Consumer Directed Care
CONSUMER DIRECTED CARE
According to the definition developed by the National Institute on Consumer-Directed Long-Term Services, consumer direction of long-term care services, or consumer-directed care, is both a philosophy and a practice model for home care. As a philosophy, it emphasizes consumer choice and control, recognizing that service recipients themselves are the ones who best know their needs and preferences and, as such, should have primary authority and responsibility for making decisions about those services. In practice, consumer direction means that consumers make concrete choices about their care and ultimately manage the delivery of their services to the extent that they are willing and able to do so.
While people ordinarily associate consumer direction with hiring and firing workers, there is more to it than that. It also involves consumers: having good information about the service network in order to make informed decisions; being involved in the care planning process; selecting home care agencies and workers; training workers; and monitoring the quality of services by providing performance feedback to workers and provider agencies (Eustis and Fischer). However, with the additional information and authority over services also comes increased responsibility for consumers to understand their service needs and preferences and to manage the delivery of their care.
In addition to increased consumer control over service management, consumer-directed care also often allows for more flexibility in terms of who delivers the services. Many consumer-directed care programs offer consumers the opportunity to hire those who are most familiar to them—family members, friends, and neighbors—to serve as independent (nonagency) providers of home care services.
Which services do consumers direct?
The term personal assistance services is often used by younger adults with disabilities to describe what is known in the field of aging services as home care. These refer to "tasks. . .that individuals would normally do for themselves if they did not have a disability" (Litvak, Zukas, and Heumanm).
Specifically, these tasks relate to personal care/activities of daily living (i.e., bathing, dressing, toileting, mobility, and transfer), instrumental activities of daily living (i.e., housekeeping, chore services, laundry, meal preparation, menu planning, transportation, and money management), communication (i.e., reader services for those with visual impairments and interpreter services for those with hearing impairments), and paramedical services (i.e., administration of medication, injections, catheterization, and ventilator care). Also included may be home modifications, assistive devices and technologies, and care management. Depending on the program, some or all of these services may be directed by consumers.
What does service management involve?
Managing home care services involves many responsibilities. These include, but are not limited to: recruiting, screening, interviewing, hiring, scheduling, training, supervising, paying, withholding taxes, providing performance feedback to workers and, if necessary, firing workers. Other tasks that may be associated with service management include conflict resolution and self-advocacy. Many consumer-directed care programs allow consumers to select surrogates or authorized representatives such as family members or friends to handle these responsibilities on their behalf, and some programs provide support and assistance with these tasks for consumers (Flanagan and Green).
History of and trends toward consumer-directed care
The underpinnings of consumer-directed care can be found in the independent living movement that started in the 1970s, which was led by persons with disabilities who demanded their rights to live independently and participate fully in mainstream society. The idea behind this model is that persons with disabilities are hindered or impaired by barriers in their environment rather than by their physical or cognitive disabilities. One such barrier has been a lack of appropriate long-term care services mostly in the form of personal assistance services (Litvak, Zukas, and Heumann; Batavia, DeJong, and McKnew).
Consumer-directed care has been much slower in developing in the field of aging services, only gaining prominence during the 1990s. A 1996 survey of state administrators found 103 consumer-directed care programs throughout the United States (Lagoyda et al.). In some states (such as Oregon, California, Maine, and Wisconsin), these programs have been well-established parts of the long-term care system; however, in other states (such as Arkansas, New Jersey, and Ohio), these programs are relatively new or still under development.
In the movement toward increased consumer choice and control, disability communities (those with physical disabilities, cognitive and developmental disabilities, and psychiatric disabilities) have taken a much broader approach, emphasizing self-determination—individuals' overall control over their lives and ability to participate fully in society. However, in the aging community, the focus has been limited to consumer direction of long-term care services. And while in the disability communities consumers have led the movement toward self-determination and self-direction, in the field of aging services, the impetus toward consumer direction has come largely from professionals.
Within the field of home care in general, there has been much movement toward consumer direction. During the 1980s and 1990s the Medicaid Personal Care Services Benefit Option, which offers more flexibility for consumer-directed care than traditional Medicaid home and community-based services waiver programs, expanded greatly as a source of funding for personal assistance services. As of 2000, more than thirty states participated in this program. Typically, however, the home services programs that offer the most flexibility and choice in their consumer-directed care options rely on state funds due to the more restrictive rules under Medicaid (Scala and Mayberry).
