Development of a National Adult Protective Services Data System: Namrs Pilot Final Report (volume 1). 1. Introduction

09/25/2015

Over the course of the next 15 years, the population in the United States of persons 65 years or older will climb to approximately 72.1 million.1 Currently, an estimated 33 million adults in the United States are living with a disability.2 Research studies have indicated that many of these persons are at high risk of abuse, neglect, or exploitation.3, 4 However, national statistics are not available to provide the information that the Federal Government and the states need to plan and develop prevention and intervention efforts to meet the needs of both of these vulnerable populations.

On March 23, 2010, President Obama signed into law the Elder Justice Act (EJA) as part of the Patient Protection and Affordable Care Act. The Act authorized the prevention, detection, treatment, understanding, intervention in, and, where appropriate, prosecution of elder abuse, neglect, and exploitation.5 The EJA also required the establishment of the Elder Justice Coordinating Council (EJCC), which recommended the establishment of a national adult protect services (APS) system.6

In September 2013, the U.S. Department of Health and Human Services (HHS), Office of the Assistant Secretary for Planning and Evaluation (ASPE), began a 2-year effort to design, develop, and pilot a national reporting system based on data from state APS agency information systems. The pilot effort addressed the EJCC's recommendation to develop a national APS system based upon standardized data collection and a core set of service provision standards and best practices.

The goal of the future data collection system will be to provide consistent, accurate national data on the exploitation and abuse of older adults and adults with disabilities, as reported to state APS agencies.

The project was funded by Prevention and Public Health funds through an interagency agreement with the HHS Administration for Community Living (ACL). WRMA, Inc., a TriMetrix Company (WRMA), in collaboration with the National Adult Protective Services Association (NAPSA), the Center of Excellence on Elder Abuse and Neglect at the University of California, Irvine, and a number of nationally recognized experts, designed and piloted the future system under the oversight of a federal steering committee (FSC).

Overview of the Project

The project had the following goals:

  • Determine information needs of potential stakeholders.

  • Define the data elements that address these needs and the scope of the system.

  • Design and develop a data reporting system for states to report on APS cases and policies to ACL.

  • Conduct a pilot of this approach from the perspectives of availability of data and of the ability to use the reporting system.

  • Summarize findings and recommendations on modifications or enhancements for the full implementation of a national system.

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Determine Information Needs

The EJA defines APS as: "such services provided to adults as the Secretary may specify and includes services such as--(A) receiving reports of adult abuse, neglect, or exploitation; (B) investigating the reports described in subparagraph (A); (C) case planning, monitoring, evaluation, and other case work and services; and (D) providing, arranging for, or facilitating the provision of medical, social services, economic, legal, housing, law enforcement, or other protective, emergency, or support services."7

APS was operationalized for the pilot system, in consultation with ACL, ASPE, and numerous stakeholders, as the services provided by state and local APS agencies to address allegations of maltreatment of older adults or adults with disabilities. As noted by the National Center on Elder Abuse, APS case workers are "first responders to reports of abuse, neglect, and exploitation of vulnerable adults."8 APS defines a vulnerable adult as "a person who is being mistreated or is in danger of mistreatment and who, due to age and/or disability, is unable to protect himself or herself."9

State and local agencies provide such services. According to NAPSA, in two-thirds of states, the state administration of APS resides in a department of social services. The remaining one-third are located within State Units on Aging (SUAs) or other state departments.10 In at least two states, the responsibility for investigating abuse of adults with disabilities is in an agency different from the agency that investigates abuse of older adults.

Following the model of the National Child Abuse and Neglect Data System, ACL decided that the source of data would be state agencies with responsibility for APS. Therefore the National Adult Maltreatment Reporting System (NAMRS) Pilot did not address maltreatment that may be the concern of the long-term care ombudsman program or investigated by other state or local regulatory agencies, such as licensing agencies. The primary focus of the pilot system was to be the persons who were the subject of reports alleging maltreatment.

To determine what the APS field defined as critical information needs, the project team convened key stakeholders to identify the data elements for a national system. The discussions focused on what data from state and local APS agencies are important for the field and the American public.

