Quality and Consumer Rights Across Settings

Background

To promote service quality and protect the rights of consumers receiving long-term services and supports (LTSS), governments and providers have taken various steps. These include licensing and enforcement, pay-for-performance reimbursement, ombudsman oversight, accreditation, and protection of consumers’ right to bring legal action (for further discussion on managed care organizations, see Chapter 7, Health).

Licensing and enforcement—states monitor service quality and protect residents’ rights through licensing requirements that set standards for such issues as staffing, periodic inspections (or “surveys”) of providers, and responsiveness to complaints. However, many state regulatory and quality improvement systems are underfunded and poorly staffed. Enforcement mechanisms vary depending on the LTSS setting and the state. Regulators may apply a range of sanctions, such as levying fines, banning new admissions, requiring a plan of correction, and, ultimately, revoking a facility’s license. Steps to supplement state regulation include surveying consumers on their satisfaction with service delivery and disclosing the results to the public. In general, federal and state governments have been slow to implement comprehensive quality monitoring that recognizes the diversity of LTSS, 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 reduce noncompliance with rules and improve 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 examine these issues, Centers for Medicare & Medicaid Services (CMS) launched a three-year Nursing Home Value-Based Purchasing demonstration program in July 2009. It ended in December 2012, having been applied in 41 nursing facilities in Arizona, 79 in New York, and 62 in Wisconsin. A 2013 evaluation demonstration found that performance-based incentives had minimal impact on the quality of care, but this could have resulted from design flaws in the demonstration rather than the performance-based approach itself.

Ombudsman oversight—the Long-Term Care Ombudsman Program, authorized by the Older Americans Act, provides an additional mechanism for monitoring quality and protecting residents’ rights: Every state has ombudsmen for residents of nursing facilities and supportive housing. The ombudsmen advocate for residents and respond to complaints. However, ombudsmen sometimes lack the staff and resources necessary to ensure that complaints are resolved, and violations of state standards are addressed. Ombudsmen also do not have the authority to enforce laws and regulations.

Accreditation—voluntary accrediting organizations can help develop standards for good service delivery. However, 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 simply 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. A 1998 CMS study concluded that “the potential cost savings of deeming would not appear to justify the risk to the health and safety of the vulnerable nursing facility population.” That finding could apply as well to the deeming of home health agencies and assisted living residences.

Protection of consumers’ right to bring legal action—sometimes the only way to protect consumers is through legal action. In some states, consumers can pursue a private right of action to enforce quality regulations and receive redress for harms caused by a provider’s noncompliance with those regulations.

CMS revised the conditions of participation for Skilled Nursing Facilities (SNF) and Nursing Facilities (NF) that participate in the Medicaid and/or Medicare programs. Effective November 28, 2016, these facilities are prohibited from asking residents to sign 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 postdispute 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 postdispute arbitration agreements.

While these new rules are an important step forward in protecting consumer rights in institutional LTSS settings, they do not apply to SNFs or NFs that do not participate in the Medicaid or Medicare programs. Additionally, these rules do not apply to other LTSS settings (see Chapter 12, Personal and Legal Rights).

State governments should review their laws to ensure that they prohibit LTSS staff from taking, keeping and/or distributing photographs and recordings that demean or humiliate a client or otherwise violate the consumer’s right to privacy and confidentiality.

State governments should review their laws to ensure that they prohibit LTSS staff from taking, keeping and/or distributing photographs and recordings that demean or humiliate a client or otherwise violate the consumer’s right to privacy and confidentiality.

Quality and Consumer Rights Across Settings: Policy

Quality improvement programs

In this policy: FederalState

In conjunction with a strong enforcement system (which includes swift and meaningful penalties for substandard care), federal and state governments should encourage long-term services and supports (LTSS) providers to establish ongoing quality improvement programs.

Quality improvement programs should objectively and systematically monitor and evaluate the quality, oversightoutcomes, 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.

Monitoring LTSS

In this policy: FederalState

Sufficient quality monitors should be hired to inspect all providers at least annually (including unscheduled visits), conduct follow-up inspections as needed to ensure that quality problems are corrected, and respond promptly to complaints. Facility inspections should be unscheduled.

Support for training programs for monitors and funds for monitoring activities should be increased.

Quality monitors should receive thorough and ongoing training about the unique needs of older people, including those with lifelong disabilities, and all aspects of nursing facility care, supportive housing, and home care.

Federal and state regulations should require that all LTSS providers monitor staff levels to ensure that individuals’ needs are being met, and should adjust staffing levels to maintain this standard.

States should:

  • provide ongoing monitoring and independent evaluation of state Medicaid LTSS systems with meaningful consumer input;
  • 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;
  • provide sufficient oversight infrastructure, resources, expertise, and commitment; and
  • 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.

Legal protections

In this policy: FederalState

Consumers’ access to the judicial system should be protected, including a private right of action to enforce quality standards.

