of waiver beneficiaries[A]: 20,821; CMS waiver review not timely or report not finalized: Yes; Annual state report not timely or documentation insufficient[B]: No. Denver regional office: State: Colorado; Number of waiver beneficiaries[A]: 11,481; CMS waiver review not timely or report not finalized: Yes; Annual state report not timely or documentation insufficient[B]: No. Seattle regional office: State: Oregon; Number of waiver beneficiaries[A]: 26,410; CMS waiver review not timely or report not finalized: No; Annual state report not timely or documentation insufficient[B]: Yes. State: Washington; Number of waiver beneficiaries[A]: 25,718; CMS waiver review not timely or report not finalized: No; Annual state report not timely or documentation insufficient[B]: No. Source: CMS. Note: GAO analysis of data provided by CMS, June 2002 and the most recent annual state waiver reports. The 15 largest HCBS waivers serving the elderly are based on the number of beneficiaries. [A] The number of HCBS waiver beneficiaries is based on 1999 HCFA Form 372 data. See Harrington, Aug. 2001. [B] The annual report is required by statute and CMS directs states to (1) submit such reports within 6 months after the period covered, and (2) include information on how the state implements, monitors, and enforces its health and welfare standards and the waiver's impact on the health and welfare of beneficiaries. [C] The CMS regional office could not provide the date that the last waiver review was conducted or specify whether a report had been finalized. [D] Author's estimate. See Harrington, Aug, 2001. [End of table] Scope and Duration of Regional Office Waiver Reviews Are Limited: The limited scope and duration of periodic regional office waiver reviews raise a question about the confidence that can be placed in findings about the health and welfare of waiver beneficiaries. CMS regional offices conduct reviews using guidance provided by headquarters. The guidance instructs regional office staff to review beneficiary records; interview waiver beneficiaries, primary direct- care staff of waiver providers, and case managers; and observe waiver beneficiaries and the interaction between the beneficiary and direct- care staff. This guidance was updated in January 2001 when use of the new HCBS waiver quality review protocol became mandatory. However, the new protocol does not address important operational issues such as: * an adequate sample size or sampling methodology for the beneficiary record reviews and interviews to provide a basis for generalizing the review findings; * whether the sample should be stratified according to the different groups served under the waiver (i.e., for a waiver serving both the elderly and the disabled, selecting a stratified sample based on the proportion of persons aged 65 and over and those aged 18 to 64 with disabilities); and: * the appropriate duration of an on-site review, taking into consideration the number of sites and beneficiaries covered in the waiver. Our analysis of regional office review reports for 21 HCBS waivers serving the elderly found that the reviews varied considerably in the number of beneficiary records evaluated and their method of determining the sample, potentially limiting their ability to generalize findings from the sample to the universe of waiver beneficiaries.[Footnote 35] Specifically, we found a wide range of sample sizes in 15 of the 21 regional office reviews that included such information. The sample sizes for record reviews ranged from 14 beneficiaries (of 73 served) in the Boston regional office review of the Vermont waiver to 100 beneficiaries (of 24,000 served) in the Seattle regional office review of the Washington waiver. (See app. VII for a summary of the sample sizes in the regional office reviews.) Eleven of the 15 CMS waiver review reports included information on the specific number of beneficiaries interviewed or observed during the review; however, we could not determine whether beneficiary interviews or observations had been conducted in other waiver reviews. The method by which the beneficiary record review samples were selected varied, with some regional offices using randomized sampling methods, some basing their sample on geographic location, and others reporting no method of sample selection. For most of these same 15 waivers serving the elderly, we found that the regional staff typically spent 5 days conducting the waiver review- -regardless of the number of waiver beneficiary records sampled or the overall size of the waiver. However, the Seattle regional office staff conducted only three reviews in the past 4 years, targeting its largest HCBS waivers. For example, the regional office has spent 3 to 4 weeks per waiver for the on-site portion of the review and another week for state agency interviews and review of documents. Generally, the number of beneficiary records reviewed and beneficiaries interviewed is dependent on (1) the number of days allocated to the waiver review by a regional office and (2) the number of regional office staff members available. Limited Regional Office Resources Available for Oversight of HCBS Waivers: The limited number of assigned staff and available clinical specialists, coupled with insufficient travel funds allocated to regional office oversight of HCBS waivers, have contributed to the timeliness and scope problems we identified. According to regional offices, the level of attention given to HCBS waiver oversight, including periodic reviews when waivers come up for renewal, is at the discretion of regional office management and competes with other workload priorities.[Footnote 36] In August 2000, some regional office officials formally communicated to HCFA headquarters their concern that the agency was not devoting sufficient resources to properly monitor the quality of HCBS waiver programs. Regional office officials responsible for waiver oversight told us that the number of staff available for waiver oversight has not kept pace with the growth in the number of waivers and beneficiaries served and that resource issues remain a key challenge for waiver oversight. We found that CMS regional offices differed substantially in the number of staff assigned to waiver oversight and the extent to which staff with clinical or program expertise were assigned to waiver oversight. According to Dallas, Denver, and Philadelphia regional office staff, the level of resources allocated by the regional offices for such reviews dictated the number of waiver beneficiary records reviewed or beneficiary interviews conducted. Six of the 10 regional offices had two or fewer full-time-equivalent (FTE) staff assigned to monitoring HCBS waivers (see table 7).[Footnote 37] Moreover, we found that the number of regional office staff assigned to monitoring HCBS waivers bore little relationship to the waiver workload. For example, the Chicago regional office had six FTE staff to monitor 34 HCBS waivers with 131,902 waiver beneficiaries, while the Dallas regional office had one-and-a-half FTE staff for 28 HCBS waivers with 63,614 waiver beneficiaries. Until a few years ago, one person in the Philadelphia regional office was assigned to oversee HCBS waivers--despite growth in the number and size of the region's HCBS waivers over the past decade.[Footnote 38] Table 7: Number and Specialty of CMS Regional Office Staff Assigned to Oversee HCBS Waivers: CMS regional office: Boston; Number of HCBS waivers (number of waivers for the elderly ): 26 (9); Number of HCBS waiver beneficiaries[A] (number of elderly waiver beneficiaries): 45,390 (20,190); Number of FTE staff assigned to oversee waivers: 1; Specialist staff assigned to oversee waivers: No. CMS regional office: New York; Number of HCBS waivers (number of waivers for the elderly ): 15 (3); Number of HCBS waiver beneficiaries[A] (number of elderly waiver beneficiaries): 69,390 (24,319); Number of FTE staff assigned to oversee waivers:

The Justia Government Accountability Office site republishes public reports retrieved from the U.S. GAO These reports should not be considered official, and do not necessarily reflect the views of Justia.