The 1990s saw increased commitment on the part of the federal government to explore consumer-directed care as a service option. The long-term care proposal developed in 1992 by the Clinton Administration Task Force on Health Care Reform included a consumer-directed option. With funding from the Administration on Aging and the Office of the Assistant Secretary for Planning and Evaluation, the National Council on the Aging, Inc., and the World Institute on Disability established the National Institute on Consumer-Directed Long-Term Services, which has helped to define the concept of consumer direction and that provides information and technical assistance to states about consumer-directed care. In addition, in the late 1990s, two major grant initiatives by the Robert Wood Johnson Foundation, the Cash and Counseling Demonstration Program (which is also supported by the Office of the Assistant Secretary for Planning and Evaluation) and the Independent Choices program, have examined consumer-directed care through various research and demonstration projects.
Barriers to consumer direction
There are several reasons why consumer-directed care has taken so long to develop in the field of aging services. First, the overarching goal of home care for older adults has been simply to keep seniors out of nursing homes, rather than to foster choice and self-determination. A second reason is the general paternalistic bias in long-term care toward the safety and protection of clients, as evidenced by current regulatory practices, which assumes that consumer autonomy— including the right to make poor choices—is of lesser importance (Scala and Mayberry).
However, underlying some of professionals' concerns about consumer-directed care are legitimate tensions between the balance of autonomy and risk for their clients. Most professionals generally respect consumers' desires and preferences for choice and autonomy; however, they also feel very real professional responsibility to assure their clients' well-being and quality of care as well as to protect their agencies/states from liability in the event that consumers make poor choices (Scala, Mayberry, and Kunkel; Micco, Hamilton, Martin, and McEwan).
Finally, one of the biggest barriers to consumer-directed care is concern on the part of professionals and states about quality assurance—especially about fraud and abuse. This is especially the case in programs that allow the use of independent providers who are trained and monitored by consumers, rather than by home care agencies. In their survey of state administrators, Robert Lagoyda and colleagues found this to be a leading concern.
Rationale for consumer direction
A number of other factors have combined to bring consumer-directed care to the forefront within the world of aging services at the beginning of the twenty-first century. The 1990s brought increased emphasis on consumer preferences and autonomy (and how these relate to consumers' quality of life) within the field of aging services. Consumers have become more involved in all aspects of their care, from participating in the care planning process to expressing their opinions about their care through consumer satisfaction surveys administered through home care programs and nursing facilities alike. In addition, there has been increasing concern over the quality of agency-provided services received by home care consumers. The need to cut the rising costs of long-term care has also contributed to the current interest in consumer-directed care (Simon-Rusinowitz et al.).
Another driving factor behind the movement toward consumer-directed care has been the dramatic shortage of frontline workers, which plagues the field of long-term care. By allowing consumers to hire family and friends as independent providers, consumer-directed care may be able to infuse new workers into the system and alleviate this shortage. Also contributing to the increased emphasis on consumer-directed care is the aging of the baby boomers, who are viewed as more likely than the current generation to demand more autonomy and control over the management and delivery of their long-term care services when they eventually need them.
Finally, legislative efforts and judicial decisions have also fueled the drive toward consumer-directed care. In 1998 the MiCASSA (Medicaid Community Attendant Services and Supports Act) was introduced in Congress. This bill offered Medicaid-eligible persons with disabilities the option of choosing personal assistance services and supports in their own communities, rather than placement in a long-term care facility. The year 1999 brought even more attention to the issues of consumer choice and control with the Supreme Court decision in Olmstead v. L.C., which stated that "unnecessary segregation of persons in long-term care facilities constitutes discrimination under the Americans with Disabilities Act" (Rosenbaum). This decision is leading many states to examine (and potentially to expand) their home and community-based options. In the event of increases in home and community-based options, disability advocates will likely argue for such options to incorporate consumer direction.
Models of consumer direction
Not surprisingly, several different models of consumer-directed care have been developed over the years in order to accommodate consumers' differing needs, abilities, and preferences regarding their involvement in the management of their services. These models, going from most to least consumer-directed, are described below.
