Background

It has been more than 40 years since the first home care demonstrations were developed to test whether it was possible to serve older people with severe disability in their own homes rather than in skilled nursing facilities. At the outset of these efforts and for years after they had been implemented, critics of in-home care argued that older people with severe disability could only safely be cared for within the walls of a facility, with 24-hr staffing. The fraud, abuse, and safety concerns expressed by industry representatives and policymakers meant that for many years the overwhelming majority of public Medicaid funds were allocated only to nursing home care. As home and community-based service demonstrations increased in prevalence and data began to show that the quality and safety issues had not materialized, home care options became part of the long-term services landscape. More than 25 home care demonstrations, including the National Long-Term Care Channeling Demonstration of the 10 states, provided strong evidence that home care recipients did not experience safety or quality problems at higher rates than comparison or control group members ( Applebaum, 2012 ; Kemper, Applebaum, & Harrigan, 1987 ).

Evidence from these home care demonstrations and grass roots lobbying efforts by advocates culminated in the 1981 legislation allowing states to request a waiver from Medicaid to fund home and community-based services. The availability of a public funding source combined with the growing recognition that individuals with disability could be served in their own homes, resulted in the tremendous expansion of home care. In 2014, home and community-based services (HCBS) Medicaid expenditures top $80 billion for individuals with disability of all ages, and in many states, the number of older people served through HCBS under Medicaid is greater than the number of Medicaid nursing home residents age 60 and older ( Eiken, Sredl, Burwell, & Saucier, 2016 ). Two decades ago, this would have been unimaginable.

Initially, home care expansion was slow, and in many states, nursing home industry resistance was successful in blocking their early development. At the outset of home care expansion, service providers developed a somewhat inflexible system of services, much more rooted in the institutional mode of care delivery. For example, providers often delivered a more skilled array of services, in 4-hr blocks of time, in a manner that was convenient for the provider, but not for the consumer or their family. In fact, for many years, state programs resisted offering homemaker services at all, arguing that we should not be using public dollars to send in workers to clean people’s homes. Consumers and families recognized that the primary needs of individuals with disability were not skilled services, but the everyday personal care services that we all need for life. Ultimately, personal care services became the most widely used service in the home and community-based care packages.

Despite the widespread availability of in-home services today, it should be noted that at the onset, home care itself was a radical idea and the concept of self-direction—that older consumers with severe disability could somehow be in charge of their own care—was not even in the realm of possibility except in a few pioneering states like California and Michigan. With home care firmly taking hold, the next step in the evolutionary development of the long-term services system was to expand consumer choice through the concept of self-direction. Just as the expansion of home care had been the subject of concern, so too was the idea of self-direction. As the Cash and Counseling Demonstration began development and implementation, the initial reaction to the idea of self-direction from many providers and policymakers was: how will such programs, without the benefit of professional supervision, be able to ensure quality? Ironically, many of these concerns came from the home health and nursing home sectors who themselves had been the subject of a long-standing series of media and governmental investigations about quality. Despite nursing home and home health providers being criticized for poor quality, self-direction was challenged for not having comparable inspection systems to those areas. The underlying assumption was that the professional inspection model provided a mechanism to ensure quality that was absent in a self-direction model.

Many changes have occurred in the long-term services system in the past 20 years. The idea that consumers should be at the center of the care experience has now become well established in both nursing homes and in-home services provision. The experiences of the Cash and Counseling Demonstration, highlighted earlier in this issue, helped to paint a very different picture about the path to quality. Results of the demonstration, using a randomized evaluation design, found that self-directed participants were not only much more satisfied with services, but they were also safer and healthier than the control group using agency-based services ( Carlson, Foster, & Brown, 2007 ; Foster, Dale, & Brown, 2007 ). These results, and an array of experiences across the nation, have provided a powerful response to critics suggesting that self-directed participants are more susceptible to health and safety problems. The success and concepts of self-direction have now become part of the long-term services system. For example, participant-centered planning is now a core requirement for both nursing home residents and home and community-based waiver participants. Items from a preference tool for nursing home residents have actually been incorporated into the minimum data set required of every nursing home resident in a publicly funded facility. Home care assessment tools used in the HCBS waiver programs across the nation include assessment questions that address consumer needs and preferences. Both nursing facilities and home care programs are being evaluated based on their ability to assess and meet the preferences of consumers. The premise of this paper is that self-direction has impacted service and system design and approaches to quality. Admittedly, the system still strives to improve, but it has made major advances over the past two decades, and some of these important changes we believe were inspired by the development and expansion of self-direction.

Self-Direction and Gaining a Better Understanding of Quality

Although the home and community-based services system is now well established, the approach to assuring the quality of in-home services continues to be criticized. Certainly, these concerns cut across the range of long-term service settings, including nursing homes and assisted living, and the expanding self-directed network of services. Despite considerable efforts to enhance the quality of long-term services, four major barriers continue to challenge these efforts: (1) definition of quality, (2) measurement of quality, (3) data collection procedures, and (4) using data to improve.

