“Assisted living and other residential care settings” is an umbrella term that refers to many types of certified and licensed housing plus services options. These licensure categories and their definitions vary by state and include board and care homes, assisted living residences, residential care facilities, adult foster care homes, and many others. Given the enormous variability in licensing, regulations, and services provided by skilled-nursing facilities, assisted living, and other residential care settings, consumers may be unsure what to expect in different types of facilities and communities they call home. While skilled-nursing facilities are fairly well defined, there is more variation in the definition of assisted living and residential care which provide different levels of service depending on what is authorized or required by the state. For example, in North Carolina, assisted living providers are not licensed to provide daily nursing services, but in Florida they are. The availability of assisted living/residential care and supportive housing is growing in response to consumer demand and increased public funding for services in such settings (see also Chapter 9, Livable Communities for more information on the housing aspects of supportive housing).
Licensing and regulation of assisted living and residential care occurs at the state level. States use varying terms and definitions. There is no national standard or federal definition of these terms.
The 2014 Medicaid home- and community-based services (HCBS) settings rule developed minimum requirements for integration, choice and control, privacy, and legal rights in order for assisted living/residential care providers to provide HCBS paid for by Medicaid. But the majority of assisted living/residential care residents are private pay.
Advocates have raised concerns about the potential consequences of the HCBS setting characteristics as established by CMS that are considered to be institutional in nature and which could affect:
- secured dementia units/neighborhoods within a larger assisted living community or as a freestanding community;
- continuing care retirement community arrangements where assisted living is located on the same campus as independent living and a nursing home;
- assisted living facilities that were built as a separate section of a nursing home or as a converted section of a nursing home; and
- assisted living facilities that are on the same campus or adjacent to a hospital or other health care provider.
While not prohibited by the HCBS rule, such settings could be presumed to have the qualities of an institution unless the state and CMS determine that they are home- and community-based through a process of heightened scrutiny.
Residential care settings vary widely in quality, with the most serious deficiencies being found in some board and care homes serving mainly Supplemental Security Income recipients. These homes sometimes operate without licenses, and efforts to identify and crack down on them are uniformly weak. The reimbursement available through SSI, even with state supplementation, is frequently inadequate to meet the minimum food, shelter, and service requirements of board and care residents. The combination of inadequate regulation and funding have a negative effect on the quality of care delivered in these settings (see also Chapter 12, Personal and Legal Rights - Elder Justice).
A number of issues can affect either the safety of residents or their quality of life and their care in nursing facilities and residential care settings.
Private rooms—research demonstrates that residents strongly prefer private rooms and bathrooms because they are essential to dignity, improve the security of personal belongings, and aid in infection control. Yet, most residents in nursing facilities and residential care settings live in rooms shared with a stranger.
Culture change generally includes the following elements:
- modification of the physical characteristics of care facilities to make them more residential in character and to provide more private spaces for residents;
- change in the staffing model to give more training, autonomy, and career advancement opportunities to direct-care staff; and
- improvements in the service delivery model to give residents, their families, and caregivers more control over the types and timing of the services they receive.
For example, the Green House Project and similar efforts transform nursing facilities from institutions into small, home-like settings with private rooms and bathrooms, incorporating an emphasis on resident-centered care and staff empowerment. Other efforts include moving toward household-living models, resident-directed care practices, and improved workplace cultures within existing facilities. Some assisted living facilities are using an intergenerational community model in which residents share a building or campus with staff and their families or with college students.
Bed holds—federal law requires that nursing facility residents who are temporarily absent from the facility be allowed to return to the next available bed in that facility. Medicaid coverage during a temporary absence varies from state to state, with some states providing no coverage. In those states, if the residents are unable to pay privately, they may not be able to return to their room or even to the same facility. Laws regarding such bed holds in other settings vary from state to state.
Video technology—video technology can facilitate frequent communication between residents in nursing facilities and residential care settings and their loved ones. Virtual visits can also help family members monitor and document a resident’s care. Texas allows residents in nursing facilities and residential care settings to have electronic monitoring devices. Providers must furnish reasonable accommodations for electronic monitoring and are prohibited from refusing to admit or discharging residents because they request monitoring.
