Consumer-directed Care Research Articles

Does Mental Illness Affect Consumer Direction of Community-Based Care? Lessons From the Arkansas Cash and Counseling Program

Previous research from the Cash and Counseling Demonstration and Evaluation (CCDE) in Arkansas, New Jersey, and Florida suggests that giving consumers control over their personal care greatly increases their satisfaction and improves their outlook on life. Still, some argue that consumer-directed care may not be appropriate for consumers with intellectual disabilities or mental health diagnoses. This study examined how Cash and Counseling-a new option allowing consumers to manage an individualized budget equivalent to what agencies would have spent on their care-changes the way consumers with mental health diagnoses meet their personal care needs and how that affects their well-being. Using the Arkansas CCDE baseline and the 9-month follow-up data for individuals in the treatment and control groups, we compared and contrasted the experience of elderly consumers with and without mental health diagnoses utilizing logit regression. After examining several outcome measures, including satisfaction with care arrangements and the paid caregiver's reliability and schedule, unmet needs, and satisfaction with the relationship with paid caregivers, this study found evidence that, from the perspective of consumers, the Cash and Counseling program works well for participants with mental health diagnoses. Considering the growing need for long-term-care services and the limited resources available, a consumer-directed option makes sense, and it can be a valuable alternative for persons with mental health needs.

Measuring the Care of the Patient in Context

and others 1 introduces a new approach to measuring clinician performance that provides an important first step toward bringing together these two themes so fundamental to the practice of medicine. Physicians have long recognized that it is essential for good patient care not only to have the medical facts and scientific evidence but also to understand how these facts affect each patient as an individual human being. Peabody, in his classic and oftenquoted article, ‘‘The Care of the Patient,’’ emphasizes that we must understand the entire clinical picture: ‘‘What is spoken of as a clinical picture is not just a photograph of a man sick in bed; it is an impressionistic painting of the patient surrounded by his home, his work, his relations, his friends, his joys, sorrows, hopes, and fears.’’ 2 Some 50 years later, Tumulty reminded us, ‘‘Management means that the physician comprehends and is sensitive to the total effects of an illness on the total person, the spiritual effects as well as the physical, and the social as well as the economic. With the wisdom born of education and experience, the clinician attempts to prevent or to diminish, or to heal this sum total of effects. Specific forms of therapy are brought to bear directly upon a pathologic process. Management is concerned with the sickened person, and the family, and the community.’’ 3 In more recent times, this theme continues to be reflected in such phenomena as patient-centered care, shared patient decision making, and consumer-directed care. The importance of recognizing and learning from error dates back at least to the 13th-century Oath of Maimonides: ‘‘Today he can discover his errors of yesterday and tomorrow he can obtain a new light on what he thinks himself sure of today.’’ Nearly a century ago, Sir William Osler, continuing this tradition, advised young physicians to keep careful notes about their patients: ‘‘Begin early to make a three-fold category—clear cases, doubtful cases and

Health and Housing among Low-Income Adults with Physical Disabilities

The purpose of this study was to understand the impact of living environment on the health and access to health care of low-income working-age adults with physical disabilities. We conducted focus groups of participants with physical disabilities in the District of Columbia living in each of three housing situations (a homeless shelter, a nursing home, and an inaccessible house or apartment). Twenty-eight people participated in the focus groups. Most were male (79%) and African American (93%). Participants from a homeless shelter expressed concerns about accessibility and sanitation at the shelter. Nursing home participants expressed a need for privacy and autonomy that would foster consumer-directed care. Participants living in inaccessible apartments or houses worried about their ability to maintain daily living and social activities. Participants perceived barrier-free housing conditions to be a prerequisite for independent living and for ensuring their basic health and well-being.