One of the major barriers to achieving and assuring quality is the lack of consensus on defining the concept of quality. All of us as consumers vary in what we like and how we view quality, and thus, it is often difficult to agree on a standardized definition. Because the delivery of in-home services has an array of stakeholders involved in the process, such as consumers, families, direct care workers, program administrators, and regulators, a universal definition of quality is even more elusive. One of the challenges in developing a quality strategy for in-home services is that the array of stakeholders may share some common values but can also have different perspectives on quality. For example, a consumer may have a different idea about safety than a family member or a regulator. To achieve more autonomy, a consumer may be willing to experience a higher degree of risk. A funder may have a very different idea about the importance of efficiency compared with a consumer or a family member. The design of any publicly funded delivery system has to balance this range of perspectives.

One of the strengths of self-direction is that the concept clarifies that, despite the range of stakeholders, program quality has to come first and foremost from the consumer. In our quality work with the Cash and Counseling demonstration, we used a series of individual interviews and focus groups to gain a better understanding of quality from the view points of the consumer. That work identified four components of quality that were most important to participants, including the principles of: independence and choice; relationships; knowledge and support; and health, safety, and accountability. Independence and choice involves consumers being able to have things done their way. Relationships is being cared about and being treated with respect and dignity. Knowledge and support includes having information to make good decisions. Health, safety, and accountability entails knowing that the worker was there to help to do the things that the consumer could not do independently and feeling that you could count on the person. Consumers not only thought that safety was an important quality dimension, but also felt that it was their job to be in charge of safety.

Data collection efforts with the other major stakeholders—workers, program administrators, funders, and regulators—also examined this question. The direct care workers and the program administrator perspectives on quality were very much in line with the views of the consumers. The funding agency and regulatory viewpoints, while also highlighting the need for consumer choice, focused much more heavily on fraud and abuse, efficient use of resources, and having a systematic approach to getting input from consumers. Although not surprising, these differences do have important implications for the design and assessment of quality systems.

The challenges associated with the definition of quality also have an impact on measurement. Although it is the case that a range of measures are being developed, particularly in the area of consumer satisfaction, reliable and valid outcome measures are still in their developmental stage. A recent expert panel being coordinated by the National Quality Forum is now attempting to come up with recommendations of promising measures of home care quality. The panel has certainly identified a number of potential measures, but they have also discussed the strong need for more rigorous measures to be developed in a number of domains of quality. In particular, the limited number of outcome measures about the effectiveness of in-home services has been an issue identified by the expert panel. It is still the case that we use measures that are available, and in some instances, the most important component of quality, whether participants met their goals, may not be the area we actually measure.

Accompanying the measurement challenges are questions about the ability of states and programs to collect such data. In particular, consumer outcomes data present a major barrier. Collection of data directly from consumers is costly, requiring expertise on the techniques of data collection and staff or resources to actually collect such data, and expertise to process and analyze these data. Other types of information, such as rates of nursing home placement, program withdrawals, the lag time between when the participant chooses to self-direct their supports and when they actually start to self-direct, provider no-shows, or costs are also important and require both precision of measurement, data collection, processing expertise, and resources.

Finally, organizations need to have the ability to use the actual data to improve. Even when programs do collect information, they are not prepared to think about how such data can be used to modify the services provided. Does the organization have the staff and management expertise to understand findings and create a plan to modify service delivery approaches accordingly? When data are not used to improve, individuals collecting the information are rightfully not concerned about the quality of data, leading to even less desire to use or collect such information.

Quality Lessons From Cash and Counseling

The Cash and Counseling initiative conducted in the 15 states included the design of a quality management system that was tested in the latter part of the demonstration. Although only partially implemented and evaluated, that work does provide some preliminary lessons about quality in home and community-based services. A more in-depth description of the quality improvement model developed for the program is available, but here we present five major quality themes noted in the report ( Applebaum, Schneider, Kunkel, & Davis, 2004 ). We believe these themes are applicable for both self-directed and agency-based services.

Theme 1: Quality Is Achieved Because of Choice, Not in Spite of It

In the early days of self-direction, there was a concern that the absence of outside provider agencies would result in a greater potential for fraud, abuse, and poor quality care. To the contrary, the early experience indicated that consumers will choose quality when they have the opportunity to do so. Choice should be thought of as an activity that enhances quality, not a liability to assuring it.

In the early days of self- direction, there was a concern that the absence of outside provider agencies would result in a greater potential for fraud, abuse, and poor quality care. To the contrary, the early experience indicated that consumers will choose quality when they have the opportunity to do so. Choice should be thought of as an activity that enhances quality, not a liability to assuring it.

Theme 2: Consumers Can Be the Agents of Quality

With appropriate supports, resources, and information, consumers can take on the primary responsibility to make sure they receive high-quality services. If the consumer needs or wants assistance, he or she can appoint a representative, usually an unpaid family member, to help them. Strong program planning and refinements help to put supports and resources in place to assist consumers in this role. Older consumers with disability repeatedly reported their interest and expertise in making sure they received quality assistance.

