#2006-19 October 2006 Bridging the Gaps: State and Local Strategies for Ensuring Backup Personal Care Services by Dorie Seavey, PhD Vera Salter, PhD Paraprofessional Healthcare Institute The AARP Public Policy Institute, formed in 1985, is part of the Policy and Strategy Group at AARP. One of the missions of the Institute is to foster research and analysis on public policy issues of importance to mid-life and older Americans. This publication represents part of that effort. The views expressed herein are for information, debate, and discussion, and do not necessarily represent official policies of AARP. © 2006, AARP. Reprinting with permission only. AARP, 601 E Street, NW, Washington, DC 20049 http://www.aarp.org/ppi Foreword It goes virtually without saying these days that people with disabilities prefer to remain in their own homes, and go to great lengths to avoid life in an institution. As public programs move toward not only accommodating but encouraging this trend, increasing numbers of people are receiving services in their homes, many hiring and directing their own providers. Many people, even with severe disabilities, now receive services and supports in private homes, with Medicaid as the primary source of public funding. But what happens if a home care worker fails to show up? As people increasingly rely on these workers for vital mobility and personal hygiene functions, their need for a reliable workforce is imperative. Unfortunately, state systems to ensure that backup services are readily available to people who receive Medicaid home and community-based services are not well developed. Chronic shortages of qualified personal care workers make it difficult to find and retain a basic supply of reliable providers—much less to ensure an adequate and readily identifiable supply of backup or emergency workers. Yet without backup systems in place, people with disabilities risk humiliation, injury, or even loss of independence and self-determination if reliable home care cannot be found. To learn more about current and emerging practices to ensure the adequacy of backup worker systems, the AARP Public Policy Institute commissioned the Paraprofessional Healthcare Institute to undertake a study of state practices. The results reported in this paper catalog existing systems and provide guidance to states that are attempting to improve their backup systems. This paper complements a companion report, also by the Paraprofessional Healthcare Institute, that analyzes state and local practices and initiatives to improve the wages and benefits received by personal care workers. Together, these two papers highlight critical issues that need to be addressed to ensure the viability of home care services under Medicaid for people with disabilities. Enid Kassner and Wendy Fox-Grage Senior Policy Advisors AARP Public Policy Institute Table of Contents Executive Summary ............................................................................................................... i I. Introduction ....................................................................................................................... 1 II. Methodology ..................................................................................................................... 2 III. Background..................................................................................................................... 3 A. Personal Care Services: Overview and Examples of Reported Inadequacies in Backup Services ................................................................................................................................... 3 B. Evolving Federal Oversight ............................................................................................... 5 C. Court Oversight of the Delivery of Medicaid Personal Care Services: The Case of Arizona.................................................................................................................................... 6 IV. Findings ........................................................................................................................... 6 A. State Strategies for Requiring Backup Service Delivery and Provider Monitoring .......... 7 B. State Strategies for Tracking and Monitoring that Authorized Services Are Delivered .... 9 C. Models for Creating Backup Management Systems......................................................... 13 V. Discussion of Findings and Conclusions ...................................................................... 20 APPENDIX A: Supplemental Questions to the 2005 National Survey of State Initiatives on the Long-Term Care Direct-Care Workforce .................................................................. 27 APPENDIX B: Responses to Supplemental Survey Questions to the 2005 National Survey of State Initiatives on the Long-Term Care Direct-Care Workforce........................ 28 Executive Summary Introduction People with disabilities face a particular kind of risk when personal care services (PCS) authorized and funded by Medicaid are not delivered. In some cases, these people may not receive the support they need, such as assistance that enables them to go to work or to maintain their independence and self-direction. In other cases, without the timely availability of adequate care, these individuals can find themselves at risk of emotional distress and even physical harm resulting from, for example, going for hours without being transferred from a bed to a wheelchair or to the bathroom, skipping medications, getting insufficient food and water, and being unable to attend to personal hygiene. Regardless of whether PCS backup is a serious, chronic problem in a particular region—because of, for example, labor shortages and the high cost of using temporary agencies—or simply the normal episodic absenteeism experienced by any human service delivery system, two related questions deserve attention: 1. What steps can states take to better track and monitor the extent to which authorized services are actually delivered? 2. What can states do to support the development of effective backup management systems with sufficient capacity at the provider, regional, or state levels? This report examines state and local initiatives to ensure that effective mechanisms and safeguards are in place to identify and respond to service delivery failures that require backup coverage for Medicaid personal care services. It has two purposes: (1) to identify the main types of state and local practices and initiatives in the area of improving backup service for PCS; and (2) to explore key issues and implications for states to consider as they work to improve this critical quality dimension of Medicaid PCS. Methodology Three main methods were used to collect the information presented in this report. In January 2005, a written survey was sent to state officials with responsibility for Medicaid long-term care (LTC) and aging programs that contained supplementary questions designed to identify state practices in tracking the provision of authorized services and providing backup or emergency PCS. State officials also were asked to identify “best systems” in their state that provide backup services or track authorized and delivered services. In addition, follow-up telephone interviews were conducted in 12 states with state and local officials. Finally, relevant secondary sources of state information were reviewed. Findings States can fulfill their responsibility to ensure that PCS are delivered by using three complementary strategies: 1. Require that provider agencies immediately identify service breakdowns and make necessary backup services available, and establish backup service policies that support self-directing consumers. i 2. Track and monitor whether providers fulfill these requirements and whether backup service policies are effective, taking corrective action when they are not. 3. Support the development of backup management systems and programs, whether at the provider, regional, or state level. The report describes current and emerging state practices in the above three areas. While we had hoped to be able to provide information on “best practices,” our assessment is that ensuring backup service for PCS (including related tracking and monitoring issues) is at an early stage of development, with few examples of successful approaches that are generalizable and/or that have been in existence long enough for thorough assessment. Indeed, of the 38 respondents to the survey conducted for this report, only four self-reported a “best system” backup program, and just seven reported an exemplary tracking system. While this report indicates the direction in which the above three strategies are evolving across the states, further investigation is required to determine the most promising practices. 1. State Strategies for Requiring Backup Service Delivery and Provider Monitoring States can use an array of legislative and regulatory tools to require agencies or designated intermediaries to identify gaps in service and provide backup aide and attendant services. These tools include statutory regulations, administrative codes and licensure rules, and contracting provisions. a. Current State Practice. Most states rely on general requirements that direct agency providers to deliver the services that they have contracted to deliver and that are authorized in approved care plans. Such requirements implicitly contain the expectation that providers will deliver backup or emergency services when necessary. b. Emerging State Practice. A few states have begun to adopt detailed and specific statutory, administrative, and/or contract language specifying uniform standards, including required response times, for agency providers for identifying service gaps and providing backup services if services are not delivered. 2. State Strategies for Tracking and Monitoring that Authorized Services Are Delivered More than 80 percent of states responding to the survey report having a system in place to track and/or monitor whether authorized Medicaid PCS are delivered. How effective these various review systems actually are in detecting and monitoring service failure and gaps in coverage is clearly a function of how well they are implemented, how often reviews are conducted, and what is done with the information the reviews yield. a. Current State Practice. About three-quarters of states describe systems that rely principally on review of case management records, sometimes combined with periodic review by state agencies using sampling or reconciliation methods. b. Emerging State Practice. A few states have implemented consolidated reporting systems where the tracking takes into account not just a sample of cases, but complete encounter data. These systems are often automated. ii 3. Models for Creating Backup Management Systems States identified five different, although not mutually exclusive, approaches to creating backup coverage for Medicaid PCS: a. Development of consumer backup plans for consumer-directed care. In Medicaid programs where consumers directly hire their own PCS workers, the responsibility for developing backup plans typically is placed directly on consumers by their case managers. At the same time, various kinds of local or state support and arrangements relating to backup—such as pools of emergency providers who are prescreened or the ability to pay a premium to a provider who arrives on short notice—may be instrumental in enabling consumers to carry out their self-direction role. b. Provider agency gap-coverage procedures and preventive measures. To minimize the impact of service disruption on consumers, agencies can put in place internal procedures and protocols that enable them to respond effectively and in a timely manner to gaps in service coverage to which they are alerted by calls from absent workers or from consumers and their families. c. “Call-off” notification systems. Increasingly, provider agencies are using information technology to automatically track home care worker visits, times of service provision, and hours provided. More complex monitoring systems add a notification feature, meaning that if a call-in from a worker is not received by a scheduled time, the monitoring system notifies the provider agency that the worker is absent. d. Creation of specialized backup agencies and backup pools of PCS workers. Counties, regions, and even groups of providers can develop greater capacity to provide backup services by creating specialized backup agencies and pools. While only a few examples of this approach exist around the country, emerging lessons suggest the importance of the following elements: identifying arrangements that are desirable and comfortable for consumers; designing arrangements that are likely to capture sufficient volume in a local or regional area to make the program cost-effective; working with consumers to conduct successful outreach to other consumers and their families; paying a higher rate of compensation to backup PCS workers; addressing transportation obstacles for backup PCS workers; and committing sufficient service dollars to adequately fund the program. e. Potential use of registries as a source of backup coverage. In at least a dozen states, registries of personal assistance workers either are operating or are under development to help match consumers who need services with workers who need employment. Registries are a potential source of backup coverage or temporary assistance, but this function requires particular features, including in-depth screening of workers; preapproval of workers for payment and removal of other administrative barriers to hiring workers on short notice; round-the-clock access to the registry; and close management and updating of the list of workers who declare themselves to be available for substitute, emergency backup, or respite care work. Discussion of Findings and Conclusions This review of state and local efforts to ensure better backup services suggests several important issues and implications that advocates, policymakers, researchers, and providers may find useful to consider. iii 1. Ensuring backup service should be a required component of any state’s oversight responsibility for publicly financed home and community-based services (HCBS), yet states rarely specify uniform standards, such as required response coverage times for PCS providers and the availability of backup services 24 hours a day, seven days a week, for providing backup if service breaks down for critical PCS. Such standards, as well as policies and protocols for timely response, need to be included in state statutes, administrative rules, and standard contractual requirements for all agencies providing HCBS. These standards also need to encompass consumer-directed services. 