Admitting people with criminal records—admission of people with a history of violent crimes (including sex offenders) to nursing facilities and assisted living residences has raised some concern about the safety of other residents. For example, a report by the Government Accountability Office identified about 700 registered sex offenders living in long-term services and supports facilities in 2005. Although these offenders may have functional limitations, they can still put vulnerable residents at risk. Very few facilities have the staffing levels, training, and security needed to care for these residents and ensure the safety of other residents.
Emergency preparedness plans—federal law requires nursing facilities that participate in Medicare or Medicaid to have detailed written plans and procedures to meet all potential emergencies and disasters, such as fire, severe weather, and missing residents. In addition, the facility must train all employees in emergency procedures when they begin work at the facility, periodically review the procedures with existing staff, and carry out unannounced drills. Requirements for emergency preparedness in other settings vary from state to state.
Private right of action—a private right of action exists when a statute authorizes individuals aggrieved under the law to bring suit. With a private right of action, long-term services and supports consumers can sue a provider or the government for breach of statutory or regulatory rights, duties, or responsibilities. The primary purposes of the private right of action are to obtain compensation for injuries and ensure performance of duties. A secondary purpose is to supplement traditional government regulatory enforcement with private oversight and enforcement. Some state legislatures have established a private right of action both for nursing facility and assisted living residents.
Alternative dispute resolution—residents in nursing and assisted living facilities often lack the practical ability needed to sue the facility because of cognitive impairments or limited finances. Mediation and other alternative forms of nonbinding resolution may help with some kinds of disputes, such as when a resident has problems with a roommate. However, they are inappropriate for other issues, including disputes about life, health, or safety (see also Chapter 12, Personal and Legal Rights - Alternative Dispute Resolution).
QUALITY AND CONSUMER ISSUES IN LICENSED RESIDENTIAL CARE SETTINGS, INCLUDING SKILLED-NURSING FACILITIES, ASSISTED LIVING, AND OTHERS: Policy
Ensuring adequate federal oversight of the quality of Medicaid services
The federal government should assume a much stronger role in ensuring the quality of services paid for by Medicaid in residential care settings.
Federal Trade Commission oversight of advertising and contracting should be enhanced to ensure that sales claims are justified and backed up by contracts.
Federal agencies should develop a common database with information on assessment and outcomes across all care settings.
The federal government, in coordination with states, should conduct surveys of assisted living, board and care, and other residential care facilities to ensure that standards are adequately met. The surveys should include information on resident satisfaction, residents’ involvement in care plans, and outcomes.
The federal government should provide increased funding and authority for long-term services and supports ombudsmen to intervene on behalf of assisted living and residential care residents.
The Social Security Administration should be able to share Supplemental Security Income and Supplemental Security Disability Income information with states, while protecting beneficiaries’ privacy rights, to help identify unlicensed board and care homes.
Uniform definitions and standards of care
Federal agencies should monitor the progress of state efforts in developing common definitions of, and minimum standards for, services and facilities in board and care homes, assisted living residences, and other types of residential care.
Federal definitions and standards should be considered if states do not develop standards that adequately ensure quality and protect consumer rights.
Ensuring adequate, coordinated state oversight and enforcement
States should rigorously enforce mandatory minimum standards and make other efforts to promote quality and ensure quality outcomes for individuals in residential care settings.
States should empower ombudsmen to have immediate access to all residential care settings without advance notice.
Each state should designate a lead agency to coordinate policy, including licensing, monitoring, quality improvement, and enforcement efforts.
Licensing standards and monitoring should reflect residents’ level of disability and the provider’s performance history.
States should require public agencies to ensure that the same social and medical services available to people residing in the community are also available to residents of assisted living and other residential care settings.
States should require adequate numbers of appropriately trained staff to ensure a high quality of care.
Required staff training should include behavioral management; recognition and handling of dementia; handling of medications; cultural sensitivity; promotion of residents’ independence, dignity, autonomy, and privacy; and recognition and reporting of abuse and neglect.
States should require adequate training and careful supervision in statutes or regulations allowing registered nurses to delegate certain nursing tasks to paid direct-care workers. Allowing nurses to train and delegate certain nursing tasks to direct-care workers can ease the burden on family caregivers. The statutes must follow the state’s Nurse Practice Act guidelines for delegation by registered nurses and must provide adequate consumer protections and appropriate liability protections for nurses.