Theme 3: Programs Can Be Designed to Maximize Consumer Ability to Receive High-Quality Services

It is critical that when a program is being developed, the supports needed for consumers to succeed are built into the design. For self-direction, for example, this means consumers having clear and understandable training materials to succeed in their role. Consumers were willing to take on the role of supervisor, but for many, this was a new experience and training was requested. Focus groups conducted prior to the start of Cash and Counseling showed that participants wanted a financial management service to help them with any bookkeeping, taxpaying, and record-keeping requirements, and as opposed to the traditional system, where the professional knows best, they wanted support brokers (sometimes called counselors or coaches) to help them think creatively about their needs, develop backup plans, find needed resources, and think through how to handle personnel issues and worker training ( Mahoney, Simon-Rusinowitz, Loughlin, Desmond, & Squillace, 2004 ). The Centers for Medicaid and Medicare (CMS) now mandates these supports in self-direction programs.

Theme 4: Monitoring and Accountability Functions Can and Should Coexist With Consumer-Centered Program Quality Activities

Despite wanting the autonomy to be in charge of the services, consumers are also interested in health and safety. However, consumers did not want to give up choice and autonomy to be as safe as someone else thought they should be. Consumer-centered quality can achieve both goals.

Theme 5: Quality Strategies Start With Program Planning, Not With the First Day of Service Delivery

Too often, quality assurance efforts are an afterthought and do not receive attention until services are ready to begin. It is paramount to recognize that consumers have a critical role in quality management, and program design needs to reinforce that role from the moment the consumer enters the program.

Policy and Regulatory Issues Remain

Although the Cash and Counseling initiative and the many additional changes that have occurred provide a clear indication of an improved system of long-term services and supports, it is also evident that there is much more work to be done. System design, quality improvement, and regulatory issues remain. And as discussed in this issue, other policy changes now underway may compromise some of the advances that have occurred.

System Design

As noted, the emphasis on hearing the voice of the consumer has been considerable. In the major long-term settings—home, supportive housing, assisted living, and nursing homes—making sure that participant preferences are assessed has become accepted practice. This represents a major change from an earlier era, where the professionals were more likely to develop the plan of care based on their knowledge and experience. Despite the tremendous progress on voice, the system has considerable progress to make on the choice component. Choice can be limited in several major ways. First, individuals with low to moderate incomes who are not eligible for Medicaid in many communities are not able to afford the needed home care services. Second, in many communities, the supply and quality of home and community-based services mean that in some cases, the needed services are just not available. Finally, despite the expansion of self-direction, in many communities, this option is still not available. Service restrictions are commonplace in the supportive housing and assisted living arenas as well. This means that although we have improved our ability to hear the voices of consumers, our ability to ensure real choice is still often limited, especially for low- and moderate-income older adults.

This means that although we have improved our ability to hear the voices of consumers, our ability to ensure real choice is still often limited, especially for low and moderate income older adults.

Regulatory Issues

We have made considerable progress in recognizing the importance of the consumer. The quality framework developed by CMS for states with HCBS waivers was an important step forward in highlighting the importance of the participant in achieving quality. The “Guidance for Implementing Standards for Person-Centered Planning and Self-Direction in Home and Community-Based Services Programs” issued by HHS Secretary Kathleen Sibelius in June of 2014 (as required under Section 2402a of the Affordable Care Act) were also an important step. However, at the end of the day, the quality assurance and improvement strategies used in long-term services are still dominated by the inspection model. Perhaps, the best example of this philosophy is the nursing home star rating, which continues to exclude the resident or family voice from the rating system. Although the home and community-based quality approaches do a better job of incorporating consumer input, it is still limited in scope. The regulatory philosophy that drives the current system continues to be based on an inspection model. Under this approach, it is expected that through a survey and audit model, the regulatory unit at the federal or state level can come in on a periodic bases (1 year–18 months) and ensure the quality of the services provided. Many have written about the limitations of such an approach, but yet it prevails. It will always be important to have an inspection component to any quality system; however, it needs to be in a supporting role, rather than the dominant act. Participant direction could itself become inflexible if regulators do not keep a balanced perspective. Two current examples are worth watching: the argument over mandatory uniform training as opposed to readily available voluntary training tailored to the participant’s needs and the caregiver’s experience and the effort to introduce electronic systems to verify whether workers show up on time, even when the worker is a family member providing hundreds of hours of unpaid time.

Quality Improvement

The regulatory approach described above has resulted in quality assurance rather than improvement as the dominant quality strategy. This means that most programs and states do not put resources into widespread or rigorous data collection efforts with consumers and their families and that most systems are designed to catch problems after they have occurred. There are good reasons why data collection efforts are difficult to implement. But at the end of the day, it is impossible to have a high-quality system that does not have a robust mechanism for hearing the voices of consumers and involving them in the design, implementation, and evaluation of the program. The idea of quality improvement or going upstream to prevent problems is not the typical approach used in long-term services. Our experience with self-direction indicates that participants will take a more active role in achieving quality if we create a support system to assist them in doing so. It is our contention that this approach can be successful across the long-term services spectrum.

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Author notes

Decision Editor: Robert B. Hudson, PhD

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