Impact of a Health Promotion Nurse Intervention on Disability and Health Care Costs Among Elderly Adults With Heart Conditions

Patients with heart conditions in rural areas may have different responses to health promotion-disease Self-management interventions compared to their urban counterparts. To estimate the impact of a multi-component health promotion nurse intervention on physical function and total health care expenditures among elderly adults with heart conditions and to examine the impact of rural residence on the intervention effect. We analyzed data on 281 community-living Medicare beneficiaries with heart conditions from the Medicare Primary and Consumer-Directed Care Demonstration (a randomized controlled trial). We estimated ordinary least squares (OLS) models to determine the effect of the intervention on the change in functional status and log-linear models to determine the impact of the intervention on total health care expenditures over a 2-year period. The OLS models showed that the nurse intervention resulted in fewer impairments in Activities of Daily Living (ADL) (-0.307 on 0-6 scale, P = .055) at the end of 2 years. The effect of the intervention on ADL appeared to be stronger for rural than for urban participants (-0.490 vs -0.162, respectively). However, the difference was not statistically significant (P = .150). The effect of the intervention on Instrumental Activities of Daily Living (IADL) was not significant (P = .321). Average total health care expenditures were 6.5% ($1,981, 95% CI: -$8,048, $4,087) lower in the nurse group. The nurse intervention led to better physical functioning and has potential to reduce total health care expenditures among high-risk Medicare beneficiaries with heart conditions.

Paid Personal Assistance Services

This study examined the experiences of individuals who use paid personal assistance services (PAS). Structured interview data were collected from a convenience sample of 24 working-age individuals from diverse backgrounds recruited from Centers for Independent Living in nine states. Respondents described their general satisfaction with current paid PAS, but many reported previous experiences with poor care related to the low wages, lack of training of PAS providers, and an inadequate supply of providers. Respondents reported many unmet needs because of a shortage of hours provided by state programs and the lack of help with daily living activities, transportation, childcare, and social activities. The respondents strongly preferred consumer-directed care.

Letter

Back to table of contents Previous article Next article LetterFull AccessLetterScott A. Peebles Ph.D.Gareth Fenley M.S.W.Scott A. Peebles Ph.D.Search for more papers by this authorGareth Fenley M.S.W.Search for more papers by this authorPublished Online:1 Jun 2007https://doi.org/10.1176/ps.2007.58.6.878aAboutSectionsPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack Citations ShareShare onFacebookTwitterLinked InEmail "Consumer-Directed Care" and Systems TransformationTo the Editor: In the March 2007 issue of Psychiatric Services, LaBrie and colleagues ( 1 ) discussed the advent of consumer-directed care and inherent difficulties in its application to mental health care services. From the perspective of the majority of consumer advocates, "consumer-directed care" is a misnomer for this form of systems transformation. The apparent focus of consumer-directed care as defined by "scholars, policy makers, and members of the health care industry" ( 1 ) is on cost-cutting without due attention to the standard of care provided and health outcomes. LaBrie and colleagues correctly point out that this systems transformation, if left unaltered, will likely lead to fewer individuals' seeking care, greater mental and physical health problems left untreated, confused consumers who do not have the necessary information to make informed health care choices, and greater self-stigmatization (which, in and of itself, will lead to poor health outcomes). The last thing that most consumers of mental health care need is to be made "aware of the costs of care," as many consumers are painfully aware of these costs already. As an alternative to the so-called "consumer-directed care" movement, the recovery model and the patient- and family-centered care model offer an alternative that may be more cost-effective and more clinically efficacious. From a recovery perspective, true consumer-directed care centers on the promotion of empowerment, individualized and person-centered care, hope, and strengths-based care, among other concepts important to consumers of care and their advocates ( 2 ). Interventions such as supported employment, assertive community treatment, illness education, and family education and support are not widely available to consumers of mental health services. LaBrie and colleagues also underestimate the ascendance of peer-support services in mental health care ( 3 ). These recovery-based interventions are designed to provide a more holistic, more collaborative, and more person-centered form of care than traditional, medical-model treatment ( 4 ). Surely, the costs of mental health care (and health care in general) would fall if these evidence-based practices were widely available. Restricting access to such services through increased deductibles is antithetical to true consumer-directed care.The authors are affiliated with the Department of Psychiatry and Health Behavior, Medical College of Georgia, Augusta.

