Alzheimer's disease, assisted living, Centers for Medicare and Medicaid service, dementia, federal law, home care, housekeeping, Medicaid, personal-care staff, residential care
Alzheimer Disease, Assisted Living Facilities, Centers for Medicare and Medicaid Services (U.S.), Dementia, Home Care Services, Housekeeping, Medicaid
Assisted living (AL) is a congregate residential setting for six or more adults that provides or coordinates housekeeping and personal services, 24-hour supervision and assistance, activities, and health-related services, primarily for older adults (Stevenson & Grabowski, 2010). AL is known by several names—residential care, home for the aged, housing with services, board and care, personal care, enriched housing—and the distinctions lie in state regulations, certification, or licensing; type of housing unit (e.g., shared room or apartment); and the needs that a particular setting can meet. Today all types of group residential care are commonly referred to as assisted living (Assisted living, 2011). In contrast, state-licensed adult foster or family care is for four to six people residing in the provider's home. In 2012, the federal government released data from the first nationally representative survey of AL/residential care facilities. The latest study demonstrated that in 2014, there were a total of 835,200 residents in AL/residential care facilities. Some 62% of residents required assistance with bathing, the most common functional limitation, and 4 in 10 were diagnosed with Alzheimer's disease or other dementias (Centers for Disease Control and Prevention [CDC], 2015).
Although some federal laws apply, AL is regulated and monitored by the state. The number, nature, and scope of AL regulations continue to increase, particularly because AL residents are frailer, sicker, and older than when AL first appeared as a residential-care option. AL is generally defined as an environment that offers and/or provides assistance with ADLs and instrumental activities of daily living (IADLs) such as meals and assistance with medications. The goal of AL is to promote “aging-in-place,” the ability to live in a residence of one's own choice, safely and comfortably, as one ages.
A vexing problem for states as well as providers is the balance between resident autonomy (and risk taking) and safety needs. In some facilities, residents or their family surrogates can sign “negotiated risk” contracts that allows them to remain in the assisted-living residences (ALRs) despite functional and/or cognitive decline. A negotiated risk agreement was considered an important topic several years ago, but few states address the topic in regulations because of liability risk with residents with cognitive impairment (U.S. Department of Health and Human Services [USDHHS], 2015). Also known as “managed risk” or “shared responsibility,” potential consequences of the resident's actions must be described, as do options to limit risk and honor the resident's wishes, such as requiring the resident or family to hire extra help if needed. The agreement process and areas of disagreement must be documented. Some states (e.g., Oregon) do not permit a risk agreement if the resident is unable to comprehend the consequences associated with actions.
The consumer-centered philosophy of AL, as defined by the National Center for Assisted Living (Assisted living, 2013), promotes wellness and maximizes quality of life, independence, privacy, choice, safety, decision making, and “aging in place” in a homelike environment. Private living units, including private baths (in an estimated 80% of ALRs), are a critical feature of AL; residents may lock their doors. Forty-one states have at least one residential category that allows three or more residents to share a room and/or toilets and bathing facilities (USDHHS, 2015). At least 30 states allow two people to share a unit (i.e., apartment) or bedroom but, in some states, only if the two parties choose to do so (e.g., Washington). Depending on the licensing category, some states allow as many as four people to share a unit and up to eight residents to share a toilet (USDHHS, 2015). Regulations in 21 states contain a statement of AL philosophy, in greater or lesser detail (e.g., aging in place), as well as describe services that may or may not be offered. Given the likelihood of increasing needs and frailty and the ALRs’ obligation to provide appropriate care, many ALRs feel they will evolve into a kind of “nursing home lite” environment—something they did not intend philosophically, operationally, or fiscally. Although state regulations set boundaries for the scope of services, providers (i.e., operators) nevertheless have considerable latitude in deciding what will be offered and which residents (i.e., tenants) will be admitted, retained, or discharged.
An occupancy, service, “contract,” or “residency” agreement, executed before or immediately on admission to an ALR, is based on an assessment of the person's need for services and how they can best be met. In 2014, Centers for Medicare & Medicaid Services (CMS) clarified that residential settings serving individuals under Medicaid provide a residency agreement and/or follow applicable landlord/tenant laws that reference eviction processes and appeals as well as rights and responsibilities (USDHHS, 2015). Thirty-nine states require that ALRs disclose the services that will be provided to meet reasonable care needs. More than half of states require disclosure of costs and services beyond the basic rate, discharge criteria, grievance processes, resident rights, and retention and relocation criteria in case the ALR is unable to meet the resident's health and safety needs. In some states, ALRs must disclose their staffing pattern and staff training. Forty-four states have special regulations for ALRs that claim they provide dementia care, including specific disclosure regarding services provided, programming, staff training, the environment, and security provisions.
