Introduction

The Long-Term Care Ombudsman Program was established under the Older Americans Act (OAA) to advocate on behalf of older residents of long-term care facilities. Ombudsman programs in every state and 570 local or regional areas carry out a variety of activities to assist residents and their loved ones to obtain a good quality of life and care in nursing homes, assisted living, and other types of long-term care facilities.

This report provides the first compilation of data from all state ombudsman programs on the types of problems reported by those who turn to the program for assistance and on other activities carried out by ombudsmen. Thus, the national totals for FY 1996 constitute the baseline for this information.

Beginning in FY 1995, all states provided comparable data on their local programs, staff, volunteers, numbers of facilities and beds, and sources of funding, making the FY 1996 the second year for which this information is available.

This report also includes a list of major issues identified by the states and descriptions of best practices reported by state ombudsman programs for the period covered by the report.

Cases and Complaints

Ombudsmen opened 126,606 new cases and closed 116,242 cases, involving 179,111 complaints, in FY 1996. All data in this report is for cases closed. Most complaints were filed by residents of facilities or friends or relatives of residents. Seventy-four percent of complaints were verified, and 72.1 percent of all complaints were resolved or partially resolved to the satisfaction of the resident or complainant.

Eighty-one percent of the cases closed involved nursing homes. The five most frequent nursing home complaints concerned:

• accidents, improper handling
• requests for assistance unheeded
• personal hygiene neglected
• lack of respect for residents, poor staff attitudes
• lack of adequate care plan, resident assessment

Seventeen percent of the cases closed involved board and care homes, including assisted living, adult care, and similar levels of care facilities. The five most frequent complaints involving these types of homes concerned:

• menu--quality, quantity, variation, choice
• physical abuse
• medications--administration, organization
• lack of respect for residents, poor staff attitudes
• equipment/building -- disrepair, hazard, poor lighting, and fire safety

National statistics on complainants (cases) and complaints (problems), including a list of the 20 most frequent types of complaints, are provided in Tables 1 through 4 and figures 1 through 3, below, and on the following pages. State breakdowns of data on complaints and complainants are provided in Appendices A-1 through A-5 and B-1 through B-10.

Program Operations

Most measures for the nationwide ombudsman program indicated relatively level funding and numbers of local programs and staff for the two-year period FY 1995 to 1996. As shown in Table 5 below, for FY 1996, program funding from all sources totaled $41,519,334, approximatly one million dollars above the FY 1995 funding level. There were 570 local programs, five more than in FY 1995, but the 847 full-time equivalent staff serving the program in FY 1996 were fewer than the number reported for FY 1995.⁽¹⁾

Notwithstanding the level measures in other areas, the number of ombudsman volunteers increased markedly during this two-year period -- from 6,421 certified and a total of 11,580 for FY 1995 to 6,622 certified and a total of 12,657 for FY 1996.

Although the state ombudsman reports show that the number of nursing facilities decreased from 18,911 in FY 1995 to 18,066 in FY 1996, and other data also show a decline in the number of nursing homes nationwide,⁽²⁾ the number of beds in nursing facilities increased during the two-year period, demonstrating that fewer nursing facilities are growing larger in size. The number of licensed board and care-type facilities and beds, including assisted living, adult care, residential care and similar homes, increased dramatically, from 35,304 facilities with 662,199 beds in FY 1995 to 39,369 facilities with 673,903 beds in FY 1995. Comparing these totals with earlier data⁽³⁾ on licensed facilities of this type demonstrates the growing importance of this segment of the continuum of long-term care.

The ratio of paid full-time equivalent (FTE) ombudsmen to total number of long-term care facility beds was one to 2,973 in FY 1996, approximately one-third greater than the ratio of one FTE to 2,000 beds which the Institute of Medicine, in their landmark study of the Long-Term Care Ombudsman Program,⁽⁴⁾ said was required for ombudsman programs to fulfill the responsibilities assigned to them in the Older Americans Act.

Tables 5 through 9 and figures 4 and 5 provide national data on funding, local ombudsman programs, staff and volunteers, and multi-year funding and other program trends.

Organizational Location of State Ombudsman Programs

Most state long-term care ombudsman programs are physically and organizationally located in the state units on aging, but programs in the 12 states listed in Table 10 are located outside of the state agency on aging.

Other Ombudsman Activities

Ombudsmen perform numerous functions in addition to investigating and resolving complaints. These include training ombudsman staff and volunteers, training and consulting with managers and staff of long-term care facilities, providing information and consultation to individuals, participating in facility surveys conducted by state regulatory agencies, working with resident and family councils, providing community education, and working with the media. These activities are listed in Table 11, below, with national totals measuring the extent of ombudsman work on each of the activities, nationwide.

