Quality, Consumer Rights, and Emergency Preparedness in all Long-Term Services and Supports Settings

Background

Government and providers of long-term services and supports (LTSS) use various approaches to promote service quality and protect consumer rights. These include licensing and enforcement, strong ombudsman advocacy, accreditation, quality assurance, and other quality improvement initiatives. In addition, they can guarantee consumers’ right to bring legal action. 

Licensing and enforcement: States establish licensing requirements to set provider standards, monitor service quality, and protect residents’ rights. Resident rights include decision-making, choice, and complaint resolution. When noncompliance with regulations occurs in some settings, state regulators may apply a range of sanctions. Sanctions can range from levying fines to banning new admissions, requiring a plan of correction, and, ultimately, revoking a facility’s license.  

Concerns include whether penalties for low-performing facilities that deliver lower-quality care could disproportionately affect vulnerable populations. This is especially true for facilities with a high proportion of Black American and Hispanic/Latino residents that have been disproportionately impacted by such policies. 

Enforcement mechanisms vary by state and LTSS setting. Unfortunately, many state regulatory systems are under-funded and poorly staffed, compromising efforts to enforce standards. 

An important means to ensure that providers meet standards is to require direct service workers to undergo criminal background checks. This would include a national fingerprint check and a review of federal and state protective service and abuse registries. 

Promoting quality: In general, federal and state governments have been slow to implement comprehensive quality monitoring that addresses the diversity of LTSS settings, promotes innovations that support consumers, and better protects vulnerable LTSS recipients. 

Several states have experimented with giving nursing facility providers financial incentives to improve compliance and quality. Such pay-for-performance or value-based purchasing approaches have been introduced in hospitals, Medicare, and private health care systems. However, research has not yet determined the effectiveness of these programs in LTSS settings. Nor has it identified the most promising ways to adjust for risk to reach desired outcomes when reimbursing services in the LTSS system. 

The results of the Nursing Home Value-Based Purchasing Demonstration found that the nursing home pay-for-performance demonstration had little impact on quality or Medicare spending. With authorization from the Protecting Access to Medicare Act of 2014, the Centers for Medicare & Medicaid Services (CMS) began offering financial incentives through the Skilled-Nursing Facility Value-Based Purchasing Program to facilities with lower hospital readmission rates (all-cause readmission) in 2018. The program is not optional. All skilled-nursing facilities that participate in the Prospective Payment Program must participate. 

CMS operates the Medicaid Innovation Accelerator Program. One of its initiatives is to build the capacity of states to design and implement value-based payment strategies for home- and community-based services. This field is still in its infancy. 

Ombudsmen: The Long-Term Care Ombudsman Program, authorized by the Older Americans Act, is intended to improve residents’ care and quality of life and to protect their rights. Each state has ombudsmen who advocate for residents of nursing facilities, assisted living, and other residential care settings. Ombudsmen respond to complaints about these facilities. However, ombudsman programs are chronically under-funded. They sometimes lack the staff and resources to respond promptly to all complaints or to visit facilities on a regular basis. Ombudsmen also do not have the authority to enforce laws and regulations. 

Furthermore, the ombudsman in most states does not serve people receiving home- and community-based services. There is no comparable mechanism for addressing issues and complaints in those settings. 

Accreditation: Voluntary accrediting organizations develop standards for good service delivery in nursing facilities, home health agencies, and residential care settings. However, their standards may not be as comprehensive and stringent as state licensing and certification standards. Under certain proposals, nursing facilities, home health agencies, and residential care and supportive housing residences could be considered (or deemed) in compliance with federal or state certification or state licensing requirements merely because they meet the standards of a voluntary accreditation organization. Allowing this could create conflicts of interest and a lack of public accountability. It could also inhibit the redress of consumer grievances, undermine enforcement of standards, compromise public disclosure of documented problems, and harm consumer representation. 

Guaranteeing consumers’ legal protections: The enforcement mechanism of last resort is legal action by consumers. A private right of action exists when a statute allows individuals aggrieved under the law to bring suit. With a private right of action, LTSS consumers can sue a provider or the government for breach of statutory or regulatory rights, duties, or responsibilities. They could obtain compensation for injuries and ensure the 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 for residents of nursing facilities and assisted living, but this is far from universal. In addition, not everyone can exercise their right to sue. Residents in nursing facilities and residential care settings often lack the ability to sue the facility because of cognitive impairments or limited finances. Mediation and other alternative forms of nonbinding resolution may help with some disputes, such as when a resident has problems with a roommate. However, they are inappropriate for serious issues, including disputes about life, health, or safety. 