2. State quality assurance systems with respect to backup tend to be unevenly developed across waiver programs and even less well developed for non-waiver PCS programs. There are often varying levels of automation and use of data-tracking methods across programs to ensure adequate follow-up when things go wrong at the point of service provision. Creating more uniform and integrated quality management systems with a strong backup component is an important need in many states. 3. The vast majority of states rely on periodic review of partial records or samples of records to monitor and track the delivery of authorized services, but it is unclear how well this type of review process can capture and relay reliable and timely information on how often authorized services are actually received by consumers and how often they are not. Across states, there appears to be movement toward fully automated, integrated quality management systems that are tied into state-level Medicaid Management Information Systems (MMIS) in order to conduct payment functions and reconcile the delivery of actual services with those authorized. However, these are retrospective practices that cannot be expected to meet the real-time needs of consumers who are experiencing unreliable service delivery. 4. The growth in consumer-directed PCS raises important issues about the role that states can play in ensuring that consumers have access to backup services beyond informal arrangements with family and friends. While it is critical that self-directing consumers be required to develop backup plans, the state can play an important role in making these plans effective by supporting consumers with adequate numbers of well-trained care managers, developing registries of available prescreened workers, allowing for the payment of family members, developing backup pools, and removing barriers to payment of workers who are hired on short notice. At this time, such comprehensive approaches are generally not in place. 5. While most of the programs and policies described in this report are just emerging, experience to date across the states reveals a variety of ways in which state government and other stakeholders can encourage the development of greater backup coverage capacity at both local and regional levels. Pilots and demonstration projects can be used to explore a number of ideas that appear to have merit, including the following: • Greater use of automated Internet and telephone-based backup management systems that record and post worker “call-offs” and absences, and perhaps even link to available backup workers. iv • Development of specialized backup agencies, possibly even pooling backup workers and consumers across different long-term settings in order to create sufficient demand and to employ workers who want to work more hours. • Adaptation of the registry model to create backup service capacity for emergencies and prearranged substitute or respite care. This report addresses a concern that is foremost in the minds of individuals and families needing LTC services in the United States today: Can I find a qualified worker to provide the services I need? As states move forward with steps to “rebalance” their LTC systems, shifting the locus of care increasingly to the homes of LTC recipients and non-clinical community care settings, this concern is only likely to grow. As it does, so too will the focus on what steps state governments can take to ensure that backup systems and unified quality management systems are in place that ensure that consumers receive reliable, quality services. Indeed, successful rebalancing hinges on policymakers’ ability to address this vital issue. While most states appear to be at the earliest stages of designing comprehensive approaches to ensuring backup service, policymakers, providers, researchers, consumers, and advocates seeking to improve backup services can draw upon the emerging state-level experience and lessons that this report begins to detail. v I. Introduction Any service-based business or delivery system—for example, a public school district or a child care center—must put in place effective mechanisms and safeguards to respond to worker absences, whether planned or unplanned. People with disabilities face a particular kind of risk when personal care services (PCS) are not delivered. In some cases, people may not receive the support they need, including assistance that enables them to go to work or to maintain their independence and self-direction. In other cases, without the timely availability of adequate care, these individuals can find themselves at risk of emotional distress and even physical harm resulting from, for example, going for hours without being transferred from a bed to a wheelchair or to the bathroom, skipping medications, getting insufficient food and water, and being unable to attend to personal hygiene. Beyond immediate harm and distress, the ultimate risk to long- term care (LTC) recipients is that of institutionalization—in other words, the delivery of PCS may be so unreliable that the beneficiary is forced to move to a nursing facility or some other clinically oriented care setting. The risk of service delivery failure and the resulting need for backup services necessarily increase when the capacity of PCS providers to keep up with growing demand for services is strained—a dynamic that characterizes the current situation. As the use of nursing homes declines in every state and home and community-based care venues increasingly become the setting of choice, the demand for PCS has increased significantly1 and is projected to continue to increase rapidly over the next decade.2 Most states across the country report shortages of direct- care workers, high turnover rates, lack of qualified staff, and difficulty retaining workers.3 In most states, personal care and home care workers earn wages that place them in the bottom 20th percentile of wage distribution—that is, in the realm of low-wage work. Roughly 40 percent of PCS workers lack health insurance.4 These factors have combined to create a home and community-based LTC industry with worker shortages and high rates of “churn,” with turnover typically ranging from 40 to 50 percent annually for home health aides and personal care aides.5 As the primary source of public payment for PCS, the Medicaid program is particularly affected by these issues. Regardless of whether backup is a serious, chronic problem in a particular region—because of, for example, labor shortages and the high cost of using temporary agencies—or simply the normal episodic absenteeism experienced by any human service delivery system, two related questions deserve attention: 1. What steps can states take to better track and monitor the extent to which services authorized through Medicaid and other public programs are actually delivered? 2. What can states do to support the development of effective backup management systems with sufficient capacity at either the provider, regional, or state level? This report examines state and local initiatives to ensure that effective mechanisms and safeguards are in place to identify and respond to service delivery failures that require backup coverage. The report has two main purposes: 1 1. To identify the main types of state and local practices and initiatives in the area of improving backup service for Medicaid PCS, providing more detailed information about those state practices that appear more developed 2. To explore key issues and implications for states to consider as they work to improve this critical quality dimension of Medicaid PCS II. Methodology Three main methods were used to collect the information presented in this report: a written survey sent to state officials with responsibility for Medicaid LTC and aging programs, follow-up telephone interviews with state and local officials, and review of relevant secondary sources of state information. In many cases, the complexity of topics treated in this report resulted in survey respondents making referrals to other contacts within their states for more detail on specific issues and information about effective or innovative initiatives. The report focuses only on Medicaid services and not on those funded by other public programs or paid for by individuals independently using their own resources. 1. State Survey. At the request of the AARP Public Policy Institute (PPI), five supplementary questions were added to the 2005 National Survey of State Initiatives on the Long-Term Care Direct-Care Workforce.6 The survey was sent by e-mail in January 2005, and follow-up was completed by August 2005. The supplementary questions were designed to identify state practices in tracking the provision of authorized services, providing backup or emergency PCS, and setting wage rates for personal care workers (this last issue is treated in a companion AARP PPI report).7 State officials also were asked to identify “best systems” in their state that provide backup services or track authorized and delivered services. (See appendixes A and B for survey questions and responses, respectively.) An additional question about state grievance systems is excluded from the analysis presented in this report because nearly all states report adhering to prescribed Medicaid grievance procedures. Thirty-eight states responded to the initial survey; two of these did not respond to the supplementary section. After additional e-mail and telephone follow-up, two more responses to the supplementary questions were received for a total of 38 overall responses, or a 76 percent response rate. 2. Follow-Up Telephone Interviews. Follow-up telephone interviews were conducted with state officials and local service providers in 12 states: Arkansas, Arizona, California, Colorado, Kansas, New Hampshire, New Jersey, Ohio, Oregon, Pennsylvania, Texas, and Washington. In most states, more than one interview was conducted because of referrals to several state offices for more information; in other instances, “expert” organizations or individuals on particular topics were identified and interviewed. The majority of “follow-up states” were selected because their survey responses indicated a practice regarding emergency backup that merited further investigation, either because it appeared different or innovative or a good example of a common approach found in many states. In addition, several follow-up states were selected because various state or national reports 2 indicated interesting programs or policies in these states. For example, some states were identified in Centers for Medicare & Medicaid Services (CMS) reports as having received federal grants to develop backup PCS. 3. Secondary Research. To find additional information, we searched a number of Web sites that compile state information on home and community-based services (HCBS) for older adults and individuals with disabilities. These include the Web site of the Center for Personal Assistance Services at the University of California–San Francisco, the Web site of the National Association of State Medicaid Directors, the state Medicaid database of the Kaiser Family Foundation, the Web site of the National Governors Association, and the official CMS site.8 In addition, we accessed individual state government Web sites for specific reports and regulatory information. In some cases, we were referred to state-specific reports during follow-up interviews. III. Background A. Personal Care Services: Overview and Examples of Reported Inadequacies in Backup Services 1. Overview. PCS refer to hands-on or cueing assistance with the performance of activities of daily living (ADLs) such as eating, bathing, or dressing, or instrumental activities of daily living (IADLs) such as meal preparation, using the telephone, and transportation.9 PCS help older people and people with disabilities maintain their independence in their own homes and communities. As a result of demographics and consumer preferences, PCS have been growing and now constitute a considerable portion of publicly financed HCBS. Medicaid PCS can reach a beneficiary through one of three channels: (a) through the Personal Care Services option of a state’s Medicaid program, (b) through state Medicaid waivers [1915(c) or 1115], or (c) through the Medicaid home health benefit. Currently, 26 states plus the District of Columbia use the personal care option in their Medicaid state plans to provide at least one type of PCS program to adults.10 All states have waiver programs that provide these services to older adults and/or people with disabilities. In addition to Medicaid, many states provide PCS using state or local funds and/or funds received under the federal Older Americans Act. These state programs frequently provide payments to cover PCS for individuals who do not qualify for Medicaid services either because of income eligibility or because they require lower levels of ADL support. Most states administer Medicaid PCS at a county or regional level, often through contracts with Area Agencies on Aging, Centers for Independent Living, or county “single entry-point agencies.” In Arizona, managed-care program contractors administer services. Four states (California, Oregon, Washington, and Michigan) have public authorities that support independent (and otherwise self-employed) personal care providers, usually serving as their employer of record. Day-to-day administration of these quasi-public intermediaries also takes place at county or regional levels. 