Ensuring the safety and well-being of individuals with disabilities is a critical responsibility of state agencies. People with intellectual and developmental disabilities nationwide are 7 times more likely to be the victim of abuse and neglect (2). To effectively prevent and respond to abuse and neglect, state agencies need robust and accessible reporting options and should ensure that people with disabilities are involved in decision-making processes at all levels.
Federal investigations have found that states’ reporting structures are not
adequately meeting the expectations for health and safety for people in long-term
care.

The HHS-OIG found that several states did not comply with federal waiver
and state requirements for reporting and monitoring critical incidents involving
HCBS waiver individuals. CMS found that states have not been meeting their
1915(c) waiver assurances regarding health and welfare. A GAO study found large inconsistencies between states in their definition of a critical incident and their system’s ability to report, track, and collect information on critical incidents that have occurred (3).

Beyond robust reporting structures, states need to take a proactive approach
to preventing abuse and neglect by addressing the indicators of abuse and neglect before an incident occurs. The National Core indicators lists the main predictors of abuse and neglect as:

• Social isolation (lack of friendships and relationships beyond paid staff)
• Social stigma related to a lack of respect for people with disabilities
• Lack of privacy within the residence
• Ignorance of individual rights
• Staff stress and lack of training
• Significant dependence on others
• Lack of control/decision-making
• Lack of community participation (4)

These indicators can be addressed by states through their contracts with disability service providers and by standardizing training for people who work within the systems on rights and knowing the signs of abuse and neglect.

Ensuring rights protections through education and human rights committees are critical steps to reducing incidents of abuse and neglect. The Council on Quality and Leadership (CQL) found that people with disabilities are 3 times more likely to be free from abuse and neglect when they are able to exercise their rights (5).

In Wisconsin, the project closely collaborated with the Department of Health Services and other agencies to enhance reporting mechanisms. The project made several recommendations specific to the siloed and chronically underfunded incident reporting system, which were outlined for policymakers in a report in 2023 as part of its policy work around the biennial budget. Additionally, the project undertook efforts to align laws on elder abuse and abuse of people with disabilities, working to ensure consistency and parity across the state’s 72 counties. Legislation was passed to require equivalent investigatory steps by Adult Protective Services for both populations.

The project made recommendations on contracts between the Department of Health Services and Managed Care Organizations to clarify service providers’ responsibilities regarding abuse and neglect claims and on the ongoing
development of an improved, real-time incident management systems. Partners continue to work on expanding an elder abuse hotline to include people with disabilities. The project emphasized elevating the voices of individuals with lived
experience and their involvement in decision-making processes, emphasizing the importance of accessible information.

The Living Well grant has been focusing on rights education for people with disabilities, families and guardians, and service provider staff. The grant created 3 individual guides to provide education in 17 different rights areas. The grant policy team has also been working on embedding rights education and rights preservation in Long-Term Care contracts for home and community based wavier agencies.

The Living Well grant collaborated closely with its statewide self-advocacy organization, People First Wisconsin. Through this partnership, self-advocate leaders were out in communities training on rights and self-advocacy where they were hearing from people with disabilities about their problems reporting or resolving incidents of abuse and neglect. People with disabilities reported feeling safer telling other self-advocates about their experiences than disability service providers. This information led to the development of several grants for People First Wisconsin that focused on increasing their staff, trainings, and presence across the state including a Sexual Violence Prevention grant and an ARPA grant focused on plain language. It also led to the development of a peer mentoring program that the project is working to imbed as a long-term care service code.

Enhance Reporting Systems: Implement accessible and user-friendly reporting mechanisms, such as hotlines, online platforms, and easy-to-understand reporting forms. Provide multiple avenues for reporting, recognizing that individuals with disabilities may have diverse communication needs. Reporting systems need to be accessible 24/7 and have clear data sharing agreements and feedback policies so that the person with a disability feels satisfied that a
resolution to their incident was achieved.

Culturally Responsive Practices: Ensure that reporting options are accessible to people of all backgrounds, including non-English speakers, people with disabilities, and those from marginalized communities. This may involve providing translation services, TTY/TTD services, and culturally sensitive support staff. Develop response strategies that are equitable and do not further harm vulnerable populations. This includes considering the cultural, social, and economic context in responding to incidents of abuse and neglect. All data collected and analyzed on abuse and neglect cases should look for disparities in reporting, response, and outcomes based on race, ethnicity, gender, disability, or other identities.

Policy Review and Adaptation: Regularly review policies and their implementation to ensure they are effectively addressing the needs of diverse populations. Be open to making changes based on feedback from communities and the latest research on best practices.

Increase Funding: Investigative agencies need to be fully funded in order to meet the demands of increased levels of reporting and the increased complexity of cases. Staffing shortages and high turnover rates need to be addressed
so that a majority of reports are being investigated. Funding increases also allow for improved reporting systems that allow investigative entities to track and trend in real time and respond to emerging issues.

Training and Awareness: Require comprehensive training programs for agency staff, caregivers, and relevant professionals on recognizing signs of abuse and neglect specific to individuals with disabilities. Require potential
guardians to undergo training that includes an explanation of alternative legal options to guardianship. Develop awareness campaigns targeting both the general public and the disability community to promote reporting and foster a
culture of vigilance against abuse.