CMS prohibits nursing facilities that participate in Medicaid, Medicare, or both from making admission or continued services contingent on a resident signing away their rights to sue. In July 2019, CMS issued a final rule allowing nursing facilities and their residents to enter into pre-dispute and post-dispute binding arbitration agreements as long as nursing facilities comply with the requirements outlined in the rule. Under the rule, nursing facilities are prohibited from requiring residents to sign the agreements as a condition for receiving care. Such agreements cannot be used as a condition of admission to the facility or to continue receiving care at the facility. 

Nursing facilities are required to inform residents or their representatives that they are not required to sign binding arbitration agreements. These agreements allow two parties to agree to settle any future disputes through an arbitration process rather than through litigation. Arbitration agreements must be presented in a form and manner that the resident understands. Facilities must grant residents a 30-day calendar period during which they may rescind their concordance with an arbitration agreement. 

Emergency preparedness: CMS established national emergency preparedness requirements for Medicare and Medicaid participating providers and suppliers. Providers include nursing facilities and other long-term care facilities, home health agencies, and Programs of All-Inclusive Care for the Elderly (also known as PACE). All must plan adequately for natural and artificial disasters. They must also coordinate with federal, state, tribal, regional, and local emergency preparedness systems. Consumers and other stakeholders can provide valuable information about what must be considered and addressed. 

They must have detailed written plans and procedures to meet all potential emergencies and disasters. These include infectious disease outbreaks, fire, floods, heat waves, other severe weather, and missing residents. Requirements for emergency preparedness in other settings vary from state to state. 

All employees must be trained in emergency procedures when they begin work at the facility, periodically review the procedures with existing staff, and carry out unannounced drills. 

Studies and news outlets have reported that the impact of recent disasters—including the COVID-19 pandemic and natural disasters—affected older people more than the general adult population. This is the result of their impaired functioning and reduced resiliency. 

COVID-19 mitigation policies have limited the locations and methods for evacuating and sheltering LTSS facilities in the event of a natural or man-made disaster. A predetermined, dedicated location or locations secured through contracts between LTSS providers would help family members know where they can co-locate to be near their loved ones when evacuated. If a site is predetermined, it reduces the time for evacuation planning. The sites can be secured through contracts between LTSS providers and site providers. LTSS facilities can also bid for transportation contracts to the evacuation sites before an incident. 

Individuals dependent on LTSS delivered in their homes are at considerable risk if their workers cannot reach them during a disaster. Emergency plans should be part of an individual’s person-centered service plan, detailing how friends, neighbors, and family might assist them. 

The federal government has provided significant funds to nursing homes during the COVID-19 pandemic. However, it set insufficient and broad directives to spend the money on testing, personal protective equipment, paid sick leave for staff, or hazard pay for nurses and aides caring for COVID-19 residents. In its guidance to the industry and other providers, the Department of Health and Human Services said the funds did not need to be explicitly used to provide care for possible or actual coronavirus patients. But it could be used for a range of expenses, including health insurance and rent or mortgage payments. While flexibility in using emergency funds is important, many health care professionals, advocates, and researchers have expressed concern about the lack of restrictions and accountability. 

QUALITY, CONSUMER RIGHTS, AND EMERGENCY PREPAREDNESS IN ALL LONG-TERM SERVICES AND SUPPORTS SETTINGS: Policy

QUALITY, CONSUMER RIGHTS, AND EMERGENCY PREPAREDNESS IN ALL LONG-TERM SERVICES AND SUPPORTS SETTINGS: Policy

Licensing

States should enact licensing or comparable certification requirements for all long-term services and supports (LTSS) providers. This includes assisted living residences and other residential care settings, adult foster homes, continuing care retirement communities, adult day services, and any agency providing home health or personal care services. Licensing requirements should vary depending on the level of care and the services provided. 

Both the states and the federal government should refuse to accept accreditation by private bodies in lieu of federal or state licensing, certification, or enforcement of standards. 

