Beyond Olmstead: Community-Based Services for All People with Disabilities

Balancing Risk & Safety

Presenter: Rosalie A. Kane, Ph.D., Professor, School of Public Health, Long-term Care Center, Division of Health Services Research and Policy, University of Minnesota, Minneapolis, MN.

Finding ways to balance risk and safety, while providing community-based services to an elderly and/or disabled population, is one of the most difficult challenges States face as they seek to comply with the requirements of the Olmstead decision. The focus of institutional care is on:

• Safety.
• Patient protection.
• Risk avoidance.

Many are concerned that this bias will have spillover effects on the provision of long-term services in the community.

The current approach among care providers seeks to achieve the best quality of life consistent with health and safety outcomes. The reverse formulation—seeking the best safety and health outcomes consistent with resident's autonomy and quality of life—would establish an entirely different priority system. This focus is rarely consistent with consumer perceptions or definitions of quality of life and creates a significant amount of ambiguity about where the emphasis lies: with quality of life or with health and safety outcomes.

To comply with Olmstead, there needs to be a change in the current paradigm, which values client safety over individual choice. Concerns about legal liability and lack of clarity about responsibility for bad outcomes create significant barriers to change. Recent trends, however, are driving the need to change the ways in which States approach risk, safety, and independence in providing long-term care services. These include:

• The Olmstead decision, which requires States to make services available to persons in the least restrictive setting appropriate for their circumstances.
• Increased consumer demands to be able to direct their own care and services.
• Growing acceptance of risk as part of normal adult life.
• Evolving definitions of "quality" in the long-term care arena.

Important questions for policymakers to consider as they strive to develop and implement high-quality consumer-directed programs are:

• Are any risks to health and safety consistent with adequate quality?
• What is the balance between informed risk-taking and adequate quality?
• Does the right to refuse treatments (e.g., surgery) extend to the right to refuse care (e.g., a bath)?
• How does one distinguish provider's respect for consumer autonomy from negligence?

Negotiated Risk Agreements

Eleven States (Delaware, Florida, Hawaii, Illinois, Kansas, New Jersey, Oklahoma, Oregon, Vermont, Washington, and Wisconsin) use negotiated risk agreements (NRAs, or managed risk agreements) as a vehicle for balancing freedom and safety. NRAs are written agreements between a care provider and consumer (or consumer's representative) that memorializes the parties' discussions and agreements regarding the consumer's preferences and how they will be accommodated by the provider.

The agreement describes a process by which a consumer (or consumer representative) knowingly decides to accept a risk after having been informed about the risk. The legal basis for NRAs is contractual; the consumer gets his or her preference, while the provider, in theory, is held harmless.

There are five components of a typical NRA. These include:

• Statement of the provider's concerns.
• Statement of the concerns, goals, and preferences of the consumer.
• Statement of possible and probable consequences of consumer having his or her preferences met.
• Alternative strategies for minimizing risk.
• The final decision of the parties.

Although NRAs are a useful legal mechanism for ensuring consumer preferences for care, they cannot override existing State or Federal laws. Under usual circumstances, a good care plan is sufficient to ensure that consumer preferences are met. However, NRAs are useful when:

• There is conflict among the parties.
• The consumer's preference poses risk to others.
• The preference poses a risk to the consumer.

NRAs are useful vehicles for ensuring consumer preferences for care, while at the same time, minimizing risk to providers for complying with such preferences. However, the agreements are not a panacea and raise several concerns. Concerns raised by NRAs include:

• Do they adequately protect providers from liability?
• Do they exonerate providers from negligent acts and poor quality of care?
• Should providers be forced to accept risky behavior?
• Are NRAs inherently coercive?
• What if the client lacks capacity to enter into a contractual agreement?

Ensuring high-quality care consistent with consumer direction is high on the agenda of both the State and Federal governments. The Institute of Medicine studied quality in the long-term care arena and, in February 2001, issued a report that cautiously recommended increased access to consumer-directed care and a research agenda that includes studying:

• The effects of different approaches to balancing freedom and safety.
• The benefits and risks of consumer-centered care.
• Similarities and variation among consumer preferences for long-term services.
• The nature of risk.
• The effectiveness of negotiated risk agreements for dealing with risk and safety.

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