Challenges and Innovations in Systems Advocacy by the Long-Term Care Ombudsman Program

2018 The National Consumer Voice for Long-Term Care Conference                      Alexandria, VA

October 22, 2018

Kim Nguyen, PhD

Emily White, MA

NORC at the University of Chicago

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Overview of LTCOP

As authorized by the Older Americans Act (OAA), the Long-Term Care Ombudsman Program (LTCOP) has the following responsibilities nationally:

Identify, investigate, and resolve complaints made by or on behalf of residents of long-term care facilities 

Provide information to residents, families, staff

Advocate for systemic changes to improve residents’ care and quality of life

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Overview of LTCOP

The LTCOP is administered by the Administration on Aging

Each state has an Office of the Long-Term Care Ombudsman. 

53 programs, including Guam, Puerto Rico, and Washington DC. Each Office is led by a State Long-Term Care Ombudsman.

Ombudsmen/Representatives of the Office are advocates for residents of long-term care facilities. 

1,320 paid program staff (FTE) in 2016

524 designated local Ombudsman entities in 2016

A large volunteer workforce supports the program to maintain a presence in facilities.

7,331 certified volunteers in 2016

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National Evaluation of the LTCOP

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Evaluation Team 

Process Evaluation and Special Studies Related to the LTCOP

NORC at the University of Chicago (NORC Chicago)

National Consumer Voice for Quality Long-Term Care (Consumer Voice)

Brooke Hollister, PhD, University of California, San Francisco

Helaine Resnick, PhD, Resnick, Chodorow & Associates

William Benson, Health Benefits ABCs

Human Services Research Institute (HSRI)

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Process Evaluation and Special Studies Related to the LTCOP

Research Questions

How is the LTCOP structured and how does it operate at the local, State, and Federal levels?

How do LTCOPs use existing resources to resolve problems of individual residents and to bring about changes at the facility and local, State, and Federal levels that will improve the quality of services available/ provided?

With whom do LTCOPs partner, and how do LTCOPs work with partner programs?

How does the LTCOP provide feedback on successful practices and areas for improvement?

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Data Collection 

Process Evaluation and Special Studies Related to the LTCOP

Round 1 Data Collection (2017)

Telephone Interviews

Federal Staff (5) √

Stakeholders (19) √

State Ombudsmen (53) √

Round 2 Data Collection (2018)

Online Surveys

State Ombudsmen (52) √

Local Ombudsmen (497 in 27 states) √

Volunteers (711 of  volunteers in 26 states) √

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Reporting

Findings will be disseminated through a Final Report, research briefs, and conference presentations.
| 1  | 2  | 3  | 4  | 5  | 6  | 7  | 8  | 9  | 10 |
|----|----|----|----|----|----|----|----|----|----|
| ME | NJ | DE | FL | IL | LA | IA | ND | AZ | AK |
| RI | NY | VA | KY | IN | NM | NE | SD | CA | WA |
| -  | -  | -  | TN | OH | -  | -  | -  | HI | -  |
| -  | -  | -  | SC | MN | -  | -  | -  | NV | -  |
| -  | -  | -  | -  | WI | -  | -  | -  | -  | -  |

Round 2 Local Data Collection (27 States) 

AoA Region

Data Collection

Process Evaluation and Special Studies Related to the LTCOP

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What is Systems Advocacy?

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What is Systems Advocacy?

Advocacy is defined as:

“The act of pleading for, supporting, or recommending.”

Systems are defined as:

“A combination of things or parts forming a complex or unitary whole” or “a coordinated body of methods or a scheme or plan of procedure.”

According to the OAA, systems advocacy involves the following:

Representing interests of residents

Seeking administrative, legal, or other remedies

Analyzing, commenting on, and recommending changes to a system to benefit long-term care residents

Facilitating public comment on laws, regulations, policies, and actions

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LTCOP & Systems Advocacy

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Who Performs Systems Advocacy?