States can have a single level of AL or a two- or three-level model stipulating the services that can be provided or needs that can be met. It is illegal for an ALR to refuse to admit an individual whose health care needs can be met in the ALR as stipulated in the state's regulation and as protected by the Americans with Disabilities Act (ADA). The most compelling reason for discharge, permitted by most states, is when the ALR cannot provide the services needed or care needs exceed what the ALR license permits. Hence, the nature, frequency, duration, and intensity of health-related and nursing care permitted by regulation determine the feasibility of aging in place. A resident can be at risk of discharge for reasons unrelated to licensure but rather for financial reasons (i.e., inability to privately purchase the additional care and services needed from a home health agency). The worst-case scenario is a resident who remains too long in an ALR where the staff is not trained for complex health care management and provisions are not made to secure the health and safety of the resident.
The number and type of staff vary with the number of residents, their needs, and the services provided. Personal-care staff can be employed by the facility or contracted from an outside agency (e.g., licensed home care agency). Thirty-eight states require the ALR to employ or contract with a licensed nurse (i.e., RN or licensed practical nurse) to either be available or on staff at least some hours per week. Only one state, Alabama, requires a physician medical director. Every ALR must have an administrator (i.e., manager, director, or operator) who has overall responsibility for staff performance and resident well-being. Administrators must be specially trained in 72% and specially licensed in 46% of states. National Study of Long-Term Care Providers (NSLTCP) found that less than half of all ALFs employ an RN. Some ALRs employ an advanced practice nurse (i.e., geriatric or adult nurse practitioner) to conduct admission assessment, develop a plan of care, and provide health maintenance oversight and medication management.
Forty-two states have specific staffing standards based on resident needs; 32 states that use flexible or as-needed staffing also have minimum staffing ratios. In all ALRs, there must be at least one person available during the night hours. Most states (98%) require that direct-care staff be trained at the time of or prior to employment, but the curriculum varies: resident rights (required in 80% of states); emergency procedures (including CPR), first aid, and fire/safety/disaster preparedness (60%); infection control and abuse/neglect prevention (42%); dementia and behavior management (35%); special needs of resident/elderly (36%); and the aging process (18%). Few states develop the curriculum; the ALR or a staff-development enterprise can create the content with scant state review for quality. Few states require an examination or trainer standards—training can vary from 1 to 25 hours or more—and 40 states require continuing education.
All ALRs monitor residents’ well-being and provide daily supervision and assistance with IADLs and ADLs; three meals a day, including therapeutic diets; housekeeping and laundry services; medication management; transportation for recreational and shopping trips; and an emergency call system. Thirty-six states permit nonlicensed staff to administer medications and 18 states allow unlicensed staff to assist with medications. Residents who are temporarily incapacitated or recuperating from surgery, injury, or illness or those who are dying can remain in the AL facility if it can provide the necessary services and care. Health care is supervised by a physician of each resident's choosing.
Admission and retention criteria vary widely among states. In the 10 states with broad criteria and flexible rules (e.g., Maine, Oregon, and Minnesota), ALRs are most likely to support aging in place. However, the ALR is not required to retain the resident. Some states simply require that a prospective resident be in stable health and not need 24-hour nursing care; other states’ criteria screen out those who are bedbound, are incontinent, have deep pressure ulcers, need artificial feeding or hydration, or are ventilator-dependent. States may have criteria relating to independent ambulation, ability to use the toilet unassisted, and stage of dementia. New Jersey ALRs may admit and retain residents who are continuously dependent in four ADLs, have impaired decision-making capacity, are bedbound more than 14 days, are medically unstable, are a danger to self or others, and require treatment for severe pressure sores. Almost all states require discharge if the resident is no longer independently mobile, a requirement linked to fire safety and ability to evacuate the premises.
Exceptions to a state's discharge criteria, approved by the state, include temporary conditions (associated with remaining in bed for as many as 10 days); the resident's ability to independently perform or direct another in performing a medical procedure (e.g., oxygen administration, tube feeding, changing of sterile dressings, and insulin injection); consent by the resident, facility, and physician; state approval on a case-by-case basis; and family assistance with care. Some states allow home health care or third-party provider assistance for “skilled nursing care” if it is short term, temporary, or for an acute illness. Home health is permitted in more than two thirds of states as a component of AL, unrelated to admission or retention. Residents can contract directly with the agency or third-party provider for desired services.
Home care can be provided in ALRs for Medicare beneficiaries who meet eligibility criteria. An RN from a certified home-care agency supervises and monitors the care. Hospice care as a home care service can also be provided in ALRs. This decision is made by the facility and the resident or family, is not contingent on state regulations, and constitutes an exception from the discharge requirement. The USDHHS Office of the Inspector General (OIG) assessed Medicare hospice care in ALs between 2007 and 2012, finding that Medicare payment for hospice care in ALs more than doubled. Consequently, the OIG recommended hospice care payment reforms, with agreement by the CMS, and the role of hospice in these settings may change in the future (USDHHS, 2015).