3 The actual provision of Medicaid PCS usually takes place in one of two ways. One is through subcontracts with home care or attendant care agencies that hire, place, and supervise PCS workers as well as through subcontracts with residential care and assisted living facilities that in turn employ direct-care workers to care for their residents. The other is through consumer- directed care arrangements wherein the LTC consumer (or his or her surrogate)11 directly hires and supervises the workers. Nearly all states offer at least some consumers the option to direct their own PCS while also offering agency-directed services. A few states provide virtually all their Medicaid PCS through a consumer-directed model (e.g., Oregon and California). 2. Examples of Reported Inadequacies in Backup Services. The problem of ensuring adequate backup service for Medicaid PCS is not well documented. There are no data on the percentage of consumers who have had difficulty securing emergency backup services, the number who have sought nursing home care because of unreliable or inadequate home care, or the hospitalization and mortality rates for home care consumers who experience service gaps. Underreporting may be a factor, since consumers who receive agency-based care sometimes have disincentives to report service failures or non-delivery of care. Some consumers fear that their agency might terminate them rather than have a grievance show up on its records. Others are concerned that, if they complain too much, their case manager might recommend that they be transferred to a nursing home.12 While putting parameters on the problem of inadequate backup systems for PCS is difficult because of a lack of data and reporting, examples of reported inadequacies in (or need for) ensuring backup service include the following: • Medicaid HCBS recipients joining forces in class action lawsuits in several states have made the case that their services are not being reliably or adequately delivered, and that they have been put at risk by service instability and non-delivery.13 • Evidence from the emerging literature on consumer-directed PCS services indicates that inadequate backup services can be a chronic problem. For example, according to a recent CMS Systems Change Grantees Final Report, “[t]he lack of backup systems for workers who are on vacation or not able to work on a scheduled day is one of the most frequent complaints of consumers using consumer-directed services.”14 • A recent survey in Pennsylvania offers an example of information that can be gathered from both personal assistance providers and consumers. The survey found that 93 percent of consumer respondents “felt that it is somewhat difficult to extremely difficult to retain skilled and reliable backup PAs [personal assistants].” More than 21 percent of provider respondents have no backup PCS workers on staff and 46 percent have no backup workers on call.15 Furthermore, a quarter of provider respondents stated that, in a typical month, backup services are required in 31 percent to 50 percent of service provision occasions and roughly a fifth stated that backup is required in more than 50 percent of service occasions. • Several studies of women with disabilities who rely on PCS for personal independence and community living have found high incidences of various forms of abuse by personal assistants in both paid and unpaid care, and in consumer- and agency-directed care.16 The greatest barriers identified by study participants for PCS abuse prevention and 4 management were low wages, shortage of qualified providers, and lack of backup providers. Study participants rated having a backup assistant and being able to choose one’s assistant as the most helpful strategies for preventing or stopping abuse. B. Evolving Federal Oversight Federal statutory and regulatory requirements for ensuring backup service in particular, and service and quality in general, are not highly developed. The federal Medicaid statute specifies a “reasonable promptness” requirement [42 USC §1396a(a)(8)] that has been given more explicit meaning via regulatory interpretation as directing that states must “[f]urnish Medicaid promptly to recipients without any delay caused by the agency’s administrative procedures” [42 CFR § 435.930]. This requirement has been interpreted by the courts as extending beyond the beneficiary’s application process to the provision of services. Beyond the reasonable promptness requirement, HCBS provided under Medicaid 1915(c) waiver programs are subject to the further requirement that states provide “assurances that necessary safeguards have been taken to protect the health and welfare of the recipients of the services” [42 CFR §441.302]. A 2003 report by the U.S. Government Accountability Office (GAO) criticized the federal government’s role in ensuring service delivery and overseeing service quality under Medicaid waiver programs. The study, titled Long-Term Care: Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened, found that more than 70 percent of the Medicaid HCBS waiver programs for the elderly documented one or more quality problems, with one of the most common problems being a failure to provide necessary services. The GAO concluded that the guidance that CMS provides states as well as its oversight of HCBS waivers is inadequate to ensure quality of care for waiver beneficiaries. More specifically, the GAO found the following:17 • As part of the waiver approval process, CMS has not developed detailed guidance or criteria for states on “the necessary components of a quality assurance system to help ensure the health and welfare of waiver beneficiaries.” • CMS has not fully complied with the statutory and regulatory requirements that condition the renewal of HCBS waivers on (a) states submitting required annual reports that include information on state quality assurance approaches and deficiencies identified through state monitoring, and (b) periodic waiver reviews conducted and documented by CMS to determine whether states are satisfying requirements for protecting the health and welfare of waiver beneficiaries. In 2002, CMS launched a new quality initiative, the purpose of which was to compile systematic baseline information concerning state quality assurance/improvement systems for Medicaid HCBS waiver programs.18 However, the project did not inventory states about what they may require from providers or participants regarding backup care arrangements or systems. CMS’s new waiver application and instructions, released as a “final revised working draft” in 2005, do address the backup issue explicitly and establish CMS Review Criteria that seek to assess whether “[t]he state’s approach ensures that there is ready access to emergency back- up/response in the event that the arrangements in a participant’s service plan cannot be employed.”19 While these review criteria fall short of providing detailed guidance for states 5 regarding the essential components of ensuring a backup system, the revised waiver application suggests a heightened federal role in requiring states to have backup services and in holding states accountable for such coverage in the event of service failures. How this federal oversight will be translated into ongoing monitoring at CMS’s regional level, required annual reporting by states, and periodic waiver reviews is not yet clear. C. Court Oversight of the Delivery of Medicaid Personal Care Services: The Case of Arizona Another important source of attention to the issue of ensuring service and quality has been recent litigation against state Medicaid agencies claiming that care recipients have been left without care or provided with inadequate care because of underlying workforce problems attributable in large part to low payment rates. One case receiving considerable attention is Ball v. Biedess in Arizona. In this case, Medicaid recipients claim to have gone without critical home care services for substantial periods of time. In its 2005 order in the Ball case, a U.S. district court found that at the root of the service delivery problems were direct-care wages too low to elicit a sufficient supply of personal care attendants. In addition to requiring the state to provide a rate of pay sufficient to attract enough workers, the court ordered Arizona to make sweeping changes to ensuring backup service in its home and community-based LTC programs, including the following:20 • In cases of a “gap” in service, providing “critical services” within a two-hour period using on-call backup staffing. • Developing and employing methods and procedures to monitor provider performance in the delivery of services. The Ball case, which is now under appeal in the U.S. Ninth Circuit Court, is important for two reasons. First, it has potentially significant implications for states because the federal court found state officials accountable for the delivery of Medicaid HCBS as well as for ensuring the adequacy of wages. Second, Arizona, probably more than any other state in the country, has begun to grapple with addressing the key issues of adequate backup service systems. Regardless of whether the Ball decision is upheld or reversed by the higher court, the changes that Arizona has begun to undertake are likely to be of interest to other states. IV. Findings States can use three complementary strategies to ensure that services are delivered: 1. Require that provider agencies immediately identify service breakdowns and make necessary backup services available, and establish backup service policies that support self-directing consumers. 2. Track and monitor whether providers fulfill these requirements and whether backup service policies are effective, taking corrective action when they are not. 3. Support the development of backup management systems and programs, whether at the provider, regional, or state level. 6 This section describes current and emerging state practices in these three key areas. While we had hoped to be able to provide information on “best practices,” our assessment is that the area of ensuring backup service for PCS (including related tracking and monitoring issues) is at an early stage of development with few examples of successful approaches that are generalizable and/or that have been in existence long enough for thorough assessment. Indeed, of the 38 respondents to the survey conducted for this report, only four reported a “best system” backup program and seven reported an exemplary tracking system (see appendix B, question 5). While this report indicates the direction in which the above three strategies are evolving across the states, further investigation is required to determine the most promising practices. A. State Strategies for Requiring Backup Service Delivery and Provider Monitoring States can use an array of legislative and regulatory tools to require agencies or designated intermediaries to identify gaps in service and provide backup aide and attendant services. These tools include statutory regulations, administrative codes and licensure rules, and contracting provisions. 