Care plans and contracts for assisted living and residential care
States should require resident assessments and the development of regularly updated individual care plans. Assessments should be valid and reliable, and core items should be uniform across populations.
Residents, their family members, or their representatives, as appropriate, should be fully involved in developing and updating care plans.
States should require that providers of assisted living and residential care have a contract with each resident and that the contract discloses such information as the services provided and their costs, residents’ ability to purchase additional services from outside providers, and the circumstances and conditions that would require the resident to move from the facility.
Promotion of privacy and home-like environments
The federal government and the states should provide incentives (including, but not limited to, grants and loans) for new, affordable models of long-term services and supports (LTSS) that emphasize resident-centered care, a home-like environment, a positive workplace culture, and opportunities for resident involvement in the community.
States should require assisted living to provide:
- private living units—shared only at the resident’s request— with a bathroom, storage facilities, and sleeping, living and food preparation areas;
- a residential setting that provides or coordinates flexible personal care services, 24-hour supervision, assistance (scheduled and unscheduled) with activities ofADLs or Activities of Daily Living are the basic tasks of everyday life, such as eating, bathing, dressing, toileting, and transferring. IADLs or Instrumental Activities of Daily Living are activities related to independent living and include preparing meals, managing money, shopping for… daily living, and health-related services;
- a services program and physical environment designed for aging in place—facilities that minimize the need for residents to move within, or away from, the setting to accommodate their changing needs and preferences;
- an organizational mission, a service program, and a physical environment designed to maximize residents’ dignity, autonomy, privacy, and independence; and
- a process for legitimate negotiated risk agreements between facilities and residents, which allows residents to enhance their autonomy and independence and allows providers to maintain a safe and appropriate environment.
Providers with existing facilities that need renovation to create private baths, kitchenettes, and other improvements should have incentives for making such changes.
In states where a certificate-of-need process exists, that process should be employed to promote the development of home-like, consumer-centric nursing facilities and assisted living/residential care settings.
The federal government and the states should support the exploration of changes in staffing models to give more person- and family-centered training, autonomy, and career advancement opportunities to direct-care (frontline) staff.
Providers with existing facilities that need renovations in order to create private baths, kitchenettes, and other improvements should have incentives for making such changes.
States should require all nursing facilities and assisted living/residential care settings to maximize each resident’s dignity, independence, autonomy, and privacy.
All new or retrofitted nursing facilities and other settings should provide private living quarters, except when residents request to share rooms or apartments. States should ensure that any new facilities that are developed meet consumers’ needs and preferences.
The federal government should conduct research to develop measures of clinical, functional, and quality-of-life outcomes and to explore innovative approaches to achieving high-quality outcomes in both existing and new facilities.
The federal government should couple new quality-related standards with financial assistance to states, through Medicaid and other sources, to improve resident services, increase monitoring and enforcement efforts, train operators and staff, and help owners retrofit homes when necessary and feasible.
The federal government and the states should require providers to hold residents’ units for them during temporary absences as long as the residents’ fees continue to be paid.
Government reimbursement programs should provide funding to hold a unit or bed for an eligible individual during a temporary absence of reasonable duration.
The federal government and the states should enact laws that establish the right of residents in nursing facilities and residential care settings—or their legally recognized decisionmakers—to use video technology for monitoring the quality of care, documentation of care, and virtual visitation.
Video technology should be allowed only when protections are in place to ensure that it does not infringe on roommates’ right to privacy.
For residents who are unable to provide consent, care must be taken to balance the benefits of video technology with the need to protect the resident’s right to privacy.
Providers should be prohibited from discharging or refusing to admit a resident who chooses to use such technology. Nursing facilities and assisted living/residential care providers should be required to notify residents or family members when video technology is being used by the facility or their roommate.
Ensuring residents' safety in nursing facilities and residential care settings
Agencies that refer individuals to nursing facilities and residential care settings should be required to inform the facility when an applicant poses a potential threat to the safety of other residents.
Preadmission screenings should include questions to identify individuals who present a risk of violent behavior.