States should not issue licenses for LTSS settings to individuals with a relevant criminal record or relevant poor credit history. Nor should they be issued or re-issued to providers whose facilities or service agencies have repeatedly been cited for major deficiencies. The financial fitness of a potential owner/manager should also be considered. 

State licensing standards should screen out providers whose past performance or current inability to provide services makes them a poor risk for providing high-quality services. 

States should bar from owning, obtaining a license for, or receiving construction approvals for nursing facilities, assisted living, supportive housing, or home-care agencies any provider whose facilities or service agencies have repeatedly been cited for: 

  • deficiencies in major quality-of-care requirements, 
  • consistently providing poor-quality care, or 
  • routinely discriminating against Medicaid recipients. 

States should set licensing standards that address quality-of-care issues. These include requirements for an adequate number of well-trained workers and a range of services to meet consumers’ needs (including safety). 

The federal government should not certify an LTSS setting for Medicaid or Medicare if the applicant has a poor financial, managerial, and compliance history. 

Quality improvement programs implementation

Enforcement should include swift and meaningful penalties for substandard care. In conjunction with a robust enforcement system, federal and state governments should encourage LTSS providers to establish ongoing quality improvement programs. These programs should objectively and systematically monitor and evaluate the quality, oversight, outcomes, and appropriateness of care. They should determine ways to improve supports and services and resolve identified problems, paying particular attention to infection control. Staffing should be based on residents’ and consumers’ needs. 

Quality improvement programs should go beyond minimum staffing requirements to provide enhanced staffing levels when required to meet consumers’ needs. 

Consumers and their advocates should be able to participate fully in quality improvement activities. 

Additional resources should be provided for monitoring state activity on the quality of LTSS. 

States should require providers to have internal quality improvement mechanisms. 

Effective monitoring of LTSS

States should fund sufficient quality monitors to inspect all providers at least annually. Complaints should be responded to promptly. Inspections should be unscheduled. Follow-up inspections should also be conducted as needed to ensure quality problems are corrected. 

Quality monitors should receive thorough and ongoing training about the unique needs of older people, including those with lifelong disabilities. Training should include all aspects of LTSS in nursing facilities, residential care settings, and home care. 

States should focus their monitoring efforts on improving clinical, functional, and quality-of-life outcomes. They should use performance-based outcome measures, including but not limited to consumer-experience and satisfaction measures. Monitoring efforts should intensify as problems are detected in quality outcomes and as the complexity and intensity of services increase. 

Consumer complaints and ombudsman reports should be considered during licensing inspections and licensing renewal. 

Consumers’ complaints

States should provide effective complaint systems with prompt resolution. The systems should have both an internal and an external appeal process through a neutral third party.

Appeal mechanisms must ensure that consumers receive an immediate decision on their appeal, or as rapid a decision as the consumer’s condition requires.

Effective ombudsmen programs

The federal government should increase funding and strengthen requirements for states to implement Long-Term Care Ombudsman programs. States should increase funding so that adequate funding is available for state long-term care ombudsmen to visit all facilities. The federal government should enforce the requirement that the ombudsman program be independent of the state regulatory agency. 

The federal government should amend the Older Americans Act to give state long-term care ombudsman programs the authority to cover home care. It should also fully fund the Long-Term Care Ombudsman Program, including funding for the expanded authority to cover home care. 

Standards related to quality should be carefully designed, with input from residents, families, and advocates. 

The federal government should establish minimum staffing ratios for state ombudsman programs. Ratios recommended by the National Academy of Medicine should be used: one full-time-equivalent paid ombudsman for every 2,000 licensed LTSS beds within the state, and one full-time-equivalent paid ombudsman for every 40 volunteers. 

Abuse and neglect

State governments should fully fund agencies responsible for investigating abuse and neglect and ensure that they have the capacity to respond appropriately in a timely manner. Information about suspected cases of abuse or neglect of nursing facility residents should be used in the state survey and certification process. Information about suspected cases of abuse or neglect of people receiving home or community-based services should be reported to the appropriate state agency. 