1. Current Practice: General Regulatory and Administrative Language Regarding Service Provision in Accordance with Care Plans. Nearly two-thirds of states responding to the supplementary questions (24 out of 38 states) report that they require agencies delivering Medicaid PCS to provide backup aide and attendant services.21 The most common state practice is to rely on general requirements that direct agency providers to deliver the services that they have contracted to deliver and that are authorized in approved care plans (see exhibit 1).22 Such requirements arguably contain a derivative or implicit requirement to provide backup services when necessary, but the obligation to provide backup services usually is not explicitly stated. Exhibit 1 State Practices for Requiring Agency Providers to Provide Backup Services What Is It? State Examples Current Practice: General regulatory or administrative Kansas, Oregon language requiring the delivery of appropriate services in accordance with authorized care plans Emerging Practice: Explicit regulatory, administrative, and/or Arizona, Ohio contracting language specifying uniform standards for: • monitoring the delivery of authorized services, including requiring providers to implement “real-time” verification systems • providing backup in the event of service breakdowns, including specifying response coverage times and agency protocols to be followed in arranging for substitute care For example, in Kansas, to become a Medicaid HCBS provider, agency or individual providers must agree to the following “expected services outcomes”: to provide services according to the 7 plan of care and in a quality manner, and to immediately report to the case manager any failure or inability to provide services as scheduled in accordance with the plan of care.”23 In Oregon, administrative rules for licensed in-home care agencies require that agencies “ensure the provision of safe and appropriate services in accordance with written service plans,” and that “the [agency] manager shall ensure that the agency has qualified and trained employees or contracted caregivers sufficient in number to meet the needs of the clients receiving services.”24 Emerging Practice: Explicit Statutory, Administrative, Or Contract Language Regarding Backup Provision and Monitoring of Service Delivery. A few states have begun to adopt detailed and specific statutory, administrative, and/or contract language specifying uniform standards for agency providers for identifying service gaps and providing backup services for service failures. In 2005, for example, both Arizona and Ohio adopted regulations and/or contracting requirements that specify the obligation of providers to provide backup services and to track the delivery of authorized services. Arizona now holds its managed-care program contractors accountable for “establishing a network of contracted providers adequate to ensure that critical services are provided without gaps.”25 In order to comply with the U.S. District Court Final Order in Ball v. Biedess, issued in June 2005, Arizona’s Medicaid program must fill gaps in the delivery of critical services within two hours of a gap being reported.26 The following definitions are now provided in program contractor contracts: • “Critical services” refer to “tasks such as bathing, toileting, dressing, feeding, transferring to or from bed or wheelchair, and assistance with similar daily activities.” • A “gap in critical services” is defined as “the difference between the number of hours of home care worker critical service scheduled in each member’s HCBS care plan and the hours of scheduled type of critical service that are actually delivered to the member.” In Ohio, the state legislature adopted a statute in April 2005 requiring providers of home care services to “home care dependent adults” to have “a system in place that effectively monitors the delivery of the services by its employees” and to provide backup services when scheduled services are not provided.27 An important feature of this statute is its broad reach and comprehensiveness. It applies to (a) home care services across virtually the entire spectrum of LTC settings (and, therefore, requires implementation by several different state departments); (b) services paid for with either federal, state, local, or private funds; (c) services provided to people between the ages of 21 and 60 with a physical disability or mental impairment, and individuals aged 60 and older regardless of whether the individual has a physical disability or mental impairment; and (d) both real-time service delivery and monitoring for all types of home care consumers. Furthermore, the statute details the components of “an effective monitoring system” that are to be included in provider contracts: 8 a. “A mechanism to verify whether the provider’s employees are present at the location where the services are to be provided and at the time the services are to be provided” when providing services to individuals with “a mental impairment or life-threatening condition.” b. For all other home care dependent adults, “a system to verify at the end of each working day whether the provider’s employees have provided the services at the proper location and time.” c. “A protocol to be followed in scheduling a substitute employee when the monitoring system identifies that an employee has failed to provide home care services at the proper location and time, including standards for determining the length of time that may elapse without jeopardizing the health and safety of the home care dependent adult.” In addition, Ohio providers now are required to establish procedures for collecting information from the monitoring system, including compiling annual reports that include “statistics on the rate at which home care services were provided at the proper location and time,” and “conducting random checks of the accuracy of the monitoring system.” Provider agencies were given until April 2006 (one year from the passage of the legislation) to establish these new procedures. In the same time period, state agencies that administer and license in-home services wrote specific administrative rules to implement the statute.28 Finally, with regard to Ohio’s consumer-directed home care programs, the April 2005 statute requires the relevant departments to conduct a study of how directly hired workers may be made subject to the requirement of effective monitoring. These studies are due by April 2007. A state that does not have explicit or specific requirements in place concerning the identification of service breakdowns and the timely provision of priority backup services—whether through statute, administrative code, or contracting or procurement standards—will have fewer enforcement or accountability tools to ensure backup service compared to a state that has in place general provisions requiring that services be delivered in accordance with the Medicaid beneficiary’s care plan. B. State Strategies for Tracking and Monitoring that Authorized Services Are Delivered More than 80 percent of responding states (32 out of 38) report having a system in place to track and/or monitor whether authorized Medicaid PCS are delivered. Only five states did not indicate some form of tracking effort.29 While the supplemental survey questions were not designed to gather detailed information on these tracking and monitoring systems, those states indicating the presence of a system were asked to briefly describe it. These responses begin to elicit the range of state monitoring practices (see exhibit 2). The majority of states rely on monitoring systems that depend on local case manager review combined with some kind of periodic state review. A handful of states are developing more consolidated monitoring systems that rely on a retrospective review of complete encounter data. It is important to note that both these types of tracking and monitoring systems are retrospective and, therefore, unable to respond to the real-time needs of individual consumers who may be experiencing unstable or failed service delivery. 9 Exhibit 2 State Options for Monitoring Delivery of Authorized Personal Care Services What Is It? State Examples Current Practice: Local case manager Local and/or State Review review combined with periodic state Georgia, Iowa, Kansas, Maryland, review Mississippi, Nevada, Texas, Virginia, Wisconsin, Wyoming Automated or Log Systems Emerging Practice: Consolidated Arizona, California, Ohio, South retrospective reporting systems Carolina supported by automated information or log systems 1. Current Practice: Review by Local Case Managers Combined with Periodic State Review Using Sampling Or Reconciliation Methods. Of the states that responded to the supplemental survey questions indicating that they have a tracking and monitoring system, about three-quarters described systems that rely principally on review of case management records. Sometimes, these are combined with periodic review by state agencies using sampling or reconciliation methods (see exhibit 3). In Mississippi, Georgia, Wisconsin, and Wyoming, case managers or support coordinators monitor whether services have been delivered within the scope of care defined in authorized care plans. In Kansas, case managers of aging waiver recipients (all of whom are employed by Area Agencies on Aging (AAAs)) conduct quarterly home visits to monitor customer satisfaction and the appropriateness of care plans. In Texas, the Department of Aging and Disability Services (DADS) conducts on-site monitoring review visits to provider agencies in order to compare individual care plans to the timesheets completed by direct-care workers who provide personal care services. The frequency of these review visits varies by program. In Maryland, an “inspection of care team” visits a sample of 1915(c) waiver participants in order to compare recipient care plans with actual services delivered. Similarly, Iowa reports conducting interviews with a sample of both care recipients and providers. In Kansas, the Department of Aging monitors service delivery and quality assurance by conducting quarterly reviews of a random sample of case management files and interviews with the sampled recipients regarding their satisfaction with service delivery. The results of these reviews are then compiled into both statewide and AAA-level reports. Nevada and Virginia also report that they monitor service delivery by sampling case management review records (also known as a utilization review). 10 Exhibit 3 Types of State-Level Review State-level review can take several forms, including the following: • Sampling of case management review records from the local level • Consumer satisfaction surveys • Review of consumer complaint or grievance filings • Records from toll-free telephone line where consumers can report problems with service delivery • Interviews conducted with samples of consumers and/or service providers • Home visits to a sample of participants • Auditing of data from the state MMIS regarding services authorized, services delivered, and services billed and paid How effective these various review systems actually are in detecting and monitoring service failure and gaps in coverage is clearly a function of how well they are implemented, how often the review is conducted, and what is done with the information the review yields. An annual review of a sample of case management records or qualitative information gained from a consumer satisfaction survey will approximate the true gap between services authorized and delivered in a very different way than systematic tracking on a monthly or quarterly basis. The latter produces comprehensive quantitative information about the gap combined with regular reporting to regional and state-level agencies with quality assurance oversight responsibility. 2. Emerging Practice: Consolidated Retrospective Reporting Systems Supported by Automated Information or Log Systems. A few states have implemented or are beginning to implement consolidated reporting systems where the tracking takes into account not just a sample of cases, but rather complete encounter data for specific types of services delivered to all Medicaid recipients in a particular program. Four examples are described below. As part of its compliance with court directives in the Ball v. Biedess case, Arizona recently began piloting a consolidated tracking approach called a “provider service gap log” system. Since February 2005, regional program contractors are required to ensure that the provider agencies they contract with provide backup services. They also must track gaps in services to managed care members receiving attendant care, personal care, respite, and homemaker services. The system is supposed to work as follows: when a worker or consumer calls a provider agency to report that a worker is not at the consumer’s home at the appointed time, the agency works to replace the worker within two hours if the services are deemed critical. The agency is responsible for reporting the service gap to the program contractor, which in turn records it in the provider service gap log. The logs are reported to the state on a monthly basis.30 Arizona state officials report initial positive success with the new system and very low rates of reported gap hours.31 However, as of summer 2006, the Ball plaintiffs believe that the implementation of both the tracking system and the two-hour backup service requirement are seriously flawed.32 California’s county-based public authority system uses a timesheet system to track hours authorized and hours paid. Each home care client receives authorization for a certain number of home care hours per month. Home care workers are provided with a time sheet every two weeks for each client indicating the maximum number of authorized service hours that the worker can 11 provide to the client. The worker fills out the time sheet at the end of every two-week period, and the client must sign it. The worker submits the time sheet to a county payroll home care clerk, who enters the information into a terminal that feeds directly into a consolidated state database at the Department of Social Service’s Case Management, Information and Payroll System. This system generates county figures on both hours authorized and hours paid. To date, the state does not systematically use this database to identify service gaps, but some public authorities as well as the Service Employees International Union have used it for this purpose. For its two aging waiver programs (PASSPORT and Choices), Ohio is investigating how to modify its Internet-based centralized billing system in order to use it to identify gaps in services authorized and actually delivered. Currently, Ohio has in place an electronic system that reconciles PASSPORT and Choices care plans, provider