When facilities deny access to an individual who is otherwise eligible for publicly funded services on the basis of criminal history (i.e., when a judicial sentence has been completed), the federal government and the states must provide alternative access to needed services. This should include access to services in the home or community, specialized facilities for those who present a risk of violence and need facility-based care, and enhanced family caregiver support.
The federal government and the states should not parole or pre-release violent offenders to LTSS facilities that serve the general population.
Violent offenders who are subject to the jurisdiction of federal or state correctional agencies and who need LTSS should be served by correctional agencies in units that meet appropriate staffing and training requirements for proper care.
At the individual and systems levels, LTSS agencies and state corrections agencies should begin to plan for the release of older adult nonviolent offenders through early-release and other programs.
Emergency preparedness plans
Federal and state licensing standards should require that nursing facilities and assisted living/residential care facilities have well-developed, feasible, and practiced emergency plans for residents, as well as adequate numbers of well-trained staff to carry out such plans.
These plans should be prepared and reviewed annually by the local emergency management agency as well as the state regulatory agency.
Plans must include procedures for safely evacuating residents; transporting medical records, emergency medicines, and other supplies; and continuing needed care.
The standards should require that emergency plans be on file with the state.
Emergency plans should be given to family members when a client is admitted to the facility as well as annually, following state approval.
Facility administrators should be criminally liable for not properly following these plans and any emergency orders issued by federal, state, or local authorities.
State governments are responsible for ensuring that systems are in place to protect all nursing facility and assisted living/residential care residents in the event of emergencies.
These systems should ensure clear communication and points of contact in state and federal government and LTSS facilities before, during, and after a disaster.
States should put policies and procedures in place to safely move residents from unsafe facilities or facilities that can no longer provide care.
Consumer participation in long-term services and supports facilities’ operation
All nursing facilities and large assisted living/residential care residences should be required to create a board or an advisory body to review operations. Advisory boards should include at least two independent consumer representatives. States should enforce the family and resident rights outlined in the 1987 Nursing Home Reform Act and should require nursing facilities, assisted living residences, and board and care homes to facilitate the formation of community, resident, and family councils.
States should require nursing facilities and assisted living/residential care facilities to allow notices of council meetings to be posted, permit mailings to prospective members, provide a meeting room within the facility, and provide a contact person to respond to the council’s concerns.
Facilities should arrange for staff to attend council meetings and should allow the presence of outside representatives only upon the council’s request.
States should provide adequate funding to permit state LTSS ombudsmen to visit all facilities.
States should have a full range of sanctions available, including (but not limited to) civil money penalties, a ban on all new admissions, monitoring of directed plans of correction, denial of Medicaid payment for new admissions, and appointment of temporary managers and receivers.
Remedies should be swiftly imposed, with harsher sanctions for recurring, serious, or widespread deficiencies.
States should ensure that licensing laws specify the conditions of care for each type of facility, including all subacute and LTSS beds in hospitals and special care units for residents with dementia.
States should encourage facilities to involve family members and the local community in facility activities and to help residents develop and maintain relationships in the broader community. Community organizations should be encouraged to facilitate the involvement of nursing facility residents and their families as volunteers, when possible.
Private right of action
States should establish a resident’s right to alternative forms of dispute resolution, such as mediation, provided the states do not inhibit or discourage residents or their families from resolving disputes through other means, including the federal and state enforcement system, the ombudsman program, and the courts.
States should ensure a fair and timely hearing process for residents who wish to challenge proposed transfers or discharge decisions. The process should include the same due process protections that apply to Medicaid fair hearings.
The administrative and judicial appeals process should be streamlined to minimize a facility’s ability to avoid or delay penalties.
A facility’s use of binding arbitration and dispute resolution agreements as a condition of admission or continued stay should be prohibited.
Policymakers should enact and strictly enforce anti-discrimination and civil rights laws to protect the fundamental right of all applicants to and residents in nursing facilities and other settings to be free from discrimination.
Anti-discrimination laws should be amended to include sexual orientation and ensure the right of same-sex couples to be housed together in assisted living and residential care facilities, nursing facilities, and other LTSS settings (see also Chapter 12, Personal and Legal Rights - Civil Rights for additional policy on anti-discrimination laws).
States should ensure confidentiality of residents’ information.