States should: 

  • provide ongoing monitoring and independent evaluation of state Medicaid LTSS systems with meaningful consumer input; 
  • provide sufficient oversight infrastructure, resources, expertise, and commitment; 
  • use a common set of reliable and accurate assessment and outcome measures to assess performance quality among all types of providers and to encourage provider commitment to quality; 
  • focus monitoring efforts on improving outcomes, with attention to clinical, functional, and quality-of-life outcomes; 
  • monitor quality through performance-based outcome measures, including consumer-experience and satisfaction measures; monitoring efforts should intensify as problems are detected in quality outcomes and as the complexity and intensity of services increase; 
  • take consumer complaints and ombudsman reports into account during licensing inspections and licensing renewal: and 
  • support trauma-informed care, including mental health services for individuals who have suffered abuse and neglect, including survivors of sexual assault. 

Legal protections

Congress should make pre-dispute mandatory arbitration provisions in LTSS contracts unenforceable. 

The federal government and the states should guarantee and protect the rights of residents in nursing facilities and residential care settings, such as assisted living. Residents and LTSS recipients must retain their private right of action when facilities violate state laws and regulations or the government fails to enforce such laws. 

States should not limit the amount of punitive damages (or joint and several liability) or unreasonably limit damage awards for pain and suffering in tort actions involving LTSS providers (see also Private Enforcement of Legal Rights, for additional policy on access to the judicial system)

States should establish a resident’s right to alternative forms of dispute resolution, such as mediation, provided that states do not inhibit or discourage residents or their families from resolving disputes through other means. This should include the federal and state enforcement system, the ombudsman program, and the courts. A facility’s use of binding arbitration and dispute resolution agreements as a condition of admission or continued stay should be prohibited. 

States should enact and strictly enforce antidiscrimination and civil rights laws to protect the fundamental right of all applicants to—and residents of—nursing facilities and residential care settings to be free from discrimination. 

State governments should ensure that their laws prohibit LTSS staff from taking, keeping, and distributing photographs and recordings that are demeaning or humiliating to consumers or that otherwise violate the consumer’s right to privacy and confidentiality.

Accreditation

The federal government and the states should not accept accreditation by private bodies in lieu of federal or state licensing, certification, or enforcement of standards.

Pay-for-performance programs

States considering payments to LTSS providers based on improved quality outcomes should rely on data from pilot projects developed with strong consumer participation. Quality outcomes should include consumers’ reports of the quality of their care. 

Pay-for-performance programs should have basic reimbursement levels that are adequate to ensure quality care. 

Residents’ reports of their experiences with care and evaluations by family members and visitors should be included in pay-for-performance programs and used in conjunction with other data on quality outcomes. 

Pilot projects should include, among other factors, comprehensive evaluation components to determine the validity and reliability of the measurement instruments used and the programs’ effectiveness in promoting quality for consumers. 

Information on quality of LTSS settings

States should ensure that facility-specific survey results and other information regarding quality are made available to the public in a timely manner. The information should include comparisons with national standards when possible. It should be in easily comprehensible formats and available online. Comparisons across facilities within states can incentivize provider improvement due to competition with each other, especially when made available to consumers and the public. 

Emergency preparedness

More federal funding should be provided to the Administration for Community Living to develop and implement its emergency management responsibilities on behalf of older people. 

The Federal Emergency Management Agency (FEMA) should have specific and detailed protocols that address the needs of older adults and vulnerable populations in disasters. FEMA should study the breakdowns in assistance that occurred in previous disasters and use these lessons to guide the development of new emergency response protocols. 

Federal and state licensing standards should require that nursing facilities and assisted living/residential care settings have well-developed, feasible, and practiced emergency plans for residents. They should also have adequate numbers of well-trained staff to carry out such plans. 

The standards should require that emergency plans be on file with the state. 

Emergency plans should be prepared and reviewed annually by the local emergency management agency as well as the state regulatory agency. 

Emergency plans must include procedures for safely evacuating residents and continuing needed care. There should also be plans for safely transporting medical records, emergency medicines, and other supplies. 

Emergency plans should be given to family members when a consumer is admitted to the facility and annually thereafter, following state approval. 

Facility administrators should be criminally liable for not properly following emergency plans and any emergency orders issued by federal, state, or local authorities. 

Federal and state licensing standards should require nursing facilities and residential care settings to have effective emergency procedures for residents. They should also be required to have adequate numbers of well-trained staff to carry out such procedures. Providers should conduct test drills of the procedures. 

Federal and state licensing standards should require that LTSS providers who offer services in private homes include emergency plans in the consumer’s service plan. Plans should outline how consumer needs will be addressed if staff are unable to work. They should also detail appropriate evacuation procedures. 