In addition to these activities, ombudsmen also:

• visit facilities on a regular basis, not in response to complaints; in FY 1996 ombudsmen reported visiting 70.7 percent of all nursing facilities and 28.1 percent of all board and care and similar types of homes (see Appendices A-1 and A-10); and,
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• monitor and work on laws, regulations, and government policies and actions.
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Ombudsman work on laws, regulations and government policies and actions is referred to as issues advocacy. Appendix A-10 shows the amount of state ombudsman staff time each state estimated spending on this aspect of ombudsman work. It is significant that almost half (eight) of the seventeen states reporting that state ombudman staff spend thirty percent or more of their time on issues advocacy are among the twelve states whose programs are located outside the state agency on aging (CO, DC, FL, MI, VT, WA, WI and WY)⁽⁵⁾.

Major Long-Term Care Issues

States were asked to describe the priority issues which their program had identified and/or worked on during the reporting period; barriers to resolution; and recommendations for system-wide changes needed to resolve the issue, or how the issue was resolved in their state. Thirty-seven states responded to this question. As in previous state reports, the issues were often interconnected. Issues identified by the states are listed below in the order of the frequency with which they were mentioned in the state reports.

1. Regulation and enforcement issues, especially as related to poor performing facilities: 16 states (AK, CA, DC, MI, MA, NC, NV, OH, PA, KS, RI, TX, UT, VT, WI, WA)

2. Limited long-term care options, especially for Medicaid-eligible and moderate- income individuals: 11 states (DC, IN, MI, MN, NC, NH, TN, VT, WV, WA, MA)

3. Chronic shortage of qualified, trained, equitably compensated staff to assist residents-10 states (CO, DC, FL, IN, LA, MA, MT, NC, OH, TX)

4. Ombudsman program issues: 10 states (AK, CA, KS, MD, MS, NH, NJ, PR, WA)

5. Board and care homes/assisted living (also related to topic # 1, regulation and enforcement issues): 9 states (KS, LA, ME, NM, OR, PA, WI, WV, WA)

6. Involuntary transfers, discharge and readmission issues, especially related to residents with dementia and mental health problems: 9 states (AZ, IN, KS, KY, MA, MO, NH, OR, WA)

7. Resident abuse; adult protective services: 6 states (AK, MD, MN, NH, OR, SC)

8. Abuse registries: 3 states (AK, NJ, UT)

9. Bioethical (advance directives and right to refuse medical treatment) issues: 2 states (IN, NJ)

10. Medicare, Medicaid anti-fraud and abuse: 2 states (IL, NY)

11. Managed care: 2 states (FL, MA)

12. Guardianship and legal issues: 2 states: (MO, RI)

13. Family councils: 1 state (SC)

14. Physician accountability: l state. (WA)

15. Behavior of residents and families: 1 state (MO)

Narrative material from the states on the issues listed and other topics will be included in the FY 1997 Administration on Aging Long-Term Care Ombudsman Report.

Best Practices in State Ombudsman Programs

The following examples of ombudsman advocacy, public education and problem solving reflect the wide range of projects and activities which ombudsmen undertake to improve the long-term care system for residents.

Advocacy

Colorado -- Alternative Method of Enforcing Nursing Home Rules

A local ombudsman program arranged for a meeting with the corporate owner of a troubled facility to review the types, and details, of complaints received about the facility during the previous 12 month period. The meeting was held as a last attempt to improve widespread problems at the home before a larger meeting with families, health officials and legislators would be called. The corporate representatives came to the pre-meeting having fired the administrator and director of nursing and with a workable action plan to correct problems at the facility.

Indiana -- Information to Residents in Homes Threatened With Closure

The Ombudsman Program arranged for automatic notification by the program and the enforcement agency to all residents and their legal representatives in facilities deemed to be in "immediate jeopardy" of closure by the state due to conditions in the facility. If a facility is terminated, the survey agency and the ombudsman program send residents a second letter informing them of the reasons for the closure, outlining residents' rights pertaining to relocation and stressing that residents may move to the facility of their choice. Having this information allays residents' anxiety and affords them the rights and dignity they deserve in this stressful situation.

Kentucky -- More Equitable Procedures for Determining Medicaid Eligibility

The state and local ombudsman programs launched a coordinated public campaign to highlight the lack of fair and impartial hearings for individuals being "adversed" from Medicaid and termination of payments while the case was under appeal. In response, the legislature passed a bill establishing rules more equitable to individuals appealing for Medicaid coverage and providing benefits while cases are under review.