"Consumer-Directed Care" and Systems Transformation

"Consumer-Directed Care" and Systems Transformation

Report Cites Modern Quality Improvement Tactics and Consumer-Directed Care as Keys to Change

Report Cites Modern Quality Improvement Tactics and Consumer-Directed Care as Keys to Change

Report Cites Modern Quality Improvement Tactics and Consumer-Directed Care as Keys to Change

Report Cites Modern Quality Improvement Tactics and Consumer-Directed Care as Keys to Change

Consumer-Directed Health Care And The Courts: Let The Buyer (And Seller) Beware

In consumer-directed health care, patients will be expected to exert greater control over their spending decisions than before. As consumer-directed care gains market acceptance, courts will inevitably be involved in resolving challenges to the new arrangements. We anticipate that courts will be generally favorable toward consumer-directed care, but the new legal doctrine will not uniformly favor medical professionals and insurers. The information demands inherent in consumer-directed care will present particular legal challenges to physicians and insurers. Even as courts provide flexibility to reflect the new market realities, they will closely monitor how consumer-directed care is implemented.

Consumer-Directed Behavioral Health Care

Back to table of contents Previous article Next article LetterFull AccessLetterA. Kathryn Power M.Ed.Paolo del Vecchio M.S.W.A. Kathryn Power M.Ed.Search for more papers by this authorPaolo del Vecchio M.S.W.Search for more papers by this authorPublished Online:1 May 2007https://doi.org/10.1176/ps.2007.58.5.714AboutSectionsPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack Citations ShareShare onFacebookTwitterLinked InEmail Consumer-Directed Behavioral Health CareTo the Editor: The March 2007 Best Practices column, "Implementation of a Consumer-Directed Approach in Behavioral Health Care: Problems and Prospects," by LaBrie and colleagues ( 1 ) identified several important barriers in realizing the potential of consumer-directed behavioral health care. It is important, however, to differentiate consumer-directed care as successfully initiated with people who have physical or developmental disabilities and with older adults through such approaches as cash and counseling (C&C) from approaches that utilize a health savings account (HSA) model. Although both focus on promoting greater consumer choice and control over services, C&C and similar consumer-directed approaches typically utilize individualized budgeting for Medicaid consumers to self-manage services. As described by LaBrie and colleagues HSAs typically use the high-deductible approaches in private insurance markets ( 2 ). We agree that consumers require comprehensive information on quality as well as costs in order to fully utilize consumer-directed care approaches. Although we have a long way to go in the mental health system to achieve this goal, we do see hopeful signs with efforts such as the initiative by the U.S. Department of Health and Human Services to promote transparency and value-driven health care (www.hhs.gov/transparency). We do question LaBrie and his coauthors' characterization that mental health consumers lack adequate decision-making and self-care abilities to fully utilize consumer-directed care approaches. The Institute of Medicine ( 3 ) stated unequivocally that a "clear majority of individuals with mental illnesses (including those with severe illnesses such as schizophrenia) and substance use illnesses are able to make treatment and other life decisions." Regarding self-care, there is a wealth of evidence of the utility and effectiveness of mental health self-help as cited in both the U.S. Surgeon General's 1999 report on mental health and the 2003 report of the President's New Freedom Commission on Mental Health. Additionally, C&C approaches based on consumer direction have been successful with people who have significant cognitive impairments—including developmental disabilities—when decision-making supports are in place ( 4 ). Perhaps, the true barrier remains the stigma—evident in both society and mental health systems—that perpetuates negative stereotyping rather than focusing on the abilities and strengths of those served. Evidence is now being gathered on the effectiveness of consumer-directed mental health care. An analysis supported by the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration examined results of the C&C program for persons who received mental health services. Preliminary findings showed that this approach "works as well as for clients with mental health diagnoses with no discernible adverse effects on safety or health" ( 5 ). Consumer direction holds great promise in transforming how mental health services are delivered. Such approaches, in which consumers' self-identified needs, preferences, and choices are the principal drivers, will help us reach our shared destination—recovery.Ms. Power is director and Mr. del Vecchio is associate director for consumer affairs of the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration, Rockville, Maryland.

