Self-Neglect Knowledge, Policy, Practice & Research: Realities & Needs: The NAPSA ACL Elder Justice-Funded Project
by Holly Ramsey-Klawsnik, PhD, LCSW, LMFT, National Adult Protective Services Association
Since 2016, the National Adult Protective Services Association (NAPSA) has been conducting the U.S. Department of Health & Human Services Administration for Community Living Elder Justice Grant Project (#90EJIG0008-01-00), “Self-Neglect Knowledge, Policy, Practice & Research: Realities & Needs.” This encompasses: (1) a systematic self-neglect literature review, (2) APS program national survey research, and (3) an exploration of innovative APS practices related to self-neglect. Goals are to: (1) increase knowledge regarding both self-neglect and APS program response and (2) inform policy, practice and research.
Systematic Literature Review
The review identified and analyzed adult self-neglect research published in the US between 1996 and 2017. Out of over 3,000 initially identified potentially relevant works, 73 met inclusion criteria requiring use of qualitative and/or quantitative research methodology and publication of findings in a peer-reviewed professional journal. On behalf of the National Committee for the Prevention of Elder Abuse, consultant Patricia Brownell, PhD, led the search. Guiding questions were: 1) What implications for policy, practice, and research relevant to adult protective services exist in the self-neglect literature? 2) How can the existing literature inform and promote evidence-based adult protective services practice?
That only 73 of over 3,000 scholarly works were published over the search period reflects significant unmet need for scientific study to better understand, prevent, and respond to this problem. Furthermore, almost none of the works addressed self-neglect among adults with disabilities under the age of 60.
APS Program National Survey Research
In 2017, the Self-Neglect Adult Protective Services (SNAPS) questionnaire was developed, piloted, revised, and distributed nationwide to state and territory APS programs to collect self-neglect report and program response data. We were grateful to obtain a 100% response from state APS programs. Andrew Capehart, then NAPSA Assistant Director, played a large role in this project component. We have amassed a rich database and are cleaning the data, running correlations, and testing various hypotheses. Where meaningful, we are comparing SNAPS analysis findings to literature search findings. Jason Burnett, PhD, of the UTHealth McGovern Medical School, serves as consultant, content expert, and statistician. We are quantitatively and qualitatively analyzing the resulting treasure-trove of data to determine overall trends and identify policy, practice, and research implications and meaningful correlations and associations.
Currently, we are updating our findings regarding case/client assessment and measurement tools and scales used by APS programs. This practice area is addressed in the Final Voluntary Consensus Guidelines for State Adult Protective Services Systems, “It is recommended that APS systems create and apply systematic assessment methods to conduct and complete a needs/risk assessment... APS programs are encouraged to utilize standardized and validated assessment tools” (ACL, 2016, p. 34). The project’s findings to date reflect unmet needs for “standardized and validated assessment tools” which has prompted our work to update our tools findings.
Innovative APS Practices
Over one-quarter of APS programs responded affirmatively to the SNAPS question: Do you use one or more innovative practices to prevent or respond to self-neglect cases? Analysis of follow-up probe responses regarding self-neglect case practices led to site visits to explore their innovations.
A classic struggle among APS and other professionals is to successfully engage clients with substantiated self-neglect in an effective intervention plan. It is important to note that clients, “...who have capacity retain the right to refuse any service, treatment, intervention, or referral offered by APS” (Ramsey-Klawsnik et al., 2018, Intervention Collaboration). Despite this struggle, an encouraging finding was reported by Booker and colleagues (2017) who examined elder self-neglect client satisfaction with APS services. They found that about 75% were satisfied with overall services and felt that the services were responsive to their needs and helped them to deal with their problems.
All NAPSA self-neglect project findings will be reported as the project wraps up in the fall of 2019. Final analysis is now occurring and dissemination efforts are being planned and delivered.
Administration for Community Living. (2016). Final Voluntary Consensus Guidelines for State Adult Protective Service. Washington, DC: US Department of Health and Human Services Administration for Community Living.
Booker, J. G., Breaux, M., Abada, S., Xia, R. & Burnett, J. (2018). Assessment of older adults’ satisfaction with adult protective services investigation and assistance. Journal of Elder Abuse & Neglect, 30. 64-74. doi: 10.1080/08946566.2017.13.