States should ensure that local public health departments and emergency preparedness departments include nursing home representatives in all planning meetings. Nursing homes should partner with these local departments to coordinate responses to infectious disease outbreaks. There should also be appropriate consumer participation. 

States should prioritize identifying, registering, and tracking older people in local communities who cannot evacuate on their own. Efforts must be made to protect registry data from data mining or ransomware efforts. 

States should educate emergency management personnel about the needs of older people and train aging-network personnel in emergency management procedures. 

Older adults and people with disabilities should be included in emergency drills and training exercises. 

States should include protections for vulnerable older people in state and local emergency preparedness activities, such as planning, communications, evacuations, transportation, and housing. 

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 an adequate number of well-trained staff to carry out such plans. Plans should include an adequate number of personal protective equipment (PPE) for all staff. Supply should be stocked to prevent PPE shortages in high demand incidents. 

These emergency plans should be publicly available and reviewed by public agency emergency managers to determine whether conflicts exist between the agency and LTSS plans. 

Federal and state governments should require all facilities to prepare a consumer-friendly summary of their emergency plan and provide it to current and prospective nursing home residents and their families and caregivers. It should be posted on the premises and also available to members of the public upon request. 

Facilities’ plans should include readiness for shelter-in-place plans, as well as off-site evacuation and sheltering. Plans should identify specific modes of evacuation and locations for sheltering and contracts with transportation providers to guarantee the safe transport of residents. Emergency power generator plans should include emergency cooling or heating plans. 

Emergency plans should also be reviewed annually by state/local fire marshals in addition to the current agencies listed. 

Facilities should have an adequate emergency supply of essential items such as food, water, fuel, medical supplies, and medications for both residents and staff. 

State and federal public health agencies should have actionable emergency contact-tracing plans that include rapid recruitment and redeployment of public health staff and ongoing training in order to reduce transmission of infectious diseases. 

In addition to registries, individuals receiving home- and community-based services should have an individualized emergency plan that includes friends, neighbors, and family members who are able to assist them. 

Congress must provide oversight to ensure that federal funds already allocated to nursing homes and other long-term care facilities to deal with emergencies are used to enable such facilities to provide care to residents. It must ensure the health and safety of residents and staff during the emergency. Congress should also establish guardrails to ensure that future funds are used for such intended purposes. 

Long-term care providers should not receive grants of blanket immunity during a federal- or state-declared public health emergency. If steps to provide immunity to LTSS providers during a declared state of emergency are taken, they should be narrowly drawn, limited to civil immunity, and only for the duration of the public health (or other) declared state of emergency. Immunity should only be granted to LTSS providers and facilities for the care they provided: 

  • pursuant to the declared emergency, 
  • in good faith, 
  • during the period of the state of emergency, and 
  • absent willful misconduct or gross negligence. 

 

State Emergency Preparedness

States should make identifying, registering, and tracking older people who cannot evacuate on their own a high priority in local communities. Efforts must be made to protect registry data from data mining or ransomware efforts. 

States should train emergency management personnel in the needs of older people and train aging-network personnel in emergency management procedures. 

Older adults and people with disabilities should be included in emergency drills and training exercises. 

States should include protections for vulnerable older people in state and local emergency preparedness activities, such as planning, communications, evacuations, transportation, and housing. 

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 enact policies and procedures to safely move residents from unsafe facilities or facilities that can no longer provide care. 

 

End-of-life care and decision-making

Federal and state policymakers should support unbiased assessment of palliative care needs as well as improved access to palliative care services regardless of setting (e.g., nursing facility, residential care setting, or private residence). 

States and the federal government should require LTSS providers to establish ethics committees to help staff, residents, and families with end-of-life treatment decisions. These decisions may include refusal of nutrition and hydration and do-not-hospitalize and do-not-resuscitate orders. 

Federal and state governments should require nursing homes to provide comprehensive and understandable information about advance directives, do-not-hospitalize and do-not-resuscitate orders, physician orders for life-sustaining treatment (also known as medical orders for life-sustaining treatment), and hospice care. Providers should ensure that residents’ end-of-life wishes are recorded in the appropriate documents and adhered to by staff and physicians. 

Found in Quality, Consumer Rights, and Emergency Preparedness in all Long-Term Services and Supports Settings