Occupational and Environmental Health Nursing in the Era of Consumer-Directed Health Care

Consumer-directed health care plans (CDHPs) present an opportunity to control health care costs. Health savings accounts (HSAs) and health reimbursement arrangements (HRAs) are two different approaches to providing pre-tax funding for CDHP enrollees. Each has a significant impact on the nature and business aspects of worksite health care. Worksite clinics can provide support via on-site education, expanded acute care services, and referral to other health-related benefits and resources for all CDHP enrollees. With attention to the type of employee health benefits funding support (HSA or HRA), occupational health nurses can maximize the effectiveness and value of worksite clinic services for CDHP enrollees.

Letter

Back to table of contents Previous article Next article LetterFull AccessLetterRichard A. LaBrie Ed.D.Kristina L. Greenwood Ph.D.Howard J. Shaffer Ph.D., C.A.S.Richard A. LaBrie Ed.D.Search for more papers by this authorKristina L. Greenwood Ph.D.Search for more papers by this authorHoward J. Shaffer Ph.D., C.A.S.Search for more papers by this authorPublished Online:1 May 2007https://doi.org/10.1176/ps.2007.58.5.714aAboutSectionsPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack Citations ShareShare onFacebookTwitterLinked InEmail In Reply: We appreciate the willingness of Psychiatric Services to provide a venue for discussing the application of consumer-directed approaches to people in need of behavioral health care. Power and del Vecchio's comments about our discussion draw from their experience with the cash and counseling (C&C) program to question our "characterization that mental health consumers lack adequate decision-making and self-care abilities." They suggest that "the true barrier remains the stigma" that is associated with behavioral health problems. As noted in our column, we agree with Power and del Vecchio that stigma is a fundamental problem. However, it is unlikely that we will soon eradicate the stigma associated with behavioral health treatment. For example, the Institute of Medicine ( 1 ) report cited by Power and del Vecchio noted that "the proportion of Americans who associated mental illness with 'violent or dangerous behavior' in 1996 was nearly double that found in the 1950 General Social Survey" ( 2 ). Although the relationship between violence and mental illness is weak, the public perception of this association is strong, leading to unnecessary stigma. Although it is important to deal with stigma, there are other barriers or problems that need to be addressed or, at the very least, taken into account when moving in the direction of self-directed care, including neuropsychological complications; poor self-efficacy; cognitive deficits associated with illnesses such as schizophrenia, major depression, and substance abuse; low motivation; hopelessness; and compromised compliance with medication regimens. It would be incorrect to infer, however, that behavioral health consumers necessarily lack adequate decision-making skills. Whether they do or not depends upon both the particular person and his or her particular problems or limitations. It might also depend upon the particular context. As we noted in our column, even behavioral health consumers with intact decision-making capacities—one who can access and understand information about treatment alternatives—might still be unable, for example, to make difficult decisions (we used low motivation to illustrate one such barrier). Capacity is static, whereas decision-making is dynamic and may vary with the circumstances.In sum, we agree with Power and del Vecchio that consumer-directed health care has promise in the area of behavioral health. In their letter they mention how, within the C&C program, Medicaid recipients benefit from the use of in-house supportive services. (One feature of the C&C program allows consumers to enlist a representative to assist in decision making.) The use of such an enhanced service component actually underscores the very point that we were attempting to make in our article: some patients—in particular, those with behavioral health problems—might be unable on their own to manage the challenges of consumer-directed care. That is precisely why we suggested that the care coordinator role be adopted in behavioral health care.