In the direct pay/cash and counseling program, consumers manage both the funding and the delivery of their services. Consumers may receive an actual check or vouchers to use to pay for their care, and they handle all the employer-related responsibilities. Consumers also are the employer of record, accepting all liability for personal injury (to themselves and their workers) and for employment tax and benefits for their workers.
In the supportive intermediary model, consumers handle as many of the employer-related responsibilities as they want to or are capable of and are the employer of record. An intermediary agency (either the state/program or a third-party agency contracted by the state/program) provides support or assistance with the tasks the consumer is unable or unwilling to assume. Most often this assistance takes the form of doing payroll, taxes, and paperwork for consumers. However, other supports include recruitment assistance, criminal background checks on workers, training workers, and more.
In the last model, self-directed care management/agency with choice, the state/program (or the home care agency) handles the money and most of the service management responsibilities (recruiting, interviewing, hiring, training, paying, and firing workers) and is the employer of record. Consumers may interview and select workers (who are sent out from agencies) and provide performance feedback to workers and agencies.
Finally, relatively few programs offer consumers a range of these models to choose from within a single home care program—what is known as a spectrum intermediary model (Flanagan and Green). This allows consumers to choose the level of responsibility that they wish to assume, rather than force them into a traditional home care program if they do not wish to handle all of the responsibilities associated with one consumer-directed model.
Implications and future issues
Consumer-directed care provides a long overdue opportunity for consumers to have more control over their management and delivery of their home care services and for home care programs to become more responsive to clients' needs and preferences. Nevertheless, it is not without significant implications for both consumers and state administrators wishing to implement consumer-directed care.
For consumers, this model offers them the chance for increased autonomy and choice with regard to their services. This may include more hours of service, more flexibility in scheduling those hours, more input into who provides those services, and possibly better quality of care. However, with this autonomy also comes responsibility. First and foremost, consumers must know what they want and need in terms of services and providers and must have realistic expectations about these. In addition, the employer-related responsibilities associated with consumer-directed care can take a great deal of time and energy. Recruiting and hiring care providers are difficult tasks, especially in this era of worker shortages and low wages for workers. And while the option of hiring family members or friends may alleviate this problem, consumers who do so may also be faced with the uncomfortable prospect of combining a business relationship (i.e., employer to employee) with their personal relationship. Consumers must also have reliable back-up plans for when independent providers are unable to show up for work.
For state officials, consumer-directed care also has some significant implications. Consumer-directed care has the potential to ease the provider shortage through the use of independent providers, but with the low wages and lack of benefits that are still likely to exist in such programs, retaining quality workers will remain a challenge. Enabling consumers to hire independent providers may also allow for better matches between clients and workers and consequently improved consumer satisfaction for both consumers and workers. However, as in the present long-term care system, the potential for fraud and abuse still exists, particularly if the state has a more limited role in quality monitoring.
Consumer-directed care also has the potential to reduce home care costs by utilizing independent providers, which cuts out the administrative overhead charged by home care agencies. Such savings may allow home care programs to serve additional clients. However, these cost savings may be offset by other costs associated with consumer-directed care, such as the cost of training clients as to their service management responsibilities. Many consumers may not have prior experience with such responsibilities, and thus may require some type of training or guidance.
Finally, there is the issue of liability. Despite the fact that there has been very little in the way of litigation against agencies or privately hired providers, this nonetheless is a significant concern for states (Lagoyda et al.; Kapp). States thinking about implementing consumer-directed care may also need to revisit their Nurse Practice Acts in order to allow for the delegation of nursing tasks to unlicensed personnel such as independent providers.
Consumer direction is still in its infancy within the world of aging services. There is still much research to be done, especially with regard to cost effectiveness and quality of care. The results of demonstrations such as the Cash and Counseling Demonstration and Independent Choices Programs are likely to provide some results that may provide further evidence of the viability of consumer-directed care as a long-term care policy option.
Marisa A. Scala
See also Autonomy; Home Care and Home Services; Long-term Care; Personal Care.
