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

Implications of Consumer Control


Susan Reinhard, Ph.D., R.N., Professor, Research and Health Policy, Center for State Health Policy, Rutgers University, New Brunswick, NJ.

Patricia A. Maben, R.N., M.N., Director, Long-term Care Program, Bureau of Health Facilities, Kansas Department of Health and Environment, Topeka, KS.

Nurse Practice Acts are implemented by State Boards of Nursing and can be a major barrier to consumer-directed care for the following reasons:

  1. States' laws typically define the mission of Boards of Nursing as protection of the public. Thus, Boards serve a policing function, focused on developing laws and regulations that are often contrary to the goals of consumer-directed care.
  2. Boards of Nursing are typically staffed by health care professionals who have been socialized into a paternalistic model of practice that makes patient protection (as opposed to consumer direction or satisfaction) a primary goal.
  3. Persons serving on Boards of Nursing often come from acute care practice backgrounds and lack experience with and understanding of consumer-directed care models.
  4. Boards of Nursing often function in isolation from State agencies (e.g., Medicaid and State Offices on Aging) that have primary responsibility for developing and funding consumer-directed care options.

Things nurses and policymakers can do to support the development and use of consumer-directed care include:

  • Sponsor outcome research on nurse delegation and exemption.
  • Have Boards of Nursing with experience with consumer-directed care and nurse delegation issues share their experiences with other States' boards.
  • Provide education to help people, including nurses, learn the concepts.
  • Develop a national consensus in support of consumer-directed care.

States have two policy options for drafting laws that support consumer direction and avoid conflict with Nurse Practice Acts:

  1. Exemption: With this policy, a category of persons or programs is exempted from the jurisdiction of Nurse Practice Acts. For example, New York exempts the Personal Care Assistance Program.
  2. Nurse delegation allows for the transfer of authority from a nurse to an unlicensed person, with the nurse maintaining accountability.

Findings from a 50-State study of statutes with nurse delegation provisions, exemption provisions, and consumer-directed care language include the following laws that fall into four categories:

  • Laws in 11 States have broad language that allows the nurse to make all decisions regarding delegation, without any guidelines or restrictions.
  • Fifteen States' laws have discretionary language, with some requirements (usually around training or supervision), while giving the nurse discretion to make a number of decisions.
  • Fifteen States have laws that fall into the intermediate category, allowing for the use of nurse discretion in certain circumstances or settings.
  • Six States have narrow statutes that are very prescriptive, defining tasks, settings, and onsite nurse-supervision requirements. New York and Pennsylvania are silent on delegation, and Connecticut only provides guidelines that do not have the force of law.

States' consumer-directed care provisions vary, and only a few States' laws are drafted in ways that support consumer-directed care in independent living centers. Liability provisions in States' laws fall into five categories:

  1. Strict liability (makes nurses accountable for outcomes).
  2. Laws with vague language open to interpretation.
  3. Laws with conflicting language reliability.
  4. Laws with specific language to focus liability more on the process of delegation rather than the outcomes.
  5. Statutes or regulations that do not include language pertaining to the liability issue.

In response to an increasing elderly population, high rates of nursing home placements, and rising institutional care costs, Kansas formed a Long-term Care Action Committee with representatives from Medicaid, housing, licensure, and the Office on Aging, to develop a statewide long-term care plan for the elderly and persons with disabilities. The Committee's mission focused on:

  • Choice.
  • Quality.
  • Cost-effectiveness.
  • Development of community-based options.

The Committee's work was supported by three significant pieces of legislation:

  • An attendant care statute (enacted in 1989), which exempts personal care attendants from the State's Nurse Practice Act and allows them to provide home care to persons with disabilities.
  • An amendment to the home health care statute to distinguish personal care attendants from home health aides.
  • A 1993 amendment to the Nurse Practice Act to provide for nurse delegation.

The new laws set the stage for the development of community-based options for care in the State, including:

  • The development of expanded housing choices.
  • The development of a home and community-based services waiver.
  • A plan for protecting vulnerable populations.

As a result of these changes in policy, Kansas experienced:

  • Increased utilization of licensed residential facilities.
  • Decreased utilization of nursing facilities.
  • Increased numbers of community-based alternatives for care.
  • Decreased numbers of nursing home beds.

To support the use of community-based long-term care options, Kansas developed a pre-admission screening process that presents community-based alternatives to those seeking nursing home placement. The State also developed a public awareness campaign to increase awareness of the options.

Issues that the State continues to wrestle with include:

  • Responding to increasing consumer demand for community-based services.
  • Balancing consumer protection and an oversight role with increased freedom of choice for consumers.

Additional Resources

Reinhard SC. Summary of key provisions of state nurse practice acts and regulations affecting consumer-directed care. New Brunswick (NJ): Center for State Health Policy, Rutgers University;2001 Jun.

Bond G, Eyres SJ, Shull Y, et al. Nurse delegation study: Final report. Seattle (WA): University of Washington;1998 Nov.

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