certification information, and agency and independent provider billing information. The system authorizes payment only if the service was provided by a certified provider for an authorized number of hours for a specific authorized consumer. To date, case managers receive monthly reports on overages. South Carolina has implemented “Care Call,” a statewide automated system for monitoring the delivery of home care services across all of its waiver programs. As recently summarized by Folkemer and Coleman in a report from the AARP Public Policy Institute,33 Care Call is a toll-free telephone check-in and check-out system for in-home personal care, attendant, companion, and nursing providers. When the home care worker arrives at a client’s home, the worker makes a phone call to the system, which verifies that he or she is present in the client’s home and registers an activity. The worker also logs out when the tasks/services are completed. These two calls define the time period during which the worker is providing services. The system compares services reported with the service authorized. Care Call can be used to check whether authorized services are delivered, but the state’s 115 state-employed care managers also use it to revise care plans as necessary on a monthly basis, depending on whether the client needs additional (or fewer) services in cases where the system shows that more (or fewer) hours were delivered than were actually authorized.34 Weekly reports are run for participants whom case managers determine are high risk. In addition, data from the Care Call system are transferred weekly to South Carolina’s Medicaid Management Information Systems (MMIS) in order to generate billing, relieving providers of that function.35 Note that California relies on a time-sheet system, South Carolina on an automatic telephone- based tracking system, Arizona on a gap log reporting system, and Ohio on a tracking system involving submitted provider billings. The primary uses of all but the Arizona gap log system are managing billing and detecting exceptions and fraud. However, these systems have the potential to be used to monitor the difference between hours authorized and hours paid, not on a real-time basis but with a relatively short lag. Determining whether this difference represents a true service gap may require input from local case managers. This is because there are valid reasons why authorized services may not be delivered—for example, the client’s condition improved and, as a result, all of the care hours authorized were not needed; the client was hospitalized; the client declined services because he or she went out of town or a family member was visiting; or the client died. 12 C. Models for Creating Backup Management Systems The challenge of creating and supporting viable backup management systems for Medicaid PCS is of growing interest and concern to states. States identified five different, although not mutually exclusive, approaches to creating backup coverage for Medicaid PCS (see exhibit 4): • development of consumer backup plans for consumer-directed care; • provider agency gap-coverage procedures and preventive measures; • “call-off” notification systems; • creation of specialized backup agencies and backup pools of PCS workers; and • potential use of registries as a source of backup coverage. Exhibit 4 Examples of Local and Regional Initiatives for Creating Backup Management Systems What Is It? State Examples • Call-off notification systems • Visiting Nurse Service of New York • Registries that provide consumers • Public authorities in San Francisco and Los Angeles; with access to backup PCS Washington and Oregon under development workers • Specialized agencies, pools, and • Public authorities in San Francisco and Alameda, programs California; Rapid Response Backup PAS Program in Pennsylvania; Pima Health System in Pima County, Arizona The first three approaches—consumer backup plans, provider procedures and preventive measures, and call-off notification systems—operate at the grassroots level and involve individual consumers and providers. At the same time, some states have begun developing strategies at local or regional levels to address the problem of backup service delivery. The attraction of these latter strategies is that they presumably allow for more efficient or cost- effective solutions compared with each provider agency or self-directing consumer grappling with this problem on its own. Exhibit 4 details examples of local and regional approaches to backup; these examples are then described in more detail below, along with individual provider- based approaches. 1. Strategy: Development of Consumer Backup Plans for Consumer-Directed Care. In Medicaid programs where consumers directly hire their own PCS workers, case managers typically place the responsibility for developing backup plans directly on consumers. Advocates of consumer direction believe that creating good backup plans is part of empowering consumers to take responsibility for their care. At the same time, various kinds of local or state support and arrangements relating to backup—such as pools of emergency providers who are prescreened or the ability to pay a premium to a provider who arrives on short notice—may be instrumental in enabling consumers to carry out their self-direction role36 (see the final two strategy descriptions in this section for examples of such arrangements). 13 Here are four examples of how states currently guide the development of backup plans for consumer-directed care: In New Hampshire, participants in the state’s consumer-directed waiver programs are required to set out their own individual plans for securing backup services if their paid caregiver is not present. They are advised to first identify family and friends who are their “natural supports,” and they are also asked to develop relationships with three other attendants who may be available in case of emergency. Finally, they are encouraged to think through what they would do if they were alone in an emergency situation. In New Jersey’s Cash and Counseling Program, consumers develop emergency backup plans as part of their cash management plans to spend their monthly budget. The consumer determines how many regular and backup PCS workers he or she needs. All care providers listed on the cash management plan are to be registered in advance with the program’s fiscal intermediary and billing agent. When an emergency occurs, the consumer contacts the designated backup persons to obtain substitute care. In the Florida Cash and Counseling Program, consumers are required to set aside funds for emergency backup in their monthly savings and purchase plan. Four levels of emergency backup are defined, and consumers must plan for each contingency. In level one, consumers specify two backup providers for each critical service in their purchasing plan; level two involves consumers’ informal networks of family members and friends who can help if the first-level providers are unavailable; level three requires accessing enrolled Medicaid providers such as home health agencies; and level four involves calling local emergency services in cases of extreme emergency.37 In Colorado, before enrolling in the state’s consumer-directed waiver programs, clients must undergo a thorough training that includes developing a backup plan with the assistance of their case manager.38 The plan specifies the names and phone numbers of people willing to provide backup support. The backup person, who may be a friend or family member, can be put on payroll, if desired. Since they are responsible for their own budgets, clients are able to pay a premium for backup if they wish. Evidence from the original Cash and Counseling states (Florida, Arkansas, and New Jersey) suggests that it is often the personal care workers themselves who have primary responsibility for arranging for backup care. Mathematica reports that “a sizeable percentage of directly hired workers in the sample (ranging from 41 percent in Florida to 53 percent in Arkansas) were responsible for obtaining back-up care, and about 20 percent in each state reported having at least some difficulty arranging it.” Mathematica also found that some agency workers reported that they had to arrange for backup coverage for their clients even though it was assumed that the agency was responsible.39 2. Strategy: Provider Agency Gap-Coverage Procedures and Preventive Measures. To minimize the impact of service disruption on consumers, agencies can put in place procedures and protocols that enable them to respond effectively and in a timely manner to gaps in service coverage to which they are alerted by calls either from absent workers or from consumers and their families (see exhibit 5). 14 Exhibit 5 Provider Agency Gap Coverage Procedures and Preventive Measures Provider Agency Gap Coverage Procedures: A variety of methods typically are employed to fill cases, including the following: • Calling in additional workers on payroll • Rearranging work schedules • Pinch-hitting using management or supervisory staff to provide needed services Preventive Measures: Some agencies are large enough to implement preventive measures such as the following: • Recruiting workers who are available for “on-call” assignments • Employing floating staff whose full-time work assignment is filling in for absent workers • Assigning two workers to each client so that there is always someone who knows the client and can be reassigned if the other worker is absent or leaves the agency Note: To recruit backup coverage, agencies may need to provide financial incentives (i.e., higher wages, paid travel time, and mileage reimbursement) to “on-call” and floating staff. An example of a large provider agency that has created its own internal backup capacity is Pima Health System (PHS) in Tucson, Arizona. PHS is a county agency that provides LTC services and also serves as one of Arizona’s seven managed-care program contractors. PHS contracts with 22 agencies to provide personal care, housekeeping, and respite services, but it also employs 600 attendant care workers as county employees “at will.” These workers may choose whether to accept a case. About half of these workers are “pre-matched” workers (i.e., family members) who are trained by PHS. To achieve flexibility and fill emergency and hard-to-fill cases, PHS provides for another class of employee: personal care aide. These aides are county employees who have full benefits and additional training or particular capabilities to meet the needs of “difficult-to-serve” clients.40 Personal care aides are deployed to cases that either a contracted agency or the PHS attendant care agency is unable to fill, including cases requiring emergency backup. They also are used to start up cases (within the required 30-day start-up period), and are expected to fill any case they are assigned to as a condition of their employment. In areas where the volume of PCS is sufficiently high and the service delivery system is very centralized (e.g., a single county PCS provider), the concept of a fully benefited, full-time cadre of workers to ensure service delivery may be promising to pursue. 3. Strategy: “Call-Off” Notification Systems. Provider agencies are moving toward using information technology to automatically track home care worker visits, times of service provision, and hours provided. One form this technology takes is a telephone monitoring system that requires workers to call into their agency when they arrive and leave, allowing the agency to track the times of visits and hours provided. Some agencies also have aides report the tasks they performed. The records generated can be used as a basis for payroll and billing, but they also can be used to identify unexplained absences, which in turn can immediately be investigated and responded to by an agency service coordinator. More complex monitoring systems add a notification feature, meaning that if a call-in from a worker is not received by a scheduled time, the monitoring system notifies the provider agency via e-mail of the worker’s absence. 15 The following are examples of backup management systems that employ or will employ a notification feature: Visiting Nurse Service of New York (VNS) has developed “preferred-provider” relationships with 13 home care agencies in New York City and Westchester and Nassau counties, and contractually requires these agencies to operate a telephone monitoring notification system. One contractor provides and services the network’s scheduling and notification systems, implementing any enhancements or changes required by VNS. These 13 agencies and VNS collectively employ more than 60 percent of the 100,000 privately employed home care workers in the VNS New York service area.41 The Pennsylvania Department of Public Welfare is beginning a pilot for a provider-based automated service assurance system with a notification feature. It will involve approximately 10 percent of consumers in the state’s 11 Medicaid waiver programs as well as some consumers receiving services through the Offices of Mental Retardation, Mental Health, and Substance Abuse. Note that the Pennsylvania pilot is an example of a statewide approach to the problem of monitoring and verifying that providers are indeed providing services in participants’ homes as prescribed in their care plans. At the same time that they provide the state with verification information, these systems also are designed to immediately alert local providers about service failures occurring in their clients’ homes. The New York VNS monitoring requirement is an instructive example of the use of contracting standards by a “dominant” provider (i.e., one with a large market share) in order to achieve a system-wide improvement in the detection of the real- time need for backup services. 