Legislatures 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 Chapter 12, Personal and Legal Rights: Private Enforcement of Legal Rights, for additional policy on access to the judicial system).

Congress should make pre-dispute mandatory arbitration provisions in LTSS contracts unenforceable (see Chapter 12, Personal and Legal Rights: Private Enforcement of Legal Rights, for additional policy on binding mandatory arbitration).

Federal and state governments should protect LTSS applicants and consumers from discrimination.

Licensing

In this policy: State

States should enact licensing requirements for all 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.

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

States should bar the following people from owning, obtaining a license for, or receiving construction approvals for nursing facilities, supportive housing, or home-care agencies:

  • people with a relevant criminal record or relevant poor credit history, and
  • providers whose facilities or service agencies have repeatedly been cited for deficiencies in major quality-of-care requirements, for consistently providing poor-quality care, or for 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).

Consumer complaints and ombudsman reports should be taken into account during licensing inspections and licensing renewal.

Accreditation

In this policy: FederalState

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.

Confidentiality of medical and LTSS records

In this policy: Federal

Minimum standards for confidentiality of medical and LTSS records would best be established through a single federal law applicable to the entire health and LTSS system (see Chapter 7, Health: Reforming the Delivery of Health Care Services—Privacy and Confidentiality of Health Information).

Pay-for-performance programs

In this policy: FederalState

The first element of any pay-for-performance program should be basic reimbursement levels that are adequate to pay for 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.

States considering basing payments to LTSS providers on improved quality outcomes should rely on data from pilot projects developed with strong consumer participation.

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.

Keeping the public informed

In this policy: FederalLocalState

States should ensure that survey results and other information regarding quality, including comparisons with other national standards when possible, are made available to the public in an easily comprehensible format, including electronically.

This information should be updated at least annually, and the availability of this information should be publicized in a timely manner.

Information should be collected and made public in a timely manner about the quality of nursing facilities, supportive housing, and home-care agencies, including data on staffing levels in nursing facilities and supportive housing.

States should collect data for evaluating the effectiveness of the ombudsman program and make information about the program available to the public.

Consumer complaints

In this policy: FederalState

States should provide effective complaint systems with prompt resolution.

States should require the establishment of internal appeals mechanisms in LTSS programs for consumers who are dissatisfied with the delivery, quality, or scope of services, and should set up external appeals mechanisms 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.

State ombudsmen

In this policy: State

States should implement and fund strong and independent LTSS ombudsman programs that go beyond federal requirements and include an adequate number of ombudsmen.

A state LTSS ombudsman should have the authority to sue to redress violations of federal and state laws pertaining to residents’ rights and quality of care.

States should coordinate all LTSS ombudsman activities and ensure that ombudsmen have adequate funding, including enough funding to monitor home- and community-based services.

States should extend the purview of the ombudsman program to include non-institutional care.

Ombudsmen, residents, and families and/or their representatives should be allowed to participate actively in state-initiated enforcement actions by giving testimony or arguing for or against a proposed action.

States should require ongoing in-service training and supervision for ombudsmen.

Federal role in ombudsman programs

In this policy: Federal

The federal government should enhance funding and strengthen requirements for states to implement LTSS ombudsman programs.

Minimum staffing ratios should be established for state ombudsman programs, equivalent to the Institute of Medicine’s 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 be encouraged to exceed the minimum staffing ratio for their ombudsman programs and maintain a minimum of one full-time-equivalent paid ombudsman for every 20 volunteers.

The federal requirement that the ombudsman program be independent of the state regulatory agency should be enforced.

Abuse and neglect

In this policy: State

State governments should fully fund the agencies responsible for investigating abuse and neglect and should ensure that they have the capacity to respond appropriately and follow-up (see Chapter 12, Personal and Legal Rights, for additional policy on elder abuse and neglect).

State regulations should require that all suspected cases of resident abuse or neglect be reported to the official state ombudsman and the appropriate state agency.

States should enact laws making providers liable for criminal and civil penalties for abuse and neglect of those in their care.

Information from suspected cases of abuse or neglect of nursing facility residents should be used in the state survey and certification process; information from suspected cases of abuse or neglect of people receiving home- or community-based care should be reported to the appropriate state agency.

Whistle-blower protection

In this policy: FederalState

States should provide whistleblower protections for staff and others who report fraud and low-quality care to the appropriate authorities.

Special needs care

In this policy: FederalState

States should provide adequate capacity and infrastructure for necessary care (including care for dementia and other specialty care) for all eligible individuals, in reasonable and appropriate care settings.

The federal government should provide dementia-specific training and information about resources to family caregivers and advocacy and volunteer groups.

Privacy and social media

In this policy: State

State governments should review their laws to ensure that they prohibit LTSS staff from taking, keeping and/or distributing photographs and recordings that demean or humiliate a client or otherwise violate the consumer’s right to privacy and confidentiality.

Found in Quality and Consumer Rights Across Settings