ALW Final Report:
Positive Outcomes for Consumers

Background on the ALW initiative

Over the past five years front-page articles in national media about problems in assisted living coupled with two sobering reports from the General Accounting Office (GAO) on issues in assisted living, moved the U.S. Senate Special Committee on Aging to hold hearings in 1999 and 2001. As a result of the 2001 hearing, in August 2001 the Committee asked assisted living stakeholders to collaborate and develop recommendations designed to ensure more consistent quality in assisted living services nationwide. The Committee's request included ensuring that the process be inclusive and encourage all interested national organizations to participate. The Committee indicated that they would hold another hearing in April 2003 to receive the recommendations developed through this initiative. Meetings with diverse stakeholders began in late August 2001 and continued through March 2003. This initiative, known as the Assisted Living Workgroup (ALW), was co-facilitated by Karen Love from the Consumer Consortium on Assisted Living and Doug Pace from the American Association of Homes and Services for the Aging.

What did the process accomplish?

• The ALW initiative represented an historic opportunity for the diverse stakeholders in assisted living to dialog and debate what service capacity and standards are required to deliver consistent, quality assisted living nationwide. Stakeholder participation included national organizations representing: accreditation; aging and long-term care; consumer advocacy; the disability community; health care professionals; providers; regulators; and state government.
• One hundred and ten recommendations were approved by a majority of the ALW participants. The recommendations are divided into 7 topic areas:

  • Accountability and oversight
  • Affordability
  • Direct care
  • Medication management
  • Operations
  • Resident rights
  • Staffing
• The development of a single definition of assisted living was a complex issue: states currently define and license/regulate assisted living differently; providers want to continue to self-determine the scope of services they provide; and consumer's need a consistent understanding of what to expect. Part A of the definition was approved by a majority of ALW participating organizations and is significant because the definition:
  • Requires that all assisted living residences (ALRs) have 24-hour awake staff
  • Requires that all ALRs be able to provide for scheduled and unscheduled resident needs
  • Requires that an ALR's services are disclosed and agreed to in a contract between the resident and the provider
  • Requires ALRs to provide for or coordinate transportation and social services for residents
• While not reaching a majority, the definition includes a second part that addresses the need that assisted living units be private occupancy and shared only by the choice of a resident. Some organizations felt this condition limited residents who have low and moderate incomes from being able to afford assisted living. However, the intent of the condition is to establish that personal space is a privacy issue for residents and should be self-determined. If an individual is willing to share an assisted living unit because it is more affordable, than the resident should control that decision. Core principles were also approved by a majority to reflect that assisted living should provide an environment that actively supports and promotes quality of life for residents and rights to privacy, choice, dignity, and independence.

Key elements of the ALW report

The most significant aspect of the ALW report is its philosophical foundation for consumer-directed and supportive measures. The ALW recommendations move assisted living away from a "consumer beware" approach that the Senate Aging Committee expressed concern over to one in which service capacity and standards are clearly set forth.

Other significant aspects of the report

Disclosure
Assisted living residences (ALRs) vary greatly in the scope of services offered making it confusing for consumers to understand the differences . Not all states require that ALRs provide a contract outlining services, conditions of discharge and rate changes and other pertinent issues. The ALW recommendations are notable for requiring that all ALRs should have understandable contracts available for review prior to admission that include a list of required elements. Other significant consumer-supportive disclosure elements included in the recommendations are:

• Pre-admission information detailing the specialized aspects of programs for individuals with cognitive impairment [R. 7]
• Pre-admission information about resident rights under state law for advance directives including an ALR's philosophy and policies towards implementation of advance medical directives [R.9];
• Pre-admission information about end-of-life care [R.10];
• Minimum 30 day notice period before changing the amount of basic fees or other fee schedules [R.15];
• Resident rights upon transfer or discharge [R.16];
• Disclosure of policies, procedures and service capacity relevant to medication management and associated costs [M. 2]; and
• Consumer access to state survey/inspection reports [R.17]

Considerations for individuals with cognitive impairment
Available data indicate that as many as 64% of assisted living residents have some level of cognitive impairment. The ALW report addresses this important factor through:

• A recommendation that ALRs have procedures to identify, evaluate, monitor and provide for the care needs for individuals with cognitive impairment, staff training to support care needs, understanding that service plans may need more frequent revision due to the changing nature of an individual's cognitive impairment, and the need for on-going resident assessment [D. 10 and 11]
• Requirement that ALRs shall have secure boundaries or perimeters to safely accommodate residents who exhibit unsafe wandering behavior [O. 15]
• A recommendation that addresses specialized considerations for activities and recreation for this special need population [O. 10]

Medication management and administration
Medication management and administration is an important consumer issue. Consumer understanding of the services provided, and safe and effective management of resident's medication regimen are major concerns. Key recommendations include:

• Development of policies and procedures regarding medication management [M. 1]
• Resident assessment and service planning [M. 3, 4 and 5]
• Role of licensed and unlicensed personnel in medication management [ M. 6, 7, 8, 9, and 10]
• Medication orders, storage and documentation [M. 11,12, 13, and 14]

Staffing and employment
Staffing is the foundation of an ALR's ability to provide care. The amount of staff, their preparation and training, management practices, and the ability of staff to appropriately communicate are paramount to quality care for residents and hence quality of life. Significant recommendations in this area are:

• Staff who interact with resident's care are required to have the ability to communicate in English with residents and the community at large [S. 1]
• Use of the federal national criminal background check registry for all ALR personnel instead of state registries [S. 2]
• Supportive and appropriate staff recruitment and retention practices for ALR management and human resource personnel [S. 12 and 13]
• The requirement that ALRs shall disclose the minimum number of direct care staff available on each shift

Next steps
The ALW report also addresses next steps that include the creation of a Center for Excellence in Assisted Living to continue the work of the ALW[AO. 1].