Data: SLTCO Survey, Local Ombudsman Surveys, Volunteer Survey

State Ombudsmen

46% report that their statewide program has expertise in systems advocacy. 

Local Ombudsmen

68% report that the Office of the State LTCO coordinates with local programs to carry out systems advocacy.

88% report that the Office of the State LTCO encourages their local programs to carry out systems advocacy.

Volunteers

13% monitor and work on laws, regulations, government policies and actions.

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Among Local Ombudsmen with systems advocacy responsibilities:

30% report that they are unable to perform this task for various reasons (e.g. lack of time, resources, training)
| As part of your responsibilities, do you perform any systems advocacy work? | Local Ombudsmen |
|-----------------------------------------------------------------------------|-----------------|
| Yes                                                                         | 57%             |
| No, systems advocacy is not part of my responsibilities                     | 26%             |
| I don’t know                                                                | 17%             |

Data: Local Ombudsman Surveys

Who Performs Systems Advocacy?

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Systems Advocacy– Paid Staff

Data: Local Ombudsman Activities Surveys
| Which of the following activities do you perform?                      | “Yes”N=277*     | “No”N=121**     | “I don’t know”N=80***       | All Local OmbudsmenN=485**** |
|------------------------------------------------------------------------|-----------------|-----------------|-----------------------------|------------------------------|
| Advocacy for changes to laws, regulations, or policies                 | 45%             | 7%              | 10%                         | 29%                          |
| Engagement in policy making                                            | 20%             | 5%              | 2%                          | 13%                          |
| Grassroots organizing                                                  | 12%             | 5%              | 1%                          | 8%                           |
| Communication with the media                                           | 18%             | 2%              | 6%                          | 13%                          |
| Representing consumers in administrative hearings or appeals processes | 42%             | 21%             | 34%                         | 35%                          |
| Involvement in committees such as work groups or task forces           | 55%             | 18%             | 30%                         | 41%                          |
| Providing information to a public or private agency                    | 52%             | 31%             | 38%                         | 45%                          |
| None of the above                                                      | 4%              | 30%             | 23%                         | 14%                          |

*Missing=2; **Missing=4; ***Missing=4; ****Missing=12

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Average number of systems advocacy activities performed:

Local staff: 2 activities (range = 0-7 out of 7).

Volunteers: 1 activity (range = 0-4 out of 4).
| Which of the following activities do you perform?                          | Volunteer OmbudsmenN=711 |
|----------------------------------------------------------------------------|--------------------------|
| Provide information, resources, and support to resident councils           | 68%                      |
| Provide information, resources, and support to family councils             | 28%                      |
| Monitor/work on laws, regulations, government policies and actions         | 13%                      |
| Work with media on issues impacting residents of long-term care facilities | 3%                       |

Data: Volunteer Ombudsman Survey

Systems Advocacy Activities - Volunteers

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| Work together on systems advocacy | SLTCO% | SLTCON | Local Ombudsmen% | Local OmbudsmenN |
|-----------------------------------|--------|--------|------------------|------------------|
| Area Agency on Aging              | 65%    | 51     | 51%              | 464              |
| ADRC                              | 31%    | 51     | 34%              | 441              |
| Adult Protective Services         | 63%    | 51     | 38%              | 453              |
| P&A Systems                   | 52%    | 50     | 35%              | 444              |
| Licensure & Certification     | 80%    | 51     | 50%              | 455              |
| State Medicaid Fraud Control      | 43%    | 51     | 22%              | 440              |
| Victim Assistance Programs        | 25%    | 51     | 21%              | 437              |
| State/Local Law Enforcement       | 35%    | 51     | 28%              | 447              |
| Courts                            | 20%    | 50     | 19%              | 438              |
| State Legal Assistance            | 63%    | 51     | 31%              | 444              |

Data: SLTCO Survey, Local Ombudsman Surveys

Coordinating Entities

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Relationship Benefits and Barriers