More than 40 state administrators, researchers, service providers, and other individuals in the field participated in stakeholder calls. More than 30 state representatives from 25 states met during three in-person working group meetings to discuss the uses of data and the key functionalities that should be included in a national system. The national system was named the national adult maltreatment reporting system (NAMRS). In this report, the version developed and piloted under this project is referred to as the NAMRS Pilot. The future version to be used for nationwide data reporting is referred to as the future NAMRS or just NAMRS.

During the stakeholder calls in April 2014, participants considered the following questions:

  • What are the highest priority questions or issues that you would like a national APS data system to be able to address? Why?

  • In addition to the data that are appropriate for all cases referred to APS agencies, are there data that are specific only to adults with disabilities, or only to older adults, that should be considered?

  • What are challenges to collecting and analyzing these data from state agencies? What are your suggestions for overcoming these barriers?

  • What other national datasets would be useful to consider as potential linkages to this system?

The team identified multiple crosscutting themes and implications from these calls:

  • Defining Abuse--all stakeholder groups were interested in the data system's ability to help the elder justice and persons with disabilities fields create a clear definition of vulnerable adult abuse and neglect. Thus, definitional issues were identified as being critical to the design of the system.

  • Learning about Victims and Abusers--all groups were interested in collecting demographic information about the client, along with the client's relationship to the alleged perpetrator. Stakeholders suggested that some of these data needed to address persons with disabilities specifically.

  • Describing and Informing APS Practice--stakeholder participants were interested in the data system being able to provide insight into APS practice, case outcomes, and types of interventions.

  • Affecting State and National Policy Issues--all groups expressed interest in using the data system to collect information on macro-level issues, which could impact state or national policy.

The participants in the state working group meetings were given the proposed data elements for consideration and comment. The meetings discussed in detail the elements and values to include in the system. Appendix A includes a sample agenda from these meetings. Other advice included:

  • Keep in mind the complexity of differences in programs from state-to-state.

  • Encourage state-to-state interaction as an invaluable experience in terms of learning what other APS agencies are doing.

  • Strive for consistent definitions.

  • Consider allowing states to comment with explanatory information throughout.

These meetings proved to be useful to the project team and the state participants. The state representatives praised the completed work and the value of hearing other states' perspectives, and expressed their excitement about the future system.

Define Data Elements

Stakeholder meetings helped to conceptualize the general design of the NAMRS Pilot as three components.

  1. Agency Component, data provided by all agencies.

  2. Case Component, case-specific data provided by agencies that have report-level tracking systems.

  3. Key Indicators Component, aggregated data provided by agencies that do not have report-level tracking systems or are unable to provide case-level data.

FIGURE 1.1. Component Overview
FIGURE 1.1, Organizational Chart: Top Level=Agency Component; Second Level, left side=Case Component; Second Level, right side=Key Indicators Component.

The project team conducted an intensive review of legislation, literature, various research surveys, and other national data collection systems. In addition, the project team conducted several interviews of leading experts on particular concepts or terminology. Chapters 2-4 discuss the data elements used in the NAMRS Pilot and Appendix B consists of the detailed data elements.

Design and Develop a National Reporting System

The NAMRS Pilot data collection components--including the website, database, data loader, and data warehouse--were built and run on the Microsoft Azure Cloud platform.

The system functionality of the NAMRS Pilot was developed and tested in five increments called sprints. Sprint 1 set up the NAMRS Pilot website with user login functionality, giving users access to announcements and resource materials. Sprint 2 added the ability to enter and submit Agency Component data. Sprint 3 added the ability to upload and submit Case Component data. Sprint 4 added the functionality to enter and submit Key Indicators Component data. The fifth and final sprint included reporting and analysis baseline functionality. For a schedule of activities, including major milestones and sprints, refer to Appendix C. Chapter 5 discusses the actual technical infrastructure of the pilot system and provides supporting documentation in Volume 2.