Minnesota -- Ombudsman Response in a Natural Disaster

When the flooding of the Red River forced evacuation and permanent relocation of 200 residents of two facilities, state and local ombudsmen helped determine relocation preferences of families and residents, cut through red tape to place residents of two states (MN and ND) in preferred locations, and assisted residents to file claims for lost possessions. The only agency to track all residents affected by the flood, the ombudsman program made follow-up visits to all residents and assisted with additional relocations, as requested, and in securing attention to residents' mental health needs.

Nebraska -- Ombudsman Notification of Facility Surveys

As a result of a formal policy that the health department would notify the Ombudsman Program of standard surveys, volunteer ombudsmen have met with resident councils and family members to provide information on the survey process and how they may provide input to surveyors. As a result, communication between residents, families and surveyors about both deficient and good care practices in the facility has improved and residents and families are more empowered to take steps to resolve their concerns.

West Virginia -- Increased Income for Residents Who Return to Their Own Homes

The Ombudsman Program determined that a state policy requiring pro-rated payments by residents who left facilities to return home was not being implemented. As a result of ombudsman intervention, the responsible state agency is now enforcing their own policy. The ombudsman estimates that savings to residents could total three million dollars.

Wisconsin -- Legislation to Benefit Programs and Residents as Result of Audit

Following a series of newspaper articles which were critical of the licensure/certification agency, the ombudsman suggested to key legislators that it might be useful to examine the ombudsman program with a focus on its relationship with the survey agency and the staffing needs of the ombudsman program. The resulting audit and report led to a flurry of legislation protecting whistle-blowers; raising nurse staffing ratios in facilities; expanding residents' right to know to include staffing levels and the latest citations and complaints against the facility; an increase in the ombudsman program appropriation, and substantially increased fines for violation of nursing home regulations. The survey agency accelerated its time frame for strengthening the nursing home code of regulations, agreed to let the ombudsman program edit their form letters to consumers to make them more "consumer friendly," and agreed to connect all ombudsmen into their computer system to share complaint information.

Education/Training

Alabama -- Public Education About All Forms of Abuse

Ombudsmen in the Area Agency on Aging in Mobile joined in a coalition of local organizations to educate people on all aspects of abuse--child, spousal, elderly, disabled, and animal--to build better citizens and make this a better world. Activities include a poster contest, with entries shown on television; a candlelight vigil in memory of all victims of abuse; billboards denouncing violence and posting help line telephone numbers; informative flyers and bumper stickers distributed at schools, malls and other places of commerce; and wide dissemination of two-colored ribbons--blue for awareness and white for the victims.

Michigan -- Consumer Guide to the Nursing Home Inspection Process

The Ombudsman Program wrote and published the first consumers' guide to the inspection processes, both survey and complaint investigation, and developed training for family members based on advice and suggestions in the booklet. The training program helps families define and prioritize the issues to be presented to the inspectors.

Missouri -- Educational Program for Family Members and Friends on GUILT

A regional ombudsman program developed the one hour program, which deals with the guilt people often feel upon admitting a loved one to a nursing home. The program is offered free of charge to family councils and other family/friend groups and is well received by facility staff and managers as well as the family members and friends to whom it is presented. Of particular note is a list of creative activities entitled "101 Things to Do while Visiting Your Older Adult." Examples: do exercises together to keep in shape; share your own favorite stories and memories; plant and take care of an indoor windowsill garden together.

South Dakota -- Local Ombudsman Training Targeted on Problem Areas

The State Ombudsman determined the topics in the State Operations Manual in which the greatest numbers of questions are asked and complaints filed (example: rules regarding use of restraints). He then assembled a list of videos and other resources and provided targeted training to local ombudsmen on those areas and topics.

Texas -- Volunteer Recruitment and Education Through a Newsletter

The Ombudsman Program, working with the Texas chapter of the American Association of Retired Persons, sent over 5,700 letters to prospective volunteers, especially retired registered and licensed practical nurses, asking them to consider being volunteer ombudsmen. A quarterly newsletter for ombudsman volunteers links them to others in the state and to the state office and provides current information about nursing home regulatory and rule revisions and best practices in facilities.

Utah -- Dealing with Resident Abuse by Family Members

In response to a request from a social worker in a nursing home where staff had witnessed various levels of resident abuse by family members, the ombudsman worked with an expert in domestic violence to put together an interactive workshop to explore ways in which facility staff could respond when residents are the victims of domestic violence. The workshop includes a questionnaire staff can use to assess how residents view their personal support system outside of the facility.