4. Strategy: Creation of Specialized Backup Agencies, Pools, and Programs. One approach that counties, regions, and even groups of providers can take to develop greater capacity to provide backup services is to create specialized backup agencies and pools. The first two examples below relate to backup coverage programs created by public authority PCS programs operating in densely populated urban areas that allow consumers to directly hire their own workers. In Alameda County, California, the Public Authority for In-Home Supportive Services (IHSS) has an emergency worker replacement service called Rapid Response.42 This 24-hour system is available to all IHSS consumers when they have an urgent or short-notice care need because their regular consumer-directed worker is not available, or to fill in for a worker’s planned absence. The public authority contracts with a community service agency to provide the services and employ the backup workers. When notice of two hours or fewer is given, replacement workers are expected to arrive within two hours. Consumers do not pay for the service, but the hours used are deducted from the consumer’s monthly allotment of service hours.43 The San Francisco Public Authority has a backup program called On-Call Services for people who use IHSS.44 The authority directly employs a pool of about 35 active workers who are available for urgent care, such as when a regular worker is suddenly unavailable or upon a consumer’s discharge from a hospital or nursing home. Consumers access backup support by calling the public authority, whose staff then calls a list of PCS workers until an available backup 16 worker is identified. On-call services are available during regular business hours; messages left after hours or on weekends and holidays are checked at designated times. The authority’s “on- call” workers receive $13 an hour for a minimum of two hours plus transportation costs, and are paid only for hours when they provide support. On-Call Services averages 800 hours of support per month at an average cost of about $18 an hour when workers’ compensation and employer taxes are included. The service is also available on a sliding fee scale to private-pay consumers who are using the authority’s registry services (see section below on registries). Under a Medicaid Infrastructure Grant obtained through the Pennsylvania Department of Welfare, in 2005 the Pennsylvania Council on Independent Living developed a detailed administrative model for providing priority, backup PCS in two counties to individuals with disabilities receiving services under the state’s ACT 150 Attendant Care Program and the Attendant Care Waiver Program.45 The pilot, called the Rapid Response Backup Personal Assistance Services Program (RRB-PAS), targeted PCS recipients who are, or want to be, employed. Because of delays and insufficient funding, the pilot did not get off the ground in terms of filling actual backup hours; however, it appears to have laid important groundwork regarding the types of procedures and protocols that backup programs can require. The administrative model of the RRB-PAS program has the following key features: • It allows PCS providers either to use their own workers on staff and/or to subcontract with community agencies in order to provide one-hour response time to requests for backup assistance. • It requires consumers who are acting as employers of record for their workers to switch to a “combination model” of service that allows consumers to also use agency-hired workers. • It requires PCS providers to prioritize employment-related service coordination for consumers who want to work but need PCS, including assistance with transportation, to do so. • It requires PCS providers to coordinate transportation for consumers using backup services. Backup reimbursement rates were negotiated with the state and provide for 1.5 to 2 times the base rate of pay plus paid travel time and mileage reimbursement. Providers participating in the program took one or more of the following steps: developed a registry of backup workers; trained a pool of existing employees in rapid response protocol; established an answering service and dispatch protocol; and hired dedicated backup PCS workers who had high skill levels and who could be dispatched at any time to any area of the county. The research conducted for this report revealed a strikingly small number of backup programs operating at the local, regional, or statewide level. In addition, we found a handful of demonstrations or pilots that had not been successful. It is important to look at the lessons learned from programs that were not successful as well as those that are continuing to operate. Here are two examples of programs that encountered difficulties: An innovative backup program in New Hampshire failed because of the low volume of requests for backup care from consumer-directed clients. This program, operated by the Granite State 17 Independent Living from 2004 to 2005, used work-study university students to provide care. While on call, students were paid the minimum wage by the work-study program, and when providing backup care, they were paid $9 an hour from Medicaid funds. While consumers were very satisfied with the program, they reported that when they needed emergency care, they were more likely to call people they knew for assistance because they were reluctant to have a stranger come into their home. In 2005, New Jersey’s Personal Assistance Services Program (PASP) experimented with creating a centralized agency-based backup model in three counties. The program—which serves 500 consumers with disabilities who receive agency-delivered PCS—contracted with three key agencies to provide backup personal care workers to other agencies. However, this approach did not generate demand because it appeared that agency providers were reluctant to call the designated backup agency for fear of losing business to the agency. Emerging lessons in creating backup programs—whether they are specialized agencies, pools, or other arrangements—suggest the importance of the following: • identifying arrangements that are desirable and comfortable for consumers; • designing arrangements that are likely to capture sufficient volume in a local or regional area to make the program cost-effective; • working with consumers to conduct successful outreach to other consumers and their families; • paying a higher rate of compensation to backup workers; • addressing transportation obstacles for backup PCS workers; and • committing sufficient service dollars to adequately fund the program. 5. Strategy: Potential Use of Registries as a Source of Backup Coverage. In at least a dozen states, registries of personal assistance workers either are operating or are under development to help match consumers who need services with workers who need employment.46 As CMS notes, in addition to helping fill ongoing personal care positions, “registries might also be a source from which consumers or providers can draw when consumers are in need of additional temporary assistance.”47 Some registries have been developed solely to serve consumers in consumer-directed programs; others are designed for use by both consumers and providers (including both agency providers and independent providers). In all cases, the consumer/employer is responsible for interviewing, checking references, and selecting, supervising, and dismissing the worker. Some registries are Web-based and allow registered consumers and providers access via passwords; others are telephone-based and staff responds to consumer requests by faxing or mailing lists of available workers.48 Those connected to public authorities serving primarily self-directing Medicaid consumers have no fees and are publicly supported, but registries that provide services to provider agencies seeking to recruit workers as well as to private-pay consumers may charge fees. 18 In addition to the basic function of providing contact information for registry-listed PCS workers, registries can also do the following: • screen workers (including performing background checks); • collect in-depth information about consumer and worker preferences to assist with job/client matching; • provide orientation services for consumers and workers; • conduct in-person interviews with workers to check driver’s licenses and confirm valid insurance; • conduct training sessions with workers; and • provide peer mentoring for workers. Another function that registries conceivably may be able to fill is to provide backup coverage for emergency gaps in service coverage and planned needs for substitute aides. Exhibit 6 identifies key features that registries should consider implementing in order to provide effective backup coverage. Exhibit 6 Using Registries for Backup Coverage As CMS notes, in addition to helping fill ongoing personal care positions, “registries might also be a source from which consumers or providers can draw when consumers are in need of additional temporary assistance.”49 Registry features that appear essential to implementing this backup function include the following: • In-depth screening of workers • Preapproval of workers for payment through the relevant Medicaid fiscal payer and removal of other administrative barriers to hiring workers on short notice • Round-the-clock access to the registry by consumers and agency providers • Close management and updating of the list of workers who declare themselves to be available for substitute, emergency backup, or respite care work, including tracking changes in the days and times they are available • Provision of financial incentives (e.g., higher wages, paid travel time, and mileage reimbursement) to workers who can respond immediately to consumers who need backup services One example of a registry that mainly provides regular PCS workers but also some substitute workers is the Referral Registry of the Washington State Home Care Quality Authority (HCQA).50 HCQA, Washington’s public authority for PCS workers, currently operates a customized Internet-based registry system designed to match publicly funded in-home consumers with prequalified individual providers in 21 counties. The Web site is available in Spanish, Russian, and Chinese, and translation services are available by phone. Before being listed on a consumer/employer referral, individual providers must successfully complete a background check, a face-to-face interview, and an introductory course. The registry has the capability of providing emergency backup, but case managers have to preapprove all direct hires, 19 which may limit the emergency use of the registry. To date, only a small number of self-directing consumers have arranged with their case managers to use registry workers as part of their backup service plans. RTZ Associates' HOMCare is a computerized home care registry system that is used by 13 of California’s public authorities to manage worker and consumer information and to match workers’ qualifications with consumers’ needs, providing consumers with lists of potential workers for them to interview.51 In addition it provides automated outcome reports concerning performance, workforce composition, and consumer care needs. In San Francisco, HOMCare is also being used as a database for the public authority's emergency backup “On Call System” described in an earlier section of this report. RTZ Associates is also working with the Los Angeles Public Authority to develop a backup program in conjunction with the registry. Information technology aside, a major challenge for public authorities in the local development of emergency backup programs is creating the capability to pay a premium for emergency on- call services. A multifaceted backup management system also could conceivably combine two of the above approaches: a call-off electronic notification system with a registry-type approach to matching consumers who need backup or substitute services with workers available on a temporary or emergency basis. The result would be an automated service that replaces PCS workers during temporary absences. Examples from other human service fields may be instructive. For example, every weekday, an average of 10 percent of the nation’s 2.8 million teachers call in sick. Some public school districts are using sophisticated automated substitute management systems (both telephone- and Web-based) to help schools find and retain substitutes and to help substitute teachers search for multiple jobs. V. Discussion of Findings and Conclusions This review of state and local efforts to ensure better backup services suggests several important issues and implications that advocates, policymakers, researchers, and providers may find useful to consider. 1. Ensuring backup service should be a required component of any state’s oversight responsibility for publicly financed HCBS, yet states rarely specify uniform standards, including required response coverage times for PCS providers, and the availability of backup services 24 hours a day, seven days a week, for providing backup for service breakdowns for critical PCS. Such standards, as well as policies and protocols for timely response, need to be included in state statutes, administrative rules, and standard contractual requirements for all agencies providing HCBS. These standards also need to encompass consumer-directed services. 