The prevention of abuse neglect and exploitation is fundamental to overall health and wellbeing.1 Individuals with intellectual and developmental disabilities (IDD) experience greater degrees of abuse, neglect, and exploitation than the wider population over longer periods of time and from a greater number of abusers, which has a detrimental effect on overall health and wellbeing.2, 3 The deinstitutionalization movement was precipitated by a number of small tributaries that resulted in the exposure of horrific examples of abuse, neglect, exploitation, and inhumane treatment that characterized the lives of people with intellectual and developmental disabilities housed in large state and privately run residential “schools.”
What has only recently become part of the disabilities dialogue in the literature is that the majority of individuals with IDD have always, even throughout the institutionalization period, lived with their families. To that end, it is purported that many individuals with IDD experience various and multiple form of abuse and exploitation by family members and people with whom they are familiar and are responsible in some way for their care.3 Additionally, Salekin et al.4 supporting the work of Baladerian5 reported that individuals with IDD are three times more like to experience abuse than people without disabilities. Further, 50% of individuals with IDD do no report abuse, 80% of individuals that experience abuse know their abusers, and less than 10% of the reported cases of abuse result in an arrest of the perpetrator.5 The problem under review is that, given the prevalence of abuse, neglect, and exploitation of individuals with IDD, there are few models of detection and prevention that have been reviewed and evaluated in the literature6 and subsequently implemented in disabilities systems. That presents a significant need for innovative programs or policies that are designed to increase awareness of risk factors and thereby leading to a reduction in the prevalence of abuse neglect and exploitation of individuals with intellectual and developmental disabilities.
Description of the innovation
The Critical Case Review Committee (CCRC) is a sub-unit of PersonLink, a Supports Coordination Organization serving the southeast region of Pennsylvania. The committee is comprised of members from each level of the organization, including leadership and supports coordinators. The members of the committee are charged with the responsibility of utilizing a coordinated collaborative process to identify individuals who are at risk for abuse or neglect or present high-risk (HR) factors associated with abuse and neglect, and reducing levels of risk to the health and safety of individual participants and avoidable incidents.
In addition to developing the collaborative approach to problem-solving and addressing areas of risk, the CCRC is also responsible for establishing an internal incident management protocol that will proactively monitor, track and ensure the timely resolution of High-Risk/At-Risk cases, particularly those that result in a reportable incident as defined by the Office of Developmental Programs (ODP). There are no other identified programs within the southeast region of the PA IDD support system that are imbedded in a SCO designed to assess and reduce risk factors associated with abuse neglect and exploitation.
Purpose of the Evaluation
- To understand abuse, neglect, and exploitation of individuals with IDD from a social ecological perspective
- To evaluate a program designed to reduce avoidable incidences of abuse and neglect of individuals with IDD
- To understand the extent to which increased knowledge, awareness, and administrative support impact the ability of supports coordinators to identify and report risk factors for abuse neglect and exploitation
Program evaluations historically have the aim of identifying, through assessment and the gathering and review of program data, the worth or merit of a particular program or intervention or the value of the information itself.7 In addition to information about the program or intervention or its outcomes, program evaluation methods provide useful feedback for policy and further implementation decisions. In this case the data collected was used to determine if in fact the program itself has achieved the recommendations of the RCA and if the implementation of the program is effective and efficient. The evaluation strategy used in this study borrowed elements for each of the four major evaluation strategies outline by Trochim.7 As a qualitative evaluation the methodology is emergent and iterative.8 The evaluation of the CCRC adopted a mixed evaluation model. It was part summative, examining if the program implemented caused the observed outcomes, and part formative, examining how the program was implemented, as well as participant oriented, which identified how the participants experienced the innovation.
The formative evaluation found that the organizational context was supportive of the implementation of the CCRC while somewhat limiting in implementing the risk assessment tool itself. A policy was developed to make the risk assessment tool a required component of the Annual Review Meeting paperwork. Key strategies included open, transparent communication during the pre-implementation stage of the program. The administrators of the program used staff meetings, 1:1 supervisions and team meetings to introduce the critical case review committee and discuss its purpose and focus. Administrators were careful to ensure that the staff understood that the CCRC was designed to be a peer review process that would add the needed layer of specialized support to the daily work staff does with high-risk cases.