Florida -- Statewide Mileage from Celebration of Residents' Rights Week in the State Capitol

In response to a call to nursing homes from the Ombudsman Program, residents made banners depicting residents' rights, over 60 of which hung in the Capitol rotunda during Residents' Rights Week. A program at the capitol featured legislative speakers; reading of the statewide proclamation; musical selections; community speakers; and poems, reflections and remarks from the over 50 enthusiastic residents who attended, along with 75 other people. The event was videotaped and distributed to local ombudsman councils to be used throughout the year in residents' rights education initiatives and in-service staff training. The effort was also featured in local news broadcasts throughout the state.

Illinois -- Ribbons for Public Awareness of Nursing Home Residents and Rights

A local ombudsman program operated by the Illinois Retired Teacher's Association made looped cobalt blue and gold lapel ribbons as a symbol for shining the light of truth on nursing homes and the need for good care of residents. The blue symbolizes "truth," the gold "light." The goals of the ribbon project were threefold: to enlighten the public on the need for quality care, recruit one volunteer for every 25 residents, and spread the idea nationwide. Ombudsman staff and volunteers distributed the ribbons to residents, nursing home staff, friends, reporters, discharge planners, social workers, elder abuse workers, and strangers. They gave one to each legislator, along with an article entitled "Shining the Light of Truth on Nursing Homes."

Oklahoma -- Honoring Career Nurse Aides

The Ombudsman Program and the Nursing Home Association of Oklahoma encouraged each nursing home to involve staff, residents and local ombudsmen in selecting its Career Nurse Aide of the Year. From these nominees, regional winners were chosen and from these, the state winner was selected.

Iowa -- Facility Quality Recognition Program

The Iowa Department of Elder Affairs, in coalition with other agencies and associations, launched a new program called the Quality Recognition Program to acknowledge and publicize nursing facilities that develop creative ways to more efficiently manage facilities and enhance the quality of life of residents

Ombudsman Protocols, Standards

California -- Two Projects: Developing Program Regulations, Training, and Other Materials with Local Ombudsmen and Computerized Management Information System

State and local ombudsman staff worked in special task forces to develop a new core training curriculum, regulations for the program, memoranda of understanding with appropriate agencies and strategic direction/program oversight. The result was a broad-based pool of knowledge in each of these areas and improved working relations between the state and local staffs.

California also established OmView, a sophisticated information management software system which generates pre-defined management reports, provides on-line analysis functions that enable users to interactively explore significant issues, and includes extensive tools for creating custom reports and ad hoc queries. For example, OmView permits users to determine how complaint resolution is changing over time by type of complaint, facility, ombudsman and other characteristics; focus on specific issues, such as complaints involving Medicare and Medicaid fraud and abuse; and carry out other specific queries.

District of Columbia -- Pro Bono Legal Help on Institutional Care Cases and Issues

The Ombudsman Program sponsors a referral project, supported by the bar association and local legal services office, which enlists attorneys on a pro bono basis for such cases and issues as: involuntary transfer or discharge of individual residents; individual public benefits problems (SSI overpayments, medical bill problems); appointment of a receiver or monitor over substandard facilities; theft of residents' personal needs accounts; and a systemic case about state nursing home regulations which resulted in the judge nullifying all state nursing home regulations because they did not comply with the federal nursing home regulations. They have NOT referred cases of medical malpractice or negligence because they believe that this would be a conflict of interest.

Georgia -- Using Data to Establish Standards and Develop Resources

Using statistics from its statewide case and program operations data collection system, the Ombudsman Program established quantifiable standards for local program operations. Not only have these provided a clear expression of the state's expectations of local programs and a tool for evaluating their performance, but the standards and statistics have been invaluable in advocating successfully for additional program funding at both the state and local levels.

Puerto Rico -- Study of Board and Care Facilities

Ombudsman Program staff supervised collection of information on the personnel, residents and services in 599 board and care facilities. The study showed significant increases in the number of residents and facilities and a notable increase in administrators' level of education from 1993 through 1997.

1. This drop, however, was largely due to a substantial drop in the number of staff reported by one program -- South Carolina.

2. The Health Care Financing Administration reported that there were 17,373 nursing homes in the U.S. certified for Medicare and Medicaid as of May 20, 1998.

3. In 1990 there were approximately 34,000 licensed board and care homes with more than 613,000 beds. (Results from the 1990 National Health Provider Inventory, cited in "Analysis of the Effect of Regulation on the Quality of Care in Board and Care Homes", Research Triangle Institute and Brown University study sponsored by the U.S. Department of Health and Human Services, July 10, 1995.)

4. Real People, Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act 1995

5. This is only one of several types of analysis which can be carried out with data in the "other ombudsman activities in addition to complaints" section of the report.