Batavia, A. I.; DeJong, G.; and McKnew, L. B. "Toward a National Personal Assistance Program: The Independent Living Model of Long-Term Care for Persons with Disabilities." Journal of Health Politics, Policy, and Law 16 (1991): 523–545.
Eustis, N. N., and Fischer, L. R. "Common Needs, Different Solutions? Younger and Older Home Care Clients." Generations 16 (1993): 17–22.
Flanagan, S. A., and Green, P. S. Consumer-Directed Personal Assistance Services: Key Operational Issues for State CD-PAS Programs Using Intermediary Service Organizations. Washington, D.C.: MEDSTAT, 1997.
Kapp, M. B. "Improving Choices Regarding Home Care Services: Legal Impediments and Empowerments." St. Louis University Public Law Review 10 (1991): 441–484.
Lagoyda, R.; Nadash, P.; Rosenberg, L.; and Yatsco, T. Survey of State Administrators: Consumer-Directed Home and Community-Based Services. Washington, D.C.: The National Council on the Aging, Inc., 1999.
Litvak, S.; Zukas, H.; and Heumann, J. E. Attending to America: Personal Assistance for Independent Living. Berkeley, Calif.: World Institute on Disability, 1987.
Micco, A.; Hamilton, A. C. S.; Martin, M. J.; and McEwan, K. L. "Case Manager Attitudes Toward Client-Directed Care." Journal of Case Management 4 (1995): 95–101.
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Scala, M. A.; Mayberry, P. S.; and Kunkel, S. R. "Consumer-Directed Home Care: Client Profiles and Service Challenges. Journal of Case Management 5 (1996): 91–98.
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Simon-Rusinowitz, L.; Mahoney, K. J.; Desmond, S. M.; Shoop, D. M.; Squillace, M. R.; and Fay, R. A. "Determining Consumer Preferences for a Cash Option: Arkansas Survey Results." Health Care Financing Review 19 (1997): 73–96.
Scala, Marisa A.. "Consumer Directed Care." Encyclopedia of Aging. 2002. Encyclopedia.com. (September 30, 2016). http://www.encyclopedia.com/doc/1G2-3402200078.html
Scala, Marisa A.. "Consumer Directed Care." Encyclopedia of Aging. 2002. Retrieved September 30, 2016 from Encyclopedia.com: http://www.encyclopedia.com/doc/1G2-3402200078.html
Home care is a form of health care service provided where a patient lives. Patients can receive home care services whether they live in their own homes, with or without family members, or in an assisted living facility. The purpose of home care is to promote, maintain, or restore a patient's health and reduce the effects of disease or disability.
The goal of home care is to provide for the needs of the patient to allow the patient to remain living at home, regardless of age or disability. After surgery, a patient may require home care services that may range from such homemaking services as cooking or cleaning to skilled medical care. Some patients require home health aides or personal care attendants to help them with activities of daily living (ADL).
Medical, dental, and nursing care may all be delivered in patients' homes, which allows them to feel more comfortable and less anxious. Therapists from speech-language pathology, physical therapy, and respiratory therapy departments often make regular home visits, depending on a patient's specific needs. General nursing care is provided by both registered and licensed practical nurses; however, there are also nurses who are clinical specialists in psychiatry, obstetrics, and cardiology who may provide care when necessary. Home health aides provide what is called custodial care in domestic settings; their duties are similar to those of nurses' aides in the hospital. Professionals who deliver care to patients in their homes are employed either by independent for-profit home-care agencies, hospital agencies, or hospital departments. Personal care attendants can also be hired privately by patients; however, not only is it more difficult to evaluate an employee's specific background and credentials when he or she is not associated with a certified agency or hospital, but medical insurance may not cover the expense of an employee who does not come from an approved source.
Home care nurses provide care for patients of every age, economic class, and level of disability. Some nurses provide specialized hospice, mental health, or pediatric care. Home care nursing often involves more than biomedically based care, depending on a patient's religious or spiritual background.
Most patients are more comfortable in their own homes, rather than in a hospital setting. Depending on the patient's living status and relationships with others in the home, however, the home is not always the best place for caregiving. Consequently, home care continues to grow in popularity. Hospital stays have been shortened considerably, starting in the 1980s with the advent of the diagnosis-related group (DRG) reimbursement system as part of a continuing effort to reduce health care costs. But as a result, many patients come home "quicker and sicker," and in need of some form of care or help that family or friends may not be able to offer. Communitybased health care services are expanding, giving patients more options for assistance at home.