Conduct a Pilot

With the approval of the FSC, the project team invited several states to participate in the NAMRS Pilot. The objective was to invite states with diverse programs, administrative structures, populations, and geography to gain a broad understanding of capacity and variation among state programs. States agreeing to submit the Agency and Case Components included Colorado, Illinois, Maine, Pennsylvania, and Texas. States agreeing to submit the Agency and Key Indicators Components included Georgia, Massachusetts (Disabled Persons Protection Commission), Missouri, and Montana.

Technical assistance (TA) via phone and email was provided to the pilot states. Each pilot state had an assigned liaison, who served as the primary contact between the states and the NAMRS Pilot team. The liaisons were responsible for providing TA and reviewing data submissions. Liaisons had the task of helping states that were submitting the Case Component to cross walk or map data elements from their information system to the NAMRS Pilot data elements. A webinar explaining the data reporting processes for the Case Component was offered on December 22, 2014. Through these efforts, all nine states successfully submitted their respective data components to the NAMRS Pilot with the first submission at the end of January 2015, and the final submission in late May 2015. The Case Component collected data on a total of 109,204 investigations, which included 112,230 clients. The Key Indicators Component collected data on a total of 47,838 clients. Thus, the pilot collected data on 160,068 clients.11 Chapters 2-4 and Appendix D present additional information on the data submitted by each state.

Summarize Findings and Recommendations

During the project, the team identified several key principles for the future NAMRS:

  • The content of NAMRS will be based on current data collection reporting capacities among APS agencies throughout the United States.

  • The data content will also address aspirational objectives for expanding on the data that states routinely collect on cases, to improve services, program planning and management, and address critical gaps in knowledge at local, state, and national levels.

  • State agency administrative information systems will be the source of data.

  • Data will be reported based on screened-in reports for which the investigation and other activities were completed within the reporting period of the federal fiscal year (FFY), October 1 to September 30.

  • All state agencies will be encouraged to submit data once a year and participate to their maximum ability.

  • Submitting data to NAMRS will be voluntary.

  • NAMRS will not include information from licensing agencies or state ombudsman offices.

  • No personally identifiable information (PII) will be collected.

  • Additional safeguards on protecting confidentiality will be implemented during data validation, data management, and data analyses phases.

The remaining sections of the report present additional findings.

Outline of the Report

Chapters 2-8 of this report include the following information:

  • Chapter 2, Agency Component Data Elements and Recommendations, discusses the data elements, values and definitions of the NAMRS Pilot Agency Component, along with the findings from the pilot and recommendations for the future NAMRS Agency Component data elements.

  • Chapter 3, Case Component Data Elements and Recommendations, discusses the data elements, values, and definitions of the NAMRS Pilot Case Component, along with the findings from the pilot and recommendations for the future NAMRS data elements.

  • Chapter 4, Key Indicators Data Elements and Recommendations, discusses the data elements, values, and definitions of the NAMRS Pilot Key Indicators Component, along with findings from the pilot and recommendations for the future NAMRS data elements.

  • Chapter 5, Functionality and Architecture of the NAMRS Pilot, presents the system functionality of the NAMRS Pilot Website, database, and data warehouse, and the overall system architecture.

  • Chapter 6, Recommendations for Supporting the Future NAMRS, discusses the support provided to the pilot states and their reactions to this support, and presents recommendations for future support of states participating in NAMRS.

  • Chapter 7, Recommendations for the Functionality and Architecture of the Future NAMRS, presents recommendations for modifying or enhancing the NAMRS Pilot for full implementation.

  • Chapter 8, Next Steps, presents an overview of the next steps in implementing the future NAMRS.

Several appendices are also included:

  • Appendix A. Sample NAMRS Pilot State Working Group Agenda
  • Appendix B. NAMRS Pilot Data Specifications
  • Appendix C. Schedule of NAMRS Pilot Activities
  • Appendix D. NAMRS Pilot Data Submitted by States
  • Appendix E. Proposed NAMRS Data Specifications
  • Appendix F. NAMRS Pilot Validation Criteria
  • Appendix G. NAMRS Pilot Case Component Mapping Forms

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