Financial Management Services in Consumer-Directed Programs

ABSTRACT Shifting from an agency-based model of personal assistance services to consumer direction has important consequences for both recipients and workers. In consumer direction, recipients assume the responsibilities of employing their attendants–for both self-directing their supportive services and being responsible for numerous fiscal responsibilities. Many states have eased these fiscal responsibilities among recipients in publicly financed personal care programs by using Financial Management Services (also known as fiscal intermediaries). This article introduces the major types of Financial Management Services organizations used by Medicaid consumer-directed personal care programs, and examines the extent to which the varied approaches can and do serve the needs of both recipients and workers. Despite the expansion of consumer-directed programs and the accompanying emergence of Financial Management Services, these organizations have not been extensively studied or evaluated. The paper concludes with a discussion of the challenges, opportunities, and policy implications of the current practice; and suggests directions for future research.

Best Practices: Implementation of a Consumer-Directed Approach in Behavioral Health Care: Problems and Prospects

Consumer-directed care, a payment system designed to make patients aware of the costs of care, requires treatment seekers to be active participants in their health care. Core components of consumer-directed care, such as higher deductibles and increased decision-making responsibilities, might preclude its easy translation from medical to behavioral health care. Aspects of behavioral disorders will force providers, insurers, and patients to compensate for unique barriers to increasing self-care, such as stigma, neuropsychological complications, and poor self-efficacy. This column describes important components of consumer-directed care and the unique barriers that behavioral health care creates for those components. Possible best practices are suggested for surmounting those barriers.

Best Practices: Implementation of a Consumer-Directed Approach in Behavioral Health Care: Problems and Prospects

Consumer-directed care, a payment system designed to make patients aware of the costs of care, requires treatment seekers to be active participants in their health care. Core components of consumer-directed care, such as higher deductibles and increased decision-making responsibilities, might preclude its easy translation from medical to behavioral health care. Aspects of behavioral disorders will force providers, insurers, and patients to compensate for unique barriers to increasing self-care, such as stigma, neuropsychological complications, and poor self-efficacy. This column describes important components of consumer-directed care and the unique barriers that behavioral health care creates for those components. Possible best practices are suggested for surmounting those barriers.

Commentary: Social Experimentation at Its Best: The Cash and Counseling Demonstration and Its Implications

The Cash and Counseling demonstration was the most significant long-term care policy experiment undertaken in more than a decade. It is an archetypal example of the ability of research to play an important role in public policy (Kemper 2003). It has altered thinking about the effects of consumer-directed care and led a number of states to incorporate consumer-directed care in their home care programs (Mahoney et al. 2007). The funders who conceived and paid for it, the national program office that ran it, the states that were willing to be laboratories to test it, and the research team that evaluated it all should be commended for their achievement. This paper assesses the demonstration's strengths and weaknesses and explores its implications for social experimentation and policy.

Effects of Cash and Counseling on Personal Care and Well‐Being

To examine how a new model of consumer-directed care changes the way that consumers with disabilities meet their personal care needs and, in turn, affects their well-being. Eligible Medicaid beneficiaries in Arkansas, Florida, and New Jersey volunteered to participate in the demonstration and were randomly assigned to receive an allowance and direct their own Medicaid supportive services as Cash and Counseling consumers (the treatment group) or to rely on Medicaid services as usual (the control group). The demonstration included elderly and non-elderly adults in all three states and children in Florida. Telephone interviews administered 9 months after random assignment. Outcomes for the treatment and control group were compared, using regression analysis to control for consumers' baseline characteristics. Treatment group members were more likely to receive paid care, had greater satisfaction with their care, and had fewer unmet needs than control group members in nearly every state and age group. However, among the elderly in Florida, Cash and Counseling had little effect on these outcomes because so few treatment group members actually received the allowance. Within each state and age group, consumers were not more susceptible to adverse health outcomes or injuries under Cash and Counseling. Cash and Counseling substantially improves the lives of Medicaid beneficiaries of all ages if consumers actually receive the allowance that the program offers.