2. State quality assurance systems with respect to backup tend to be unevenly developed across waiver programs and even less well developed for non-waiver PCS programs. There are often varying levels of automation and use of data-tracking methods across programs for ensuring adequate follow-up when things go wrong at the point of service provision. Creating 20 more uniform and integrated quality management systems with a strong backup component is an important need in many states. 3. The vast majority of states rely on periodic review of partial records or samples of records to monitor and track the delivery of authorized services, but it is unclear how well this type of review process can capture and relay reliable and timely information on how often authorized services are actually received by consumers and how often they are not. There appears to be movement toward fully automated, integrated quality management systems that are tied into state-level MMIS in order to conduct payment functions, and reconcile the delivery of actual services with those authorized. While no state has achieved full integration yet, these systems are likely to be at their best when they are uniformly developed across all waiver programs as well as non-waiver Medicaid and other state programs, and when local case managers or agency providers receive the information they need to detect and address service gaps. Clearly, state policymakers and other stakeholders can play important roles in facilitating the innovative use of information technology to ensure that consumers are receiving the services they need. However, these are retrospective practices that cannot be expected to meet the real- time needs of consumers who experience unreliable service delivery. 4. The growth in consumer-directed PCS raises important issues about the role that states can play in ensuring that consumers have access to backup services beyond informal arrangements with family and friends. While it is critical that self-directing consumers be required to develop backup plans, these programs are unlikely to be effective if consumers do not have the ability to offer financial incentives for workers to arrive on short notice or if they do not have access to emergency providers who are prescreened and available to be hired immediately. The state can play an important role in making these plans effective by supporting self-directing consumers with adequate numbers of well-trained care managers, developing registries of available prescreened workers, allowing for the payment of family members, developing backup pools, and removing barriers to payment of workers who are hired on short notice. At this time, such comprehensive approaches are generally not in place. 5. While most of the programs and policies described in this report are still at an emergent state, experience to date across the states reveals a variety of ways in which state government and other LTC stakeholders can encourage the development of greater backup coverage capacity at both local and regional levels. Pilots and demonstration projects can be used to explore a number of ideas that appear to have merit, including the following: • Greater use of automated Internet and telephone-based backup management systems that record and post worker “call-offs” and absences, and perhaps even link to available backup workers. • Development of specialized backup agencies, possibly even pooling backup workers and consumers from different long-term care settings to create sufficient demand and to employ workers who want to work more hours. • Adaptation of the registry model to create backup service capacity for emergencies and prearranged substitute or respite care. 21 This report addresses a concern that is foremost in the minds of individuals and families needing LTC services in the United States today: Can I find a qualified worker to provide the services I need? As states move to rebalance their LTC systems, shifting the locus of care increasingly to the homes of LTC recipients and non-clinical community-care settings, this concern is only likely to grow. As it does, so too will the focus on what steps state governments can take to ensure that backup systems and unified quality management systems are put in place to ensure that consumers receive reliable, quality service. Indeed, successful rebalancing hinges on the ability of state government to address this vital issue. While most states appear to be at the earliest stages of designing comprehensive approaches to ensuring backup service, policymakers, providers, researchers, consumers, and advocates seeking to improve backup services can draw upon the emerging state-level experience and lessons that this report begins to detail. 22 ENDNOTES 1 See H. Stephen Kaye, Susan Chapman, Robert Newcomer, and Charlene Harrington (July/August 2006), “The Personal Assistance Workforce: Trends in Supply and Demand,” Health Affairs, Vol. 25, No. 4, pp. 1113–1120. 2 The number of home care jobs (i.e., demand for home care workers) is projected to swell by two-fifths between 2002 and 2012, earning a place in the list of six of the fastest-growing occupations in the economy. National Clearinghouse on the Direct Care Workforce (September 2004), Who Are Direct-Care Workers? Bronx, NY: Paraprofessional Healthcare Institute. Available at http://www.directcareclearinghouse.org/download/NCDCW_0904_Fact_Sheet.pdf. 3 For five years now, the National Survey of State Initiatives on the Long-Term Care Direct Care Workforce has found that the vast majority of states consider the direct-care vacancies to be a serious issue. The percentage of states has varied from 88 percent in 1999 to 76 percent in 2005. For the latest survey, conducted in 2004/2005, see the National Clearinghouse on the Direct Care Workforce and the Direct Care Workers Association of North Carolina (September 2005), Results of the 2005 National Survey of State Initiatives on the Long-Term Care Direct Care Workforce. Available at http://www.directcareclearinghouse.org/download/2005_Nat_Survey_State_Initiatives.pdf. Prior years’ surveys can be found at http://www.directcareclearinghouse.org. 4 See Dorie Seavey and Vera Salter (October 2006), Paying for Quality Care: States and Local Strategies for Improving Wages and Benefits for Personal Care Assistants. Washington, DC: AARP Public Policy Institute. 5 Steven Dawson and Rick Surpin (February 2001), Direct-Care Health Workers: The Unnecessary Crisis in Long- Term Care, Aspen, CO: Domestic Strategy Group, Aspen Institute; Dorie Seavey, Steven Dawson, and Carol Rodat (September 2006), Addressing New York City’s Care Gap: Aligning Workforce Policy to Support Home- and Community-Based Care, Bronx, NY: Paraprofessional Healthcare Institute; Dorie Seavey (October 2004), The Cost of Frontline Turnover in Long-Term Care, Washington, DC: IFAS/AAHSA, Better Jobs Better Care Practice and Policy Report. Low retention and high turnover also create strong disincentives for providers to invest in staff training as well as retention-oriented supervisory practices and career advancement programs—practices that, in addition to higher wages and better benefits, can play an important role in improving job quality. 6 Susan Harmuth and Susan Dyson (September 2005), Results of the 2005 National Survey of State Initiatives on the Long-Term Care Direct-Care Workforce. The National Clearinghouse on the Direct Care Workforce and The Direct Care Workers Association of North Carolina. Available at http://www.directcareclearinghouse.org/l_art_det.jsp?res_id=184110 (This is the fifth such survey of Directors of State Medicaid Agencies and State Units on Aging conducted from 1999 to 2005 by the North Carolina Department of Health and the Paraprofessional Healthcare Institute.) 7 Dorie Seavey and Vera Salter (October 2006), Paying for Quality Care: States and Local Strategies for Improving Wages and Benefits for Personal Care Assistants. Washington, DC: AARP Public Policy Institute. 8 See http://www.pascenter.org/home/index.php; http://www.nasmd.org; http://www.statehealthfacts.org/cgi- bin/healthfacts.cgi; http://www.nga.org/portal/site/nga; http://www.cms.hhs.gov/default.asp? 9 Personal care services are also known as personal assistance services, personal attendant services, attendant care services, and other titles. See U.S. Department of Health and Human Services (October 2000), Understanding Medicaid Home and Community Services: A Primer. Washington, DC: Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. 10 For background, see Laura L. Summer and Emily S. Ihara (August 2005), The Medicaid Personal Care Services Benefit: Practices in States that Offer the Optional State Plan Benefit, Research Report. Washington, DC: AARP Public Policy Institute, available at http://assets.aarp.org/rgcenter/health/2005_11_medicaid.pdf; and Laura L. Summer and Emily S. Ihara (October 2004), State-Funded Home and Community-Based Service Programs for Older People, Research Report. Washington, DC: AARP Public Policy Institute, available at http://assets.aarp.org/rgcenter/post-import/2004_11_hcbs.pdf. 11 A surrogate refers to a family member or other designated individual who assumes responsibility for directing the care of the Medicaid beneficiary. 12 According to plaintiff testimony in the Ball v. Biedess case, “recipients are often told by their case managers that if they are not satisfied, e.g., with home care workers who don’t show up in [time] to help them out of bed, they can go into nursing homes.” Three of the plaintiffs in Ball were forced to move back into nursing homes when home care workers were unavailable, and plaintiffs testified about the effect that the threat of institutionalization had on them “because they fear[ed] their lives would be over if they cannot live in the community.” See No. Civ 00 – 67 23 TUC ACM, Plaintiffs’ Trial Brief, pp. 9–10; and Memorandum of Points and Authorities in Support of Plaintiffs’ Motion for Summary Judgment, p. 29. Both available at Ball v. Biedess link at http://www.azdisabilitylaw.org/legalpolicynews.html#HealthCare. 13 See cases cited in Section IV of Gary A. Smith (December 2005), Status Report: Litigation Concerning Home and Community Services for People with Disabilities. Washington, DC and Portland, OR: Human Services Research Institute. Available at http://www.hsri.org/docs/litigation120605.PDF. 14 Wayne L. Anderson et al. (April 2004) Direct Service Workforce Activities of the Systems Change Grantees: Final Report. Prepared for U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services, Research Triangle Park, NC: RTI International, p. 18. Available at http://www.directcareclearinghouse.org/download/CMSWorkforce.pdf#search=%22Direct%20Service%20Workfor ce%20Activities%20of%20the%20Systems%20Change%20Grantees%3A%20Final%20Report.%22. 15 Pennsylvania Council on Independent Living (2004), Backup PAS and Employment Findings Report. Prepared for the Pennsylvania Department of Public Welfare’s Ticket to Work Medicaid Infrastructure Grant and the Pennsylvania Advisory Committee on Employment (ACE). Available at www.pcil.net/PAS/FinalBackup_PAS_Employment_Findings_Report.pdf. See p.17. 16 See L.E. Powers et al. (2002), “Barriers and strategies in addressing abuse in personal assistance relationships: A survey of disabled women’s experiences,” Journal of Rehabilitation, Vol. 68, No. 1, pp. 4–13; and M. Saxton et al. (2001), “‘Bring my scooter so I can leave you’: A study of disabled women handling abuse by personal assistance providers,” Violence Against Women: An International and Interdisciplinary Journal, Vol. 7, No. 4, pp. 393–417. 17 U.S. General Accounting Office (June 2003), Long-Term Care—Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened. GAO-03-576, Washington, DC: GAO, p. 34. Available at http://www.gao.gov/new.items/d03576.pdf. 18 The Final Report Summary for this project can be found at http://hcbs.org/files/28/1379/QInventory.pdf. 19 1915(c) Waiver Application (Version 3.3), available at http://www.hcbs.org/moreInfo.php/nb/doc/1452. 20 For court filings in Ball v. Biedess, see http://www.azdisabilitylaw.org/legalpolicynews.html#HealthCare. 21 Twenty-nine percent (11 out of 38 states) replied that they do not require agencies to provide backup aide or attendant services when they contract with the state. An additional 3 states did not respond to this particular question. 22 This general requirement is similar to Medicare’s Conditions of Participation for Home Health Agencies, which require that patients be accepted for treatment only if there is a “reasonable expectation” that their needs can be met. CFR 484.18 (“Conditions of Participation for Home Health Agencies”) states, ,“Patients are accepted for treatment on the basis of a reasonable expectation that the patient’s medical needs can be met adequately by the agency in the patient’s place of residence. Care follows a written plan of care established and reviewed periodically by a doctor of medicine….” 23 State of Kansas, HCBS Application, HCBS Provider Agreement Addendum, p. 9. Available at https://www.kmap- state-ks.us/Documents/Content/Checklists/HCBS.PDF. 24 State of Oregon, Oregon Administrative Rules, Department of Human Services, Public Health, Division 536, In- Home Care Agencies (333-536-0050 and 333-536-0070). Available at http://arcweb.sos.state.or.us/rules/OARs_300/OAR_333/333_536.html. 25 State of Arizona, Arizona Health Care Cost Containment System Administration, Division of Business and Finance (October 2005), “Contract Amendment.” Available at http://www.ahcccs.state.az.us/Contracting/ContractAmend/ALTCSCYE2006/CMS_11-24-05_GenAmendment.pdf. 26 See Final Order from U.S. District Court for Arizona, June 2005. Available at http://www.azdisabilitylaw.org/legalpolicynews.html#HealthCare. 