It is helpful to have some basic information about the evolution of home care in order to understand the public's demand for quality health care, cost containment, and the benefits of advances in both medical and communication technologies. Members of Roman Catholic religious orders in Europe first delivered home care in the late seventeenth century. Today, there are many home care agencies and visiting nurse associations (VNAs) that continue to deliver a wide range of home care services to meet the specific needs of patients throughout the United States and Canada.
Social factors have historically influenced home care delivery, and continue to do so today. Before the 1960s, home care was a community-based delivery system that provided care to patients whether they could pay for the services or not. Agencies relied on charitable contributions from private citizens or charitable organizations, as well as some limited government funding. Life expectancy of the United States population began to rise as advances in medical science saved patients who might have died in years past. As a result, more and more elderly or disabled people required medical care in their homes as well as in institutions. In response, the federal government put Medicare and Medicaid programs into place in 1965 to help fund and regulate health care delivery for this population.
Funding and regulation
Government involvement resulted in regulations that changed the focus of home care from a nursing care delivery service to care delivery under the direction of a physician. Home care delivery is paid for either by the government through Medicare and/or Medicaid; by private insurance or health maintenance organizations (HMOs); by patients themselves; or by certain non-profit community, charitable disease advocacy organizations (e.g., ACS), or faith-based organizations.
Home care delivery services provided by Medicare-certified agencies are tightly regulated. For example, a patient must be homebound in order to receive Medicarereimbursed home care services. The homebound requirement—one of many—means that the patient must be physically unable to leave home (other than for infrequent trips to the doctor or hospital), thereby restricting the number of persons eligible for home care services. Private insurance companies and HMOs also have certain criteria for the number of visits that will be covered for specific conditions and services. Restrictions on the payment source, the physician's orders, and the patient's specific needs determine the length and scope of services.
Assessment and implementation
Since home care nursing services are provided on a part-time basis, patients, family members, or other caregivers are encouraged and taught to do as much of the care as possible. This approach goes beyond payment boundaries; it extends to the amount of responsibility the patient and his or her family or caregivers are willing or able to assume in order to reach expected outcomes. Nurses who have received special training as case managers visit the patient's home and draw up a plan of care based on assessing the patient, listing the diagnoses, planning the care delivery, implementing specific interventions, and evaluating outcomes or the efficacy of the implementation phase. Planning the care delivery includes assessing the care resources within the circle of the patient's caregivers.
At the time of the initial assessment, the visiting nurse, who is working under a physician's orders, enlists professionals in other disciplines who might be involved in achieving expected outcomes, whether those outcomes include helping the patient return to a certain level of health and independence or maintaining the existing level of health and mobility. The nurse provides instruction to the patient and caregiver(s) regarding the patient's particular disease(s) or condition(s) in order to help the patient achieve an agreed-upon level of independence. Home care nurses are committed to helping patients make good decisions about their care by providing them with reliable information about their conditions. Since home care relies heavily on a holistic approach, care delivery includes teaching coping mechanisms and promoting a positive attitude to motivate patients to help themselves to the extent that they are able. Unless the patient is paying for home care services out-of-pocket and has unlimited resources or a specific private long-term care insurance policy, home care services are scheduled to end at some point. Therefore, the goal of most home care delivery is to move both the patient and the caregivers toward becoming as independent as possible during that time.
Home care delivery is influenced by a number of variables. Political, social, and economic factors place significant constraints on care delivery. Differences among nurses, including their level of education, years of work experience, type of work experience, and level of cultural competence (cross-cultural sensitivity) all influence care delivery to some extent.
Some of the professional issues confronting home care nurses include:
- legal issues
- ethical concerns
- safety issues
- nursing skills and professional education
The legal considerations connected with delivering care in a patient's private residence are similar to those of care delivered in health care facilities, but have additional aspects. For example, what would a home care nurse do if she or he had heard the patient repeatedly express the desire not to be resuscitated in case of a heart attack or other catastrophic event, and during a home visit, the nurse finds the patient unresponsive and cannot find the orders not to resuscitate in the patient's chart? What happens if the patient falls during home care delivery? While processes, protocols, and standards of practice cannot be written to address every situation that may arise in a domestic setting, timely communication and strong policy are essential to keep both patients and home care staff free of legal liability.