Data: SLTCO Interviews, Local Ombudsman Surveys

Benefits. Relationships are mostly positive and critical to carrying out work. State agencies and other stakeholder organizations assist with: 

Supporting systems advocacy to improve quality of care for residents 

Providing the “teeth” to compel LTC facilities to improve care

Education on special populations

Barriers. Developing relationships can be challenging due to:

Lack of understanding of the LTCOP’s role and responsibilities

Different perspectives or priorities

Time constraints for staff of both LTCOP and coordinating entities

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Program Resources

Data: SLTCO Survey
| Types of systems advocacy activities not fully carried out due to a lack of resources                          | SLTCON=52 |
|----------------------------------------------------------------------------------------------------------------|-----------|
| Resident and family council development and support                                                            | 60%       |
| Facilitating public comment on proposed legislation, laws, regulations, policies, and actions                  | 48%       |
| Research and policy analysis to inform systems advocacy work                                                   | 42%       |
| Analyzing and monitoring federal, state, and local law, regulations, and other government policies and actions | 38%       |

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Program Resources 

Data: SLTCO Interviews, SLTCO Survey, Local Ombudsman Surveys

Prioritizing Resources

Funding challenges may cause programs to prioritize facility visits and individual case work over systems advocacy

Majority of State and Local Ombudsmen agree that funding and staffing are insufficient to meet federal mandates

Training

Fewer than half of Local Ombudsmen surveyed reported receiving training on systems advocacy in the past year

Some State Ombudsmen report a need for additional assistance in training staff to work with legislators

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Program Structure & Placement

Data: SLTCO Survey, Local Ombudsman Surveys
| Program Structure & Placement | State Ombudsmen | Local Ombudsmen |
|-----------------------------------|-----------------|-----------------|
| Centralized                       | 40%             | 26%             |
| Decentralized                     | 60%             | 74%             |
| In SUA                            | 62%             | 73%             |
| Not in SUA                        | 38%             | 27%             |

“My program’s organizational structure enables my local program to carry out systems advocacy activities.”

75% of Local Ombudsmen in decentralized programs agree, compared to 49% of those in centralized programs.

80% of Local Ombudsmen whose state programs are housed outside of the SUA agree, compared to 66% of those housed in the SUA.

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Majority of SLTCO feel they have autonomy to carry out systems advocacy, although some report a lack of support from their host agency or the state government.

Program resources may be the most significant barrier to carrying out systems advocacy.
| Autonomy of statewide program to carry out certain activities                         | Agree / Strongly Agree | Disagree /      Strongly Disagree | Don’t Know   | N  |
|---------------------------------------------------------------------------------------|------------------------|-----------------------------------|--------------|----|
| Unable to fulfill some program duties due to legislative or regulatory restrictions   | 17%                    | 75%                               | 6%           | 51 |
| Autonomy to carry out systems advocacy                                                | 90%                    | 8%                                | 2%           | 52 |
| Free to speak to the media                                                            | 80%                    | 15%                               | 4%           | 52 |
| Able to represent residents’ interests to state agencies w/o political interference   | 83%                    | 12%                               | 6%           | 52 |

Data: SLTCO Survey

Systems Advocacy and Program Autonomy  

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Systems Advocacy Issues

Data: Local Ombudsman Surveys, Volunteer Survey

Improving facility staffing (ratios, turnover, training)

Adequate funding for the LTCOP

Proper care for residents with:

mental health diagnoses

cognitive impairment

behavioral/substance use issues

Access to LTC for low income individuals, the formerly incarcerated, & registered sex offenders

Addressing inappropriate/involuntary discharges/transfers

Increasing Personal Needs Allowance (PNA)

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Thank you

Kim Nguyen, PhD	

301-634-9495

nguyen-kim@norc.org 

Emily White			

301-634-9314

white-emily@norc.org

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