Assessing Assessments of Decision-Making Capacity: A Few Legal Queries and Commentary on "Assessment of Decision-Making Capacity in Older Adults"

THE legal and ethical principle of autonomy is central to the enterprise of making decisions about major life activities, including medical care and the management of one’s financial affairs, in modern American culture. To be truly autonomous, a choice must be made voluntarily, based on sufficient relevant information, and by a capable decision maker. Thus, the ability to accurately assess their decision-making capacity is essential to protecting the rights of capable older people regarding personal and financial integrity while safeguarding those individuals without sufficient self-protective capacity against undue risks of harm stemming from their vulnerabilities. Our ability to separate older persons with severe impediments to autonomous decision making from those who presently are able to make their own choices has always been important in medical and financial affairs, but it grows increasingly so as the movement toward consumer-driven or consumer-directed health care and homeand community-based long-term care pick up momentum. Hence, the productive efforts by Jennifer Moye and Daniel Marson and their respective colleagues to develop better methods for assessing the medical and financial decisionmaking capacity of older adults should be applauded. In their review article in this issue (Moye & Marson, 2006), they articulately summarize the significant progress made recently regarding the validity and reliability of emerging decisionmaking capacity assessment techniques. Certainly, replacing the virtually unguided subjectivity that historically has characterized the process of capacity assessment with, as much as possible, more consistent and objective measures represents progress. Such progress notwithstanding, this legal skeptic will outline four cautions and queries, mainly in the form of suggestions for further research by Moye, Marson, and other investigators in this sphere. First, it would be useful for researchers to compile data on just how prevalent the problem is in which older adults lack sufficient capacity to make their own medical or financial decisions. Moye and Marson observe that the capacities being assessed in the studies they review, ‘‘although technically legal capacities, are rarely subject to judicial review.’’ In many instances, it probably is desirable from a policy perspective that capacity assessments both take place and are acted on outside of the formal legal system (Kapp, 2002). However, sometimes legal involvement, mainly though the guardianship process, is necessary to adequately protect the interests of the involved parties; therefore, it would be useful to have a better grasp of the prevalence of decisional incapacity so as to gauge how much of a strain really would be placed on the judicial structure were we to encourage medical and financial professionals, as well as older individuals and their families, to initiate more judicial oversight over the determination of decisional incapacity and the aftermath of that determination. Put differently, even if we wanted the courts to be more involved in reviewing the presence or absence of legally pertinent decision-making capacities in older people, would the number of potential legal cases make a more official approach unrealistic? Conversely, is the actual number of significantly incapacitated elders who have failed to execute advance directives so small that greater utilization of the courts is highly feasible? Second, Moye and Marson correctly note that the term capacity generally is employed ‘‘to refer to a dichotomous (yes or no) judgment’’ about an individual’s ability to make a particular kind of choice. The dichotomous approach, embodied in the legal doctrine of informed consent, makes good sense if we assume that, for every decision, there is one and only one decision maker—namely, either the affected, capable individual or a surrogate who has officially or unofficially taken over decision-making authority from the incapable individual about whom decisions need to be made. This is a dubious proposition, though. We should subject to empirical investigation the question of whether most medical and financial decisions involving older persons are made in this fashion, or whether instead a large percentage of these decisions actually are made in an informal, shared way that combines the input of family and friends with that of the individual for whom the decision is being made. Current legal structures do not deal well (particularly in the medical arena) with the model of decision making as a shared enterprise rather than one dependent on a single, lone decision maker; if the shared decision-making model often reflects reality, however, then capacity assessment researchers will need to develop tools to determine when an older person is Journal of Gerontology: PSYCHOLOGICAL SCIENCES Copyright 2007 by The Gerontological Society of America 2007, Vol. 62B, No. 1, P12–P13

Transition of New Residents to Long-Term Care: Basing Practice on Residents’ Perspective

Admission to a long-term care facility is a time of disorganization and adaptation. New residents experience transition breakdown beginning with a sense of homelessness as they learn the rules of institutional living. With the passage of time, residents may be able to create a place of their own. Story sharing is an important way to help new residents integrate into the unfamiliar long-term care facility.