Ethical implications are closely tied to legal implications in home care—as in the case of missing do-not-resuscitate (DNR ) orders. For example, what measures are appropriate if a home care nurse finds a severe diabetic and recovered alcoholic washing down a candy bar with a glass of bourbon? The patient is in his or her own residence and has the legal right to do as he or she chooses. Or, what about the family member who has a bad fall while the nurse is in the home providing care? Should the nurse care for that family member as well? What is the nurse's responsibility to the patient when he or she notices that a family member is taking money from an unsuspecting patient? Complex ethical issues are not always addressed in policy statements. Ongoing communication between the home care agency and the nurse in the field is essential to address problematic situations.
Safety issues in home care require attention and vigilance. The home care nurse does not have security officers readily available if a family member becomes violent either toward the health care worker or the patient. Sometimes, home care staff is required to visit patients in high-crime areas or after dark. All agencies should have some type of supervisory personnel available 24 hours a day, seven days a week, so that field staff can reach them with any concerns. Also, clear policy statements that cover issues of personal safety must be documented and communicated regularly and effectively.
With advances in technology and the increased effort to control cost, home care delivery services are using "telecare," which uses communications technology to transmit medical information between the patient and the health care provider. Providing care to patients without being in their immediate presence is a relatively new form of home nursing, and is not without its problems. While some uncertainty exists regarding legal responsibilities and the potential for liability, much has been done to make telecare an effective way to hold costs down for some patients. Home care nurses who are required to make telecare visits should know what regulations exist in the particular state before providing care. The chief problem lies in diagnosing and prescribing over the phone. Technological advances have enabled patients to access telecare through the Internet using personal computers or using televisions. With the most recent advances in telecare, the following services may now be offered:
- instant access to patient records
- prescriptions for treatment
- assessment of possible dangers to the patient
- evaluation of the patient's treatment and medication
- follow-up care
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e-Healthcare Solutions Inc. 953 Route 202 North, Branchburg, NJ 08876. (908) 203-1350. Fax: (908) 203-1307. <email@example.com>. <http://www.digitalhealthcare.com>.
Hospice Foundation of America. 2001 S. Street NW, Suite 300, Washington, DC 20009. (800) 854-3402. (202) 638-5419l. Fax: (202) 638-5312; E-mail: <firstname.lastname@example.org>. <http://www.hospicefoundation.org>.
Joint Commission on Accreditation of Health Care Organizations. One Renaissance Blvd., Oakbrook Terrace, IL 60181. (630) 792-5000. <http://www.jcaho.org>.
National Association for Home Care & Hospice. 228 7th Street, SE, Washington, DC 20003. (202) 547-7424. Fax: (202) 547-3540.
U.S. Department of Health and Human Services. 200 Independence Avenue, S.W., Washington, DC 20201. (202) 619-0257. (877) 696-6775. <http://www.hcfa.gov>.
Visiting Nurse Associations of America. 11 Beacon Street, Suite 910, Boston, MA 02108. (888) 866-8773. (617) 523-4042. Fax: (617) 227-4843. <email@example.com>. <http://www.vnaa.org>.
Coates, Karen J. "Senior Class." Nurseweek May 2002 [cited March 1, 2003]. <http://www.nurseweek.com/news/features/02-05/senior.asp>.
Susan Joanne Cadwallader
Crystal H. Kaczkowski, MSc
Cadwallader, Susan Joanne; Kaczkowski, Crystal H.. "Home Care." Gale Encyclopedia of Surgery: A Guide for Patients and Caregivers. 2004. Encyclopedia.com. (September 30, 2016). http://www.encyclopedia.com/doc/1G2-3406200217.html
Cadwallader, Susan Joanne; Kaczkowski, Crystal H.. "Home Care." Gale Encyclopedia of Surgery: A Guide for Patients and Caregivers. 2004. Retrieved September 30, 2016 from Encyclopedia.com: http://www.encyclopedia.com/doc/1G2-3406200217.html