More than 70% of AL residents are women. More than 50% are 85 years and older, with 10% younger than 65 years. Approximately 75% of residents receive some type of assistance with ADLs. Although most residents come to AL facilities from their own homes, slightly fewer than 20% come from nursing homes. Studies indicate that AL residents are taking more medication, in general, than nursing home residents and receive more psychotropic medications than their nursing home and community-residing peers. In addition, many of their medications are inappropriate for their age, unrelated to a diagnosis or condition, and poorly monitored. After an average stay of 26 months, approximately 45% of residents are discharged to nursing homes and 26% die. Approximately 5% of residents leave AL facilities for financial reasons.
The AL market is predominantly private pay; there is no ALR entry fee. In 2011 and 2014, the CMS issued proposed regulations to better define community settings where Medicaid recipients could receive services that are covered by Section 1915(c) Home and Community-Based Service (HCBS) waiver programs. The regulation requires that AL services (24-hour on-site supervision, safety, and social and recreational programming) be provided in settings that are home and community based, are integrated into the community, and provide access to the community (Mollica, Houser, & Ujvari, 2011). The 2014 regulations focused on person-centered planning, privacy, choice of roommate, access to food, and other issues related to autonomy and choice (USDHHS, 2015).
Forty-three states pay for some components of AL for Medicaid-eligible ALR residents (estimated at 121,000) under the Medicaid state plan, the HCBS waiver (Section 1915c; www.payingforseniorcare.com/medicaid-waivers/assisted-living.html), or some combination thereof. Under the waiver (36 states), states can provide home and community services to nursing home–eligible Medicaid beneficiaries; such services include personal care and homemaker services, medication management, home-delivered meals, and staffing for supervision and services. Because room and board cannot be covered by the waiver, some states assist Medicaid AL residents by fixing the room and board cost that the ALR can charge the resident, supplementing the resident's Supplemental Security Income (SSI) payment to use for this cost, or offering housing subsidies. State Medicaid policy determines the type of unit (i.e., single or shared) for Medicaid beneficiaries in ALRs (Washington permits shared units only by choice). Long-term care insurance is infrequently used or available among AL residents.
Average monthly fees are about $3,000; this is higher than the typical board-and-care fee but lower than nursing home costs (Argentum, 2016). The fee paid by the resident depends on the type of housing (i.e., shared vs. private room) and the kind and number of services included in the contract. Medicaid reimbursement can be an all-inclusive, flat-rate monthly price; tiered pricing based on the package of services needed (or desired) by the resident; tiered rates based on the resident's acuity level; fee-for-service pricing based on the resident's “a la carte” selection of services; or some combination of these models.
Several states are developing innovative financing mechanisms to assist developers in constructing affordable AL housing. A growing number of nonprofit and for-profit nursing homes are converting beds and wings to AL. Many continuing-care retirement communities offer AL either in the tenant's current domicile or by relocation to an AL facility on the premises. Medicare-capitated managed-care organizations view AL as being well suited for managing rehabilitation and providing a supportive environment for frail managed-care enrollees.
Virtually every state is studying or promulgating regulations and licensure requirements that distinguish AL from other long-term care and residential models. States have the authority to set provider standards; many have done so with respect to food preparation and fire safety. There is wide variability across facilities in services offered and across states in the degree of government involvement as a regulator of these services (Stevenson & Grabowski, 2010).
Medication management, staffing, qualifications and quality, adequacy of care, and plans of care are the major sources of complaints and deficiencies in ALRs. Twenty-four states use different surveyors for AL and nursing home quality-of-care inspections. Federal quality-of-care standards probably will not be promulgated in the near future because it is unlikely that the federal government will become a major AL payor. The state role in monitoring and licensure will continue to grow, especially as Medicaid assumes greater responsibility for the costs of care and services.
A growing body of scholarly research, much of it multidisciplinary, is engaging the AL industry as well as state legislative bodies, advocacy groups, professional associations, and academia (Grabowski, Stevenson, & Cornell, 2012). In-depth information is needed about AL users: their expectations and preferences, finances, functionality, conditions and illness trajectories, relocation, and outcomes. Research is needed regarding dementia care services and outcomes. Comparisons with other kinds of long-term health and social services and settings might help sharpen the focus and future of AL. An examination of the lack of uniformity among states in quality standards and regularity expectations is needed to meet the needs of our aging population.
See also Continuing Care Retirement Communities; Nursing Homes.
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