Policy Development: Develop comprehensive language in contracts with service providers that address abuse prevention and response. Consider pay-for-performance options that incentivize agencies and caregivers for
maintaining high standards of care and preventing abuse. Require rights assessments of people who are receiving services to determine what rights education and ongoing support is necessary as a way to prevent abuse and neglect.

Inclusive Decision-Making: Establish advisory committees or councils that include individuals with disabilities, their advocates, and representatives from disability organizations to actively participate in decision-making processes.
Seek input from individuals with disabilities when developing policies, procedures, and guidelines related to abuse prevention and reporting.

Strengthen Advocacy Organizations run by People with Lived Experience: Make granting procedures accessible so that advocacy organizations that are staffed by people with disabilities have the opportunity to successfully apply for
funding. Include advocacy organizations in committees and workgroups designed to improve reporting systems or on interdisciplinary teams.

Building Relationships and Identifying Champions: Cultivate relationships between state agencies, disability organizations, and advocacy groups to strengthen collaboration in preventing abuse. Within government agencies,
foster a collaborative environment of data and trend sharing to break down silos of information that prevent systemic improvements. Identify and empower internal champions within state agencies who are committed to advocating for
the rights and safety of individuals with disabilities.

Accessible Information: Disseminate information about abuse prevention, reporting options, and available support services in accessible formats, including Braille, large print, easy-to-read materials, and multimedia resources. Ensure
that information is available in multiple languages to cater to diverse communities. Accessible information should be co-created with people who have lived experience.

Legal Protections and Advocacy: Advocate for and enforce legal protections that specifically address the rights and safety of individuals with disabilities. Collaborate with disability advocacy organizations to strengthen legal frameworks and ensure robust enforcement of anti-abuse regulations. Identify and address disparities between protections for other vulnerable groups, like elders, and work to achieve parity in the statutes.

Community Engagement: Foster partnerships with disability organizations, community groups, and support networks to create a community-wide approach to preventing abuse and neglect. Host community conversations to engage
with individuals with disabilities directly and gather feedback on the effectiveness of prevention measures and local resources that can improve community engagement.

Monitoring and Evaluation: Establish a system for continuous monitoring and evaluation of abuse prevention efforts. Regularly assess the effectiveness of reporting systems, outreach initiatives, and decision-making processes to identify
areas for improvement.

Education and Empowerment Programs: Access to education on self-advocacy and rights protection for individuals with disabilities is key to empowering them with the knowledge, skills, and resources to recognize, report, and protect themselves from abuse. Allow people with lived experience to be paid as peer mentors to train and support others to access the rights and learn about self-advocacy, abuse and neglect prevention, and being involved in their communities.

Incident Management Analysis Tool – The goal for states is to reduce eliminate incidents, and to minimize preventable incidents from occurring. A robust incident management system (IMS) allows states to proactively respond to incidents
and implement actions that reduce the risk and likelihood of future incidents. This tool allows states to assess the strengths and weaknesses of their incident reporting system.

Human Rights Committee – States have varying frameworks and regulation around Human Rights Committees. Some states do not have any regulation around Human Rights Committees at all. CQL offers a webinar and FAQ on developing effective Human Rights Committees.

Living Well Report on Abuse and Neglect– This report outlines the research and recommendations for the state of Wisconsin on how to improve its reporting systems.

Let’s Talk About Rights Guides and Videos – People with disabilities should be allowed to have and do all the same things as people without disabilities. When people understand their rights, they have better lives. These WI BPDD Living Well guides and videos can help agency staff, guardians and people who receive support learn about rights.

Safe and Free Meetings – The WI BPDD Living Well Safe and Free meetings are designed to help youth and adults with Intellectual and Developmental Disabilities (I/DD) learn about important topics and skills for self-advocacy, safety, and independent living. A self-advocate leader and an agency staff should co-facilitate the meeting series. The topics include – Knowing Yourself, Being Part of Your Community, Rights, Voting, Problem Solving, Communication, Abuse Awareness, Safety at Home and in the Community, and Healthy Relationships. There is a facilitator guide, workbook, and PowerPoint for all twelve meetings in the series.

Alternatives to Guardianship– This guide from WI BPDD provides important information about empowering individuals with disability and aging adults to make informed decisions about their life that protect both their rights while ensuring their safety and privacy.

Community Conversations – Community Conversations are a highly effective way to bring people together to raise awareness and identify partnerships and solutions to issues affecting the lives of people with disabilities. Wisconsin has successfully used Community Conversations in Living Well and a number of other disability-focused projects, which have resulted in positive impacts on attitudes, engagement, and collaboration. This guide was developed by the Waisman Center.

SARTAC–The mission of Self Advocacy Resource and Technical Assistance Center (SARTAC) is to strengthen the self-advocacy movement by supporting self advocacy organizations to grow in diversity and leadership.

NAPSA APS Training– NAPSA, Arizona APS, and APS Workforce Innovations have developed a core curriculum around practice and supervisory issues in Adult Protective Services. These training modules are available nationally for all APS organizations to use to advance workforce skills, supervisor competencies and knowledge.

Download the Reflection Activity to make your Improving Abuse and Neglect Response Action Plan!