27 State of Ohio, 125th General Assembly Amended Substitute House Bill Number 95 Sec.121.26. Available at http://www.legislature.state.oh.us/BillText125/125_HB_95_EN_N.html. See Sec. 121.36. 28 For example, new administrative rules of the Ohio Department of Job and Family Services that govern the state’s disability waiver program (Ohio Home Care) mandate that, as a minimum requirement for participation in the waiver program, agency providers, all of whom are licensed, make available backup staff “to provide services when the provider’s regularly scheduled staff cannot or do not meet their obligation to provide services to a consumer.” State of Ohio, Ohio Department of Job and Family Services, Ohio Home Care Rule 5101:3-45-10. Available at p. 67 of http://emanuals.odjfs.state.oh.us/emanuals/pdf/pdf_books/OhioHomeCare.pdf. 29 One additional state did not respond to this question. 30 The items in the “gap log” include what the service is, whether the hours were replaced, how long it took to replace the service, whether the service was replaced with a paid or unpaid person, and whether it was the 24 consumer’s choice to use an unpaid person. Service gaps are defined as any of the above services that are not provided at the consumer’s home at the time they should be. Any hours that the worker was to be in the home are defined as “gap hours” and any of those hours filled with a substitute person are considered “gap hours filled.” According to the state, in September 2005, 720 gap hours were reported for 220 cases representing a .02 percentage of gap hours. 31 According to the state, in September 2005, 720 gap hours were reported for 220 cases representing a .02 percentage of gap hours. 32 According to a recent pleading by the plaintiffs in US District Court alleging that the state has failed to comply with the Court’s orders, “Plaintiffs today have no more remedy for gaps in home care services than they had before the Court’s decision in this case.” See No. CIV 00-67-TUC EHC “Supplement To Plaintiffs’ Motion for Enforcement of Court Orders,” filed August 14, 2006 in United States District Court, District of Arizona. 33 Donna Folkemer and Barbara Coleman (February 2006), Home Care Quality: Emerging State Strategies to Deliver Person-Centered Services. Washington, DC: AARP Public Policy Institute Report. Available at http://assets.aarp.org/rgcenter/il/2006_07_hcc.pdf. 34 Ibid. 35 Medstat for the U.S. Centers for Medicare & Medicaid Services (December 2004), Promising Practices in Home and Community-Based Services: South Carolina Care Call. Available at http://new.cms.hhs.gov/PromisingPractices/Downloads/scapms.pdf. 36 These supports and arrangements may be particularly important in cases where consumers experience highly skewed, even abusive, power dynamics with their caregivers that can effectively trap them in mistreating personal assistance relationships. See M. Saxton et al. (2001), ‘Bring my scooter so I can leave you’: A study of disabled women handling abuse by personal assistance providers,” Violence Against Women: An International and Interdisciplinary Journal, Vol. 7, No. 4, pp. 393–417; and L.E. Powers et al. (2002), “Barriers and strategies in addressing abuse in personal assistance relationships: A survey of disabled women’s experiences,” Journal of Rehabilitation, Vol. 68, No. 1, pp. 4–13. 37 See Florida Consumer-Directed Care Plus Waiver Operational Protocol (available at pp. 38-41 at http://www.cashandcounseling.org/resources/20060118-095701/FLOptrtnlProtocol.pdf; and Diane M. King (April 2005), Improving Emergency Backup and Critical Incident Management for Consumer Direction. Prepared for Centers for Medicare & Medicaid Services, U.S. Department of Health and Human Services, Colorado Department of Health Care Policy and Financing. 38 Diane M. King (April 2005), Improving Emergency Backup and Critical Incident Management for Consumer Direction. Prepared for Centers for Medicare & Medicaid Services, U.S. Department of Health and Human Services, Colorado Department of Health Care Policy and Financing. 39 Stacy Dale, Randall Brown, Barbara Phillips, and Barbara Carlson (August 2005), Experiences of Workers Hired Under Cash and Counseling: Findings from Arkansas, Florida, and New Jersey. Princeton, NJ: Mathematica Policy Research, Inc., p. 25. 40 E.g., clients who present complex logistics because of geography or hours, or clients with difficult personalities or heavy care needs. 41 The VNS service area consists of four boroughs of New York City and two counties on Long Island. 42 See the Web site of the Alameda County Public Authority at http://www.ac-pa4ihss.org/content/2.asp. Also see Pennsylvania Council on Independent Living (2004), Backup PAS and Employment Findings Report. Prepared for Pennsylvania Department of Public Welfare’s Ticket to Work Medicaid Infrastructure Grant and the Pennsylvania Advisory Committee on Employment (ACE). Available at www.pcil.net/PAS/FinalBackup_PAS_Employment_Findings_Report.pdf. 43 During its pilot period, the program operated solely as an emergency backup system; workers were paid $3.50/hour while on call in addition to full pay for the hours when they provided support. Because of the high cost of paying for on-call hours, combined with a low volume of requests for emergency support, the Public Authority has now expanded the program to also provide consumers with a worker during planned absences. Contractors are paid $24/hour for routine service calls and up to an additional $12/hour in the event that the worker arrives within two hours of an urgent call (most of this amount is paid to the worker). 44 See the Web site of the San Francisco Public Authority at http://www.sfihsspa.org/content.asp?CT=5&CC=0. 45 Pennsylvania Council on Independent Living (September 2005), Final Report: Rapid Response Backup Personal Assistance Services Study & Pilot Project. Harrisburg, PA: PCIL. 46 These types of registries are distinct from federally required state registries of certified nursing assistants. 25 47 Wayne L. Anderson et al. (April 2004), Direct Service Workforce Activities of the Systems Change Grantees: Final Report. Prepared for U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services, Research Triangle Park, NC: RTI International, p. 17. Available at http://www.hcbs.org/files/35/1714/CMSWorkforce.htm. 48 For further description on the possible range of registry services, see John Leonard (Fall 2005), “Matching Direct Care Workers with the Families Who Need Them,” BJBC Insights, No. 8, Washington, DC: Institute for Aging Services. Available at http://www.bjbc.org/page.asp?pgID=172. 49 Wayne L. Anderson et al. (April 2004) Direct Service Workforce Activities of the Systems Change Grantees: Final Report, Prepared for U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services, Research Triangle Park, NC: RTI International, p. 17. Available at http://www.hcbs.org/files/35/1714/CMSWorkforce.htm. 50 The Web site of the registry can be accessed at http://www.hcqa.wa.gov. The Oregon Home Care Commission has decided to contract with the Washington Home Care Quality Authority (HCQA) to help it develop a referral registry. The Oregon Commission is mandated to create and maintain a statewide registry of qualified home care workers and to facilitate routine, respite, and emergency referrals. Washington State University is conducting a complete evaluation of the Washington HCQA’s registry from both the worker and consumer perspective, and will include data about the system’s effectiveness in linking consumers to substitute services. 51 For information about RTZ Associates HOMCare, see http://rtzassociates.com/public_authorities.php. 26 APPENDIX A SUPPLEMENTAL QUESTIONS TO THE 2005 NATIONAL SURVEY OF STATE INITIATIVES ON THE LONG-TERM CARE DIRECT-CARE WORKFORCE. The following five questions are asked in order to identify models that may be helpful to states in administering their Medicaid personal care services.* They are part of a study commissioned from the Paraprofessional Healthcare Institute by the AARP Public Policy Institute (PPI,) with the findings to be published in a PPI report in 2005. 1. Does your state (or do counties within your state) set direct-care worker wage rates for any of your Medicaid personal care services or aged and disabled waiver programs? (Please do not include the setting of a service reimbursement rate.) Yes No a) If yes, please briefly explain how those wage rates are determined (e.g., by market survey, specification of minimum wage rate/salary, COLA adjustment, self-sufficiency wage analysis) and describe those rates. b) If no, do you have any information on how wage rates are determined (e.g., collective bargaining, agency determined, consumer determined) and describe those rates: c) Provide contact information for the person most knowledgeable about this issue (telephone number or email address): 2. Does your state have a system(s) to track and/or monitor whether Medicaid personal care services* authorized in individual care-recipient care plans are delivered? Yes No a) If yes, please describe this system so that it may be shared with others for quality improvement purposes. 3. What state grievance procedures are available for Medicaid consumers who are dissatisfied with the delivery of their personal care services? 4. Are personal-care agencies required to provide back-up aide or attendant services when they contract with the state? Yes No a) If no, how does the state provide for back-up aide or attendant services? 5. Do you know of any highly successful or “best systems” at the state, county, agency, or program level to: Provide back-up aide or attendant services: Yes _No Track authorized and delivered services: Yes _No Receive, resolve, and track consumer grievances: Yes _No a) If yes, please briefly describe and provide a contact person (e-mail address or phone number) for additional information: b) * Note: Personal care services include those provided in aged and disabled waivers, the Personal Care Option, and through consumer-directed or cash and counseling programs. 27 APPENDIX B RESPONSES TO SUPPLEMENTAL QUESTIONS TO THE 2005 NATIONAL SURVEY OF STATE INITIATIVES ON THE LONG-TERM CARE DIRECT-CARE WORKFORCE State Survey response AARP section Question 1 Question 2 Question 4 Question 5 response Does your Does your state Are PCS agencies Do you know of any highly successful “best 38 responses or 38 responses or state directly have a system to required to systems” at the state, county, agency, or program 76% response rate 76% response rate set any PCS monitor if provide backup level to: worker Medicaid PCS services? Provide backup wages? are received? Track authorized and services delivered services Alabama Yes Yes Yes No Yes No No Alaska Arizona Yes. Identified agencies Yes. Has designed a that hire aides for Yes Yes No Yes Yes tracking system that is back-up and difficult currently being tested cases Arkansas Yes Yes No Yes No No Yes, no details provided. California Yes Yes Yes Yes Yes No No Colorado Yes. Consumer Directed Yes. As part of service Attendant Support management, self- program enables clients directing clients track Yes Yes No Yes No to manage their own service delivery services, including planning for backup attendant services Connecticut Yes No Delaware Yes Yes Yes No response No response No response No response Florida Yes Yes No Yes Yes No No Georgia Yes Yes No Yes No No No Hawaii Yes No Idaho Yes Yes Yes Yes Yes No No Illinois 28 Indiana Iowa Yes. Referenced a Yes hospital personal Yes Yes No No No emergency response system (PERS). Kansas Yes Yes No Yes Yes No No Kentucky Yes Yes No No Yes No No Louisiana Yes Yes No Yes Yes No No Maine Yes Yes Yes Yes No No No Maryland Yes Yes Yes Yes Yes No No Massachusetts Michigan Yes. MI Long Term Care Warehouse maintains the Yes Yes Yes Yes Yes Minimum Data Set Home Care (MDSHC) and service utilization data. Minnesota Yes. Track authorized Yes Yes No response Yes No No services and verification of delivered services. Mississippi Yes Yes No Yes No No No Missouri Yes Yes Yes Yes No response No response Montana Yes Yes No Yes Yes Yes Yes Nebraska Nevada Yes Yes No Yes Yes No No New Hampshire New Jersey Yes Yes Yes Yes No response No response No response New Mexico Yes Yes No Yes No No New York Yes Yes Yes No No response No response No response North Carolina Yes Yes No Yes No No response No response North Dakota Ohio Yes Yes No Yes Yes No response No response Oklahoma Yes Yes No Yes Yes No No Oregon Yes. “We are working on Yes getting a statewide Yes Yes Yes Yes registry of home care workers. Now each local area maintains a referral 29 list of providers. We also use agencies for backup.” Pennsylvania Yes Yes No Yes Yes No No Rhode Island South Carolina Yes. Authorizations and delivered services documented electronically Yes Yes No Yes Yes No through the state’s Case Management System (CMS) and Care Call system. South Dakota Yes Yes No Yes Yes No No Tennessee Texas Yes Yes No Yes Yes No No Utah Yes Yes No No No No No Vermont Yes Yes Yes Yes Yes No response No response Virginia Yes Yes No Yes No No No Washington Yes Yes Yes Yes Yes No response No response West Virginia Wisconsin Yes Yes No Yes No No response No response Wyoming Yes Yes Yes Yes Yes No No 30