Government and long-term services and supports (LTSS) providers can implement various approaches to promoting service quality and protecting the rights of consumers. These include licensing and enforcement, strong ombudsman oversight, accreditation, and guaranteeing consumers’ right to bring legal action (see also Chapter 7, Health for further discussion on managed care organizations).
Licensing and enforcement—states establish licensing requirements that set various provider standards, monitor service quality, and protect residents’ rights, including those related to staffing, inspections (or surveys), and responsiveness to complaints. In response to noncompliance, regulators may apply a range of sanctions, from levying fines to banning new admissions, requiring a plan of correction, and, ultimately, revoking a facility’s license. Enforcement mechanisms vary by state and LTSS setting. Unfortunately, many state regulatory and quality improvement systems are under-funded and poorly staffed, threatening efforts to maintain and enforce standards. In general, federal and state governments have been slow to implement comprehensive quality monitoring that addresses the diversity of LTSS settings, promotes pro-consumer innovations, and better protects vulnerable LTSS recipients.
Oversight must also ensure that direct service workers undergo screening for criminal backgrounds, including a national fingerprint check and a review of federal and state protective service and abuse registries. However, more research is needed on which crimes should disqualify an individual for working in LTSS settings.
Reimbursement approaches to promote quality—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, there has been little research to determine the effectiveness of these programs in LTSS settings or the most promising ways to adjust for risk to reach desired outcomes when reimbursing services in the LTSS system. To improve health and reduce costs, CMS launched the Medicaid Innovation Accelerator Program in July 2014. One of its initiatives is to build the capacity of states to begin increasing the design and implementation of value-based payment strategies for home- and community-based services. This field is still in its infancy.
Ombudsman—the Long-Term Care Ombudsman Program, authorized by the Older Americans Act, provides an additional mechanism for monitoring quality and protecting residents’ rights. Each state has ombudsmen who advocate for residents of nursing facilities and assisted living and other residential care settings and respond to complaints. However, ombudsman programs sometimes lack the staff and resources necessary to ensure that complaints are resolved and that violations of state standards are addressed. Ombudsmen also do not have the authority to enforce laws and regulations.
Accreditation—voluntary accrediting organizations develop standards for good service delivery in nursing facilities, home health agencies, and residential care settings. However, they 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 lack of public accountability, and inhibit redress of consumer grievances. It could also undermine enforcement of standards, compromise public disclosure of documented problems, and harm beneficiary 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 in order to 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 both for nursing facility and assisted living residents, 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 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 serious issues, including disputes about life, health, or safety.
The Centers for Medicare & Medicaid Services prohibits nursing facilities that participate in Medicaid, Medicare, or both from asking residents to sign away their right to sue through pre-dispute mandatory binding arbitration agreements. These facilities may ask residents to sign arbitration agreements only after a dispute has arisen and the resident, or her representative, has knowledge of the specific rights she is giving up in the context of the specific grievance or harm in dispute. CMS also requires that post-dispute arbitration agreements meet certain conditions designed to provide minimum assurances that each agreement is fair and voluntary. Continued stay in the facility may not be a condition of post-dispute arbitration agreements. However, these rules do not apply in other LTSS settings. CMS is considering further regulatory changes that could compromise the minimum assurances described above.
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.
Recent disasters have demonstrated that older people are more vulnerable during disasters than the general adult population, due to lower physical capacity and less resiliency. Individuals dependent on LTSS delivered in their homes are at considerable risk if their workers cannot reach them during a disaster.
Additionally, these rules do not apply to other LTSS settings (see also Chapter 12, Personal and Legal Rights).
ENSURING QUALITY AND CONSUMER RIGHTS AND PROTECTIONS ACROSS ALL LONG-TERM SERVICES AND SUPPORTS SETTINGS: Policy
States should enact licensing requirements for all long-term services and supports (LTSS) providers, including assisted living residences, board and care homes, adult foster homes, continuing care retirement communities, hospitals, 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 people with a relevant criminal record or relevant poor credit history, or to providers whose facilities or service agencies have repeatedly been cited for major deficiencies.
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, supportive housing, or home-care agencies any providers 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, including requirements for an adequate number of well-trained workers and a range of services to meet consumers’ needs (including safety).
Implementing quality improvement programs
In conjunction with a strong enforcement system (which includes swift and meaningful penalties for substandard care) 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; determine ways to improve care; resolve identified problems; and base staffing on residents’ and clients’ care needs.
Quality improvement programs should go beyond minimum staffing requirements to provide enhanced staffing levels when that is required to meet residents’ and clients’ care 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.
Ensuring effective monitoring of long-term services and supports
States should fund sufficient quality monitors to inspect all providers at least annually, conduct follow-up inspections as needed to ensure that quality problems are corrected, and respond promptly to complaints. Facility inspections should be unscheduled.
Quality monitors should receive thorough and ongoing training about the unique needs of older people, including those with lifelong disabilities, and all aspects of LTSS in nursing facilities, residential care settings, and home care.
States should focus on monitoring efforts on improving clinical, functional, and quality-of-life outcomes, and should use performance-based outcome measures, including client 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.
Ensuring that consumers’ complaints are promptly addressed
States should provide effective complaint systems with prompt resolution. The systems should have both an internal appeal process and an external appeal process through a neutral third party.
Appeals mechanisms must ensure that consumers receive an immediate decision on their appeal, or as rapid a decision as the consumer’s condition requires.
Ensuring effective ombudsmen programs
The federal government should enhance funding and strengthen requirements for states to implement LTSS ombudsman programs and should enforce the requirement that the ombudsman program be independent of the state regulatory agency.
The federal government should establish minimum staffing ratios for state ombudsman programs, equivalent to the National Academy of Medicine (formerly IOM) recommended ratios: 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.
States should extend the purview of the ombudsman program to include non-institutional care.
Strengthening the process for addressing abuse and neglect
State governments should fully fund agencies responsible for investigating abuse and neglect and should 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 care should be reported to the appropriate state agency.
- 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 client satisfaction measures; monitoring efforts should intensify as problems are detected in quality outcomes and as the complexity and intensity of services increase; and
- take consumer complaints and ombudsman reports into account during licensing inspections and licensing renewal.
Guaranteeing consumers' legal protections
Congress should make pre-dispute mandatory arbitration provisions in LTSS contracts unenforceable.
States should guarantee and protect the rights of residents, including their private right of action in court, when facilities violate state laws and regulations or when 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 Chapter 12, Personal and Legal Rights - 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 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. 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 anti-discrimination 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.
Implementing pay-for-performance programs
States considering basing payments to LTSS providers on improved quality outcomes should rely on data from pilot projects developed with strong consumer participation. Quality outcomes should include residents’ 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.
Informing the public about the quality of long-term services and supports settings
Ensuring adequate emergency preparedness plans
Federal and state licensing standards should require that nursing facilities, and other residential care settings, have effective emergency procedures for residents, as well as adequate numbers of well-trained staff to carry out such plans. Providers should conduct a test drill of the procedures.
Federal and state licensing standards should require that LTSS providers who furnish services in private homes address emergency situations in the clients’ service plan. Plans should outline how clients’ needs will be addressed if staff are unable to work as well as review proper evacuation procedures.
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.
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.
End-of-life care and decision-making in all long-term services and supports settings
Federal and state policymakers should support improved access to palliative care services in all settings (e.g., nursing facility, residential care setting, or private residence).
States should require LTSS providers to establish ethics committees to help staff, residents, and families deal with end-of-life treatment decisions, such as refusal of nutrition and hydration and do-not-resuscitate orders.