The findings from the summative evaluation found an increase in the awareness of risk factors among staff. The increase in awareness of risk factors was determined from a pre-test post-test design where awareness among risk factors among staff in the pre-test was approximately 65%, and the post-test scores for awareness of risk factors was 87%. The evaluation focused on the participants, their experiences with the program, and consistent themes emerging from the one-to-one interviews and focus group discussion. Key findings from the participant-oriented evaluation include development of two types of participants: voluntary and involuntary.
Voluntary participants were supports coordinators who attended the standing committee meeting to seek assistance for a difficult case. Involuntary participants were staff who were mandated to come before the committee to discuss a case where risk factors were identified either through a review of service notes by the committee or as a result of a reportable incident. While different themes were identified based upon the category of participant there were consistent, overlapping themes expressed by both voluntary and involuntary participants. Both types of participants stated that they felt supported during incidents with their consumer or challenging situation. Both groups of participants also reported that the process was time-consuming. The most important theme shared by both voluntary and involuntary participants is that they felt more in control and better able to respond to their consumers when risk factors began to present themselves or during an unexpected incident.
Multi-level thinking, shared leadership, the empowerment of small groups, and the decentralization of authority in key areas of responsibility are characteristic of organizations that operate in relatively open systems environment and are consequently better able to adjust to a rapidly changing environment which is infused with complexity. The Critical Case Review Committee is charged with the responsibility of identifying high-risk (HR) or at-risk (AR) cases and use a coordinated team approach to address areas of concern with the individual’s set of supports services and team members. In addition to developing the collaborative approach to problem-solving and addressing areas of concern, the CCRC is also responsible for establishing an internal incident management protocol that will proactively monitor and track and ensure the timely resolution of High-Risk/At-Risk cases. The social impact presented by this program includes the development of a set of best practices for handling high-risk and at-risk cases within intellectual and developmental disabilities systems as well a more collaborative, ecologically-based approach to reducing and preventing incidents of abuse, neglect, and exploitation of individuals with IDD. Future directions of the program include:
- Publication of training manual for incident management for case management professionals
- Expand CCRC to county-level peer review process
- Develop risk prevention guideline for families of individuals intellectual and developmental disabilities
1. “Protecting People with DD from Abuse and Neglect: A Guide for Family, Friends and Guardians,” Arizona Center for Disability Law (September 2008), accessed March 20, 2017, https://www.azdisabilitylaw.org/wp-content/uploads/2016/04/DDD1-PL-New-Logo.pdf.
2. Edward F. Ansello and Peggy O’Neill, “Abuse, Neglect, and Exploitation: Considerations in Aging with Lifelong Disabilities,” Journal of Elder Abuse & Neglect 22, no. 1-2 (2010): 105-130, doi: 10.1080/08946560903436395, 2010.
3. Willi Horner-Johnson and Charles E. Drum, “Prevalence of Maltreatment of People with Intellectual Disabilities: A Review of the Recently Published Research,” Mental Retardation and Developmental Disabilities Research Reviews 12, no. 1 (2006): 57-69.
4. Karen L. Salekin, J. Gregory Olley, and Krystal Hedge, “Offenders with Intellectual Disability: Characteristics, Prevalence, and Issues in Forensic Assessment,” Journal of Mental Health Research in Intellectual Disabilities 3, no. 2 (2010): 97-116.
5. Nora J. Baladerian, Thomas F. Coleman, and Jim Stream, “Abuse of People with Disabilities:
Victims and Their Families Speak Out,” Disability and Abuse Project (2013), accessed March 20, 2017, http://disability-abuse.com/survey/survey-report.pdf.
6. Emily M. Lund and Marilyn Hammond, “Single-Session Intervention for Abuse Awareness Among People with Developmental Disabilities,” Sexuality and Disability 32, no. 1 (2014): 99-105, doi: 10.1007/s11195-013-9335-3, 2014.
7. William M. K. Trochim, “Positivism and Post-Positivism,” Web Center for Social Research Methods (2006), accessed March 20, 2017, https://www.socialresearchmethods.net/kb/positvsm.php.
8. Michael Quinn Patton, Qualitative research and evaluation methods (Thousand Oaks, CA: Sage, 2002).